- Posted October 2, 2012 by
Oceanside, New York
This iReport is part of an assignment:
Tested for the breast cancer gene?
It has been four years since she finished her last surgery and today she is not only living breast and ovarian cancer free but she is thriving.
She runs a not for profit group that provides resources and support for women going through anything BRCA gene and hereditary breast and ovarian cancer related.
- Jamescia, CNN iReport producer
I never thought that I would be writing this, but since my experience, I’ve been told about my amazing spirit, & how I should share my experience to help others. My experience led me to start a group for BRCA carriers called previvorsandsurvivors.com.
Okay… I’m going to say it…I’m a PREVIVOR! How liberating it is to say it! I didn’t even know they had names for people like me!
My story started 23 years ago when I watched my mom die from breast cancer. By the time her cancer was diagnosed, it was too late. I cannot urge you women enough to go for a mammography, a sonogram, or an MRI or now new tomosynthesis. Prevention is key to survival. Today, women don’t have to die, just because they hear those words…YOU HAVE BREAST CANCER!
Five years ago another maternal relative was diagnosed with breast cancer. They now have genetic testing for the breast cancer gene, and because of the family history she had it done. She had a positive BRCA gene meaning there is a genetic predisposition for breast & ovarian cancer. It’s….coming for me!
I went for BRCA (genetic testing) & I too found out I had the gene. Along with my genetic counselors, and breast surgeon I made the incredibly difficult decision to have a prophylactic double mastectomy. Hence…PREVIVOR…a person who as of yet has no cancer, but is predisposed to it, and in my case removes her breasts to remove the risk of dying from breast cancer. If that wasn’t enough, it was also recommended that I lose my ovaries & Fallopian tubes.
THIS WAS AN AGONIZING DECISION. I was lucky in one respect…I had always been vigilant in testing because of my family history so I had my breast doctor at my side already and valued her opinion unquestionably. I was blessed to have her as my doctor and leader. I was in denial for about 20 minutes. I argued with my incredibly human and kind breast surgeon and then I smacked myself in the head and said… female parts or my life? I was in denial like everyone else. Why should I do this? I don’t have cancer! I’ll remove my ovaries & tubes…it will lower my risk! I’ll be vigilant…I’ll go for testing every 3 months…I will!
And…my doctor, bless her soul said very quietly…TOBEY, YOU ARE AN INTELLIGENT WOMAN…WHAT HAPPENS IF ONE CELL REMAINS? I screamed…I guess I die!
And there my decision was made…I was not yet ready to die!
My Doctor put me in touch with a very kind, knowledgeable and compassionate gynecologist who was in the forefront of BRCA women needing an oophorectomy. I never had a second of pain from this procedure. The only way I know that anything was done is that I have tiny laparoscopic bikini scars from it.
The next Doctor I had to choose was my plastic surgeon. This was the hardest doctor to choose! I obviously wanted someone skilled and whom I could be comfortable talking to and expressing my needs. I had the “very best plastic surgeon in the world ladies!” I hope you all can say the same about yours when you are done!
I now had my first candidate to convince that a mastectomy was a necessary decision. My newly diagnosed family member! She of course like any reasonably thinking person wanted a lumpectomy & radiation. But, in my opinion, this was just not enough. Trust me, she is stubborn, but I already lost my mother to this horrible disease, I was not going to lose another family member.
I will ask all you out here in cyber land the same thing I asked her. DO YOU WANT TO LIVE OR DIE? That is the number one question. After all, if one…one cancer cell gets loose and goes undetected you are in for much more grief and decision making than merely a mastectomy. After you get past the fact that you are going to lose your breasts…don’t look back! Only look forward. It’s not an easy road…but a road worth going down.
In our case, being BRCA positive put us both in a high category for getting breast cancer, and certainly a chance of recurrence. I look back now, & say why was this such a hard decision? Once you move forward, only focus on the positive. I had sticky post-it notes everywhere…on my night table, on the bathroom mirror, the kitchen cabinets. They all said the same thing!
1. I am saving my life!
2. I will never need a mammography again!
3. I will have beautiful perfect breasts!
4. I will never have to wear a bra again!
Ladies, if you can think of any more…just add them to the list!
I’ve counseled a few women & mostly I hear the same thing…so, I will share. It’s really all excuses, & fear. I’m hoping this website will grow, & more women will find their support system here, and we can have a sisterhood.
Fear? I was more afraid of breast cancer than removing my breasts. NEXT!
Recuperation & Pain? Wasn’t so bad…they have great drugs on the market today. I was out of work for 5 weeks after my mastectomy. I would have been back to work sooner, but I’m a health care provider, and some of the equipment was hard to push! NEXT!
I’ll look like a freak? Good one…Okay, I’m not going to mince words here…You’ll look different at the beginning, but my relative and I chose plastic surgery, and we now look better than G-d made us! Get a good plastic surgeon consultation—and don’t be shy! If you don’t like the first one, go look for another one! This is the time to have a skilled and compassionate Doctor that you can relate to. (One that understands tears & fear!) NEXT!
What about sex? Well, was it good before? If you have the right compassionate partner… hello!!! Forget about breast sensations… they are gone…but use your imagination…nothing else has changed! NEXT!
How long before I feel good again? I started this ordeal September 2007, & finished my reconstruction March 2008. April…I felt great! Exercise is important too! Attitude is everything! I feel great, I look great! I’m back to work on a full schedule! I’m alive & here to tell my story!
Please join me in telling your story also… come by our website.
Love, strength, hope & health to you all.