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Getting Past the Shock of a Previvor Diagnosis and Making a Plan

September 21, 2022

Getting Past the Shock of a Previvor Diagnosis and Making a Plan

by Nina Swirsky

In August 2021, a year and a half into the COVID pandemic, I met a new gynecologist for a routine annual exam.

When I arrived for the appointment, I started to fill out the paperwork for a new patient. Age: 47. Sex: Female. Occupation: Busy executive and mom. Then the form asked for a detailed family history. For me, this included the typical assortment of grandparents with heart disease, diabetes and cancer late in life. There was no breast or ovarian cancer of note. My maternal grandmother had a breast lump in her 90s, but that’s hardly unusual. However, my father died at age 60 of an aggressive cancer of unknown origin. It was everywhere in his body by the time he was diagnosed. He died 10 days later.

Then the form asked about race/ethnicity. White? Check. Hispanic? Nope. Ashkenazi Jewish? Now, that was interesting. You don’t typically see that on new patient questionnaires. My heritage is Ashkenazi on both sides, so I checked the box. As I learned a short time later,  Ashkenazi Jews have an unusually high rate of hereditary cancer mutations, specifically BRCA. Thus, the unusual presence of that question.

Reviewing my responses, the doctor said, “With your history and background, I recommend we do a genetic test. Insurance will cover it.”

I had not been tested for a genetic mutation. Since my father’s death, it had always been in the back of my mind that his cancer might have had a hereditary element. I’d certainly hoped that it didn’t, with a heavy enough dose of denial that I never sought clarity on the issue. I had been good about getting recommended cancer screenings; what more could I do about it?

During the three weeks it took to get the test results, I feared the worst. I thought I’d have to worry more about cancer and probably have more screenings than the average person. I was so wrong.

“The test came back positive for a BRCA2 mutation,” my doctor told me during our subsequent Zoom appointment. “This means you have a very high risk of developing breast and ovarian cancer. There is also an elevated risk for pancreatic cancer and melanoma. The recommendation is to remove the breasts, ovaries and fallopian tubes. Given your age, you should do this right away.”

I thought: I must have heard that wrong. Surgical removal of my breasts and ovaries? That’s so dramatic! There was no breast or ovarian cancer in my family. Then I thought: I’m going to be disfigured and then die young! When am I going to do this? I barely have time to pee some days, let alone have major surgery.

The doctor explained that I could opt for more breast screenings but without a reliable early test for ovarian cancer, my ovaries would have to go. This meant early and instant menopause.

I look young for my age. I’m engaged to be married. I wear skimpy bikinis on vacation. The next thing out of my mouth was, “Am I going to get old?”

Looking back, I was lucky to have a doctor who was familiar with BRCA risk mitigation. She patiently walked me through screening recommendations, surgery options and hormone replacement. Then she referred me to a breast oncology surgeon and a gynecological oncology surgeon.

Thus started my educational journey. I saw those two doctors, then a few more (including my family doctor), a plastic surgeon, a medical oncologist, a BRCA specialist at Johns Hopkins and a genetic counselor. Initially, I thought that one doctor or other would tell me that the whole thing was overblown and that I wouldn’t need to take drastic steps to remove healthy organs. Alas, even second, third and fourth opinions offered no reprieve from the initial recommendations.

I retook the genetic test at my own expense, hoping that I’d get a different result. No luck.

My attempts to escape from reality having failed, I switched gears to start developing a plan. I made myself a to-do list of the following:

Get educated on the basics

I’m a problem solver who likes to overprepare. I don’t expect everyone with hereditary cancer risk to spend hours on PubMed or seek out a fourth opinion from a panel of hand-picked expert doctors (although if you have the time, money and inclination, feel free to do so). FORCE resources, including the website, message boards, and conference were incredibly helpful. Each bit of knowledge I gained helped me feel more empowered. More importantly, it helped me walk into doctor appointments with knowledge and a robust set of questions.

Document any history of cancer in your family

You’ll want to have this information handy for discussions with doctors, genetic counselors and possibly your health insurance company. In consultation with your medical team, your family history can inform your decisions about whether to have surgery and what timing makes sense in light of the specific risk at your age. I also called my few surviving relatives to pick their brains.

Take advantage of free help

It’s worth checking helpful and supportive sources that are free and can save you time and stress. I took advantage of three free sources. First, the company that did my genetic test offered a free discussion with a genetic counselor. Second, my employer’s Employee Assistance Program offered help with navigating the health system, including helping me find in-network specialists. They also offered free counseling sessions to help with stress. Third, my insurance company (a BlueCross PPO) provided extraordinary support. They assigned a nurse coordinator who helped manage information between my doctors, facilitated getting pre-surgery approvals and was available for calls anytime I had a question. She even called regularly to check on me. My insurance company also offered a program for people with complex medical cases that provided a detailed report from a panel of specialists with recommendations based on my specific situation.

Build your medical team

Check out the FORCE list of medical professionals you might need. Ask doctors you trust for referrals to specialists. FORCE’s message board is another great resource for recommendations.

However you find your doctors, don’t hesitate to ask about their experience with hereditary cancer and/or the types of surgeries and screenings you are considering. A doctor who is knowledgeable about the latest research is more likely to provide good recommendations on tricky issues such as uterine cancer risk and hormone replacement. One additional note about selecting a plastic surgeon: Their experience is far more important than having slick marketing. I chose a breast oncologist who regularly does mastectomy and a plastic surgeon who specializes in breast reconstruction (rather than purely cosmetic procedures). My results are amazing. It’s also important to choose a plastic surgeon who is experienced with the procedure you choose.

Catch up on screenings

I ended up having lots of screenings following genetic testing including MRIs and mammograms, ovarian ultrasound, a skin check by a dermatologist, a colonoscopy and blood work. I’d prioritize these based on the risks associated with your mutation or how behind you are on getting them done.

Get emotional support

I took advantage of the FORCE Peer Navigator Program, participated in support group discussions and asked questions on the message boards. FORCE also has a Private Facebook Group. I also took comfort from YouTube videos posted by previvors and survivors who shared their experiences.

Make a list of questions

I found it helpful to write a list of questions I needed to answer to formulate a plan. Your list may differ if you’re a different age, plan to have children, are male or have a different mutation, but here are my top questions:

  • What is my risk for each type of cancer, taking into account my mutation, age and family history and how will it change over time?

  • What screenings do I need immediately?

  • How quickly should my fallopian tubes and ovaries be removed (salpingo-oophorectomy) based on the risk at my age? What are my surgical options and what recovery time should I expect?

  • Do I need a hysterectomy (surgical removal of the uterus) as well as a salpingo-oophorectomy? What are the risks if I remove my uterus or keep it? (Known risks differ depending on your mutation. Get another opinion if your doctor doesn’t know the differences.)

  • What are my options for dealing with surgical menopause? What are my hormone replacement options, if any? What are my non-hormonal options? How should I balance any risks against quality-of-life issues?

  • Will I have a double mastectomy or accelerated screening? If opting for surgery, how soon will I do it? Am I a candidate for nipple-sparing mastectomy? Do I want to preserve my nipples?

  • What are my breast reconstruction options? Should I choose breast implants or my own tissue? What are the risks and benefits associated with each option?  

  • If I have multiple surgeries, which should I have first considering risk and ease of recovery? How much time will I need to recover between surgeries?

  • How should I prepare for surgeries and recovery?

  • What screenings should I have to monitor my risks going forward?

Lists of questions are also available on the FORCE website, such as the one focused on Considering Mastectomy.

Develop your plan and move forward

In some ways, the period between getting my test results and creating a plan was the most stressful. I deeply feared making the wrong decision. But I felt confident once I had worked through my list.

I’ve lost breasts, ovaries and muscle tone since learning of my BRCA2 status. I’ve gained implants, estrogen gel and a new perspective on life. I made informed choices that made sense for me, and I feel good about them.

You may have different options and make different decisions based on your body, life, family history, priorities, resources, etc. When it comes to hereditary cancer risk, one answer isn’t right for everyone, but there are resources we can all benefit from and common questions we need to answer for ourselves. The road from diagnosis to plan to risk mitigation isn’t easy but you don’t have to walk it alone.

Nina Swirsky is a BRCA2 mutation carrier and previvor from Maryland.

Posted in: Stories , Previvor
Tags: BRCA2 , Previvor , Medical Decisions

1 Comments

October 5, 2022

Teresa Finken says:
Nina, I"m sorry you've had to make such difficult choices. It's helpful of you to write about them so clearly. All the pre-treatment and during-treatment work you note is quite similar to my own efforts regarding Ovarian Cancer, found at Stage 3C. After 3 chemos (fabulous, as they predicted 6-12 chemos prior to surgery), surgery, 3 more chemos, my numbers are 'normal' except for blood elements (remaining low still). Also from Maryland, also with BRCA2, my experience with withered muscles and skin sounds like yours. What I did was ask for a referral to a physical therapist. Insurance has been very helpful in that regard as well. I find it EMPOWERING to work on regaining strength head to toe, and reassuring to do it with a knowledgeable therapist, so I know I am not hurting myself (as I might if going it alone). As my body heals (12" vertical abdominal scar) it helps me to be DOING something on my own behalf. Perhaps this note will extend your own note for others' interests as well.

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