There are so many stories on FORCE and so many members willing to share their experiences. We hope these profiles can help you connect with our community and get advice from people like you!
Learned I was BRCA2 positive Autumn 2013, had bilateral simple mastectomies Dec 10, 2013 and opted for oophorectomy(BSO) 2/24/14. I feel so relieved!
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My sister is a breast ca survivor, dx when she was 38yo, 11yrs ago. I have felt tremendous anxiety and fear since her dx almost as if my intuition "knew" the BRCA dx. Back then, it was difficult to do genetic testing without my sister being tested too, she is not interested in being tested. My OB/GYN encouraged testing and he referred me to a breast surgeon but didn't give me any other resources. I am a social worker and emailed a physician friend at NIH/NCI who strongly encouraged genetic counseling w a card carrying genetic counselor! I began my search via the internet, found FORCE, and made an appt w genetic counselor at Beaumont Hospital. My husband was very supportive as were most of my family, friends and colleagues. I then learned two of my cousins were both BRCA2 positive, (one is a 5yr breast cancer survivor and her sister was BRCA2 positive as well), they were both extremely supportive! After meeting with genetic counselors, oncologists and breast surgeons, I decided to have prophylactic bilateral simple mastectomies. I was stunned when genetic counselors made genogram of our family and I saw the cancers carried under BRCA2 within several generations.
I received tremendous support from survivors and previvors too!
I was in crisis, I reached out for support and never expected what transpired... I have never felt so judged and felt blindsided by the reaction of some folks. I had an expectation they'd be supportive and they tried to be but I still felt judged. People said things like, "Are you just doing this because of Angelina Jolie?" "Are you sure you don't have cancer?" "You know what you're doing is really extreme?" "I think you're nuts, i'd never part with my breasts" "But you don't have cancer", These comments created a lot of unnecessary stress during a very difficult time. Emotionally, at the time, I did not have the energy to attempt to educate these folks on risk factors. It triggered my grief and made me miss my dad! I was shocked as many saw me as brave yet others saw me as insane! It instilled emotions I had never experienced before, yet made me empathize for minorities far more than I already do!
Having worked 17yrs as a medical social worker, I knew I did not want breast reconstruction. I was blown away by the assumptions that I was getting implants. The comments of even receptionist's at doctor's offices, "Oh, you have to have reconstruction, you're too young not to have breasts" "Whose your plastic surgeon?", "What about your husband?" and so forth. My husband read NYTimes article, "No Easy Choices" and we viewed reconstructed breasts. My husband said,"I just want you here, get surgery to alleviate risk factors and forget reconstruction, its too much surgery and more health risks". Although rare, my surgeon was extremely supportive and said she understood my decision. My aunts had prosthetic breasts and it seemed "normal" to me, they made it seem like no big deal. I went to Comfortably Yours, a store in my community for prosthetic breasts and am VERY satisfied with my C cups! I have no regrets! I LOVE their staff too!
I would Absolutely do the Same Thing Over Again!! No pain with mastectomies as no lymph node involvement! LOVED my surgeon Dharti Sheth, MD! My incisions/scars look amazing as she knew I wasn't having reconstruction. I had DD breasts,I had no attachment to my breasts. I and am in awe how fast I am able to go on treadmill breast free and I feel free! Free of risks and literally lighter! It's great not to even wear sport's bra on treadmill! Land's End and Athleta clothing also for mastectomy and I am very happy with my new bathing suit!
I had tons of support from my RN friends who helped with my drains post op and an OB/GYN friend who was there for surgery and checked on me post op.
I LOVE my prosthetic breasts and another pair for swimming too! I love wearing sport bra style bras now too! Breastfree.org has been another great resource for me in addition to FORCE! I also got the BFFL bag at bfflco.org mastectomy bag and that was VERY beneficial pre and post op.
Although I was open with BRCA situation on FB in an attempt to educate others who might find themselves in similar situation, I wish I would have blogged, recorded entire process to further assist other women. I do hope to write more about my decision once fully recovered and since I am already a public speaker, I hope to give back to FORCE and Beaumont Hospital by speaking to help other women. I am a very strong woman and the lack of support and judgement I experienced was difficult. I would like to educate others as genomics seem to be the future. I am pleased media coverage regarding studies and BRCA as once accepted by mainstream, i'm certain judgements will drastically decrease
Reading the entire website was a tremendous comfort pre op and continues to be now! My husband and I met with my OB/GYN re ovaries and he recommended waiting until after menopause in a few years, then total hysterectomy.
I took FORCE'S advice, my husband and I met with a Gyn/Oncologist who I found thru FORCE website. Robert Morris, MD who suggested oophorectomy as he's finding, "Less is more, least invasive surgery and get on with my life" We agreed with him as i've had menopausal symptoms for several years already and just wanted reduce risk of ovarian cancer. That said, I can live with onset of surgical menopause,(fortunately, I haven't experienced ANY symptoms yet:) Oophorectomy was shorter recovery but pain was worse, I am feeling great one week post op and the good news as a result of this is no more monthly friend!
FORCE has been my guiding light throughout this BRCA situation and I am so grateful I stumbled upon you when my friend at NIH/NCI told me to meet with a card carrying genetic counselor!
I feel so empowered and blessed that I was given options as a result of genetic testing! My life has drastically changed and I have also learned to slow down! I am a psychotherapist in private practice and a professor in a university setting. I have been a workaholic and my family is always on the go. As I recovered from mastectomies, I realized I had not Ever been off work for more than two weeks since 1990?! It saddened me that it took surgery to slow down and actually be fully present visiting with company daily. That was a way of life for my grandparents, a lifestyle I observed as a child, and no one was ill or had surgery.
I also facilitate retreats for women and couple's and plan to place far more emphasis on being fully present, and add more YIN to my own life! We're all so busy, busy doing what?
I feel empowered like I kicked cancer's behind for so many family members and friends, especially my niece Kelly and my friend Michele who both died of cancer way too young and did not have this opportunity.
This has been especially challenging as my dad died 12/22/11, he was not just my dad, he was my rock! I prayed so hard to get signs as I wondered what he would've wanted me to do. It seemed whenever i'd wonder, i'd get what I call a "God Wink" for example, one day it was heavy on my mind and I received a card from his friend saying "Your dad would be so proud of your decision" and on 2/24/14, the night of my oophorectomy, Brian Williams-NBC Nightly News did a story, "Study: Ovary Removal May Reduce Risks for Women with Cancer Gene" Another God Wink, if it wasn't a sign from God or my dad, it was still timely and certainly confirmation I made the right decisions!
I am so blessed and grateful for Genetics, Force, Breastfree.org, Dharti Sheth, MD, Robert Morris, MD all Previvor's who supported me and my cousin Mary as well as my husband for accepting me just as he did prior to my surgeries! He is a Real Man! I am so blessed!
I am ready to get on with life and living it to its fullest! Thank YOU FORCE!