FORCE Blog

This blog will cover topics of interest that affect our community. Unless otherwise stated, the blog articles will be written by Sue Friedman, Executive Director of FORCE.

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My BRCA2 Story: Mastectomy Without Reconstruction

January 22, 2019

by Marla Ruhana

In the XRAYS review, Juliet’s story: No reconstruction is a post-mastectomy option, Juliet’s experience resonated with me. My mastectomy journey began in August of 2003, when my sister called and said, “Well, I’m one of the seven percent of women who get breast cancer under the age of 40.” She said that she was diagnosed with triple-negative breast cancer. Fortunately, she made it through a lumpectomy, chemotherapy and radiation free from complications. She is now a 15-year survivor!

In August of 2013, I tested positive for the BRCA2 gene mutation. Soon after, I found FORCE. My husband and I met with a genetic counselor and an oncologist. They recommended heightened surveillance or a double mastectomy and an oophorectomy.

I had years to contemplate options. I knew I did not want breast reconstruction. My husband did not care about breasts. He just wanted me to be alive. Facing two major surgeries, we made the decision to do the least invasive surgeries and get on with our lives.

I recalled my sister’s determination and called breast surgeons. The receptionists asked if I had a plastic surgeon. When I explained I was not having reconstruction, I heard, “Oh, honey, you’re too young to be without breasts” or “What about your husband?” I was facing two major surgeries; I was not concerned with cosmetics!

Finally, I found a breast surgeon who’s receptionist never asked about a plastic surgeon. I told the doctor I would not be having reconstruction. She respected my decision. I felt tremendous relief and scheduled a double mastectomy for December 10, 2013. When I shared the news with relatives and friends, I was stunned by their reactions. “You don’t have cancer!” “Do you have cancer and you’re not telling me?” “You know what you’re doing is really barbaric?” “It is so selfish what you’re doing; what about your husband?” and “I think you’re nuts.” I even had physicians who asked, ”Who told you to have that test?” “Who put you up to this, Angelina Jolie?” I knew I had to preserve my energy for my surgeries. The ability to have these lifesaving surgeries was a blessing—my mother gave me a bracelet engraved with “blessing.”

I now host fundraising events and facilitate a support group on behalf of FORCE. Filmmaker Alan Blassberg featured our story in the documentary film Pink & Blue.

A few years ago, I received a message from a woman named Melissa, who had reason to believe she was my half-sister. She said her mother had died of breast cancer. She saw my television interview and the trailer for Pink & Blue.

Melissa unfortunately tested positive for BRCA2, and she is currently having heightened surveillance. Our family will support her throughout her BRCA2 journey! We might have inherited a bad gene, but nothing compares to inheriting a baby sister!

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14 Comments

  1. Patricia Walter says:

    I cannot find any story about women who have no choice for reconstruction, without serious surgery. I was diagnosed in the 1990’s, twice, and have had radiation on both breasts. Later, a mastectomy in 2007 with only major surgery could do reconstruction. I have tried your peer counseling and no one was even close to my situation.

  2. Shannon Hoelscher says:

    WOW! Reading your testimony is like reading my own … I was diagnosed at age 38 with breast cancer, underwent genetic testing because of a family history of both breast and ovarian cancer and, like 2 aunts and a cousin, tested positive for BRCA2. My breast surgeon questioned me several times about my decision to avoid future procedures, surgeries, and potential complications by going flat. I can’t help but think my experience and the trauma I endured at a plastic surgery consult which later met criteria for PTSD would have been different had my doctors been more supportive of the difficult decision I was forced to make. I also wonder if a female doctor would have acted differently. Thank you for sharing your story.

  3. Linda Burkholder says:

    Your story is not that unusual. I like to stress to others to make their own decisions. This is a very personal choice and you must feel comfortable with all your decisions. I am sorry people feel that they have a right to intrude upon your choices. I am glad you had the courage to do what was right for you.

  4. Linda Swengel says:

    When I discovered my BRCA1 mutation in 2009 I knew immediately that I would have risk-reducing surgeries ASAP. I was 58. Eight weeks after receiving my test results I had a double mastectomy (no reconstruction) and a complete davinci assisted laproscopic hysterectomy on the same day. It was my breast surgeon who mentioned the idea of going flat when she saw that none of the options for reconstruction were hitting home with me. Both surgeons coordinated their schedules which allowed me to have the surgeries together…one l-o-n-g day in the operating room, one recovery period and one insurance claim. All of my friends and family were 100% supportive of my decision and I have not looked back.

  5. Kimberly Jackson says:

    Hello Patricia, I think my journey may have some similarities to yours, I’d be happy to email you. Sincerely, Kim Jackson

  6. Lindsay Northrop says:

    Hi Patricia,
    I am a two time breast cancer survivor and recently had a revision to my reconstruction as I had damage to my original implant due to the radiation I received after my second diagnosis. I’m happy to chat with you more about my experiences.
    Lindsay

  7. Patricia Paulson says:

    When I did meet with a plastic surgeon after my early BC diagnosis he was taken aback, but also very proud of my husband for being the one to mention no reconstruction at all. I was diagnosed 22 days after my 35th birthday… I have two young children, and am fairly active. I personally was prepared and ready for the mastectomy, but knew in my gut that I wanted reconstruction.

    My husband however, wanted to know what would happen or be the options if I chose NOT to do reconstruction. My surgeon said that in all his years, he had never had a HUSBAND ask that question. He looked at me and told me how lucky I was to have such a supportive and understanding husband.

    My mother had a reconstruction reversal when I was young, and I know that there is always that option. I respect your decision to not have a reconstruction and your decision to have the preventative mastectomy was a brave choice, and one I was prepared to do in the coming years – I unfortunately had my choice taken away from me.

  8. Misty B says:

    Your story sounds very similar to mine. Family history led to testing, positive for BRCA 2 mutation, chose to be preventive. A whirlwind of discovery, decisions, and surgeries at 40. I too experienced the hurtful and insulting comments made in response to my decision. Whether we choose recon, no recon, various types of recon, its a very personal decision and one that is ours to make. I chose reconstruction, and was made to feel that I was selfish because of my choice. Come on, they’re just boobs! Why would you take time away from your kids to do reonstruction? Ohhh you want a boob job, dont you!? Aren’t you a little old to be worried about boobs?? So many rude comments that stung deeply. We must remember this is OUR journey and no one else’s. Good for you for advocating for yourself and doing what was right for you!

  9. Valerie says:

    Back in 2013, my mom had gene testing and discovered that she had the BRCA2 gene. This meant that all 6 of us children needed to be tested. 4, out of the 6, tested positive, myself being one of them. I immediately had a complete hysterectomy in 2014, but decided to wait a few years to decide what to do about further surgeries. It was my younger sister’s diagnosis of breast cancer this past August that spurred me on and at the end of May, first of June, I will be having a double mastectomy with reconstruction. I’m new to all of this, overwhelmed at the thought of the recovery process, but am seeing this as a choice of being proactive rather than having to be reactionary.

  10. Valarie, I have an amazing similar story.
    My mom was diagnosed in 1970 and passed in 1972. She was 44. I was 17 and the oldest of 5 kids. My brother passed in 1994 of non Hodgkin lymphoma, he was 38. Then my sister had a cancer diagnosis and that prompted genetic testing. With assuming my brother had the BRCA2. 4 of the 5 siblings had it. I then had my ovaries and tubes removed. After my sister passed it was 6 weeks later and I was on the operating table for a double mastectomy with immediate reconstruction. Long and behold I had a LCIS diagnosis in 1 breast Sooo glad I did the surgery.
    Your never alone with any situation. Wish u all the best in life

  11. Ginette Bilina says:

    Hello 🙂
    My mother and grandmother both passed away from
    Ovarian Cancer(mom was 63 grand mom was 75)
    I had been asking for genetic testing ever since she passed
    My doctor advised waiting until I was 40. I did. I was a surrogate at the time of testing and 5 months pregnant. It was found I was BRCA2 positive
    I decided for the ovaries and tubes to be removed 3 months post partum.
    I then had multiple consults for prophylactic mastectomy. I decided on immediate reconstruction. I just had surgery on June 5 2019. Nipple sparing skin sparing with implants. What a strange change in road of life. I do.not regret any of my decisions . I feel like I dodged a bullet. I also am 1 of six siblings who have not got tested. Everyone makes their own decisions. Focus on your own and your family. Small milestones are what makes recovery awesome, like pulling on a normal sweater over your head. Tada! I love life and my family – my breasts are going to be weird – but that’s ok- I’d rather deal with this than deal with having to make the decisions I did when and if I had gotten breast cancer- whole new ball game. The times your lip trembled and you had to gut breath to hold your tears in just to appear like ‘ I got this’ would be so much more difficult.

  12. Kamila says:

    Hello,
    My dad was diagnosed with the breast cancer last year so I did my genetic test. Just 3 weeks ago I have got my DNA test back and unfortunately I’m BRCA2 positive. I haven’t seen my consultant yet but I read some of my possible options and I feel so overwhelmed and scared. It’s very encouraging to read your experiences and knowing that someone was on this journey before. I don’t know what is the best for me and I’m frightened of this big unknown future. Thank you for sharing. Take care! X

  13. Donna says:

    I’m in the same boat…. I’m one of 5, my youngest sister was diagnosed with breast cancer last year.
    Informally she chose to ignore it and it is stage 4. Since then she tested positive for BRCA2.
    My other siblings chose not to be tested. But I did. I’m positive too. Darn! So I’ve done the Mamo, ultrasounds, MRI, blood work, met with a surgeon, have 2 more Dr appointments on my schedule and weighing all my options. I knew for sure I never want to do chemo. I’ve seen it up close and it just terrifies me. So I’m doing a ton of research… Which is how I found this site. Reading all the posts gives me a lot to think about and consider. I just know that ignoring it for me is not an option. At this point I’m thinking just do the mastectomy and hysterectomy and get it over with. But am I being extreme if I do that? My Dr said to take time to think about it. But I can’t think of anything else. Donna

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