Donna’s Story: BRCA Diagnosis, A Hidden Blessing

This profile is sponsored in partnership with Sharsheret. Sharsheret is a national not-for-profit organization supporting young Jewish women and their families facing breast cancer. Our mission is to offer a community of support to women, of all Jewish backgrounds, diagnosed with breast cancer or at increased genetic risk, by fostering culturally-relevant individualized connections with networks of peers, health professionals, and related resources.

(1/5) “A 50% Chance”

“My 37-year-old sister was diagnosed with breast cancer. She found out the day of the seder, and she didn’t tell any of us and went on to host the seder that night in her home. It was aggressive cancer and she had just had a third kid. She went back to the doctor and the doctor was giving her an exam and felt the lump. She had just had a mammogram a few months before and they did not find anything at that time.

Because she was thirty-seven and had cancer in both breasts and was an Ashkenazi Jewish woman, she was tested for the BRCA genetic mutation and was found to be positive for BRCA 1. This was new language back then, over twelve years ago. Pretty soon we all found out about what that meant for our risk factors. My parents both got tested. My mother was a breast cancer survivor but her cancer was found quickly, early, and they assumed it was from hormone replacement therapy. My father was positive for the BRCA genetic mutation, and ironically my mother was not.

There are three girls in my family; my middle sister was tested right away, and she was negative. I knew that I had a 50% chance of being positive, and I did not want to know what my status was. I was thirty-two and single, and I couldn’t deal with knowing either way. I figured there was no reason to find out if I was positive because I was sure that I wouldn’t do anything about it – no surgery and I wouldn’t be proactive.

My sister wanted to go to a breast cancer survivor conference, and she asked me, my other sister and my mother to go with her. She wanted to learn about the latest in treatment.We were so excited that she asked us to go with her because she had been quiet about her own cancer experience. So we all went, and it was that weekend I realized that I wanted to get tested. I saw all these women who were going through all stages of cancer treatment–chemo, radiation, surgeries–and I saw what it was like. I heard a lot about how awful it was to live with cancer, and I decided, ‘I don’t want to live or die with breast cancer. I want to do something about it.’

So I went to see a genetic counselor; I got counseling and was tested. It took me a whole year after my sister was diagnosed to agree to be tested.”

(2/5) “The Decision” 

“I had a feeling that I would be BRCA positive. It was just a feeling. It came back positive. I was devastated.

The decision making that I did– to get the test and to do anything about it–was the worst part. No one tells you what to do. Doctors won’t, your family won’t–no one can tell you what the best course of action is. How are you supposed to choose to remove your breasts at a young age? I was consumed with being single; how I was going to date, and still feel normal.

I spent six months trying to connect with anyone and everyone who’d had a mastectomy. At that time, I heard about Sharsheret from my mother, and through their network, I was put in touch with women who’d had mastectomies and they helped me process what that would be like. Through their Link Program, I was connected to other women, who could talk about what the experience was like. Twelve years ago, it was hard to find women who were diagnosed with BRCA, and so Sharsheret was a wonderful resource for me.

I joined a BRCA support group, and my doctors were great connecting me with other women, too. Yet at that time, it was hard to find women who were in my exact situation. Most women who had mastectomies were married, or older than I was. They were always assuring me that their partners were comfortable with the physical changes that came with the surgery, but I felt like my situation was different; I would be starting from scratch with someone. Dating, meeting a man under these circumstances, felt daunting.

All the women in my life thought that the choice of a mastectomy made sense and were supportive of me in that decision. It was the men in my life, family, and friends, who were concerned about what that would mean for my ability to meet a man, and if that man could accept that I had removed my breasts. They couldn’t imagine how I would move forward and be perceived by other men. It was interesting to hear their perspective and hesitation. I was conflicted and the decision making was excruciating.

I went to a plastic surgeon to see her work. She showed me images of all the work that she had done. Her work made the reconstruction look like natural breasts. Seeing that even if I got the surgery, I could still feel like myself, I finally agreed to a mastectomy.”

 

 

(3/5) “The Right Choice”

“Once I made the decision, the lead up was challenging. The countdown of days till the surgery felt like a death sentence. When I woke up from the surgery, I was in pain and I knew I wouldn’t be able to work for a month, and it would be a six-month reconstruction process. Yet it felt like a breeze compared to the decision-making part. The physical pain felt like nothing compared to the emotional torture of having to make the decision.

I had the mastectomy, and I was so heavily medicated. I was afraid to look at myself. I was afraid that my chest was going to be all bloody and bruised. I was afraid that my chest was going to look savaged. It was surprisingly the opposite. I looked down and there was no bruising, nothing scary. It was the cleanest line, and I was expanded in surgery (a mechanism to expand your skin to make way for implants), so I didn’t look like my chest was completely flat. They cut everything–muscle, nipples–just a clean line of gauze was left. After the surgery the relief of making the decision passed, and I just felt okay with my decision. I had made the right choice.”

(4/ 5) “The New Normal”

“I went through a staged process with multiple surgeries. I am very happy with my results. Even my doctor is very proud of the work that she did on me. The expansion part was painful every time; the minute I started to feel comfortable they would pump fluid into my breasts to expand them. Today, I really like my breasts and feel good about them.

I am still single but have had multiple serious relationships. I tell them that I’ve had a mastectomy at various points, but none of the men that I have dated have ever had an issue with it. It’s always awkward to tell someone new, but it’s been a long time and I feel like at this point I am immune to that awkwardness. I still feel beautiful and feminine.

To lose the option for my breasts to “work” in terms of having children–that really sucked. I had to mourn them, and I got therapy. I saw a special therapist before the surgery. Her advice was to say goodbye to my breasts. I was to look in the mirror, touch them so that I could remember them. There were days leading up the surgery where I tried my hardest to capture the memory of them. It’s amazing what can become your new normal.”

(5/5) “I’m a Previvor”

“I knew with time that I would need to get my ovaries removed too. I initially shelved that; I was thirty-three and was told there was no rush till I was forty. I wanted to have children, to meet a man, and have a family. The doctors told me just to live my life. I should’ve frozen eggs sooner than later, but they put so little pressure on me, I felt like I had more time. I froze my eggs a little late, and I tried IVF to have a baby by myself and unfortunately, it didn’t work.

I was getting surveillance for my ovaries, and around age forty-one my doctor began to tell me, ‘It’s time. You are becoming high risk for ovarian cancer.’ Two years ago, I had an oophorectomy (ovaries being removed). When it came down to it, it was devastating because it meant that I wasn’t going to be able to have a child naturally. Then I immediately went into menopause and had to deal with all the uncomfortable side effects of that stage.

I don’t think about cancer anymore. Once a year I go to my breast surgeon for an exam, and I see my plastic surgeon once a year to make sure my implants are still okay now that it’s been twelve years. When I go to my doctors, I’m excited to see them because I feel like I have a relationship with them, and I went through so much with them. I never go into the office worried that they are going to find something. I feel like I’m safe. As the people I know are getting older, so many are being diagnosed with cancer. I feel like I had this terrible hand dealt to me when I was young, but now I feel like I am lucky. I feel really lucky.

This is one of the only cancers you can actually do something about, preventatively. I feel like finding out that I was BRCA positive was a blessing.

All I wanted to do after this experience was pay it forward. I reflected on how much support I received from Sharsheret and the women I met through them, and I wanted to be a resource for other people. I didn’t want anyone to feel like they had no one to talk to or no one who could understand what they were going through. Now I’m a volunteer for ‘The Link Program,’ which is a peer supporting program. The fact that Sharsheret is a Jewish organization I feel was helpful to me because the women I met had similar cultural experiences that I had in my family. There is more of a connection because, at the end of the day, we were speaking the same language. Talking to all different kinds of Jewish women, it’s clear that when you talk about life and death, labels don’t matter.

Now, my sister is a healthy breast cancer survivor for thirteen years, my mother is a survivor for twenty years, and I am what we call a ‘Previvor.’”