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Happy Valentine’s Day

Our Army of Women is now 268,000 members strong, and I’m sending heartfelt Valentine’s Day wishes to each and everyone of you.

Valentine’s Day is all about love and commitment, and the commitment each of you has shown to this effort surpasses anything I might have imagined.

I also wanted to let you know that I’ve just begun working on the 5th edition of my Breast Book, which will incorporate everything that we’ve learned over the past four years. And, of course, it will mention our amazing Army of Women!

What would you like to see in the next edition? What do you find most confusing about breast cancer prevention, detection, and treatment? What do you feel your doctors don’t tell you enough about? I look forward to coming back to this blog to read your suggestions!

And for those of you who might be interested in moving from participating in research to advocating for more money nationally and a different research agenda, you might want to look into the National Breast Cancer Coalition Advocacy Conference in Washington, DC May 2-5, 2009. This is a group I helped start in 1992 and it is responsible for much of the success in the breast cancer movement. I will be at the conference as will breast cancer advocates from around the country and scientists who realize the importance of working together. To learn more, click here.

Judy said...

I would like women to know that even if they do a self breast exam monthly that they still need to keep up with their mammographies. I had a mammogram in the fall last year which showed calcifications that would have never been felt with a breast exam. Luckily after undergoing a Stereotactic Biopsy, I got the good news that they were benign. Calcifications cannot be felt and some are benign but thy can also be cancerous.

Phyllis said...

I’m going through Chemo with my Mom. She’s 82 years old. I began to notice she gets confused a lot. She gets very upset. So I did some internet research and discovered that her problem could be attributed to what is known as “Chemo Brain”. After researching everything I could find, I sat down with Mom and explained what I found on the internet. Then we discussed it with her Dr. who seemed impressed that we researched it ourselves. My wish is that I’d much rather have learned it from him than to have to experience it and begin a search for an answer. Also, her right arm is swelling and all the Dr. says is, “Yep, that’s from the chemo too”. Well, we pretty much figured that out ourselves. No suggestions as to what to do about it or even IF there was anything to do. Beginning to feel as though we have to pull every bit of information out of him. If that is what its going to take then OK we can do it, we’ve no other choice do we?

Anne said...

I would like to know more about the link between late effects of radiation for Hodgkin’s Disease and the breast cancer. I learned about the link because I serve as a community member on our local hospital’s Institutional Research Ethics Board for Adult Oncology. I had never learned about the link from my highly competent physicians. I’m not sure how “worried” I should be about the likelihood that I could develop breast cancer as a consequence of radiation treatments that I had 25 years ago. I guess what I’d like also to know is how radiation alters the underlying biological processes and how those changes may ultimately induce cancers of the breast. In addition, what treatment options would be recommended for individuals with a history of medistinal radiation.

Julie said...

Dear Dr. Love,

I just have to thank you for your book. I am 63 years old and I was diagnosed 2 years ago - no family hist. no risk factors, 8mm - caught on routine mammo - lumpectomy, clear margins, sentinel node disection - clear, mammo-site radiation, onco-dx - 32, Her/2 positive, Estrogen positive, so had chemo and Herceptin AND if it had not been for your book I truly could NOT have made it through! You are my hero! I have bought at least a dozen copies of The Breast Book for daughters and friends and will definitely be buying the 5th edition! You were my strength, my courage and kept me smiling through it all! I am filled with gratitude for you and the sacrifices you have made in your life to be able to do what you do so well. Thank you!

I would love to see space in the 5th edition which would include living with the aftermath of chemo. My body did not like chemo - I literally about died a couple of times. I had to discontinue the Taxol after 3 infusions due to the neuropathy - which I still suffer with in my feet - but thankfully the legs have recovered. After 47 weeks of the 52 week protocol of Herceptin my oncologist stopped as I had moderate hearing loss in one ear. It has not come back. The Arimidex is making my joints extremely “grouchy” and I have had multiple steroid injections in both thumbs, elbow and now the pain is spreading to my knees and hip. The libido is gone. “Chemo brain” is getting a little better as is the fatigue - although somedays it is still a battle. Most books I read minimize the reality of life after chemo and say exercise and eat fruits and vegetables. We all know that! What we survivors really need is someone to recognize the reality - or our new “normal” - and cheer us on. If there aren’t any other suggestions besides exercise and eating right, fine … but please don’t minimize the very real “new normal.” I am grateful for a wonderful husband of 42 years that is a saint, and a wonderful family who have provided great support … and YOU! Thank you again for all you do! You are truly WONDERFUL!!!

Juanita said...

I would like to caution women that have had breast cancer and radiation treatment. When considering surgery later, (9 years in my case), please have your surgeon be specific about the possible adverse effects. My doctor said, in a very casual and non alarming way, (my husband was present and also not alarmed) that “radiated tissue takes longer to heal and is more prone to infection.” If the seriousness of this possibility had been made clear to me, I might have avoided the 11 months of treatments for infection, which, for two of those months were administered via continuous infusions of antibiotics 24/7. I was treated for a total of one year to clear this up. In hindsight I should have asked for statistics, referrals, and a second opinion, but his was, and is, a highly respected plastic surgeon in my rather small area. I hope this may save someone from a like experience.

Jill said...

I would like to see fertility preservation mentioned. I feel that many oncologists overlook fertility issues with young breast cancer patients and it’s so important to be discussed, even if treatment will not affect fertility, this should be mentioned. There are great websites to reference, like fertilehope.org or myoncofertility.org that can help with the decision making process. Breast cancer patients who are having surgery prior to chemotherapy have a great window to have any fertility treatments during this time. Also, the controversial topic of using stimulating hormones if the patients breast cancer is ER/PR positive should also be mentioned. I find it interesting that many oncologists will have an opinion about a patient having an egg harvest, but don’t discuss if the patient should carry a pregnancy…

linda said...

As a three time breast cancer survivor, and a tram flap patient, I would like to see better long term possible compications given to patients. Had I known that the condition I now find my self in was looming 5/6 years after my operation, I do believe I would not have had this operation. The feeling of heaviness, like a 100 pound weight around my stomach, was never mentioned, and when I saw him last year, to ask specific questions, I was not given an answer. I had to go to a breast cancer website and get an answer from a Dr. there. In 3 days I got an answer I could not get from my own plastic surgeon..Shame on him.

Cheryl said...

More emphasis on brain tumor metastasis and the brain’s blood barrier that chemo does not penetrate. To be aware that headaches are a warning sign.

Margaret said...

I will be a 10 year survivor in April. I would like to see more information on long time survivors and long term effects of chemo, radiation, and medications that have kept me alive. I have been taking Arimedix for 7 years and would like to see what research says about this. Since I had node positive my oncologists wants me to take it for 10 years..would like to know more about long term survival and breast cancer drugs. What about including a section on double mastectomy patients who have not had reconstructive surgery. It would also be nice to have something on aging after breast cancer, what one should be concerned about and what is just part of the normal aging process. I often wonder if other medical problems that I have had are related in some way to the treatments and medications that I have received as a breast cancer patient. I guess as there are more survivors there will be more questions about what happens after having breast cancer.

Rachel said...

One question I’ve had for quite a while is exactly how much higher of a risk family history can cause. Does having it in two generations on both sides of the family make me at a higher risk than, say, someone whose family history is only in one generation on one side? Both my mom and grandmother are survivors, and I was first told that I’m considered high risk at the age of 13 (I’m now 21 and will enter high-risk testing in about 6 years).
I also just want to say how much I appreciate this “army”-I find it rather exciting to be positively involved in something that has effected my life in so many ways. =]

Robin said...

My oncologist recommended that I make sure I am taking Vitamin D and my Boniva after the data was presented at the oncology conference last Spring showing less recurrence of breast cancer with Reclast and Vitamin D3. She believes the study showing a decrease of recurrence of breast cancer by taking Reclast would include the class of all bisphosphanates even though all of them were not studied. I was already on Boniva for Osteopenia and my latest bone density showed an improvement even with me being on Arimidex. It would be nice to hear your thoughts on the above info. The Vitamin D issue is very confusing. We have a physician friend in research who says we should be taking at least 2000 IU of Vit D3 now. My Calcium Citrate gives me 400 in each tablet and I take 2 in the AM and 2 in the PM plus my multivite which has 400. Before I really checked how much vitamin D was in all of this, I had been also taking an additional 1000 IU of Vitamin D3 AM and PM for a total with the rest of the calcium and multivite of 4000 IU daily. When I realized this, I got a blood test for the level of Vitamin D3 done and was right in the middle even taking 4000 IU of Vitamin D3 daily. I have forgotten the name of the test but it was a weird name. I have since cut back to the amount in my calcium and multivite but there is no standard recommendation for Vitamin D3 now that they have learned that many newly diagnosed breast cancer patients have low D3 levels. The old standard certainly isn’t good since 400 IU is in a multivite and most woman are on this and still too low. I had read that a Cancer Society physician speaking about low D3 levels was recommending 1000 IU daily but could not find the site when I was trying to find it again so I even wrote to the Cancer Society to get a definitive answer from them but got a generic response with no recommendation just check with your Dr. Guess what, no one really has the answer to this. Could you address this please? How often do you think we should have the D3 levels checked once we are taking it?
Thank you for helping to find the cure for all of us.

Cathy said...

After surviving breast cancer, a modified radical mastectomy & 6 months of chemotherapy 25 years ago, I found out in December, 2008, that my breast cancer had metastasized to my lungs & bones. I still can’t believe it & can barely type these words. I started chemotherapy in Jan & I feel great, so far. I want women to know that in 2008 I had 3 chest xrays, 2 mammograms & 2 sonograms - all normal. How frightening is that! If it wasn’t for my dermatologist removing a small growth under my hairline that contained the breast cancer cells, I would still be thinking how lucky I have been & that I must be cured. Oh, to go back to those times of normalcy.

Patricia said...

Going through mastectomy, tram flap,chemo,radiation, and herceptin over a year and a half would have been impossible without yoga and guided meditation.
A section on simple yoga poses and references to some guided meditation would be helpful.

LaVerne said...

9 yrs ago I had blood drips on my night gown I did not realize where it was coming from untill I found it on my bra one day. I had just moved to a new city and of course no DR. I found one that took over and got me in the right places, They ran a wire into the nipple (no it didnt hurt)not sure what that was for.
then they sent me to a surgeon who did a byopsy by surgery, it came back carsonma insitu. Which Means the cancer cells had not spread, The surgeon told me I had three choices 1.remove the breast. 2. radiation. 3. Tamoxifen. I asked him if it were his wife etc. which he would recomend he said the Tomoxifen. So I took it for serveral months, then my nerves started acting up I felt like I was on a tight wire. I was stressed to the max. DR. took me off of the mendication. That was nine yrs ago and I have had serveral lumps removed since then and no more cancer cells, and no other treatment.
I feel like since it was carsonma in situ that I am not sure what to tell my three granddaughters other than what it was, but does that mean that I did have breast cancer? And does that make them at a higher risk. It just doesnt seem clear to me. My mother had the calsvacation, and I have a distant cousin that died from breasst cancer.
Thank you for all you are doing.
LaVerne

Betty Jo said...

I’d like to see some space dedicated to all the medical abbreviations used in the b/c lab reports, biopsies, surgeries, etc - also their significance. Some of these reports are a couple of pages long & are next-to-impossible to decipher (and you hate to bug your surgeon or oncologist to explain ALL of them.)

Barbara said...

I would also like to see a lot more information about post mastectomy reconstruction options, complications and residual problems. Like how much discomfort using stomach fat causes in your abdomenn. I had a modified radical mastectomy and chemotherapy two years ago and am still debating the options, including doing nothing but conti self exams. Having a strong family history of breast ca I’ve had annual mammograms since I was 30. At 58, I was a month shy of my annual one when I found the lump myself.

Kelley said...

I would love to see Dr. Love’s opinion on what each of us can do to decrease our chances of developing this disease. I’m not talking about taking a drug, but such things as avoiding trans fats and other dietary bad boys and living a healthy lifestyle. It would be very interesting to read what she herself does to minimize risk.

Ellen said...

I founded the northern CA chapter of Necessities Bag after my bilateral mastectomies & reconstruction in 2005. Every week I receive notes from women who had no real idea what to expect after their mastectomies. Their doctors did not take the time to explain how sore they would be, how the chest muscles would ache from vigorous upper body activity years later, how they would go through a period of mourning for their lost breasts, how they would never again have any sense of feeling at the surgical sight. If only doctors would take the time to really communicate with their breast cancer patients about these issues, and others that arise as a result of breast cancer surgery and treatment. Once treatment is over, we are left to our own devices and have to educate each other. Thank you for blogs like this and support groups where we can learn from each other’s experiences. Our medical community on the whole does not help us with these very personal issues. This is indeed a shame.

Barbara said...

I’d like more info on the effects of chemo (long and short). I have a daughter being treated in Ill. and has had a partial mastectomy. She’s undergoing chemo with 3 more treatments to go and will have breast reconstruction later. I was there in Oct., however it’s so hard being so far away. No petscan has been done thus far to see if the chemo has worked. Should’nt that be done? I’d like Dr. Love to reply and thanks so much for all you’ve done for all women
Barbara

Linda said...

Please more information regarding the connection between HRT & Breast cancer. There seems to be still more confusion and shows like Oprah are very misleading with Suzanne Somers, Robin McGraw just trying to sell their books. How any doctor can prescribe this poison is beyond me.
Thanks, looking forward to the 5th edition!

Elizabeth said...

Please tell us more about survivorship and the ambiguous phrase “in moderation.” One example: I read that survivors should drink alcohol only “in moderation” — what does that mean? One drink a week? A month? A Year? Another example comes from exercise and avoiding lymphodema– use your surgical arm “in moderation.” I’m frustrated by the conflict between the advice to “just go on living your life”, but do so “in moderation”; and the urging to lose weight and exercise, but don’t use your surgical arm. Some guidance would be of great help. And thank you for all the work you do.

Miarka said...

I would like to understand the impact of previous radiation on new breast cancer. I was diagnosed in 1999 with Lobular invasive. I was treated with CMF radiation and Tamoxifen. In 2008 a routine mammogram picked up suspicious calcifications in the same breast. This lump could not be felt due to the hardening of the radiated breast over time. I had a mastectomy and TRAM flap reconstruction. This was ductal invasive and bigger than the first one. What effect did the previous radiation have? Also, I would like the National Guidelines to be updated to include more reasons for lymph node excision to be optional. I refused to have this done this time as the area had been previously radiated and my research suggested that my risk for lymphodema was over 50%. My oncologist agreed with me, however nurses and surgeons throughout the system spouted the same line about elastic sleeves and physiotherapy. The Guidelines only allow for patients with particularly favorable tumors, patients for whom the selection of adjuvant systemic therapy is unlikely to be affected, for the elderly, or those with serious comorbid conditions. They should include previous radiation to the area as well.

By the way, I have been accepted for a clinical trial comparing effects of Arimidex and a biphosphonate, however, I’m not convinced about taking the Arimidex.

I gave your book away to a cousin who has just been diagnosed. Looking forward to the updated version.

Nancy said...

Thank you for reaching out.
I am interested in more information on multiple cancers when Breast cancer is the first - there doesn’t seem to be an umbrella specialty that weighs pros and cons of effects of treatment on various cancer recurrence potential.
I am interested in learning the risk/benefit of different treatment options - for example the benefit of hormone therapy may be quite low while the effects are significant visual memory impairment and verbal impairment. And hormone therapy is a one time treatment - why not wait until it can truly add months?
Is nanomedicine delivery coming to breast cancer any time soon?
Are studies underway on the health risks of routine MRI?
Finally, mortality rates have hardly declined for breast cancer since 1990 - how do patients measure the benefit of costly difficult treatments?
Thank you , Nancy

Lindy said...

I had bilateral tram surgery four years ago to close my chest after an extreme radical mastectomy brought on by a radiation induced sarcoma. This skin graft was brought up to my left collar bone, under under armpit and also my chest area ~ the skin was not used to reconstruct a breast but for skin graft purposes. My left shoulder and torso have been miserable ever since. I’ve done physical therapy but there’s only so far one can get that muscle to stretch. I stand straight but am in constant discomfort/pain. I don’t know what the statistics are on bilateral tram surgery for breast reconstruction and adverse side effects but I know that if I knew then what I know now I never would have done this surgery. I would have had them graft skin from anywhere without trying to stretch a muscle beyond what’s reasonable. Do you know of any studies done on bilateral tram surgery and the comfort level of women after these surgeries?
Thank you, Lindy

Joann said...

Before I had my mastectomies I looked everywhere I knew to try and figure out what would I look like afterwards (no reconstruction). Most sites that even have a picture are plastic surgeon sites that show their BEST work. I also wanted to see a variety of bodies, not just stick-women that are better surgical models. I’m happy with my surgery. But it would have been nice to see some TYPICAL outcomes. I also never understood about “dog ears” and I have learned at my support group that many thought them very annoying and awkward. I had one that was big and fat like me. Because I did not opt for reconstruction, my insurance paid to have a surgery to get rid of my one annoying dog ear. Women need to know there are options like that. My support group was totally bowled over that you could go get a “scar revision.” I don’t look like ME, but I don’t look hidious either. I’m happy with my surgical outcome. I sure would like to have seen some pictures though before the surgery — with realistic women of various sizes. Thanks for ALL you do to make this subject more understandable and clear. Understanding is the key to fear. If I know my enemy, I can prepare myself and not be as anxious in the battle.

Donna said...

I have not read your book yet but plan to do so. I had a lumpectomy, and re-excision, removal of sentinal node, clear margins, followed by 32 radiation treatments in 2006. Yearly mammograms look excellent. A year ago after I noticed pain in my breast, my oncologist and physician explained that this is normal when nerve endings start to grow back in the surgical site and radiation treated areas. These pains could continue for years. I wish someone had explained that to me earlier so that I would not have worried so much. The pains are getting better. I lead a very active life style including playing golf several times a week, gardening, lifting weights at a health club, walking 5 miles every day. When the pain was at its worst I really worried that the cancer had returned. A few days of extreme panic before I could get in to see some one. If more was explained about after effects of radiation it would be very helpful. I found this site to be very helpful. Thank you.

Helen said...

Four and a half years ago I was diagnosed with invasive ductal breast cancer and also found out that I carry the BRCA2 gene. Now I find out that I have a second cancer in my other breast but this time it’s lobular invasive. It didn’t show up on a mammogram, it didn’t show up on the ultrasound and it’s not palpable. The diagnosis was made through a biopsy of a lymph node in my arm. Women need to know that mammograms don’t always reveal cancer. If you are high risk, you need to demand better screening.

Audrey said...

I would like to wrap my head around the fact that we only have 286,000 voulenteers signed up for The Army of Women. Is it still the mentality that it won’t happen to me? It’s shame and it’s a sin. We have a chance to erraticate breast cancer. Shouldn’t everyone want to be a part of that? I don’t understand. I just wanted to share my frustration. Happy Valentines Day one and all.

J said...

Breast cancer overcomer of two years — 6 chemos, 7 surgeries, 33 radiation treatments. I would like to know the link between melanoma and breast cancer; three months after BC diagnosis, I discovered a very small black “beauty mark” and had it punch biopsied — melanoma insitu — my derm said they are starting to see a link between the two cancers. I have had yet another melanoma removed, but all is well with derm visits every 2-3 months. Would also like to learn more about nutrition — should we stay completely away from sugar? What helps? What hinders? Also, I was told that my cancer (in its earliest stages) could not be detected in a mammogram — only a breast MRI was the definitive diagnostic tool. If that is the case (and my mammogram the preceding March determined more dense tissue or calcifications but I was told all was well) why aren’t doctors demanding breast MRIs for women with history of dense tissue. I might have saved my breasts had I had an earlier diagnosis through MRI. And lastly, what is the relationship between radiation and frozen shoulder, which I also went through following all of my cancer treatment. It was yet another year of agony, but with a good ortho surgeon and yet another surgery, I have nearly all of my mobility back and the PAIN is gone.

Thank you.

Colleen said...

Yes! We are in need of an updated Breast Book, so many things are changing faster than we can all keep up with them.

I’m a mets patient, diagnosed two years ago at the age of 44. I’m afraid ALL info in print for me and my fellow metsters is woefully outdated…often just a few words saying, when it reaches Stage 4, decide who gets your pearls and call Hospice.

Musa Mayer wrote a book for Advanced Breast Cancer Patients ten years ago, and wants to update it, but can’t find a publisher (?) There are 40,000+ of us in the U.S. alone…a high percentage of initial cases of breast cancer eventually turns back up again as mets…this is not going away.

We are working to get the word out there that there are many women with mets and we are fighting for a cure. We are SURVIVORS just like the millions of gals who have gone through treatment and been rendered cancer free. I’m doing my part by writing a weekly blog, filming a PSA, being interviewed for magazines, writing newspaper articles…but I need your help. Please help us ‘trains with square wheels’ from the Island of Misfit Toys be embraced by the whole breast cancer community. Yes, we pulled the short straw, but we are advocating loud and clear for ALL of us.

Thank you~

Andrea said...

I suggest highlighting anything that can reduce a woman’s cancer risk that is supported by research and found to have statistical significance. As young women make life’s choices, this should certainly be an emphasis at a point when something can be done to avoid future suffering.

I have been surprised that my daughter and daughter-in-law did not realize that one of the benefits of breast feeding is the possibility of reducing breast CA risk. They are educated young women (one is a physician’s assistant!)

Patricia said...

I wish there was a numerical scoring for your risk of breast cancer. We hear the “one in eight women” number a lot, but I don’t know if certain risk factors have a higher risk than others. For some diseases, they have created a formula assigning each risk a number. You add up your numbers and have an overall risk assessment. I think that would be a useful tool in both relieving anxiety for some and encouraging a checkup for others.

Shelia said...

I would like to see an update to the role of soy with ER+ breast cancer. Having ER+ DCIS, and preferring a vegetarian diet, I am often confused about whether soy is okay or not. Some studies I’ve read say no. Your book indicates that it’s okay for one serving daily. Perhaps recent research has been more conclusive?

Sudie said...

I am a Reach to Recovery volunteer - had my mastectomy 15 years ago, Tamoxofin for 5 years and have been on Evista for 10 years. Through other volunteer work with the ACS, and from talking with new ladies in our BC support group, I know how difficult it is for women from the time of the diagnosis of breast cancer to the time treatment begins. I would love to see each woman receive from their oncologist a sort of form letter:

Dear Patient:

You are to have surgery (mast., Lumpectory) on ________________. We usually like our patients to want ___________ weeks before treatment begins so the surgical site may heal. If you are to have chemo a (port; PIK line,) can be installed ____ weeks before start of treatment. Someone from our office will notify you of this appointment. Etc., Etc. . . . . .

As most folks know, a patient is only able to absorb so much information at one time and the rest goes in the ears and out the eyes and nose into Kleenex. A form letter with appropriate approximate dates or time frames would do much to sooth patients in that “never never land” between diagnosis and actual fighting the disease. Friends and family have so many questions as to WHEN and WHERE and these are only echos to patients who wish they knew the answers to these questions!

Four years ago I was diagnosed with a weird metatastic cancer in my lower right abodomen. It was NOT breast cancer - nor anything else recognizable. Three rounds of debilitating chemo over almost a year shrank the tumor area by the hoped for 50% and the second surgery removed all the dead and damaged “debris.” Two more rounds of chemo and six weeks of radiation have left me healthy and happy except for the expected neuropathy and a few other easily managed side effects. The past 2 1/2 years have been wonderful (with frequent checkups by oncologist and surgeon’s office!)

When I went through this treatment I was well aware that this cancer had no predictable paramaters and we were ALL in limbo as to the outcome of each treatment and surgery. But most breast cancers have a somewhat predictable course of treatment that could be shared with patients early on with the understanding that this is just an “estimate” which can be changed or ammended at any time. Women would then have specific things they could worry about rather than EVERYTHING at the same time!

Thanks for listening - the goal in treatment for breast cancer should be to make the experience as minimally un-traumatic emotionally as well as to eradicate the disease from the body. I must also put in a plug for the ACS “Reach to Recovery” program, where trained volunteer breast cancer survivors visit with newly diagnosed patients. Much printed information is shared, and the patient gets to talk with another woman who has survivied a similar type of surgery and treatment. “Reach to Recovery” cannot connect volunteers with patients unless they are referred - an act that would take just moments at the surgeon’s office.

Thanks for asking - and listening! This was on my mind this morning and I was delighted to open my “Army of Women” blog today!

Sudie

Valerie said...

Hi Dr. Love,
I was diagnosed with ILC 2.5 years ago at the age of 39. I am the fourth young woman in three generations of my family to be diagnosed with breast cancer, but I am BRCA 1/2 negative. I would like to seem more information about the other types of genetic mutations that can cause clusters of breast cancer in families. It seems that the two BRCA mutations get most of the attention, and if a family doesn’t have one of these two mutations, then women may not be monitored as closely.
I would like to see more education aimed at personal care physicians so that they are more proactive with younger women who are at risk of breast cancer or who have suspicious lumps. I know so many younger women who were told that they were too young for breast cancer, that a painful lump was most likely not cancer, and that they should go home and “monitor” their lump. I asked my PCP for a mammogram for years, and was refused until I had stopped nursing my son for a year. I never felt the thickening in my breast that was a 4.5 cm ILC tumor until it was found during my second mammo. I think that women need to know that breast cancer does not always present as a lump–they need to be taught to look for the symptoms of ILC, inflammatory bc, and Paget’s for example.
Finally, I would like to see information about targeted therapies. I think that the cancer treatment guidelines are still too general–aimed at treating breast cancer based on the size of the tumor and the number of lymph nodes involved, rather than the histological features of the individual cancer.

Thank you! I am a big fan of yours Dr. Love!

Elizabeth said...

I was diagnosed over 3 years ago with stage II invasive ductal and lobular. Your breast cancer book was the first book I read after I was diagnosed and it helped me tremendously. As a survivor of breast cancer, I would like to read about complementary medicine in addition to standard treatment. As a survivor diagnosed with hormone receptor positive breast cancer, I truly believe that in addition to taking hormone therapy, exercise, diet and supplements (calcium, vitamin d3) are an important part of surviving this disease; however, most oncologists don’t even touch on those issues. I have had to research on my own additional ways to help reduce my risk of recurrence. I would also like to read about what the future holds for us with hormone receptor positive early stage breast cancer since there seems to be a lifetime risk of the cancer returning. Should we be taking aromatase inhibitors for the rest of our lives? Should we be switching drugs? I have read many stories from women whose cancer has returned 6, 8, 10 and even 20 years after diagnosis and it has returned as stage IV. That is extremely frightening and makes me think that 5 years of hormone therapy is just not enough.

Thank you for what you do for those of us living with and surviving this horrible disease.

Deborah said...

I would like to see a description of the optimal treatment AFTER surgery, chemo, radiation, and Herceptin for PRE-MENOPAUSAL women with EARLY STAGE breast cancer who are HER2+ and ER/PR+, given all the exciting (but confusing!) new research findings. Ovary removal? Drugs to shut-down the ovaries? Tamoxifen even if the cancer is HER2+? (Please explain the “cross-talk” issue and whether it is a concern. How does Herceptin figure in to that?) How, when and under what conditions does Zometa fit in? How do you know when to switch to an AI if you are in chemopause? Which AI? Is there a test to determine whether chemopause has become the real menopause?

I am reading about new and exciting breast cancer research findings almost daily it seems! I would love to see this new book “translate” all those new findings into a format understandable by the lay person. And I would like to have the dots connected — how should these new research findings be implemented for optimal care to prevent recurrence or lengthen survival?

Thank you!!

Gloria said...

I have just recently been diagnosed with ILC in the left breast, a tumor of about 4cm in size. I am waiting for additional biopsies of my left breast of two suspicious spots identified by MRI. My surgeon and oncologist agree that I must go through neoadjuvant chemotherapy if lumpectomy or mastectomy with reconstruction is to be considered a possibility. (I have small, dense breasts.)

I think it is critical for you to tell women how mammograms may provide a false sense of security if they have dense breast tissue. I was doing regular breast self-exams and in June 2008, found what I thought was an odd change in my left breast. Went to my PCP, she did not think it was that unusual relative to my right breast. Had a mammogram about two months later, my normal annual, it showed nothing - so I thought I was fine. Then in late November/December, my bra felt like it was tugging and uncomfortable. I could tell that this same spot had grown. Unfortunately, I was out of the country and could not return until late December. Went to PCP, then got ultrasound and another mammogram of left breast. Ultrasound spotted the tumor but mammogram was clean - nothing. Radiologists sat down and showed me two prior years of mammograms and the one just taken of left breast - nothing. I have told my friends and colleagues about my experience and they have been shocked - they too did not know that a mammogram would miss something, especially after it got to the size of my tumor. Please warn women about this. If they feel anything odd, insist on an ultrasound even if your PCP doesn’t think it is that unusual.

Another thing I would like you to write more about is neoadjuvant chemotherapy. I have found very little on this subject. How long is it typically done? How do they determine that the tumor is sufficiently shrunk? How do they assess clean margins when they do this? Are there special chemo regimes used neoadjuvantly? Any information on success rates doing this?

Thank you for asking us what we would like to see in your book.

melissa said...

I am a breast cancer survivor (5 yrs out). When first diagnosed at 38, I found it very frustrating finding information on causes & prevention. My doctors only recommended getting my mammogram every 6 months (and exercising and eating “right” which I was already doing). I think two things need to be done…1) All organizations that raise money (Komen, Livestrong, etc.) need to include on the web page, the RESULTS of all the research studies they fund. We raise and give millions, but the lay person does not get the benefit of hearing the results of the studies unless we catch the story on the evening news. Also,it has been my experience that doctors do not share the info with the patients. 2) No one is talking about the environmental impact on the disease which I believe is the major culprit. Genetics load the gun- environment pulls the trigger. There is a series of books by Dr Sherry Rogers that are excellent. Her background is environmental medicine & molecular biochemistry- after reading these books, I finally feel like I’ve tapped into the real issue. Start with “Detox or Die” I know…awful title. Melissa Monroe

Cheryl said...

Hi,
Your book was the first thing my surgeon told me to read. I have since loaned it to several people. I am a triple negative.And I have developed lymphedema. I have had physical therapy by a lymphedema specialist and have had a custom made compression arm sleeve and gauntlet made as well as a “Tribute” sleeve to use at night. None of my many friends who have had breast cancer have been told anything by any of their Dr.’s about this condition. I also have been seeing a Naturapath in order to get my body back to optimum health as well as taking supplements to keep my immune system built up. I would suggest to EVERYONE that they see a Naturapath in order to get and stay healthy. (note the difference between Naturapath and Naprapath)As a Dr. friend said to me “use every tool in the tool box!”In Illinois there is a wonderful place called Wellness Place where everything is free to patients and survivors and their families. Counseling, massage, reflexology, yoga, seminars etc.Meditation and relaxation is very important.Some very good questions here from people for you to put in your next book. Thanks.

Cheryl said...

P.S. I forgot to mention that I did suffer from “chemo. brain” which is very real as well as a searing, burning pain in my underarm which the surgeon said was a result of surgery that would never go away.There are many things that only people who have been there can tell you so be sure to talk to others or join a support group.

Kathleen said...

Dr. Love,

First of all, I just wanted to say that we were community neighbors in Jamaica Plain way back when you were just starting down this road in your medical career at Faulkner. We had a few mutual friends (like our accountant, Marjorie P.). So, I’m especially pleased and gratified by all you’ve done for breast cancer treatment and research.

I now work in healthcare myself as a physical therapist who has treated breast cancer survivors over the years, and I certainly never thought I’d be a breast cancer survivor. I had DCIS last year and a lumpectomy that removed a lot more than a mere lump, but involved the amputation of half my breast. My surgery was followed by radiation, and I had to research and ask to be considered for different rads options myself; my rad onc only presented me with one option. I give him credit, though — at least when I asked about other protocols, he did assess me for them and I was able to do the shorter Vancouver protocol. But why did I have to ask him?

I echo in general what a lot of survivors have already written here, which is that I don’t think the principal of “informed consent” is being adequately fulfilled with a lot of us. I think we need to start a separate movement to educate all the surgeons and oncologists who deal with us about what informed consent really means. Yes, the day I was told my biopsy was positive was one of the most stunning and shocking days of my life. But I’m a grown-up and I would like to be treated like one. I think it would be a good idea for all the docs who treat us to require or strongly suggest to us that we bring a trusted friend or loved one to our consulting visits. And then that each of them really tells it like it is. I was certainly not presented with all the info or options that I needed to make informed decisions about how to deal with my cancer. I understand that perhaps everything cannot be covered in an office visit or two, but doctors could at least give us better educational material or refer us to one of the many wonderful websites out there, like breastcancer.org, for example, which has saved my sanity many times.

The treatment of breast cancer, and perhaps most cancer, still involves a kind of “scorched-earth” approach that has far-reaching implications and affects on our lives, livelihoods and futures. Physicians do us a great disservice by soft-peddling the “slashing/burning/poisoning” aspects of treatment. They don’t need to scare us, but they do need to help us come to grips with it so we can make better choices about what to do. It is not what our doctors decide that counts ultimately. It is what each of us has to decide for ourselves that matters. And we can’t decide well without information.

Thanks for starting the Army and I look forward to the next update of your book.

Kathi

Joyce said...

I’m a 10 yr survivor of DCIS who had a lumpectomy and Rad. My 43 yr. old
daughter was recently diagnosed with Stage 3 Ca. is HER 2 pos, received
Chemo and Rad. and now comleting a yr. of Herceptin and Lepatinib. She
was having Mammograms since age 34 and her Midwife detected a lump 2yrs in a row but Radiology told her it was nothing. It wasn’t until she went to a br. center and had a Digital Mammogram that it was picked up. She fully br.
fed. 3 children, weight 100 lbs,excercizes, and eats a good diet. Why?
My question is about your feelings on the Center for Advancement in Cancer EEd. and the work of Susan Silberstein PHD? I have your editions 2 and 4
and look forward to more diet info.

Terry said...

Your last two books have very little on breast CA in men.

I know two men who have contracted breast CA; both have had mastectomies — a cousin and my stepbrother.

You need to include more information on breast ca in men.

Stacy said...

I would like to see more information about the “hidden” issues that come with cancer treatment. There is a note above about someone’s arm swelling and the doctor just said that it came with chemo.
The very real possibility of Lymphedema(LE) of the arm, breast and trunk need to be discussed. In the U.S. there is not a requirement for qualified LE massage therapists. The National Lymphedema Network provides much assistance to cancer patients seeking someone with the proper knowledge to alleiviate the swelling and discomfort, and in some cases, the life-threatening symptoms of the life-long condition.
Too many doctors shrug their shoulders and minimize the possibilities developing LE, sometimes years after breast surgery, axillary node removal or even Sentinel lymph node removal. Too many doctors shrug their shoulder and are not proactive in helping a patient to get relief from the consequences of LE. Get the word out for us. Help us to make doctors and legislators more aware of the lapse in training requirements for therapists to treat patients with LE. Thanks.

Maggie said...

I am a community leader for a breast cancer message board and I get a lot of questions. I think the hardest ones for me to answer are those about triple negative diagnoses. What do they do about chemo if they are early stage? There is no test like the Oncotype test and it’s hard for me to give advice. They talk to several doctors most times and the doctors usually say that it is the person’s choice. As a woman who had IBC, I never had a choice so I can’t imagine what it must feel like to make this choice. I want to err on the side of survival so I always want to say do chemo. But, is this really what they should do? It’s hard to have a doctor tell you that it can go either way, you know. We need more information on triple negative treatment options.
I love that you are leaving it open to other women and survivors of breast cancer to give you input about subjects to cover. Bravo!

Terry said...

Dr Love; Would love for you to include details about how different women respond differently to chemo dosages. I almost died from the normal starting dose of FEC, which next round had to be greatly reduced. Then 3 rounds of Taxotere. Was worried about neuropathy side effects, but my Dr said I would not be receiving it long enough to get neuropathy. By the 2nd round I was nearly incapacitated with neuropathy. Dr actually argued with me that it couldn’t be from the Taxotere. 1 1/2 years later, fingers, hands & toes are always tingly or numb, like needles & pins. Also more info on Caucasian women with Triple negative diagnosis. A comment about lymphedema. I have, what from I understand, 1 of the few rare cases of breast lymphedema, which they tell me was caused by the 30 radiation treatments. Was initially sent to a lymphedema therapist who did nothing beneficial. (I do not have it in the arm,but breast only with occasional trunk involvement) Finally met a friend who knew of massage thearapists trained in the “Dr. Vodder Method”. I sought out a therapist trained in this method and she has been my life saver. Every week I need a treatment. But it is the only way to releive the hardness & pain & pressure that builds up in the breast from the lympatic fluid not having proper drainage. I also found a sturdy underwire bra that places pressure on the breast. (I had avoided them thinking it would hurt worse, but was educated that it would help, and it did) Sometimes think Doctors don’t give us all the information we need going into BC for the 1st time. We have to become experts. Thank you for all you do!!

Wendy said...

I want women to know that if they have any side effects from chemo AT ALL, they need to tell their doctor. Chances are, there’s a treatment that can be used to alleviate the symptoms.

I wish someone had told me when I was going to lose my hair, it meant ALL my hair…including my nose hair! I had a chronic cough for about four weeks because I had no little filtering hairs in my nose!

I want women to know that this isn’t your grandmother’s breast cancer. Breast cancer doesn’t have to be a death sentence, and with reconstruction and cutting edge technology, it can be “nothin’ but a thing.”

Marilyn said...

Dr. Dr. Love,
Please consider having the symptoms of Inflammatory Breast Cancer in your updated book. The Inflammatory Breast Cancer Foundation is working feverishly on getting word out to not only feel for changes but to LOOK for changes. Because IBC can mimic mastitis we would like people to know when a person has mastitis they have a fever, with IBC there is no fever. Also, when a physician prescribes an antibiotic, after one week if the IBC symptoms do NOT dissipate, the patient should insist on a skin biopsy. It was because of the information you had in your book, my daughter asked her doctor if she could possibly have IBC .. he adamantly said, “Absolutely not.” She was scheduled for surgery after being diagnosed with infiltrating breast adenocarcinoma, a mass in her breast that came on overnight that was 10 cm and three days later her breast was extremely warmer than her healthy breast w/peau d’orange. Surgery was cancelled immediately and chemo was the first of her many protocols. Karen is an 11 year IBC survivor who continues to do remarkably well. Unfortunately, people STILL think of breast cancer only as a lump. We need to educate people that there is more than one type of breast cancer. Thank you for all that you have done and continue to do!
Marilyn ‘Mare’ Kirschenbaum
Vice President
Inflammatory Breast Cancer Foundation
http://www.ERASEibc.com

B. Yolanda said...

I had developed calcium deposits after my first pregnancy, which ended in a miscarriage at 13 weeks. Though I was only 30 my family doctor had get a mamogram every year. When I switched to an HMO, after the desk of my family doctor’s death, my GP and GYN/OB kept me on annual mamogram schedule. The HMO complied after several letters stating why I should not stop the mamograms. When I was 44, a mole I had on my left breast began oozing, and I immediately had my GP schedule my annual mamogram early. Sure enough it came back very suspicious. Within 3 weeks I was having my needle biopsy done, it came back positive for ductal and lobular in situ cancer. MY general surgeon was great. I had come alone for the results so he had his nurse write down our conversation. That night you were speaking at Glendale Memorial Hospital and I was there because my surgeon had told me about you. You were the first person to know about my diagnosis, since I hadn’t had a chance to speak to my husband and family.

My husband and family were and are my greatest support. My oncologist was fabulous. I had a modified radical mastectomy of left breast in May, 1994. In August, 1995, I had a simple mastectomy of my right breast to prevent the spread of the cancer and reconstructive surgery. That surgery saved my life. The finding of cancer in the right breast was like finding a needle in a haystack. The pathologist stated that the cancer would not have been detected by a mamogram for another 5 to 7 years. I am a 14 year survivor.

I firmly believe in breast cancer support groups. I started attending the week before my surgery and continued until that one ended with the loss of the MFT conducting the group. Thirteen years later, after I moved to northern California, I started again while I was awaiting the results of my CA tumor marking tests and ancillary mamogram. I am still attending 6 months later. Though I only underwent chemo, I find that I can share alot of my journey with newly diagnosed cancer patients and patients within the 1st 5 years of their diagnosis.

My doctors shared all their information with me, which made my choices easier. I found that I was able to confront my battle with cancer head on and was able to deal with it better. I also read Norman Cousins book on laughter as great healer, and took it to heart. I have always used laughter to get me over rough spots. Aa a mother of a high functioning autistic son, I have plenty of great stories since my son’s behaviour or response to a situation can be hilarious.

But above laughter and the support of family, friends and my doctors, I found that by giving my anger to God and asking for his help through this particular sharing of his passion; that I was never alone and that somehow when everything was at its darkest He always opened a window that let in the light.

I am the third member of my family to develope breast cance in 6 years. My mother was diagnosed in 1990 and died of stomach-esphougeal cancer in August of 1992. My eldest sister was diagnosed in December 1992 and is a 16 year survivor. As stated before, I was diagnosed April of 1994.

I hope my story can help someone else. I believe that the Army of Women will be one of the greatest tools for finding a cure for breast cancer.

gail said...

I would like to know more about chemobrain.After my surgery and returning to work as a nurse,my supervisor called me into her office and asked if I was having personal problems or taking drugs.Apparently I had been making mistakes and was not aware of it. I reported this to my oncologist and told him I was afraid I might lose my job. He diagnosed my problem as depression and put me on an antidepressant. I noticed he put a note in my records “chemobrain?” but he never discussed it with me. I thought the phrase was his. I had even more problems at work and I was more aware of my forgetfulness, and I was fired from my job. I went to work for a home health company. I could not learn the paperwork for a government program to order assistant devices and aides that I supervised for homebound patients. I worked at home off the clock to try to keep up with my paperwork. I was on the edge of a total breakdown, I knew I was about to be fired so I quit to save myself from the humiliation. I found out from another cancer patient that chemobrain was real.I looked it up on the internet. Normally it lasts for about a year and memory returns, mine did not.I should have never been fired from the first job, I should have been put on long term disability.Now I am fighting with social security for disability and have been seeing a psychologist. I have had no income for over 2years,I have no insurance and I have about depleted my savings.I might have chemobrain, early alzheimers (chemo increases the risk},depression, residual effect from being put under anesthesia 9 times in 2 years.If I had known the risk of the side effects of chemo, I still would have had the chemo, but the side effects are ignored, like if they don’t acknowlege them they don’t exist and the insurance companies and government programs don’t have to cover it. I am getting depressed just writing about it.Enough said. Gail

Jeanine said...

In 2005 I was diagnosed with infiltrating ductal carcinoma, both estrogen and progesterone positive. Had a lumpectomy followed by Brachytherapy. The margins were clean, lymph nodes clean. In 2007, apporoximately 2 years later, the cancer returned, again it was infiltrating carcinoma, estrogen and progesterone receptive and on the same breast but in a different location. They called it “recurring cancer”. I asked questions re longevity when one has recurring breast cancer and was told there were no studies of women my age. I looked on the internet, in your book (which I relied on heavily throughout both diagnoses including when I had chemo for six months following the mastectomy, and could find nothing. I told my oncologist that I like to plan ahead, sometimes two years, for trips, family things, etc. It would be great if you included something regarding this issue. Thanks again for your great book(s)! I look forward to seeing your newest.

Lynne said...

As a 40 year old woman who has never had children, I’m interested in existing research about whether or not (and why) the incidence of breast cancer is greater in women who have not borne children.

Katie said...

I havent heard anything about the research that is being done about the link on the male side to the breast cancer gene. I have a sister who is 33 and has found a lump that is being monitered. All of our dads sisters have had breast cancer and one just recently lost the battle. His aunt also had it. I was wondering if there has been anything new found out about this potential link.

Susan said...

I would like to see the following covered:

1. The REAL effects of chemotherapy - I do believe they are seriously downplayed. 2 1/2 years after receiving 6 rounds of ACT for triple negative Stage 2b, I have neuropathy in my fingers and feet, hair growth that is 3/4 of what I had, no body odor, stinging sensation of my tongue. Those are the side effects I know about. I feel that I have aged 10 years.

2. As others have mentioned, the dog ear effect after mastectomy.

3. Saline implants feel like water balloons. I wish someone had told me about this - I finally read about it, of all places, in Time Magazine!

4. 30% of breast cancers are non-palpable. 30% of breast cancers are not picked up on mammograms. Mine fell in both categories. Go figure. Ultrasound picked mine up.

5. The relationship of DES women and breast cancer.

6. Triple negative cancer in post menopausal caucasian women. I can’t get anyone interested from the DES organizations into looking into this. I know we are a very small % of breast cancers; we still count.

7. Reconsider all the efforts for breast conservation - lumpectomies leave us disfigured, radiation required, tissue irrevocably altered.

Thank you for all that you are doing!!! The horrors of this disease (and the ensuing treatments) could never be overstated.

Jennifer said...

I was diagnosed in Feb. 2008 with stage one breast cancer. My Grandmother died of breast cancer and my Mother was diagnosed 35 years ago. In Jan. 2008 I was diagnosed with micro calcifications and given a lumpectomy. The calcifications were found by my annual mammogram. The oncologist said to return in one year. My brother is an oncologist and lives out of state and felt I should get a second opinion. So with my 4 mammograms I visited another Dr. and he found a spot on the mammogram that was missed not seen by my other Drs.. He was surprised (as was my brother) that my prior Dr. had not done a MRI or untrasound with my family history. So he order the BRCA test and a MRI and they found that the spot was a tumor. I had a bilateral mastectomy with reconstruction. So I feel it would be great tp include in your book women with a stronge family history to get an MRI and or ultrasound at least by 35 years old even if they have to insist. I have 2 daughters and that is what they have recommended to them. I would also like to see more information on the procedures of nipple recontruction and what to expect after recontruction. I will always be greatful to you for writing your Breast Book it was my bible through all this. I felt I could only call my brother so many times. This was a wonderful guide and one I have passed on to so many.
Thank you, Jennifer

Jennifer said...

I’m 39, diagnosed 12/12/08, stage 3. Over a year ago I was put on birth control pills for menstrual cessation as an alternative to hysterectomy. I asked for a baseline mammogram at the time and was DENIED by 2 doctors. After my diagnosis I was reading the enclosure information in my birth control pills. It basically said increased breast cancer risk in patients over 30 but DON”T WORRY you will have access to additional screening.

Well, the phamaceutial companies have themselves covered very well but what they don’t tell you is, INSURANCE companies don’t cover mammograms in women under 40 with no genetic risk. All women 30 and older on any type of hormone therapy should have access to the appropraiate screening. In the very least, 1 mammogram at 30, 1 at 35 and then yearly at 40. We have some of the best medical care in the nation, yet we don’t utilize it or focus on PREVENTION. If this had been the case for me, my outcome would be very different and my three small children wouldn’t be asking me daily, “are you better yet mommy?”

Joanne said...

Diagnosed in 2007 with DCIS, triple negative, in the L. breast, I had a lumpectomy with 29 axillary lymph nodes removed, chemo and radiation. With the help of your book (my bible) I did very well with surgery, moderately well with chemo and radiation. I look forward to the next edition which I will need to replace for myself, my daughters and friends.

For your new book:

1. PLEASE suggest that chemo patients consider lactose intolerance as a side effect of drugs so their diets can be altered during treatment, and possibly beyond. It took me three miserable weeks to figure this out. I found advice from a dietician who had lactose intolerant during chemo treatment to be the most helpful, making my stomach and bowels sooo much more comfortable through the remainder of my chemo, radiation and beyond.

2. PLEASE research and explain, with emphasis on early treatment, the lymphedema symptoms, risks, etc. Currently I am still in active lymphedema therapy to reduce the swelling in my L. hand, arm and shoulder. After 19 months of therapy I am finally able to make a fist with my L. hand, but still wear compression garments around the clock to maintain the hand and forearm reduction, and work on reducing the upper arm and shoulder. These compression garments costs are NOT covered by Medicare. Another problem for this chronic condition that remains a constant reminder that my breast cancer journey isn’t over!!!

Why isn’t someone researching lymphedema for a cure???

Jan said...

I would like to know more about research and activities to reduce the side effects of aromatase inhibitors. And are there any new drugs on the near horizon? I stopped Arimidex after 2 weeks of insomnia, hot flashes, and profound joint pain. My oncologist switched me to Aromasin. That stopped the insomnia, but I still have the hot flashes and joint pain. Having to take arthritis pain relievers for years does not seem like a good idea for my body. It doesn’t seem to me like physicians are very concerned about these very serious side effects on the quality of a woman’s daily life.

Thank you for your books and your advocacy, Dr. Love. Your books have been very, very helpful to me and the 30 friends I sent them to when they got their diagnosis. I am grateful that you are so active.

Julie said...

I have been diagnosed with multiple (as in at least 12) fibroadenomas. I am 44 and have had a lumpectomy, core needle biopsy, MRI and am on a 6 month recall for mamograms and sonograms. My surgeon’s opinion is that in most cases fibroadenomas should be removed as there is a chance they could become cancerous and that I have an elevated risk for other breast cancers. However, as my breasts are almost entirely composed of fibroadenomas, we have decided to be conservative and just watch for changes. I would like more information about fibroadenomas and their relationship to breast cancer.

Robin said...

I want to know more about what the effects of the mammocyte type of radiation are, as opposed to external beam. Is there a radiation brain like chemo brain? I had surgery and radiation followed by Arimidex. I am only 4 months out from treatment, but I do not feel good yet. Should I? I am bipolar with more depression than mania and I can not seem to get over my depression, which started after the completion of radiation. I am trying to become adept at a new job and I am having trouble remembering things and being hypersensitive about everything. I am an oncology nurse and I know nothing about the after effects of breast cancer.
Also, I wish I had known how disfiguring a lumpectomy can be. I wonder if I would have been better off with a mastectomy and reconstruction.

Kathleen said...

I would like to much more about the post-chemo side-effects. I still have a considerable amount of joint pain, especially in my hands. My doctor has said that this is usual only in hormone-receptor-positive treatments, and my tumor was HR-negative. And yet, 10 months since my last chemo treatment, my pain continues to be significant; I would have thought it would at least begin to subside by now. I have tried a number of pain medicines but find them either ineffectual or debilitating. (I cannot function on Percocet.)
One doctor has suggested that this could be the effects of menopause, which chemo helped to onset, but none of the recommended treatments has done a thing for me.
There are many other side-effects, but this is the one that is most distressing to me, as it alters my ability to do simple everyday tasks.
The other thing I wish doctors would discuss right from the beginning is not just the decreased libido but the decreased moisture; the first time I had sex after chemo, I thought there was something seriously wrong with me because it hurt so badly. This is both terrifying and psychologically difficult for myself and for my husband, who felt that he was somehow torturing me. More information about this from the beginning would be helpful.

Eileen said...

Please include
(1) More information on how the armpit and breast will feel after lymph node removal. I find it is not “numb” (which is what I was told to expect) but has varying degrees of discomfort based on how much exercise I have had. I also learned I have to wear a light-weight sleep bra as otherwise the reconstructed (with silicone implant) breast is just too heavy and hurts.
(2) Please include some direction toward Dr. Ralph Moss and his research. His website is wwww.cancerdecisions.com where you can sign up for a free weekly newsletter. Or you can buy his report on each specific form of cancer. I bought the Invasive breast Cancer report — it cost $295.00 and was well worth it — it was about 550 pages long and has been updated twice for free. He covers both standard and alternative methods of treatment. Through him I found a wonderful Naturopathic Oncologist who works along with my medical oncologist. The Naturopathic Oncologist aims at helping the tissues of the body unable to retain and grow cancer cells, while the Medical Oncologist aims at killing any remaining cancer cells in your body. I had a friend who was told (after chemo which practically wiped her out) to simply take a multi vitamin to regain her health and strength: that just is not enough. Your body needs nutrients to regain strength and built a strong immune system.

Lisa said...

I would like to see you write about triple negative breast cancer in women under 40 years old. What are our survival odds? Where does this come from? Why aren’t there any effective drug therapies for it? Thanks for putting this Army of Women together-it’s SO important to us b/c survivors and our families.

Ann said...

Thank you for your work! I would like to see more advice about how to get the proper screenings when you don’t live in a big city or near a major medical center. I am 43, and have had yearly mammography since my early 30’s because of family history, dense breast tissue, and lots of soft bumpy areas. It’s hard to know what kind of screening other than ultrasound to ask for, and it’s impossible to get good advice about what’s normal, and what to worry about. So I end up either worried all the time or ignoring bumpy areas, neither of which are a good idea. The breast surgeons in the area don’t want to see you unless you’ve had a positive biopsy. I will get your new book and see what I can learn myself, but I wish I had a relationship with a medical professional who could help me monitor my breast health and give me some confidence. Thanks again, and best wishes to all on this site who are going through treatment.

Marcella said...

Since info that oncologists give you at time of diagnosis is very confusing our minds are not functioning as they should be, think it would be a good idea to have dvds available that would explain the surgery, the different treatments, after effects, etc. I was totally overwhelmed with the diagnosis and not able to evaluate everything said. Even when I brought a friend to listen to doctor at next meeting,
still was not sure what he said. Spoke very rapidly.

I have had pain in my rib (same side as lumpectomy). Had x-ray which
showed nothing. Not sure if this is a side effect of radiation. Have
been taking Arimidex but side effects were so severe - joint pain, hot flashes,insomnia,high cholesterol, hair loss, that I decided to take only every
second day instead of every day. This has helped tremendously along with
exercise and eating well. Not sure if I am harming myself, but believe this is better than not taking anything.

sandra said...

Dear Dr.Love,
I believe my daughter, Lisa Hanish, was your last surgical patient at U.C.L.A. She was happy to participate in your study at that time. We have both joined your Army of Women and are happy to support you in anyway. We are both survivors and carry the BRCA gene.Thank you for all you did for my daughter, and all you continue to do so hopefully, my granddaughters, will not be faced by this devastating illness.
Sandra Banner

Kathy said...

I had my first breast cancer at age 46 and I was treated with lumpectomy,radiation and chemotheray. I was told since my tumor was less than one cenemter that the odds of it being in my lympth nodes would be small. Wrong. It had spread to two nodes so I was placed in the “small percentages” of this happening. Twelve years later I was diagnosed after four biopsies with another 1 cenemter tumor in a completly new part of the same breast. I was told this was extremely rare. This tumor was high grade and just like the first tumor at age 46, had “no clean margins” in the pathology report. I was told that this was also rare. Again, I was told that this new tumor was completley unrelated to the previous one and that “this is rare” with just a 5 percent chance of it happening. I was given a double mastectomy with the second tumor. I requested a double mastectomy with the first breast but was turned down because the tumor was so small.I apparently keep coming falling into the low and “very rare” percentages. I also have severe adema residual in my arm which had a 20% or less possibility of happening at the time. No form of treatment to date has helped. I am told again that I am in the “small percentages”. Both breast surgery pathology reports indicated “no clean margins” which both pathologists told me is very rare and that “no clean margins” is dangerous. I have read all of your books with delight and interest but there is not much information for woman like me who keep falling into the small percentages or information about our possible future events. It would be helpful if you could include more about the prognosis and treatment of those of us who keep battling the “small percentages”. Thank you. Kathy Stark, Tigard, Oregon.

Maria said...

About four years ago I was diagnosed with papillary adenoma of the nipple, which my surgeon told me afterward that he worried might have been Paget’s. Before my surgery (about a third of the nipple was removed like a slice of pie), I acquired the Third Ed. of your book–which I read almost cover to cover!–but could find very little information about this condition. I realize it’s not cancer, but it was frightening all the same.
A couple months after the surgery, I again had some crusting of the nipple and my surgeon recommended removing the nipple entirely. I sought out a second opinion, as I wanted to know this: if this adenoma was growing outward from within a duct, and the nipple is removed, how then would I know if/when it started growing again? If the nipple was the outlet, would something grow and turn into cancer inside without me knowing?
The second surgeon sent me for an MRI and there was no sign of cancer or other growth, so I did not have further surgery. I have been getting regular mammograms and even another MRI in the intervening years, but there is still a nagging feeling that something isn’t quite right. If I knew more about the condition, perhaps I would feel less insecure.
Thank you, Dr. Love, for your amazing book, and your life’s work. My mother is a 14-year survivor, and so I live with the realization that breast cancer may one day be my fate. I am made more hopeful knowing that you are working so very hard at improving our chances!

TERRI said...

I recently had a double mastectomy on January 5, 2009. I’ve had alot of swelling under my left arm where the nodes were taken. How long does this last? (I am left handed too.) Some days the swelling is not as much. I would like someone to let me know what to expect. I’m also wanting to get reconstruction, but not for a while and would like to hear from someone that has had this procedure done recently. I too did not have to have treatments or take tamoxipen. Dr. Love, this site is great. It was given to me from a friend. Just reading notes and comments from other women helps alot. thanks

Betty said...

YEs,I have a friend who had a biopsy 14 years ago,it never healed correctly and it was in the shape of a small crater. SHe had yearly mamograms at three differemt locations (including Cedars and UCLA) and saw gyns and Mds regularly. NO ONE DIAGNOSED the problem and no mamogram spotted the growth (she even had digital momography). So finally a PA in her doctors office told her to get it checked by a dermatologist (she had already seen one who said if it doesn’t bother her then its NOT a problem). But this time, they sent her for an MRI. She had a slow growing in situ cancer 3cmm large! she has now had radiation therapy and an oral med. each day. How could this be missed for 14 years by so many people. When I looked it up on the internet, it was “classical” for the kind of cancer she has. How can we ever trust our doctors, mamograms and the who idea of depending on the medical profession at all?

Lorna said...

Just being part of all of this is making me get up the Courage to actually go get a Mammogram for myself. I am Really Scared to go!! I have heard so many story’s of it being so Painful!! I Know it is worth a few moments of discomfort and Pain to losing my life. I’m just scared.
I’m 44 years old and have yet to get one done.

Pam said...

I am a recent breast cancer survivor, with a mastectomy and reconstruction in July 2008. Two weeks later I was re-admitted to the hospital for a MRSA staff infection - related to the “flap” and tissue expander implant reconstruction operation. Two weeks ago I had my second surgery where the expander was removed and the final implant was inserted. I was stage 2, and the type of cancer was ductal invasive. For the earlier commenter - I also had the lymphedema for the second surgery as well. It delays the healing.

I have had problems with the aromatase inhibitors: Arimidex and Femara. My body was throbbing with pain. Now I’m on Tamoxifen, and have been dealing with side effects: loss of cognitive ability and muscle soreness. I also have adult ADHD and that exacerbates my thinking and memory problems.

I would like to see more information and research about the interaction of breast cancer and other existing medical conditions, such as ADHD (or depression) as well as impact on other medical conditions. Because I’m also sensitive to many medications I have also been tested for the liver enzyme that processes many of them - P450.

I have done much of my own research on interactions and have requested genetics counseling along with the complimentary treatments such as yoga and biofeedback, and they are great.

Pam Carter - Minneapolis MN

Margie said...

Thank you Dr Susan Love for all your work. I first read your book when I started into Menopause and I should have listened better than. Although, I did delay taking hormones for a couple of years (cold turkery), I started thinking taking hormones would be protective to my heart. My dad died of a heart attack so I though I was at risk.
Long story short, two years ago, I was diagnosed with Invasive ductal carcinoma, IIb of the right breast. This was directly behind the nipple so not picked up in a mammogram less than one year earlier. After considerable research including reading your book on Breast Cancer and consulting with three different surgeons, I had a skin sparing mastectomy with a lat flap reconstruction. I told the doctors they had one shot with me so everything had to be done in one operation. At first, they rejected this idea but a Dr at MD Anderson decided to take on the challenge. The thought of a series of operations just did not appeal to me. Overall, I am pleased with the results. It took really a year to feel like myself again. My back is still numb in some places. I was put on Femara and Fossamax and I struggled for many months. I develped arthritis to the point I could hardly move. I was sent to a Rheumatolist and she put me on more drugs - drugs to control the arthritis and drugs to counteract the effects of the arthritis drugs on my stomach. I am 55 and pretty active. This went on for awhile and then after some research, I stopped taking the Femara and the arthritis medicene. I thought it was causing the joint pain, but the pain persisted. Then after several more months, I stopped taking the Fossamax. Honestly, it was all too many drugs. Right now, I am not taking anything and I am feeling much better. I would like to see your new book weigh the side effects of these drugs and the risk of not taking them. My risk which was determined by a statistical scale improved my ten year survivial rate by 9 % which did not seem compelling enough to me to suffer the debilitating side effects. I chose not to have chemotherapy or radiation mostly because of the effects of both long term. (Chemo brain and irreversible changes in the skin, cell integrity)
In addition, I hope you do devote a chapter to Lymphadema. This is very much ignored by doctors. MD Anderson which I believe to be the finest center in the world did very little to educate me on this. In fact, my constant questions on this have gotten them more aware. (Because I had a positive lymph node, I lost 17 lymph nodes). I have a compression sleeve and a gauntlet that I try to wear every day. My right arm is currently 10 % larger than my left.
I cannot tell you how thrilled I am with your efforts. It is so healing, so helping. I tried to get my sister involved but she is “too busy”. Not sure where I went wrong there but if you or your new book has any ideas on how to talk to your family about your cancer, I would welcome that. All the best.

Margie said...

One more thing, the best thing I have found to help get active again is Pilates. It has been slow but I truly believe the building of core strength has made the difference.

Kristen said...

We need more information on Stage IV breast cancer in general and also as an initial diagnosis. I am 34, I was just diagnosed with breast cancer for the first time, Stage IV, it is in my liver as well. Most of the info on metastatic disease seems to be bundled under recurrence.

Karen said...

My oncotype test was “in the middle” so I was given a choice of a short course of chemo or quarterly injections of Lupron for ovarian suppression (plus tamoxifen and possibly Zometa)to produce the same statistical results as chemo. I chose ovarian suppression to avoid the side effects of chemo. I would like more women to know about this option.

Terri said...

I’ve posted elsewhere on this, but please look at the basics of prevention. Why is research so focused on drugs? Could it be because of the billions of dollars the drugs bring in? What about looking at why this epidemic is happening? Hormones and pesticides in our food chain? Bad air? Synthetic materials in our homes? I read recently that “breast cancer is a genetic disease.” That isn’t quite true–it’s mostly an epigenetic disease. We all have potential cancer cells bouncing around all the time in our bodies. What causes those cells to catch on and thrive? What causes our tumor supressor genes to shut down? Please push for more basic research about this.

Sandra J. said...

I have a history of fibrocystic disease. Recently I had a double-mastectomy, and through all the months of research and consultations I continued to hear that caffeine plays a part in fibrocystic disease. Is this a ‘known’ fact or just ’some studies show’? Also, it was brought to my attention that drinking more than 3 glasses of wine a week is a ‘no no’ for breast cancer patients. I thought it was suppose to be good for my heart! What gives?
Also, is there a way I can view the answers you have given to other questions asked? I need to know the same answers to many of them, myself, and rather than having to ask you again, I’d like to be able to read your responses too.
Thank you for the ‘Army of Women’. It helps me tremendously to know I’m playing an active part in finding ways to prevent and/or cure breast cancer.
Thank you for your dedication.

Maureen said...

Thank you for all the information that is being shared here.
I am a survivor of a mastectomy, chemotherapy and radiation,followed by Tamoxifen therapy which is almost finished. Things I would like to see addressed in a revised book include:
-Continued efforts to identify causes beyond weight gain, alcohol and herdity. None of those applied to me when I was diagnosed. Sometimes the public service announcements make it sound like if you just keep your weight under control and avoid alcohol, you will avoid breast cancer.
-More attention to the myriad of long term side effects either caused by treatment or related to treatment, which the medical community doesn’t always recognize. Every new symptom or condition is looked on as separate from the treatments and women who have undergone the treatments know they are not separate.
-More attention to lymphedema and the limits that are considered normal stresses that one can safely engage in…exercise, repetitive use, etc…
-Required attention to diet, and complementary therapies through the established medical community and health care providors.
-More attention to the necessity of physical therapy after mastectomy.
Thanks you again.

Janice D said...

I would like more definitive information for women who have had hysterectomies, and wish to take Premarin by itself. Is there a definite link to breast cancer? Most studies seem to involve premarin/progesterin and uteruses. Premarin helps me with me mental accuity as well as with mood. Hot flashes aren’t an issue. Thank you, Jann

Stacy said...

My grandmother is a breast cancer survivor. She had been through so much already when we learned that she had breast cancer. My father asked her why, since she was a devoted Christian, would God do this to her. Her answer…God has a plan for me and everything happens for a reason. As hard as it was to know that she had this cancer, knowing that she was holding strong to her faith helped her and all of us, especially myself, get through the tough times ahead. She ended up losing one breast. Despite this, she has never faultered. My only fear is that this cancer is hereditary and that it will trickle down. My mother had a benign tumor removed from one of her breast already. She is 50. I am 28 and have been lucky so far. I keep up on my self exams and have one done at each yearly checkup. I have a four year old daughter though. And, I pray that should it hit someone else in this family, please let it be me. I don’t want her, or anyone for that matter, to have to go through it. I praise every woman who has been through this, or some other form of cancer, and has held strong, faced their fears, and continues to fight for a cure. Thank you for all that you do, and please keep us in your prayers…you will all be in ours!

S. K. said...

I’d like to see something about the BRCA 27.29 blood test. My results vary quite a bit. They have trended upwards to 74 over 11 years; then down to around 45 in 6 months. One doctor is concerned; the other says not to worry. One told me to avoid soy products; the other says it makes no difference. No doctor has ever told me to take vitamin D3–I learned this from a cousin. My husband and I were both sent to a hematologist in 1994 as our family doctor saw one component of routine blood work that bothered him. The hematologist said not to worry–most people living in large cities had the same results on the specific component. And the family doctor failed to have X-rays sent to be read. 15 months later my husband was dead (non-smokers lung cancer) and in another 9 months I had my own diagnosis of breast cancer. I don’t trust doctors but am afraid not to go for checkups.

Carol said...

I am an LPN in a 4-doctor general surgery practice. I have learned a lot about breast cancer and it’s diagnosis, treatment, and effects on patients since I’ve been working there. Please make sure everyone knows that yearly mammograms definitely save lives in spite of what some folks are saying.

Also, more research and patient/doctor education needs to be done regarding “mammosite” radiation treatments. Patients need to know that the “easy way” is not always the best way and that there are criteria that have to be met before the 5 day radiation treatments can be done after a lumpectomy is performed.

The reason most arms swell post op mastectomy is because a patient has had an axillary node dissection as well. A sentinal node removal is less apt to cause swelling. Remember that there can’t be an injury to an arm that has had an axillary node dissection with a mastectomy. That means, blood pressure, drawing blood, trauma to the arm, or any kind of injury…always protect the arm on the side of your mastectomy and offer the opposite arm for any procedures.

The American Cancer Society does a wonderful job in helping post op mastectomy/lumpectomy patients get through their recovery period. There are volunteers who will come to discuss exercises to regain range of motion in new post op patients and they will even discuss their own surgeries in order to help the recovery just a little bit easier for the newly diagnosed patient. If you are a patient or a doctor’s office, contact the local agency in your area and find out how you can connect with them so they may help others.

Always remember that a cancer patient is another human being that needs just a little more love in their lives right now….a hug is never turned away.

Karen said...

I am lucky to be alive right now and am forever in debtted to the medicine and everyone who helped me be cancer-free today. However, I wish that I had been told about the after effects and all of the symptoms that can occur when you are forcedly thrown into menopause. I am 47 yrs old and was diagnosed with Breast Cancer Estrogen positive/Her2 negative 3 years ago. I knew about the hair thinning, but the weight gain and mind problems have been hard to withstand. I am on Tamoxifen and get a shot of Goserelin (every 3 months). Any information that you can tell someone about what to expect or what could be expected would help a lot. I didn’t learn about the after effects of chemo and life after cancer until the symptoms presented themselves. In the meantime, I did not know what was normal and to be expected and what was not. These answers would not have affected decisions that were made, but it would have been more comforting to know that what I was experiencing had a physical reason.

Cynthia said...

I’ve heard news reports and read studies that suggest self-exams are not effective if not done correctly or perhaps not at all. What’s the role of self exams these days? How can we learn to do them correctly? Are self-exams effective for women who have regular mammograms?

Pamela said...

I/we recognize breast cancer affects women in far greater numbers than men. BUT, it does occur in men. My husband was diagnosed in December of 2008. As much as he and I have always supported the “pink ribbons” (my mother is a 46 year survivor!) - we now realize that these ribbons should also have at least a stripe of blue in them. Men are now simply being treated the “same” as women, mostly because there is so little research on men. In our search for books and information on this topic, we have noted very few include ANY mention of male breast cancer, or at most, it is given 1-2 pages. This has been very frustrating for us. Please include what you can on male breast cancer. Women have done a fabulous job of demanding attention and dollars for this important research, please do not exclude the men.

Stefanie said...

Dear Dr. Love,
As a young woman with a high-risk family history of breast cancer, I would like to see your breast book touch on advice to women who have undergone genetic testing. As I’ve talked with women who have made the decision to test or have already been tested, I get the feeling that many of us feel somewhat “in limbo”; the preventative and detective tests are available, but advice and perspectives often are not.

eileen said...

I am a 2 year survivor. I had DCIS- stage 0 and had a lumpectomy followed by 30 rounds of radiation. I am now on tamoxifen due to the hormone levels. I am wondering if there is an accurate test to see if the tamoxifen in working. I am 54 years old and still get my periods- though it is irregular now and once in a while a hot flash. My oncologist said that there is no accurate test out there and the one test available,insurance companies will not pay for it. I just dislike taking a drug with many side effects without knowing if it is working.

Jennifer said...

Thank you for writing a new book. I was dx in 2007,at 50, IDC, bilateral mastectomy with free tram reconstruction. I feel the doctors misrepresented the discomfort involved with the stomach muscles, as 2 years after the surgery I am still bothered by that. My flaps failed and I did not have implants. I with I had been advised to have mastectomy and wait a year or two to decide reconstruction. I feel that the tram surgery should be discontinued. I hope I will have no further ill effects from it, but the stomach issues have been far worse than the recovery from mastectomy and it really is not that bad not having fake breasts. The prostheses work very well. I personally am glad I had bilateral mastectomy rather than lumpectomy and radiation as I know don’t have to worry about the possibility of a misread mammogram or a more aggressive cancer showing up in the future. The peace of mind is worth the loss of the breasts. I do think doctors should prepare patients for the period of grief and mourning that goes with this diagnosis and loss of breasts. I also wish that I would stop seeing news articles that talk about what you can do to prevent breast cancer. As a person with no family history, no risk factors and one who did all the “right” things, I resent the implication that I must have done something to cause me to get this disease. Thank you so much, Dr. Love, for the work you are doing.

Linda said...

Dr. Love … Thank you for All that you do! As a 16-year survivor, first diagnosed in my early 40’s, there are two things I would like to see addressed:
1. Pay attention to red flags when meeting with your doctor. The first surgeon that my ObGyn doctor sent me to see after a mammogram and an ultrasound showed something irregular, told me that even though I was experiencing nipple discharge as well, I shouldn’t worry because that was very common and certainly not enough to indicate cancer. He did no biopsy or any further testing. A year later, when I had the same symptoms, she sent me to meet with a different surgeon. He immediately did a needle biopsy, then a surgical biopsy, and finally a modified radical mastectomy, as was indicated by the pathology findings of the surgical biopsy. I had always felt uneasy about the first surgeon’s easy dismissal and learned a valuable lesson. Always trust your gut.
2. As a survivor, I am continually shocked by the lack of awareness there seems to be concerning male breast cancer. So often, people snicker and joke about it when they hear of someone diagnosed with it. After I spend a few minutes educating them, they seem to understand the gravity, and the jokes stop. But how do we educate the general public more in a proactive, rather than reactive way?

Linda said...

P.S. One more item I would love to see addressed. The oncology group I used for my aftercare had a doctor who specialized in genetic testing. She strongly urged me to go through the testing after my younger sister was diagnosed with LCIS two years ago (at an age older than my age at diagnosis). So I did the testing. The results were more frustrating than if I had not done it and never knew. They found that I do have a mutation in the BRCA gene, but not any of THE recognized mutations. Results: Inconclusive. In retrospect, it feels more like a revenue generator than anything else. Now what helpful information can I give to my daughter and my sisters?

Judy said...

I would like to see more information out there on IBC (inflamatory Breast Cancer). My sister and I are survivors of breast cancer but we lost my sister’s daughter to IBC at the age of 39. We lose so many young women to this type cancer and I never see much information about it.

Sandra said...

Dear Dr. Love,
I would like to see more emphasis placed on breast feeding as a method of prevention of premenopausal breast cancer (which is responsible for too many years of life lost and affects younger women who still have the responsibility of caring for their children). Too many women are not familiar with how to breast feed and what their options are for learning how. Too many women still are not aware of the many health benefits of breast feeding for them and for their children. I am so glad to see more emphasis being placed on prevention rather than early detection and cure.

Gailya said...

When I was diagnosed in 2008, I was devastated - brought to my knees. Then I talked with a friend who had been through the process a few years earlier - and your book arrived in the mail as a gift. I read it in one day and found more information than I had been told by doctors or online anywhere else - thank you. You made the situation manageable. I would like to see information on nutrition and its affects on the “terrain” of our body. I read “Anticancer, A New Way of Life” and believe that the nutritional piece is important. Also, I’m confused about the bone density drugs - my surgeon took me OFF Actonel as I’m on tamoxifen and she doesn’t think I need it (I have osteopenia), but the San Antonio research showed protection from a bone density drug. And I just read an article in our local paper that reinforced that strategy. What’s right? After the treatment is over, we’re all looking for ways to avoid recurrence. Thank you for all you do!!!

Robin said...

I was diagnosed found my lump the same day I learned I was pregnant. Navigating that minefield was harrowing. One expert told me I was suicidal for wanting to try to preserve the life of my child. There is not enough information readily available in the hands of your OB and the surgeons who all had very limited idea of what to do. And I live in Dallas, a city filled with medical experts and treatmetn centers of every kind.

Carol said...

I would like to see continued acknowlegement of the importance of fruits and vegetables. Since only about 10% of America heeds that research substantiated advice I hope you will look at the research behind a whole food concentrate that is fresh, raw, vine-ripened, pesticide free fruits and vegetables which have been dehydrated, had the sugar, and salt removed and the fiber put back and the dehydrated contents then put into convenient capsules. The capsules bridge the gap between what we should do and what we will do in an easy solution. The concentrate also comes in chewables and gummies. Per the research the concentrated ‘JuicePlus+’ capsules are what they say they are and provide the same protections as raw, vine-ripened, pesticide free, fruits and vegetables as that is what they are. They are not isolated vitamins, rather whole food and sold as food concentrates. You can look at the research at http://www.juiceplus.com.

Cathy said...

I was diagnosed in May 2004 with invasive ductal breast cancer of the right breast and told I had benign calcifications in the left breast. After each visit with a variety of doctors I got copies of the reports from visits or test done.
Upon reading my MRI report and comparing it to the subsequent biopsys I had done under ultrasound of both breast I became highly suspicous I had cancer in the left breast (the breast I had been told had benign calcifications). After several discussions with my surgeon asking him to check further regarding the left breast he basically told me I didn’t know what I was talking about and made some snide remarks. Luckily I went for a second opinion to the Seattle Cancer Research Center and met with a multi-disciplinary team and on that first visit with me after reviewing all my reports they agreed that I probably did have cancer in the left breast. They did a biopsy right there on the spot and three days later it was confirmed as cancer.
My message here is and I would like to see addressed in your book is that women must advocate for themselves. When we talked about this experience in my support group the women said they felt very uncomfortable asking for their medical records. They felt like they would be insulting there physicians. My thought is I would much rather live then worry about hurting someones feelings. I feel if the physician is worth his salt he/she won’t care if you get copies of your records and should be encouraging it.
Moral of the story is I am still here doing well and about to celebrate 5 years cancer free!!!

Toni said...

Hi, Dr. Love,

I am with an Avon Foundation Breast Care Fund grantee and we have recently had a question about whether or not bruising or trauma to the breast can cause breast cancer. I looked in your Breast Book, online, WebMD and other sites, but can’t find anything about it. On the screening form at the hospitals here, it asks if there have been any black or blue marks or any trauma to the breasts. We are trying to find out why they would ask this and if it is related…

Any information would be greatly appreciated.

Naz said...

Thank you Dr. Love for all that you do!

Karen said...

In 2000 I had a bilaterial mastectomy (multiple cancers in left breast, right breast was pre-cancerous, sentinal node biopsy was neg.) followed by 4 cytoxsan and Ardrimycian treatments. No reconstruction. May of ‘07 it metastasized to breast bone, node beihind it and a 2cmm tumor with that. Had 40 radiation treatments and 6 months of taxol and avastin. Currently receive faslodex injections every 28 days. I would love to see information regarding loss of libo. I have been told over and over it is in my head! In 2000 I was 57,and had a great satifying sex life with my husband. I don’t miss my breasts, but I sure do MISS my love life. It is as if love making doesn’t exist. Is there no help for survivors with this problem? I have plenty other problems, neuropahy in hands and feet, joint aches, lymphedema in both arms and hands (wear custom made sleeves and gloves which cost $500.00 every 6 months and are not covered by insurance)loss of movement in left arm from radiation (helped somewhat with PT) chest muscles have hardened and my lungs can’t expand properly……….BUT…….I am ALIVE to complain about it which is wonderful. However, I wish the doctors would have more help/explanation/ answers to all these problems….all I get is…….”It is caused by the chemo.” To look at me you would never know I had been sick, I did well both times with the treatments and have continued to be upbeat and positive……..but at times feel alone with all these questions, there are no mets survivors groups which I feel would be very helpful.
Dr. Love, thank you from all survivors and their families. I pray a cure is found before my daughters and granddaughters have to deal with this.

Marjorie said...

Would love to see more about exercise following surgery and risk reduction of lymphedema since so many women simply stop using their arms after nodes are removed. There’s a great deal of misinformation and conjecture out there that creates unwarranted fear. Also, as others have mentioned, more about the risks and benefits of genetic testing and when it’s warranted or not. It’s a big revenue generator these days and too many women are being tested without adequate counseling and many of them aren’t candidates for testing. For too many, it serves as a sword of Damocles since they have no idea what to do with the information once they obtain it.

Connie said...

I was diagnosed with bc August of 2008 at the age of 58. Had lumptectomy and 33 radiation treatments. It would be nice to see all of the possible side effects that radiation can cause. I had what I called rad brain, I lost a great deal of short term and long term memory. It fried my hair and I had to have 98 inches cut off and my fingernails became so fragile that they would split when I made my bed. My back pain has increased to the point where I am now seeing a chiropractor 3 times a week if this is due to radiation or tamoxifen i do not know. I am also cold all the time unless I am having a hot flash. I am taking effexor for the hot flashes, is there anything else there other than effexor that can help

Susan said...

I was treated for invasive lobular breast Ca with postive axillary nodes-had a mastectomy/chemo&radiation because the margins weren’t clear. I took Arimidex for 5 years and decided to D/C it because of the side effects/quality of life. My oncologist dischaged me because of this. I am seeing my family Dr. every 3-6 months but he doesn’t check my nodes like the oncologist did. Should I find another oncologist for checkups? Should I get a MRI of my other breast? Thanks!

Elaine said...

What, if any, researach is there about the use of vaginal estrogens (eg vagifem) and breast cancer risk?

Nancy said...

Dear Dr. Love,
THANK YOU for all you are doing! I’ve lost a sister to breast cancer, and now have the second sister with breast cancer. She’s starting chemo. Her heart health isn’t great - “lower end of normal” - and I have major concerns about her. I’ve volunteered for the Sister Study. Seems so odd to be the oldest of the three, and to date, not to have breast cancer. I thank God for that, of course, but do feel a bit guilty. Thank you for the volunteer opportunity to help find a cure, and to deal with my personal feelings.

Toni said...

I had my yearly mammogram in March 2006 and was given a good report. In November I found a sore lump in the left that was a stage three. When we did another mommogram, we found a very small mass in the right breast. I had 6 weeks of chemo (TAC),a double mastectomy in May 2007 and 33 radiation treatments
I used your book before my surgery to see how the surgery incisions would be & how I would look afterwards. I took the book to my surgeon (who I respect immensely) and he told me the book was accurate. I’m glad I knew what to expect, even tho it was still a great shock to see myself afterward.
Even though it has been almost two years since my last chemo and I still feel like I have “chemo-brain” How long does it take to get rid of the fuzzy-headed, can’t think straight feeling? It’s not as bad, but I just don’t expect to remember things.
The other thing is that I have had trouble with that was not mentioned at all to me by any doctor was no strength in my arms, aching all of the time, and tingling in my left fingers. My left hand gets very cold even with gloves and the tingling starts when I am wearing gloves. The surgeon said it is not from the surgery but I cannot believe that.
I think women who face mastectomy should be told the pssible side effects even tho they may minor in comparison to others. It took me 1 1/2 yrs to get my arm back to normal, through my own persistence. The second year was much worse to cope with than the first year because of the constant aching and hurting.

ann said...

Hi Dr.Love, I was diagnosed in Jan 2006 with DCIS. 6 month prior, my mammogram showed calcifications in the left breast and I was advised that watchful waiting was what was going to happen. I called my Gynocologist(a female) whom I trusted to give me an objective and clinical answer and what I recievd was that the radiologist knows what s/he is doing and I shouldn’t worry about it. Breasts are made to create milk and calcifications would be expected. I was 48 and 6 yrs from breast feeding. I was appalled and didn’t know what to do. So I waited until my annual exam 4 months later and had the nurse practioner tell me that this is my body and why the hell am I waiting and making myself crazy doing it, who has the time for this stuff– here go get a second opinion at this facility. That is exactly what I needed 4 month earlier. the Second opinion not only found the cancer in the left breast but hyperplasia in the right. I have since had a bilateral mastectomy with reconstruction and remain cancer free.

I also watched my mother-in-law die from Ovarian cancer 3 years earlier to my diagnosis. She had breast cancer 15 yrs prior to her ovarian diagnosis. I would like to see more information on the link between the two cancers. My gut reaction is that the BRCA gene is a small(yes they are significant)factor in the breast/ovarian cancer connection. Perhaps a link up with the Army of Women and the Ovarain Cancer Network.

Ellen said...

I’d like to see more discussion of opting NOT to have reconstruction (pluses & minuses) & the down side of reconstructive surgery. Not just possible complications or long term effects but the reality that the created breast may never feel like a real party of your body. Most books I have read spend a lot of space on reconstruction options and maybe prostheses, but not much on issues related to living in a post-mastectomy body.

Fortunately by the time I had a 2nd DX & was facing a unilateral mastectomy earlier this year, I knew several women who had had reconstruction and none of them were happy with the outcome (as many of the others here have reported). I have now discovered a large community of women who decided against reconstruction for various reasons, including many who also opt not to wear prostheses all or part of the time (& who are challenging the stereotype that they are forced to wear baggy concealing clothes). There is also a lot to be said about postponing reconstruction until you’ve processed the experience & come to terms with your new body.

Also, more encouragement to take time to get over the inevitable panic that sets in when first diagnosed & do research for yourself through whatever means you prefer, before scheduling surgery/treatment. Both times my doctors seemed to be pushing to get everything decided & over with as quickly as possible. The second time around I was able to cope better because I knew I didn’t have to rush into any decisions. And I had done a lot of reading after the first diagnosis so I had had time to assimilate info & knew my comfort level with the various scenarios. I had a great experience with the simple mastectomy & recovery, am happy with my decision not to have the reconstruction, and am becoming more comfortable with going out in public without the prosthesis on occasion. There are a number of good books by women who opted against reconstruction.

Barbara said...

I would like more information on the side effects of arimidex and aromasin (aromatase inhibitors). As my cancer was estrogen positive I was advised to take first one and then the other of these drugs. They both caused serious depression. This was not mentioned by my doctor although I later found allusions to this side effect on line. I took myself off of these drugs and the symptoms disappeared in about 1-2 weeks. I am now on a monthly injection of faslodex which, while expensive and not as easy as a shot, has no such side effect. I believe it is also better for me as I have osteopenia and a family history of osteoporosis.
I am not alone in experiencing depression on these drugs. I my very limited experience I know of two others whoses symptoms were even worse than mine and who did not realize the source of their problem until they talked to me.

Susan said...

I would like more discussion on how to prevent recurrence, particularly life style, vitamin D (inconclusive evidence but my doctors recommend) etc recommendations and how to live with the anxiety of having had cancer in the first place.
I was extremely fortunate to have DCIS detected very early just about a week from my 45 birthday(”we don’t find this much earlier than we found it in you”). I only had a biopsy, a re-excision, and then 7 weeks of radiation. So far, passed my first follow-up cancer free. But, I wonder, now what? I think I am living proof of all of the amazing advances in breast cancer treatment. A friend of mine diagnosed 15 years earlier with pretty much the same thing, had a much different set of options than I did in 2008. I only hope my six month old niece asks things like “so when did breast cancer get eliminated?”

I also think getting some advice on how to handle your last day(s) of treatment and life beyond. It was such a weird experience to have had so many people helping me through something so intensely say “good bye” and “good luck.” A bit of separation anxiety for sure, but also I think my support group members would agree, once you finish treatment, the emotional experience hits you like a ton of bricks. Tips on how to handle the next year and how to put it behind you so that you can get on with the business of life, pursue it to the fullest and thrive. I will always be a bit nervous when it comes to mammmograms, but I would like to have it be a footnote in my life and not a central character.

Thank you to Army of Women!

Joan said...

First, thank you for giving us an opportunity to tell you what we need. I have been living with bone metastases for 5+ years now. The information on life as a metastatic breast cancer patient/survivor is either outdated or non-existent. Those of us living day to day with breast cancer need support, infomation and hope. In my journey, I have been in contact with women newly diagnosed with mets, and women who have been living over 10 years with this daily challenge. Every where we look we see the emphasis on “cure”, which is not likely for us. Where is the information on having a good life with this challenge? Please don’t forget us as you revise your wonderful book.

Sandy said...

I would like to see information on natural compounded progesterone/pregnenolone cream. I started taking them 2 years ago after going through 3 years of hell taking arimidex, eligard(?) shots, several different anti-depressants, large weight gains & losses and finally had half of my thyroid removed. I started feeling “normal” again shortly after starting the cream. I did quite a bit of research on my own and found an ob/gyn doctor who was already treating women with the cream and having good success. One strange side affect I’ve had is having excess ear wax. I keep a q-tip near bed because I often feel my ears have a small amount of liquid when I sleep on my side. I had no idea what it was,
then one day I heard Dr. Nancy Sniderman on the “Today Show” talking about a possible link between ear wax buildup and breast cancer. Strangely, several years before my breast cancer was diagnosed (5 yrs ago) during a routine office visit to a GP he said my ears were blocked with ear wax and
had me come back to have them cleaned out. Has anybody else ever heard of
this?

Christine said...

I had a lumpectomy, chemo and radiation. I would have liked more information on lymphadema, specifically the biology. It was confusing to see a list of all the things to not do to avoid lymphadema and not understand how such a diverse list could all trigger arm and hand swelling. I eventually got that information and learned, but it would have been nice to have it or access to it earlier.

Cory said...

I have three separate questions, Dr. Love. 1) I am one of those women with very fibrous breasts. I get mammograms annually and do self-exams sporadically. How can I tell through all the fibrous matter whether I have a cyst, a tumor, or anything abnormal?

2) My nextdoor neighbor has just finished radiation for her third bout with breast cancer. Even though I have offered to help her in any way I can, she always says she’s just fine. What can I do to help make her life a little easier? Or should I just honor her privacy and leave her alone?

3) My doctor has me now ingesting Citracal Calcium Citrate with Vitamin D because of a severe defiency in Vitamin D and the possible inherent risk of breast cancer in my family. I’ve heard a lot of conflicting stories that supplements like this are just a bunch of hooey. What is your opinion?

Cheryl said...

I would like you to address the most current information about consuming soy products (or products with soy in them) if you have been diagnosed with and treated for estrogen-positive breast cancer. Thank you.

Kristi said...

Dr. Love,
I would love two things in the next book:

1st: My first biopsy I did not recieve good information from the surgeon’s nurse- she actually told me an underwire bra would be perfect! Terrible painful hematoma, drained by the second lumpectomy. BUT because it was labeled a partial mastectomy I suddenly had tons of support from the hospital and breast office. We need a way to inform the early biopsy patient!

Second: a good discussion of Tamoxifen. I had DCIS, put on Tamoxifen for 5 years. I made it two years before my uterus went nuts and I had a hysterectomy. Now the oncologist is saying it’s not always necessary for DCIS- why wasn’t that in the first discussion two years ago?
I have stood my ground and am now just losing weight (20 pounds after tamoxifen) and no medication for prevention of hormone receptive cancer- 8 of 8 points scored.

Megan said...

I am very happy to be part of this amazing movement and I’d like to thank you for leading this fight. I am 28 years old and do not have much breast cancer history in my family. However, I still feel everyone is at risk. I know in the future I should get a mammogram, but I am petrified of them. It seems like such a painful and invasive procedure and imagine I will put it off as long as possible. Any information you could provide in your book to help educate scaredy cats like me on the importance of mammograms and when to have them would be helpful.

rebecca said...

HOT FLASHES….I never had one until I was put on aromatase. I am 58.I had a bilateral mastectomy O9/12/06, and chemo. I take Paxil,Clonadine,And vitamin E just for relief that doesn`t come.The flashes are every 15 minutes 24/7, offset by boneracking chills. I have to get off the Aromisin for awhile to have ANY quality of life. I risk the cancer returning by not taking the drug or I have no life.I saw an endocrinologist at a large university hospitol.All he said was “welcome to menapause sweetheart”. My oncologist blows me off about it too.Both these doctors are male. I don`t feel male doctors really understand women cancers or menapause.I ask about studies for cancer,aromatase inhibitors,and the hot flash connection,but have gotten nothing.Please address this in your next book.I am sure I`m not alone!!!!!!!!!! Your currant book is my “breast bible”. Your dedication is incredible. You certainly have a star in heaven!!!!

Nancy said...

Rebecca. I was lucky as my various chemo treatments put me into menopause so I was so sick from the chemo I didn’t notice the menopause! You are taking a great risk. I have had trouble on aromisin. There are 3 other drugs in this catagory. I do much better on arimidex. Are you sure it’s menopause? I get hot flashes and chills regularily as well as all the other permanent side effect to deal with. If you are still getting your periods and haven’t gone through menopause you shouldn’t be on these meds. They are strickly for women after menopause. There are other drugs for women that haven’t gone through menopause yes but have had breast cancer like Tomifin (sp?). I think you better get it straighten out first whether you are post menoposal. You really need the cancer prevention pills - but the correct ones

Janine said...

Thank you for asking about these things, Dr. Love. I could really make and essay on this subject, but will try to nutshell it for you.

I believe that there are some changing ideas about chemotherapy and its effects on different breast cancer profiles. I did not want to take chemo at all, but was told for hormone positive cancer, it was the best choice. Now studies seem to be saying the exact opposite. I am so confused. They are saying that, other than ovarian shutdown, there is nothing that chemo does for the hormone positive patient. Thankfully, mine did shut down my ovaries, but I have learned there are other ways of doing that without the same systemic toxicities of chemo, so I wonder why such options were never offered me. If there are surgical or chemical ways to achieve ovarian ablation, that do not include chemo, could you make that clear in your book?

Also, Adriamycin is no longer necessary, I have read, as there is another drug (can’t find that article now) that does not cause the heart toxicities, so why are they still using it? My LVEF went down and has not gone back to where it was. It’s still in the normal range, but the mere fact it went down is concerning to me. I did not want to take Adriamycin, but was told cardio-toxicity was rare and there was no alternative, and only learned later that there was. If this other drug is as good, without cardiac effects, can you talk about that in your book?

I wanted to take the new taxane—Abraxane—instead of Taxol. I wanted to avoid the pre-meds. Something was tearing my stomach apart, maybe the steroids. But I was told it was not approved for adjuvant chemotherapy, only for stage IV. Well, I keep hearing of other patients getting it who are not stage IV. So is it approved for adjuvant therapy?

AIs are another area of confusion. I had to quit endocrine therapy because on top of sudden menopause, it was too much. I told my onc that I read the chemo-induced menopause was also very good for my prognosis, and he said not so much, and he wanted me on AIs. I had found out that AIs are only recommended for women who were in menopause at diagnosis, because they can reverse the chemo-induced menopause, and he said if that happened he would put me back on Tamoxifen–but I had quit that drug due to its intolerable side effects. Now he tells me the chemo-pause IS good for my prognosis. Three months ago he was all about AIs. This is confusing. Is chemo-induced menopause good for the prognosis of a hormone positive breast cancer patient, or not?

There is also more and more information coming out about Vitamin D3, diet, exercise, and many other supplemental choices and their impact on recurrence. Low fat diet and exercise are two of these that actually have studies confirming that they are similar to some of the drugs in their outcomes. Why are these studies not addressed by oncologists? Some of us believe strongly in finding natural ways of improving our chances, whether along with conventional means, or instead of. But if you turn down a drug your oncologist offers, the gloom and doom you hear is so disheartening, and you feel railroaded to accept what you don’t believe is good for your overall health. Can you talk a little about what is coming to light the areas of non-drug ways to fight recurrence, and what is valid and can be brought up with oncologists?

Also, who does what? What, I mean, do you bring up with which doctor? I have ongoing issues from treatment, but my new onc seems not too interested in these and seems to leave them to my PCP to address. If I didn’t ask for a copy of my blood work, I would never know what it says. I am at a loss what to do. He seems mainly interested in symptoms that could mean cancer, so I try not to take up his time with the other stuff. But if I don’t tell him, then he writes on the progress note how I am not having issues with ongoing side effects. I am confused on what an oncologist is supposed to address, during and after treatment, so I know what to bring up with him and what to just ask my PCP about.

I had a lot of confusion during treatment, mostly because doctors were not telling me much, not going over my final path report with me, not giving me options, and if I brought in questions or thoughts from my own research, they downplayed it or flat out told me I was wrong and to stay off the internet. Later, I found out I was right, and doctors just didn’t want to spend time with me and include me in the overall plan for my treatment (I have changed oncologists now). So, I think, if you can ever address something in a book for doctors, please address that they need to listen to, help educate, and work with their patients and then perhaps we won’t need to go to the internet so much, or change oncologists in mid-stream.

I am sorry if I went on too long here. It has been quite a journey so far. Thanks again for all you do, Dr. Love.

Janine said...

I’m sorry, I forgot something else not addressed all that well by the medical community–issues of survival. Maybe not just the medical community–the problems are wide ranging, so I don’t even know where to begin suggesting what you put in your book. But when treatment is over, suddenly it all crashes down on you–what your adrenaline kept you from feeling, what the meaning of living your “new normal” means, and so much more. Job loss, ongoing effects of treatment, body image, relationship issues, financial wipe-out, ongoing complications–there is just so much to deal with. You are dropped out of the tree of active treatment to hit the ground running again, and you can’t even walk. Issues of survival and resources for the survivor would be good to address if you can. Thank you!

Susan said...

A recent study released data regarding the use of HRTs. An increase in breast cancer was reported when they were used for five or more years but an increase wasn’t reported when they were used under two.

I had both LCIS and DCIS in 2001 and was on Tomoxifen for almost 4 years. And, I continue to hear that hormone replacement is not advised - - but wonder about this new report and whether using HRT for under 2 years is still not advised for women who have had breast cancer.

Also, there is a nurse, Catherine McGregor, in Marin County, CA whose practice focuses on hormone replacement therapy. She is associated with a practice that includes MDs, they see many breast cancer survivors, and place all who are willing on HRTs. She has said that the Women’s Health Initiative results on HRTs were misleading because it reported on hormones that contained horse urine and the HRTs her practice prescribes do not (she provides lots of data and mentions many MDs/researchers who support this hypothesis). I suppose this is the whole “bio-identical” argument, but there seem to be many in and out of the medical profession who tell patients (like me) that the “new” hormones do not increase the risk of breast cancer. What gives?

Janine said...

And one more note:

I am confused about when chemo is given before surgery and the lesion vanishes, and the woman goes through surgery and they find no cancer in the path report–does this mean she didn’t have to lose her breast? I am confused about whether chemo alone can cure the cancer without having to cut at all. Also, I read somewhere that chemo can cure nodes so surgeons should not be taking them so lymphoedema can be avoided. Is this true? I can no longer find the article.

I have been thinking about my lymphoedema, too, and how it was never explained to me that it could be more than in my arm/hand. I have it in my breast, back, and axilla, as well as arm and hand. I also have been wondering if I had gone through with the full mastectomy, would I have less chance of all this lymph backup? I had a large lumpectomy, also called a partial mastectomy or quadrantectomy. Since breast tissue drains into the lymph nodes that have been taken, does it lessen the load on the others that have to take over if there is no breast anymore? I cannot find any studies on this. I think explaining lymphoedema and what areas it can affect, and talking about whether it is worse or better depending on the surgical choice, would be great. I know about the SNB, but did not qualify.

Sudden menopause as a side effect of chemo has been awwful, and I don’t think it is understood enough by doctors just what it puts a woman through. Studies have shown it is harder than natural menopause. I do believe women need more of a serious approach by their doctors regarding what they are going through, and it should be recognized by SSI as a disability as long as it is interfering with the woman’s ability to function. That, and ongoing effects of treatment in general.

While you don’t have the power to make all that happen, if there is any way to joing advocacy efforts addressing these types of issues, it would be great if you could highlight them in your book.

Thanks again, Dr. Love.

Kay said...

In August of 2008 I had needle biopsies of cysts in each of my breasts. The results were atypical cells. I then had surgical removal of the cysts and fortunately the tissue was benign. What I will mention next may seem a bit whacky, hovever I know it to be true. I have very small dense breasts and whenever I would have my routine mammograms done, I would experience incredible pain with doing so which lasted for days after. I truly believe that what led up to the cysts in my brests was the pressure on the tissues. Each year my physician encourages me to have a routine mammogram, and each year I just can’t bring myself to doing so. This past fall I was having physical therapy for a whiplash injury to my neck. This involved laying on my abdomen twice a week for several weeks for therapy. In hindsight I should have asked for a pillow to cushion my breats, however I didn’t think to do so until I was once again experiencing cysts in my breasts. It was a tough decision for me as to whether I would go in for a mammogram or not. My physician and other doctors have told me that they have never heard of this happening before. Therefore my physician was not willing to order a CT or MRI instead of the mammogram. Having been in the nursing field for over thirty years, I know anything is possible. I chose not to have the mammogram. I just couldn’t do it. What I did instead was to put warm moist packs to my breasts and gradually the cysts seem to have gone away. There was a “higher power” that really gave me peace with my decision. And hopefully I will never regret the decisions I have made over the years. Thanks for “listening”. Kay

Sandra said...

Dear Dr. Love,
Thank you for all you do for BC suvivors. I have your book and am looking forward to the new book. I am a diabetic and wood like information concerning navigating BC treatments as a diabetic. Also I found a lump in my breast in Oct.04, I had a mamo, and ultrsound, they were both neg. In
Oct. 05 mamo still neg. In Oct.06 The lump showed up in my mammo. and it was cancer. I am sixty years old and I have never missed a mammo. I can’t tell you how devistated I was. I felt like I had done my part and the medical community let me down. We need a better way, I don’t understand how a mammo and ultrsound can find a calcification in some breast and miss a 2.3 cm in mine.I still get my mammo.it’s digital now.
I still get my mamo.

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