|The wise and beautiful Angelina Jolie after publically |
announcing her decision to do a Prophylactic Mastectomy
due to familial high risk and her BrCa 1 mutation
So said my Breast Surgeon, Dr. Andrew Ashikari to me this morning, as I (happily) completed my 35th bi-annual breast exam, 17 years after my breast cancer and 13 years since he performed my own nipple sparing, subcutaneous prophylactic double mastectomy. There. I said it.
Yup. Me and and Angie are BrCa 1 twins.
Yesterday was a HUGE day for the high risk community. Angelina Jolie, one of the world's great beauties and biggest stars, announced that she chose to do a prophylactic mastectomy. Because Angelina inherited a BrCa 1 mutation (presumably from her mother, who died of ovarian cancer at 56,) her risks were a staggering 87% chance of getting breast cancer in her lifetime. As a motherless mother, she chose to enormously reduce her own risk, for the sake of her well being and that of her family. Bravo Angel Angie!
Much will be made of her advantages of her being able to afford genetic testing. That's a good thing and something she knows she is appropriately shining a spotlight on. Myriad Labs has despicably held the high risk community hostage with their patent on these tests, which run about $3000 and is often covered only after much battling with insurance companies, if at all.
A decision about whether or not this patent is legal is before the Supreme Court as of this writing. Hopefully, Myriad will lose and other companies will be able to bust open their monopoly, thus making these tests more afforadable to women who have strong maternal AND PATERNAL histories of breast and ovarian cancer, as well a pre-menopausal breast and ovarian cancer patients, who are often found to have BrCa mutations.
I refuse to read comments by those who think this is hysterical or radical. It's neither. It's smart. It's brave and even harder to do before breast cancer strikes, because there is still the illusion of breast health, fragile as it may be.
I know many, many women in the high risk community. I don't know a single one who has ever regretted doing their prophylactic mastectomy. I do, however, know of women who knew of their risks, chose surveillance and got breast cancer anyway. Regret... knowing they knew and didn't act, is often the bitterest pill to swallow. Trust me. You don't want to let the cancer genie out of the bottle if you don't have to.
Angelina, however, may have chosen a more complicated surgical path than is necessary. 3 steps when it could have been achieved in one. Perhaps she didn't even know it was an option. Now you will;
13 years ago, when I asked my own surgeons do perform this surgery after finding out about my own BrCa 1 mutation, 4 years after my initial breast cancer diagnosis, I was a pioneer of sorts too.
Though ultimately, I did have to do a two stage procedure, 3 years later Drs. Roy and Andrew Ashikari (Surgical Breast Oncologists 914-693-5025) and Dr. C. Andrew Salzberg (Board Certified Plastic Surgeon 800-433-7410), pioneered a way to do a ONE STAGE prophylactic subcutaneous nipple sparing mastectomy.
The nipples are biopsied on the table and if all is clear, they are spared. Through the use of a material called Alloderm, a skin pocket is created, thus removing the need for "expanders", (which include painful saline stretching over several months) and a second revision, final surgery. These great surgeons are 3 of my personal heroes, brilliant, kind and compassionate. I was delighted to be honored by them at a fundraiser I chaired for the Ashikari Breast Center 2 years ago.
This is huge, and IMO, will be the future of reconstruction. These Drs. have successfully performed this procedure on hundreds of women who fly in from all over the country and have taught their method all over the world to other surgeons.
I proudly was the person who brought this to the attention of the high risk online support group FORCE, too late for me, but not for my courageous FORCE sisters Sharon and Mayde, two of the first, who graciously shared their experiences and helped others go down this path, with beautiful, natural looking results. "Sisters" helping "Sisters". The gift that keeps on giving.
Sister Angie, thank you , thank you, thank you. I wish you and your family good health and happiness, always. You moved the world ...
To My Dear Friend DebbiReplyDelete
This is by far my most favorite blog you have written. Yes, of course I think what Angelina did was beyond wonderful! But it is you that is truly special. I watched you so gracefully steer through this incredible obstacle. You were brave, focused and strong. I am so honored to say that you are my dear friend. Although I have never met your doctors I can say that I love them for all of the wonderful things they have done for you, your hubby, your son and all of your family and friends. Any person who is fortunate enough to cross your path should consider themselves the lucky one. You are an inspiration. I love you. Friends forever Ilissa
I received so many beautiful emails from friends about this blog today. I wanted to share one with you from my dear friend Susan Bevan. I was not always vocal about my breast cancer journey, in fact, I was very private about it. Susan invited me to join the Breast Cancer Alliance Committee and asked if I would speak at a morning kick off breakfast in her home. That was 4 years ago. I felt a great curtain lift and it empowered me to speak and write publicly about my journey, hopefully helping others along the way. This past October, I was quite honored to have been one of the speakers at this year's BCA Fashion Show and Luncheon. Preparing my speech was an incredibly emotional experience. To have to deeply reflect and create an account of 17 years of survivorship, edit and recite it in front of 925 graciously attentive women, (many, many of them friends), was quite a moment. I was proud of my growth and humbled by the outpouring of love and kindness that came my way. This my lovely readers, is what is known as a silver lining...ReplyDelete
This is the note Susan emailed me this morning: I love you. I have a lump in my throat and tears in my eyes (making it hard to see this tiny phone keypad) and now my nose is running, too! You are so eloquent.
Thank YOU, for what you are doing to get out the information.
I am going to copy Yonni and Kathy Clark at BCA - I think YOUR information in your Blog should go onto our website.
Hugs, love & health - Susan
See what I mean???
Wonderful blog. Thanks for commenting on mine. 13 years ago! a nipple-sparing double mastectomy! You are a pioneer. My surgeons have been doing this for seven years and, in New York, many others with whom I consulted warned me against this. Surgeons trashing other surgeons. It's up to us to tell the truth.ReplyDelete
You are most welcome Shelley. Several people sent your blog to me. I'm so glad you are well! When I was completely alone on this, I was lucky to fall upon the amazing website FORCE, Facing our Risk Against Cancer Empowered. The sisterhood and shared information meant the world to me and still does. Girl power is a beautiful thing!ReplyDelete
All the best,