The FORCE Blog
Our blog features information and personal perspectives on topics of interest to the hereditary cancer community.

Stay up to date on research and information

Sign Up for FORCE Newsletters
Education > Our Blog > Why I Chose Preventive Mastectomy

Your information is used for the sole purpose of sending information about hereditary cancer and updates on FORCE programs and campaigns. To stop receiving these updates, click unsubscribe at the bottom of any email. If you need additional support, or have any questions, please contact [email protected].

Why I Chose Preventive Mastectomy

October 03, 2022

Why I Chose Preventive Mastectomy

by Nina Swirsky

For women with hereditary cancer risk, few decisions are more challenging and personal than whether to have a preventive mastectomy. We can and should review the research on the risk and recommended options relevant to our medical and family history, genetic mutation and age. For some women, this may lead to a very clear conclusion. But for many others, choices to screen or remove the breasts are rational decisions with a sound scientific basis. Factors such as risk tolerance, family support, work or financial pressures, the role of breasts in feminine identity and the relative fear of pain and death are what ultimately drive a woman’s decision.

I’m not a medical professional, and what I say should not be taken as medical advice—that should come from your own doctors. I made choices that made sense for me. I was 47 when I learned of my BRCA2 gene mutation. I have good health insurance and a job that is high pressure but doesn’t require physical exertion. I have a busy partner and teenagers to take care of, and an aging, widowed mother. I had little relevant family history to inform my decision. You may have different options and make different decisions based on your body, your life, your family history, priorities, resources, etc. When it comes to hereditary breast cancer risk, there isn’t one right answer for everyone.

The first four doctors I saw recommended mastectomy. These included my gynecologist, a breast oncologist who showed me a chart representing the steep curve of my increasing cancer risk after age 47 and a plastic surgeon who described cases of patients with BRCA mutations who chose screening over mastectomy who were ultimately diagnosed with stage II cancer. During a consultation, a medical oncologist gestured toward the waiting room saying, “You don’t want to join that club.” I also had opinions from experts at Johns Hopkins and a team assembled by my insurance company to review complex cases. These validated the recommendation for surgery but also presented screening as a reasonable option.

Ultimately, my decision came down to personal factors:

My father’s genes

Two weeks after my father had a routine medical check-up that found nothing alarming, at age 60 he was diagnosed with stage IV cancer throughout his body. The oncologist couldn’t determine the origin—maybe the skin (melanoma) or the prostate—and said it was the most aggressive cancer he’d ever seen. Dad was dead days later. He never got to enjoy his retirement or see his grandkids grow. He was my best friend, and I feel his loss every day.

While Dad’s cancer experience didn’t provide much information about my breast or ovarian cancer risk or at what age my risks might reach a tipping point, it was an important driver of my mastectomy decision for one reason: He didn’t get a chance to fight his cancer.

Intellectually, I understand that with regular screenings, the likelihood of spotting breast cancer early enough to treat it successfully is very high. I recall reading studies that preventive mastectomy does not necessarily increase life expectancy. And I understand that Dad’s situation was different than mine in many ways. But I wanted to avoid developing cancer if I could.

My mother’s genes

I didn’t inherit my BRCA mutation from my mother, but I did inherit her tendency to be neurotic and catastrophize. This personality trait made the pattern of repeatedly getting screened and fearing the worst a particularly miserable experience. Also, my tendency to assume the worst led me to minimize the possibility that I wouldn’t get cancer. So my decision came down to either having the mastectomy now or having it later, potentially with the additional misery of chemo or radiation. Since mastectomy is bad enough without other cancer treatment, I opted for the lesser evil.

My partner

I’m engaged to the love of my life. This will be the second marriage for both of us. We look forward to decades of enjoying our lives together, and I don’t want our precious time to be clouded by a battle with cancer. I thought it would be preferable to have surgery on my own timetable, in hopes of avoiding a longer and harder battle later. Also, (I know this isn’t very modern) I want to be healthy so I can be the type of supportive partner I want to be.

The visual result

I researched breast reconstruction options, spoke to a plastic surgeon and listened to breast cancer survivors. I concluded that I’d be likely to have more control over my reconstruction with a proactive mastectomy and wished to try and avoid a mastectomy and cancer treatment in the future.

Mammograms and dense breasts

I hated having mammograms. My small and extremely dense breasts did not make for an easy mammogram experience. My screenings were consistently followed by letters saying that mammography would be less likely to detect early-stage cancer. This combination of factors made the screening route less appealing and inspired less confidence.

Nina Swirsky is a marketing executive and writer based in Maryland.

Posted in: Stories , Previvor
Tags: Prophylactic Mastectomy , BRCA2 , Previvor , Decision Making


January 7, 2023

nightingale says:
Nina, Thank you for sharing! My whole life was recently upended by the DNA test that came back positive for BRCA2 in December 2022. I am about to turn 52, and am at the beginning of a new journey, still focused on my overall healthy, happiness, and active lifestyle, but wanting to be proactive and not always looking over my shoulder for a cancer diagnosis. I am getting things set up for prophylactic mastectomy. Hearing from other women like you who are also facing this unique struggle encourages me! May God richly bless you!


January 4, 2023

Barbara says:
When I was 52 I had double mastectomies to prevent breast cancer. It was 2001 and I did not know about gene testing but only that I had a strong family history having lost 5 members of my family to breast cancer including my only sister and in 2000 my only daughter. I knew I had to stay alive to raise my daughters 3 young children. I have never regretted that decision. a few years after my surgery my niece, my sister's daughter got breast cancer and was tested and did carry the gene. At that time I was tested and I also carried the gene, my granddaughters were tested 1 has the gene and the other 2 do not. Knowledge is power so now my granddaughter can move forward to protect herself. On January 2, 2023 I turned 76 and I feel my story would of ended very differently had I not followed my gut instinct and had the surgery.


January 7, 2023

Nightingale says:
Thank you so much for sharing your journey! I just found out I carry BRCA2 about a month ago. Trying to decide what's next, but starting to get my "ducks in a row" for the double mastectomy, since that is no easy task and take a lot of time between research, finding drs in-network, getting consultations scheduled...I can always back out later if I need to.


December 26, 2022

Kate Nichols says:
Thank you. I am also like you and I am driving myself nuts. I have two CHEK2 mutations. I had cancer at 49 and again at 68, as well as a family history. I had lumpectomies when the cancers were detected, but now considering a double mastectomy. Locally, they only perform implant reconstruction, but I worry about the implants leaking, and will cancers be mixed due to microcalcifications around the implants. Or do I go flat. I am in a new relationship, will I ever feel like a woman again? Scared and feeling so alone.


January 7, 2023

nightingale says:
Kate, I so appreciate your honesty and vulnerability. My hope is that you can find support and love, both here in this group, and in your life practically, with family and friends. It is normal to feel scared and alone when faced with all you have been through. I have my own concerns, being BRCA2 positive, but I do not have a cancer diagnosis. Life is completely interrupted now, but I rely on my faith to help me make the hard decisions ahead. Try to think about good things, even small things, each day that bring you joy. Phillipians 4:8


November 2, 2022

Pamela says:
Nina, I feel like I wrote this post myself. I could not have said it better! I am just like you, all the way down to the neurotic and catastrophizing family. :) I am also considering prophylactic mastectomy and agree, better now than after a diagnosis. I have CHEK2 and had a lumpectomy for LCIS five years ago. I'm 55 now and I have great insurance. I want to retire in five years and afterward, don't know what my insurance situation will be. I'm currently screening every six months mammo/MRI and you're right, it sucks! A really big part of me says I can totally live without the boobs if it means freedom and greater peace of mind. Wishing you all the best and thank you for sharing!


Leave a Reply