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Wouldn’t it Be nice for Pink to Just Be a Pretty Color Again?


Cancer changes your life forever and in ways you would never imagine, but you try to move forward with life, thankful you are still here. I, like many other survivors, live each day with fear that it can come back, and that worry is always in the back of my mind. I am a two time breast cancer survivor and was first diagnosed in December 2000, with triple negative, invasive ductal carcinoma, stage IA.  Following my diagnosis, I underwent a lumpectomy followed by six months of chemotherapy and then six weeks of radiation.

Once I finished treatment and was declared cancer “free”, I continued with yearly mammograms and personal breast checks. Unfortunately, in April 2005, I found another lump in the same breast where I had had the lumpectomy just four years prior. I stood in the shower frozen in one spot; hand over my breast for what seemed like an eternity. I immediately went for a mammogram, which lead to an ultrasound and a biopsy.  Again, the result was cancer. This time around, I underwent a mastectomy and had my lymph nodes removed as well. The diagnosis: invasive ductal carcinoma, stage IIA, clean nodes but vascular invasion. However, this time my cancer was hormone positive.  I underwent six months of chemotherapy, which was followed by five years on Tamoxifen/Aromasin.

Going through cancer the first time is sort of like wearing a blindfold; you really don’t know what to expect, you take a deep breath as you go through each phase. I made a negative into a positive, and was grateful to be alive to see my daughters grow up. Having been healthy all my life, I continued to exercise and take care of myself.  When the cancer returned it was like being hit with a ton of bricks. But through strength, determination and the support of my husband, who was there for me always, I made it through. After some changes were noted in my left breast two years ago, I elected to undergo a prophylactic mastectomy. It was for my piece of mind to sleep better at night. I knew fully well that this procedure could not guarantee that cancer would never return in my life, but it was a decision that was right for me. After many reconstructive surgeries, I am here stronger than ever.

This year, I was honored to be chosen as one of eleven survivors nationwide to represent Ford Warriors in Pink as a Model of Courage. It is important to me, as a two time survivor, to let others know they are not alone, and to give hope—hope that you can get through this. I also believe it is very important to emphasize that until we know the causes and ways to prevent breast cancer, early detection is all that we really have on our side, so more preventative and cause-focused research is needed. This year, Ford has opened up the Warriors in Pink family to include four different breast cancer organizations—giving you the opportunity to choose where you want your donation to go. When selecting an item, you actually see the amount that is donated with your purchase. I am so thrilled that the Dr. Susan Love Research Foundation is one of this year’s choices.

It was Dr. Love’s breast book that got me through my first experience with breast cancer. Her honesty and frankness about this disease and all its unknowns was what I needed to hear. I didn’t want information just covered in “pink”. I needed to know what I was facing at diagnosis. When the Dr. Susan Love Research Foundation’s Love/Avon Army of Women was formed in 2008, I instantly became a member.

There are so many charities out there helping in the fight against breast cancer that at times it can be overwhelming. The Dr. Susan Love Research Foundation and its Love/Avon Army of Women program is what I believe in and am proud to be a part of. What sets the Foundation apart from all other breast cancer organizations is its mission to move breast cancer beyond a cure by understanding the causes and ways to prevent it. As a survivor, I want to be able to help any way I can in putting an end to this disease. The Foundation’s Love/Avon Army of Women is looking for the help of survivors and those who have not been diagnosed with the disease, and is encouraging all women to take the next step in breast cancer advocacy and participate in research studies. It’s a good feeling to know that I, just an everyday person, can help bring an end to breast cancer. There are numerous studies you can participate in through the Army of Women.  They have a number of online questionnaire studies that are easy to understand, and take very little time to complete. When you hit the send button, you feel really good!!!!

Along with questionnaires, I have also participated in the “Quality of Life in Breast Cancer Patients and Survivors” study with the Army of Women. This study at the University of Illinois at Urbana-Champaign was interested in measuring factors that affect quality of life in women who have been diagnosed with breast cancer. I answered a few questions online about my health history, physical activity history, and quality of life. Then, I was sent a small meter (similar to a pedometer) to wear for a period of seven days to measure my activity. Following the seven days, it was returned and I finished with a final questionnaire…Painless!

Every time there is a call for a new Army of Women study, I am so happy to participate if I meet the requirements. Breast cancer is such a complicated disease. You can have two women with the same identical diagnosis, yet one responds poorly and one will have total remission. Why is that? Why did I have cancer twice in the same breast, yet I first had triple negative and the second time I was hormone positive? So many questions…

There is still so much to do in mapping the breast and finding the reason behind breast cancer. That is the type of research the Dr. Susan Love Research Foundation is doing, and that is why WE, the Army of Women, are so important. I urge everyone to join this program at www.armyofwomen.org/getinvolved and help all of us finally put an end to this disease. I know I am ready! And I know Dr. Love can count on all of us to help her in her mission to eradicate breast cancer once and for all.

Carol LaRegina

Two-Time Breast Cancer Survivor

Army of Women Member

Raleigh, NC

Vicki said...

Carol,

I was diagnosed with Non-Hodgkin’s Lymphoma in 2000 (lymph node in neck), had radiation. Had a relapse in 2005, this time in my spleen which had to be removed and a round of chemo therapy. Still here…happy you are too!

There are so many questions, not enough answers. I hope there is more research done on my cancer…hang tough my friend…we need each other for support!

Vicki Kret
Detroit, MI

Cathie said...

Thank you Carol for your story & your concise articulation of why you support the Susan Love Foundation & Army of Women above all other breast cancer orgs. I agree. Her book also got me through my breast cancer diagnosis & treatment over the last year. I have done surgery, chemo & just finished radiation, am working on fitting more physical fitness activity into my life than ever before, & am looking forward to moving on w/a return to work etc. in the near future. More power to you & thanks again for your story …

lynn said...

Thank you Carol for sharing your story and your dedication to helping all women. I send you love, good energy and warm sunny days.

Ann said...

Carol, I’m a two time breast cancer survivor as well. The fear never leaves us, but we do find a way to continue to live our lives to the fullest.

Dr. Love is the gold standard for me and my contributions will continue to go to The Army of Women.

Donna said...

Thanks Carol, it helps to know your’re not alone and that women have gone before you. I’m on my second bout with breast cancer and am recovering from a mastectomy. So I appreicate your story, hard work and your support for all the Dr.Love Foundations. You are a wounderful mentor to us all. Cancer might slow me down but its not going to get me down.
Blessings!

Donna Jeans
Canton,MS

Lynne said...

Carol - You give us all strength to go on and also to support friends with breast cancer. Many bible verses quell my worry. Here are my two favorite. “Do not be anxious about anything, but in everything, by prayer and petition, with Thanksgiving, present your requests to God. And the peace of God which transcends all understanding will guard your hearts and your minds in Christ Jesus.” Phil 4:6,7 Also, “Consider it pure joy when you face trials of many kinds, because you know that the testing of your faith develops perseverance.” Hope these verses help others too.

Mary said...

Carol, beautifully expressed! I, to, am an ardent fan of The Army of Women and their mission to go beyond early detection to stopping cancer before it begins. Like you I have participated in various trials through this wonderful organization. Also, like you, I have had two breast cancers, both primaries, two years apart, one aggressive, one a slow grower. Neither were found by mammography and the second was even missed on MRzi, ultrasound and Cone Beam Scanner. I found both on self breast exam. If we can’t prevent it we should have better screening methods, that would serve the different population of breast densities, equally well. Hmmmmm, wonder if there has been a study done on repeats. Like you I keep on keeping on, looking forward to the day when there are kinder, gentler treatments and more importantly when the Army of Women, the researchers and the women recruited, eradicate this disease!

Debra said...

Thank you, Carol, for sharing your experience and your reasons for supporting the Love Army of Women. I totally agree and have participated in several studies including one in which I used vacation time and flew across the country to participate. That one WAS about breast cancer recurrence! I am looking forward to puboication of the results.I initially had a lumpectomy and was treated with radiation and chemotherapy. Two years later I had a recurrence in the same breast and had a mastectomy and another round of chemotherapy. In both cases, mammography did not reveal the cancer. I found them myself. Please, Everyone, be aware of your body and look into any changes which seem out of the ordinary.

jeanne said...

Thanks Lynn, for sharing your favorite scripture verses. For me too, it is God’s Word, and His peace that has always given me strength. My first breast cancer was 17 years ago. It was ductal. I was in a clinical trial, with double doses of adriamicin and cytoxin. I had a recurrence in the same breast 2 years ago, but it was lobular, so not the same cancer. They still call it a recurrence if it’s in the same breast. Whenever I get emails from Army of Women, I’m hoping it’s something I can participate in, but it’s usually not. I do the surveys if it is appropriate. Best wishes and God bless all you other survivors on here. (Gastonia, NC)

Eileen said...

I am finishing up a year of Herceptin after a third “go around”. The second time was a local recurrence in the scar left after mastectomy. This time another local recurrence but in the pectoralis muscle above the mastectomy breast. I do would like to see a study about recurrences. Doctors are very positive this time after a long year of chemo, radiation and now herceptin — as well as montly Faslodex shots (they said the Arimidex and Aromasin did not do their job in my case).

Heather said...

I agree with eileen, I would like to see a study about recurrences. However, I do want to say Bravo to all of us who have moved beyond our diagnosis and treatments. Thank you Carol for a well thought out post. As a 2 time survivor (mine was estrogen+ when diagnosed in 2006, then a recurrence in 2007-estrogen- and Her2+) who lost my mom to breast cancer in 1987 I wrote a memoir about my experience to help those newly diagnosed. I speak about early detection and being you own best health advocate because we don’t have a cure yet. I feel it’s so important for us t support each other and to be involved. Together We Are Stronger!
Heather
Salisbury, NC

Antoinette (Toni) said...

I’m also a two time breast cancer survivor (on the same breast) but mine was twenty years appart. I had a lumpectomy with removal of lymph nodes, chemo and radiation in 1991. I also took Tomoxifen for several years. When I was diagnosed after a mammogram and byiopsy in 2011 it hit like a ton of bricks especially having to have a mastomectomy because of the radiation treatments I had received twenty years ago. I too have particapated in several studies and have not shied away from talking about my experiences with cancer. I’m now 70 years old and reletivly healthy. I’m happy for every day I’ve been given and realize that other perple are much worse off than I am. My cancers were caught and treated very early. Best of luck to you.
Toni
Lilburn, GA.

Linda said...

How I needed to see these beautiful responses. I was diagnosed in 2007 with invasive ductal carcinoma; underwent chemo and radiation; and went the rounds of Arimidex, Aromasin, and Tamoxifen. The tamoxifen caused breakthrough bleeding so just to be sure, I underwent an endometrial biopsy which, blessedly, was negative. Then I received the second diagnosis in 2011: Ductal carcinoma in situ. I felt that I had been splattered on a bed of boulders thousands of feet below. I had a bilateral mastectomy with reconstruction in December of 2011. Due to tissue damage from the radiation, the incision didn’t heal properly so more surgery was done to excise the damaged tissue. Then I developed a staph infection (NOT MRSA) and had to have all the recon materials removed.I am awaiting a date for my “reconstruction reconstruction!” I am deeply grateful to those of you who have had recurrences and were willing to post and share. I had NO idea there were so many of us. The impressive item here is that we all went through the correct “hoops”-surgery, chemo, radiation, medications,exercise, etc.- and yet this insiduouse disease hit us again. I would gladly participate in a study regarding recurrence.
I’m offering prayers of thanksgiving for your honesty and for your comfort and peace, fellow soldier sisters!

Maria said...

“Every time there is a call for a new Army of Women study, I am so happy to participate if I meet the requirements.”

Amen, Carol. You can count on me.

Maria
Fairfax, Va.

jeanne said...

I do like reading everybody’s posts. Thanks to you all. It is interesting that so many have had a recurrence in the same breast. Since my recurrence, 2 years ago, was lobular, it didn’t show up on a mammagram. I just had been having pain, which was increasing over the year. Anybody have that? It didn’t even feel like a lump.
This year I refused a mammagram since it didn’t show the lobular breast cancer. I researched and found that in a town 50 minutes away, they had the BSGI. (breast specific gamma imaging) They don’t even have that in Charlotte, which is right next to where I live. So I went to Hickory to get that done. It showed, “non suspicious breast changes” in both breasts. Not sure what that means, but I have pain in the reconstruction, and in the other breast, so I was concerned. Has anyone else had the BSGI? I had read it has a 93% accuracy for finding lobular breast cancer.
Hope you are all doing well and that no one has distant mets.
These are verses I like, “Whom have I in heaven but You? And besides You, I desire nothing on earth. My flesh and my heart may fail , But God is the strength of my heart and my portion forever…..But as for me, the nearness of God is my good; I have made the Lord God my refuge, That I may tell of all Your works.” Plalm 73: 25,26,28

Joyce said...

Hi Carol:

I enjoyed reading your hopeful articlea and admire your courage. I was just diagnosed with Stage III TNBC myself in June 2012 at age 55 and am 2/3 of the way done with my chemo treatments. Surgery next then radiation. I am going for genetic counseling next week to determine if I might have the BRCA I gene, since it would affect my decisions about surgery.

I too live in Raleigh, NC where I am a practicing artist and communications professional. I would love the opportunity to talk with you by phone or meet sometime for tea if you are open and have the time. So far I have only met one other person who is a 5-year survivor of this type of cancer and would love to broaden my network.

Saeed said...

I would like to thank Ms Carol LaRegina for sharing her story with us and I would also like to thank Dr love ( army of women) for sending these experiences to us.

Brenda said...

Carol,
Your story is inspiring to me. I have the opposite breast cancers that you have described. In July 2011 I was diagnosed with IDC ER positive. I did the lumpectomy, chemo, and radiation. This year, July again, I returned for 1 yr. mammogram, only to discover I had a place in the opposite breast. This one is triple negative IDC. I am doing the lumpectomy again, chemo again, and radiation. If mine comes back I will be following through with mastectomy. I am extremely positive by nature and am thankful for the year long journey I have had. I feel confident toknow what to ask and feel comfortable with my choice at this time. I too joined Army of Women and have become involved in many surveys. The more we participate, and the more information we help to put out there can only be helpful and hopeful as we move forward and survive. Your story gives me added security in knowing that others are dealing with the same issues as myself and I am empowered. Thank you for sharing your story. These are the truly beneficial websites to keep us all confident and strong as we fight this disease.

BethAnn said...

Thank you for the thoughtful and uplifting message Carol. Thank you to everyone else who has posted their experiences and messages of hope for us all. I was diagnosed with TNBC, Stage II, in December 2010 at age 39. Made it through 6 rounds of TAC chemo and a bilateral mastectomy with reconstruction. To Joyce and all others in treatment now, God bless you on your journey as I know you are in the middle of it. You will make it through! On the hardest days, just remember that it will get better and you are not alone. The fear of a recurrence is there but every day I try to keep it in perspective, give thanks, and live the best, healthiest life I can. Love to all.

BethAnn
Richmond, VA

Carol said...

Wow…..its amazing how many of us are going or have gone through this disease…….. and we all know the uncertainty of it, but manage to move forward and live our lives to the best of our ability….. we are all strong and couragous warriors……. I am so happy that all of you believe in the Army of Women and the Dr. Love Foundation cause ……
Joyce, yes I would love to meet with you ! feel free to email me @ cklala53@gmail.com ……
My prayers and good wishes to everyone of you….. we will find the cure….

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