I’m 27 and about to have a double mastectomy


stark_honeymoonIt took a few tablespoons of my blood, a six-week wait to determine the results, but only an instant to change my world.

“I’m afraid I have bad news,” my oncologist said.

Even though I’m a healthy 27-year-old woman right now, I’m going to have both my breasts removed as a preventative measure because I’m a member of a very exclusive club: Like one out of 1,000 women, I have a genetic mutation that dramatically ups my chance of cancer. My gene — called the BRCA1 gene — gives me a 40 percent to 85 percent lifetime risk of developing breast cancer, and a risk of ovarian cancer that is 30 percent to 70 percent higher than women who do not have this gene, according to the Mayo Clinic.

Read the rest of my article at the Today Show website. Questions or comments about the article? Feel free to post below.

This entry was posted on Monday, October 19th, 2009 at 8:26 pm.
Categories: Blog, Clips, Features.

18 Comments, Comment or Ping

  1. Christine

    Such a powerful article – I think you give voice to the difficult decision that more and more women are having to make. I’m glad you are able to come to a decision that you are happy with. And while it is sad that you won’t have the opportunity to breastfeed, I have no doubt that some day you will still raise a happy and healthy baby. I think I mentioned this article when we talked but in case not, check it out.

    http://www.theatlantic.com/doc/200904/case-against-breastfeeding

  2. Charley

    There is a new medical model coming this century based on evidence that oxidative stress causes non-infectious disease and aging (the Free Radical Theory of Aging). This work is underway in many universities and institutes. My doc is at Stanford (Greg Enns) where I am being treated for my mitochondrial Dz which permits early onset of rampant oxidative stress. Someone like Greg Enns might have an opinion on Dz course given this recent breakthru (announced Feb.9th by the Nat’l Acad.of Sciences keyword Glutathione). The key is this: clinical intervention is likely in 5 years or less, so you might want to rule out intervention to block oxidative stress as a Tx to block your genetic inheritance–exactly what my doc hopes to do for me. Good luck. Charley

  3. Emily

    I just read your article on MSN and wanted to say thank you for chronicalling such an amazing experience and documenting your strong choice. You are a wise woman to see that your child(ren) will ultimately benefit from a healthier, less-stressed mother–rather than a breastfeeding mother who lives in fear of an impending diagnosis. Good luck with the road ahead–it sounds like you are well-equipped for its challenges. Best wishes, Emily.

  4. Heather Scholten

    Hi Lizzie,

    Reading your story was liking looking in a mirror! I came across the story on the Today Show site and by the end, my eyes were welled with tears and I knew I had to find a way to reach you! You see, you and I are very much alike. I too have the gene mutation (or scarlet letter as I jokingly call it) as well as my grandmother, mother and sister. My Grandmother is a 35 year survivor with 2 bouts of BC, my Mom battled it 3 times over 12 years with radiation, chemo and radical bilateral mastectomy and ultimately lost her life to it in Feb of 2007. My sister had early stage BC 2 years ago and has had ovarian cancer as well. And then me….I was like you, completely healthy and cancer free when I made the biggest decision of my life….to remove my breasts & have a complete hysterectomy. That was over 3 years ago and although they aren’t as perfect as they once were, they are not the enemy anymore! No one would ever guess that they aren’t “real” and most shake their heads in disbelief when I tell them what they really are – repurposed stomach tissue. I think the choice you’re making is a smart one! But I will tell you that you will need to fight for yourself with respect to getting continued screening. After my surgery was complete and all doctor checkups were done I was turned loose on the world and told that I could no longer have mammograms because the tissue isn’t breast tissue any longer and it would create false-positives. I should just do self-exam and if anything “feels funny” then give us a call. Hmm, NO WAY! Not with my family history! So I fought for my right to continue to get my twice yearly checkups! The Doctors pushed back, but ultimately I won. Please make sure that you know in advance what your Doctor has planned for you AFTER it’s all done. Just because you lop them off doesn’t mean the risk is still not there waiting in the wings. It lowers the risk only. I wish you much luck on your journey!! It’s a tough road, but well worth it in the end to remove the “sitting duck” feeling! Good luck to you Lizzie!! ~ Heather

  5. Jan Lewis

    Lizzie, my daughter-in-law was diagnosed with breast cancer at the age of 25, 3 months pregnant with her 2nd child. She, sadly, put off having the lump in her breast biopsied early on and by the time she did, the cancer had spread to her lymph nodes. Her 3-1/2 year battle was courageous, terrifying, and gut-wrenching. She had a masectomy, and then chemo from her 4th month of pregnancy through her 8th. Her son was taken by c-section and then she continued this treatment, including radiation for months after he was born. Miraculously, he was ok. He has some speech issues, but is otherwise a remarkably beautiful and bright little boy. The drs told her she was in remission after all of these treatments, but, sadly again, this was not the case. 18 short months later or less, she found the cancer had spread to her sternum and then it went like a house afire. She even went to the clinics in Mexico and changed to a completely organic, mainly vegeterian diet. She had one good year, and then succumbed in March of ’08 at the age of 29. I commend your courage and tenacity to do what you must. We all wish Tanya would have had a biopsy much much sooner. Her death was a blow to all of us who loved her. I know the sadness that comes with the physical changes that occur from breast removal, but to save a life from this horrid disease would certainly be worthwhile. God bless you!

  6. Michael Bushnell

    I saw your story on MSNBC.com. Cancer is one of the toughest things you can face in your life. I am 28, and had melanoma when I was 25. You are smart to go ahead and get the breast removal done. If I knew then what I know now, I would’ve been getting semi-annual skin exams for the past 10 years. Getting the phone call from my doc telling me I had cancer was probably the worst day of my life. You would do well to avoid going through that experience. I hope everything goes well for you in the future.

  7. kala

    Dear Lizzie,
    After reading your story on msn i had to reach you and searched the web and got this web-site. I sincerely hope that you read these comments. May you be guided to the right treatment option. Have you explored other options like naturopathy, ayurveda and homeopathy. I saw a web-site about an ayurvedic treatment for people affected by 9/11 tragedy. Please check this web-site. http://www.stws.org/.
    Good luck

  8. Raquel

    I just read your story and agree completely with the Mayo Clinic. My sister had the same problem and when her doctor told her, I recommend double mastectomy because you have the genes that eventually will be passed to the other breast, she could not believe it, naturally, you do not know what to do but her doctor told her that she will have peace of mind, otherwise she is going to be thinking all the time when the cancer will appear on the other breast, also, you will not have radiation or chemotherapy. Everybody in the family agreed and she just celebrated her 18th year free of cancer. The only problem most women have is that 90% of them develop lymphodemia (sorry about the spelling). Because normally they remove the lymph nodes the woman will have to wear a sleeve and glove because of the inflammation of the arm. During the same time of my sister’s surgery, a co-worker had a lumpectomy (did not want to have mastectomy) and I explained to her about my sister’s surgery but, apparently, she did not want to believe me and two years later she developed back pain and the doctor was treating her for that problem, well, it was not her back it was that her cancer came back and she died two months later, I think she was 43 years old. Good luck to you and believe me your future looks good, enjoy life.. God bless you and your family.

  9. I HAD “PROPHYLACTIC MASTECTOMIES” IN 1993 FOLLOWED BY IMMEDIATE RECONSTRUCTION. I RECOMMEND THIS FOR ANYONE WHO DOES NOT HAVE TO WORRY ABOUT FURTHER TREATMENT. i WAS NEVER WITHOUT A BREAST AND THE RECOVERY WAS NOT NEARLY AS BAD AS I EXPECTED. MY RECONSTRUCTION WAS TRAM FLAP RECONSTRUCTION – THEY TUNNELED MY STOMACH MUSCLES UP TO THE CHEST AND CREATED 2 NEW BREASTS. GOOD LUCK AND DEFINITELY CONSIDER IMMEDIATE RECONSTRUCTION.

  10. suzanne

    Dear Lizzie,
    I read your article on msn and searched for a way to send you a message that you might read. Your story and the choice you feel you have to make to not have cancer, made me feel really sad because there are so many alternatives out there. Have you researched anything outside of western medicine’s solutions? I’m so glad I saw someone above also advise looking into Naturopathy, Ayurveda and Homeopathy. And it doesn’t stop there. There’s Traditional Chinese Medicine and Qi Gong. There’s energy work such as Medical Qi Gong and Reiki. In the book “The Healing Promise of Qi” by Roger Janke, there is a true story of a man who was diagnosed with inoperable, terminal, stage two Astrocytoma. This man moved to China and began doing a simple Qi Gong exercise every day. To cut the story short (I highly recommend reading it!), his tumor shrunk and he is cancer free to the shock of all his doctors in the US. I’m not trying to play down western medicine or start any controversies, I’m just hoping that maybe you will open yourself up to the chance that there may be some other solutions out there for you, ones that maybe aren’t given enough media/medical attention because they may not be fully understood yet, or maybe because they can’t be patented or as profitable to the institutions that be. Please give yourself a chance to explore more, learn more, approach your body and health in a more holistic way, and maybe you will find something or maybe you will simply gain more wisdom on a different way to approach your health, even if you do decide to have surgery. I wish you the best.
    Sincerely,
    Suzanne

    p.s. http://www.mercola.com has a lot of articles on breast cancer that challenge the way we think of it in western medicine. He also sheds light on the dangers of Mamography, and instead recommends Thermography as a safer way of testing!

  11. Marilyn McBride

    Dear Lizzie,
    I hope you listen to the good people here who are talking alternative methods in dealing with breast cancer. It would also be beneficial to go to http://www.brucelipton.com to find out what it is that prompts genes to do what they do. We have been taught that genes control us, that we are the victims of our genes. Nothing could be further from the truth, but it sells a powerful lot of drugs for big pharma.
    Dr. Lipton is a cellular biologist who clearly understands what mainstream medicine and big pharma don’t want you to know, that would be what you need to do to be well which starts with your thoughts, words and actions.
    After you study Dr. Lipton’s information pick up a copy of Heal Your Body by Louise L. Hay and dive into the kinds of patterns that would activate a breast cancer gene, and heal and reprogram those patterns. Then interventions become tools in the healing process rather than something that is done as an end all out of fear to try to ward off disease and death.
    Information is essential in this process, search it out.
    May God Guide Your Steps,
    Marilyn

  12. Melinda

    I had a radical double mastectomy in October 2008 – I was 31 years old. I chose to have the surgery because my mother died of BC at the age of 38 as have many aunts and my great grandmother and grandmother. I was not diagnosed with BC and hopefully never will be. I will have my overies removed after I have one more child. I have two little girls now and I feel my decision was the best one I could make for my family. I know I will not die of BC and hopefully live to see my children grow. I had full reconstruction done immediatley following the mastectomy. When I was able to look in the mirror two days after surg I looked no different than I had prior to the surgery. I had expanders put in and three months later after hitting my “target” size I had my perm implants put in – I chose silicone. I still have times I hurt and I do not have the strength in my arms as I once did, but 7 weeks after my 1st surgery I was back riding endurance and completed a 100 mile ride. I feel like a weight was lifted off my shoulders after my breasts were removed as I had gotten to a point in my life I did not want my husband to look at or feel my breast because I felt they were going to “fail” me somehow one day in life. I no longer have that feeling.

    Good luck.

  13. personally, if i were only 27 and haven’t had children as of yet, i would think this is a big mistake. breastfeeding was one of the best gifts i have given my children. of course, there’s formula and babies grow up healthy on it. however, the bond and intimacy created can never be replicated by formula. the milk your body produces is specific for that baby. why not give baby what it’s entitled to?

    BRCA1 gene also affects the ovaries. are you considering removing those too?

    but like i said this is what i’d do personally esp. if i were only 27. i cannot judge or try to understand. everybody has a right to their own decisions regarding their body and health and learn to live with any consequences thereof (if any).

    hope all goes well with you :)

    belinda

  14. Sarah

    I am 17. Today I go in for my genetic counseling. They will draw a blood sample there. My mother had the gene, and because they did not know until she had already had cancer once, she died this last fall, after 4 bouts with cancer. If the tests come back positive for BRCA1 (which both my grandmother and mother have and had), I will have a double masectomy asap. I am sad, but I could never put my dad through losing two of his girls. My younger sister (recently 16) will be getting the test soon as well. It’s a very sad ordeal, but it’s necessary to prevent death. You must remember that although you will have a double masectomy, you still have a (much lower) risk of getting breast cancer (through your lymph nodes) please never forget that you still need to be aware. I hope for all the best for you.

  15. Lizzie Stark

    Thanks Sarah. Good luck with your test — I will keep my fingers crossed for you. If you have the gene, make sure you give yourself some time to sit with this decision; you probably have a few years before you would need to have the mastectomy, unless cancer runs very very young in your family. Believe me, I understand being in a rush to have the procedure, but I also value the years in my early twenties when I was able to enjoy having regular old breasts. I will be keeping you in my thoughts.

  16. To the woman (Belinda) above who mentioned something about not being able to breastfeed: Sure, I’d love to bond with my baby and be able to breast feed; but I’d much rather be here to be a mother to my baby. And that is the choice I (and many women here) have been faced with. In my case, had I gone on to conceive prior to my prophlyactic mastectomy, I would have likely developed breast cancer during my pregnancy as my breast tissue was diagnosed with Atypical Ductal Hyperplasia. ADH, in a person with the BRCA1 gene mutation, will eventually result in Cancer as such a person does not have capability to fend this off. In short, the ability to breast feed would have been nullified anyway. I’m sure my babies will understand. And I’m sure I won’t love my babies any less than you love yours.

    I’m 29 and just went through a prophylactic double mastectomy, with immediate reconstruction, due to my BRCA 1 status. My great-grandmother, grandmother, and mother have each been stricken with cancer. Both my Great-Grandmother and Grandmother passed away from Breast Cancer (my grandmother was 29); and my mother was diagnosed with stage IIIc Ovarian Cancer at the age of 51 in 2006. She is still fighting, but it has been a long and arduous battle. I will say, though, that there have been some amazing blessings in such a battle, and I praise God for these.

    I’m so happy with my new breasts (no, they aren’t the exact same; but given the situation, they are pretty darn great!), and am so relieved to put this part behind me. The recovery was pretty brief (I was back to normal within 5-6 weeks). I will get my ovaries taken out, but want to give a good shot at getting pregnant before doing so.

    All in all, we are all so truly blessed to live in a time where we can make these decisions. I pray for strength and peace to all of you facing these same decisions. ?

  17. In 1982, at age 39, divorcing, had preventative double mastectomy. Silicone implants. Several family members died of breast cancer. My younger sister had cancer at 34 and died at 39. I never regreted my surgery. I am 68 and had implants replaced in 2007. If this bothers my dates, then they are not the guy for me. Positive thing………..when I am 80 my breasts will look like I am 30. Everything else will fall. We all need to make decisions that are right for us…. do what we have to do for ourselves to stay healthy. My family lives to be near 100. I take no meds. I weigh 126. I eat healthy. I feel young and no one believes my age. I have no facial wrinkles. My kids are proud of me. I plan to live to be 100.

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