The ‘Silent’ Disease Lurked in My Genes—So I Made 2 Life-Changing Decisions

“Here we are again. The Sidell women go through everything together,” said my older sister as she looked tiny sitting in the oversized hospital chair about to have her first chemo treatment for breast cancer.

My mom held her hand, remembering her own chemo treatments for ovarian cancer 22 years before that, while I looked at them both in a daze, knowing I was headed to surgery two days later to remove my ovaries, fallopian tubes, uterus, and cervix in order to try to avoid this fate.

When I was 13, my mom was diagnosed with Stage 3C ovarian cancer. No one thought she would survive. She did; however, her sister Ruth died a few years later from the same illness.

As a kid during that time, I remember watching my mom and wondering if I would also develop the “silent” disease.

Ovarian cancer has no reliable screening methods and, therefore, is usually diagnosed in its late stages when it’s treatable but not curable.

Only about 25 percent of women diagnosed with Stage 3 ovarian cancer will survive more than five years. The percentage decreases to 17 percent if diagnosed at Stage 4.

My feelings were confusing, and I ultimately packed them away, vowing not to think about my possible future with this disease.

Many years later, I heard rumblings about a genetic test that could alert you to whether or not you carried the genetic mutation that could lead to breast and ovarian cancers.

This sounded great to me. I am the kind of person who likes to know things. I drive my friends and family crazy asking questions about anything and everything. I have an “I axolotl questions” sticker on my computer.

However, there would be a scary corollary to getting tested. If I tested positive for the BRCA gene mutation, not only would my insurance drop me, but I would never be able to get coverage for health insurance.

Again, I packed away my feelings of fear and went on with my life.

I got married at 30, and I sat in bed awake at night next to my husband, wondering if I were—at that exact moment—developing ovarian cancer without my knowledge. I wondered if I were going to relive my mom’s or my aunt’s journeys.

Four years later, at a routine gynecological visit, my government OB/GYN told me that rules about insurance had changed and that if I wanted to undergo genetic testing, my insurance company could not drop me.

Not only that, but it would also cover any preventative screenings or surgeries if I tested positive for the BRCA mutation. I was in disbelief. I asked a million questions to be sure that what she was saying was true.

This is what I’d been wanting, but also what I had been fearing.

I decided to go ahead with the testing. Even though I assumed I must carry the BRCA mutation due to my family history, a small part of me hoped that I would be an anomaly. Then, I could let go of the worry I’d carried since I was that 13-year-old child.

I gave my blood. I waited for the phone call.

When it came, I knew that I was ready. I thought that I was ready.

I wasn’t ready.

I acted calm and unsurprised when the OB/GYN told me that I had tested positive for the BRCA1 gene mutation.

My husband was listening on speaker phone as I brushed it off with my words, telling my doctor that I wasn’t upset because I assumed that this would be the case.

She said she was sorry to have to deliver the news, and to my surprise, my eyes unexpectedly welled up with tears at the same time as I over-thanked her nonchalantly and insisted to her that I was okay.

I was scared, and I wouldn’t admit it. Thanks a lot, DNA.

What followed were what felt like an underwater vortex of meetings with a gynecological oncologist, breast surgeons, and probably more doctors.

I honestly cannot even remember how many doctors I saw or what I was told, but what stuck with me the most was this: Most women with the BRCA1 mutation do not need to worry about removing their ovaries (an oophorectomy) or fallopian tubes until they ‘re 40 and that there are preventative screening methods for breast cancer for those who carry the mutation so that it can be caught early.

I came to a decision. I would start preventative screenings for breast cancer, and I would wait until I was closer to 40 to truly consider an oophorectomy.

Surprise. Two years later, I was sitting in my car when I got a call from my sister. She had found a large lump in her left breast and her doctor was so concerned that my sister had undergone a biopsy that day.

The following week, she went in to get the results and was told that she had Stage 2 breast cancer and would begin chemotherapy in the next few weeks. If there could be a literal needle scratch moment in life, this would have been it.

It was at that moment that my decision solidified. If my sister could be diagnosed at 38 with one of the cancers that my BRCA1 gene mutation can lead to, I needed to do what I could to protect myself now.

I asked my doctors which surgery—the oophorectomy/hysterectomy or the preventative double mastectomy—would put me out of commission for the shortest amount of time so that I could help my sister through chemotherapy right now, and I scheduled the surgery.

Three days away from my oophorectomy/hysterectomy, I sat with my mom and my sister at my sister’s first chemo treatment. I saw the fear in her eyes, and I saw the toll the medications took on her body even after just that first round.

I felt nervous about my surgery, but I also felt like I was making a very important decision to protect my future self. I also, however, began to feel pangs of guilt.

Why did I get to (hopefully) avoid a cancer diagnosis while my mom and my sister had to endure them and all of the hardships that come along with them? Why did I get to save myself?

As I struggled with my feelings of guilt, I prepared for my first surgery. Sitting on our floor throwing a toy back and forth for our dog, my husband and I discussed the idea that I would not be able to have biological children.

We discussed the fact that maybe we weren’t sure we wanted to have children. We discussed the fact that if we’d wanted to have children, we’d already been married for six years and would have had them by then.

We apologize. We said we’d always preferred adoption anyway. We discussed my endometriosis diagnosis and the fact that might have made me infertile anyway. We even discussed pausing my surgery so that I could go through the rigorous egg-freezing process that we couldn’t even afford.

Ultimately, I chose myself over any possible future children.

I think I repressed the thought of any future regrets when I made that decision. As I was in pre-op for my surgery, I was all smiles and just wanted to be put under the anesthesia so everything could be done.

I woke up from the surgery with a feeling I had not anticipated: Relief.

After spending so much of my life worrying about dying from ovarian cancer, I could let that part of myself go. Not only that, but I had made the decision for myself. I don’t think I have ever felt so sure about a decision in my life.

This does not mean that I never regret my decision. When I see pictures of my friends pregnant or those beautiful pictures of them holding their babies on their bare chests immediately after giving birth, it hurts.

The idea that I will never know what it feels like to be pregnant or giving birth is a big regret for me. I have shed many tears thinking about something I will never have. But what I do have is a life with much less fear and anxiety. And a life that feels like I took control of my own future to give myself a healthier one.

But I wasn’t done yet.

I continued watching my sister undergoing chemotherapy treatments. I tried to remind myself that screenings for breast cancer were relatively easy and usually caught it early.

Some days, my sister was so weak from her chemo that she couldn’t walk out of the hospital by herself. After one round, she was taken to the hospital in need of a possible blood transfusion.

No one should have to go through chemotherapy. I am glad that it exists as a treatment, but it is brutal. Again, I had a decision to make.

Did I want to wait for a mammogram to find cancer that was already growing, or did I want to remove my breasts to avoid ever having to undergo this treatment? I made my decision.

In one way, the oophorectomy surgery was not as difficult to deal with psychologically as the preventative double mastectomy was: I couldn’t see any physical changes to my body with that first surgery.

The double mastectomy, however, would disfigure me. I would see it every day when I looked in the mirror. I would feel it.

There were silly things I thought about like the fact that I could never wear an underwire bra again—I loved underwire push-up bras. There were more intimate things I thought about like the fact that I would no longer have any sensation in my breasts or nipples, causing a significant change to my sex life.

With the same pangs of guilt I felt before my last surgery—that I was somehow avoiding a fate that my sister was forced to endure—I prepared to have my breasts removed from my body.

I took a lot (and I mean a lot) of pictures of my breasts before surgery. I wanted to remember them, but I also wanted to say goodbye.

I began to personify them along with my recently removed reproductive organs. I didn’t want any parts of my body to feel like they had betrayed me. I didn’t want them to think that they were faulty or flawed or that they had done something wrong.

They weren’t being punished. They were being released.

Upon waking up from my preventative double mastectomy, I was overjoyed to feel the same sense of relief I felt when I came out of anesthesia from my oophorectomy.

I knew that I had made the right decision, and I felt free, like my life was now mine to live fully without fear.

I have never felt anything like that feeling, and I try to remember it anytime I start to feel regret when I look in the mirror at my current breasts or think about the fact that I’ll never hold a little one who looks like me.

Not everyone will be comfortable being tested and knowing their status. And not everyone would decide to follow the preventative surgery route that I did.

However, for those people who would, I feel a need to get this information out into the world.

Approximately 1 in 200 to 400 people carry a BRCA gene mutation—the prevalence is even higher in some populations—and many do not know that this kind of testing exists, let alone that they can undergo preventative surgeries to drastically reduce their risk of developing cancers to which they might have watched their family members succumb or with whom they are currently watching their loved ones struggle.

I like to think that 13-year-old Devin is pretty proud of me. But I don’t think she’ll ever stop asking me questions, and that’s okay.

Devin Sidell is an actress and currently in post production on her feature film “Love, Danielle,” a scripted drama which aims to inform people about the BRCA gene mutation.

All views expressed are the author’s own.

Do you have a unique experience or personal story to share? See our Reader Submissions Guide and then email the My Turn team at [email protected].