How the BRCA1 Gene Devastated a Small Family (Mine)

My mother, Lily Koval Brown, died exactly 22 years ago today of metastatic cancer. Her sister Joyce Koval Lamb died of metastatic cancer July 4, 1984. Their stories are completely different as mine is from theirs, but the one thing we all had in common was a mutation in our BRCA1 gene. Of course at the time of their deaths, the BRCA genes had not been discovered so it seemed like a sad coincidence that both died of cancer and that I, my parent’s only child, had breast cancer at 29.

One of my earliest memories of discussing breast cancer with my mother was watching an old 60’s movie on tv called “Valley of the Dolls”. In that movie, one of the characters played by the actress Sharon Tate (later to be infamously murdered by Charles Manson) learned she had breast cancer. Her solution to dealing with this disease? Suicide.

I remember my mother commenting that there was no way anyone would ever remove her breast. This was in the mid-70’s when breast cancer was firmly in the closet. It was also easy for my mother to make this comment as cancer didn’t seem to run in our family. With only her parents in Canada and the rest of the extended family still in Russia, we had no real idea if cancer did or didn’t run in our family.

I am not sure when my aunt first noticed the lump in her breast. It had to have been before 1979 as that year, at the age of 19, I moved to the city where she lived, not knowing a soul. My mother asked if I could stay with her for a short time or if she could at least help me find a place of my own. I gather the answer to both requests was a panicked no but she would be happy to talk to me by phone whenever I wanted.

Two years later, my parents split up and my mother moved to the same city where my aunt and I lived. She could never get my aunt to meet her in person although they did have long friendly telephone conversations. We didn’t suspect anything sinister about my aunt’s refusal to meeting us in person. We speculated she had grown eccentric and reclusive over the years although she was only 50.

Things came to a head when my mother was diagnosed with breast cancer in 1980. She never did have to make the decision about choosing her breast or choosing her life. The doctors recommended a lumpectomy, a new operation that spared the majority of her breast. This procedure was so new that radiation was not part of the treatment program. While my aunt sent a bouquet of flowers, she still wouldn’t make the effort to visit in person which hurt my mom deeply. The telephone conversations became fewer and shorter until they ceased completely.

The next news we had of my aunt came from her husband 2 years later. She was in the hospital as she had stopped breathing. My mother rushed to the hospital without any forewarning of what to expect. She found a skeletal woman in a hospital bed who appeared to be about 10 months pregnant.

My mother pieced the story together as best she could. It started with a breast lump that my aunt refused to get checked out by a doctor. Somehow over time, the cancer became physically apparent which was when she became a recluse. She had no medical diagnosis or treatment whatsoever until the time of her hospitalization. I still don’t know exactly what her cancer status was. It’s safe to assume she started with breast cancer but whether the huge abdomen was from metastatic breast cancer that had spread or if she developed another primary cancer or 2 along the way, no one knows for sure. The medical staff wanted to start chemotherapy but she refused as she didn’t want to lose her long hair. It wouldn’t have made much of a difference at that stage as her cancer was too advanced. She died a few days later in the hospital, long hair still intact.

My mother was flourishing in her new single life. She was always very upbeat and made friends quickly wherever she went. She reached the 5 year “cure” rate for breast cancer and we talked about how she made a much better decision about her cancer than her sister did. There was no thought of the cancer striking another part of her body, despite my aunt’s swollen abdomen, as we assumed this was just what untreated breast cancer looked like.

Fast forward a year and I got a call from my Mom that she would be having surgery for suspected ovarian cancer. They found her cancer had metastisized throughout her whole reproductive system and there was a further inoperable tumour behind her heart. She spent a year in a very aggressive chemotherapy program that resulted in long term side effects such as loss of hearing in one ear. She was determined to beat cancer and had the support of her many friends and work colleagues. Her hospital rooms always seemed like party central with people packed into the small room. If a positive attitude and social support could cure cancer, my Mom would still be alive today.

I had my first breast cancer two years later at 29. She flew to the city where I was now living and stayed with me through my lumpectomy and 6 weeks of radiation. The only time she was less than supportive of me was when she learned I had signed up for a clinical trial that would compare patients given one round of chemotherapy before surgery to those that had surgery alone. She did not want me taking chemotherapy under any circumstances. As it turned out, I was in the surgery alone group, so much to her relief I escaped chemotherapy that time around.

My Mother made it to 4 years past surgery for ovarian cancer only to learn she had developed a third primary cancer in her colon. The cancer was surgically removed and she had a temporary colostomy bag that she would have to wear for a year. Coming home from the hospital, she broke down crying tears of frustration and anger. It was one of the few times she ever showed me what an emotional and physical toll all these cancers had on her mind, body, and spirit.

A year passed and she had the reversal surgery for her colon cancer so she no longer needed to use the colostomy bag. She had now passed the 5 year mark for metastic ovarian cancer and the 10 year mark for breast cancer.

She had about 10 more good months of life. The best thing I did was spontaneously make the 12 hour drive to visit her in the summer of 1992. Everything seemed to be going great and we planned a side trip to a national park in Montana. On the day we were to leave, my mother sheepishly asked if I would mind cancelling our trip as she wasn’t feeling well. She strongly encouraged me to drive back home even though I had planned on staying a few days longer.

Reluctantly, I returned home. Within a week she called to tell me she would be having colon surgery again as another mass had been found. I talked to her surgeon after the operation who confirmed that it was colon cancer again but a completely different type than she had the first time. He also said they found metastic disease throughout her liver and there was nothing left to do that would prolong her quality of life. I asked how much time she had left to live and he paused, looked at me, and said maybe 6 – 9 months. He was either being overly optimistic or he found it easier to lie to me to give me hope. He said my mother was a remarkable woman having fought so valiantly against 4 unrelated cancers, hitting the 5 year “cure” rate on 2 of them. Maybe he wasn’t lying about the time she had left. Maybe he thought she would beat the odds one more time despite the grimness of the prognosis. In any event, I made plans with my mother for a trip we would take as soon as she got better. She gave me a sad smile but nodded along with all my dreams and plans.

About 6 weeks later, I received a phone message at work telling me to come quickly as my Mom only had 2 days left to live. I basically lived in the hospital room with her for the next 17 days until her body finally gave out. Her appearance was shocking as she had lost so much weight in the top half of her body that she barely resembled the woman I had seen 6 weeks prior. Her legs had become enormous from fluid build-up from her cancerous liver. I believe the cancer had spread to her brain as she became increasingly paranoid and suspicious of her food being poisoned and medical staff planning to kill her. She would have lucid moments – she planned her own funeral from her hospital bed – but near the end, she had seemingly lost all her words, communicating only in guttural sounds. The last semi-lucid conversation I had with her was that she had something important to tell me but she couldn’t do it in the hospital. She wanted me to meet her downtown. As that was impossible, I never learned what her important message to me was all about. I still wish I knew.

Although I spent 17 days bedside in the hospital, my mother clung onto life. Finally, I asked the nurses if I could leave for an hour to shower and bring new clothes. Of course, it was in that hour abscence that she finally let go of life and passed away. I saw her before anyone had time to pretty her up and she had the most incredible expression on her face. I can only describe it as a look of awe, as if she was seeing something perfect and wonderful. My mother’s final gift to me was to remove the fear of death. I have a lot of fear of the dying process but never again would I fear actual death.

It took until 2011, after an initial false negative on the first BRCA test I took, to learn that I was BRCA positive. By extension, so were my mother and my aunt. Unlike my aunt, I found my first breast lump myself and was checked out and treated immediately. Like my mother, I have had 4 primary cancers but mine have so far all been confined to the breast. My mother’s first breast cancer was at 50 while mine was at 29. She had 4 primary cancers in a 12 year period while I had 4 primary cancers in a 22 year period. 3 of my primary cancers occurred over a 7 year period.

My family was small to begin with and the BRCA1 gene cut a devastating path of destruction across my family tree. I have felt like an orphan since my mother died when I was 32. She has missed so much in the last 22 years. I have been roughed up by life quite a bit which has humbled me. I am no longer the spoiled brat only child I still was when she left me. She missed my marriage (and divorce), the adoption of my 2 wonderful children that she would have spoiled and adored, and any number of wonderful and terrible things that have happened through the years. I wonder what she would think of my double mastectomy, my 2 courses of chemotherapy, and the fact I had my ovaries removed as a preventive measure. Given her fighting spirit, I think she would have approved, despite her fears of mastectomy and chemotherapy.

There were so many times I thought that I have heard her voice in a crowd or smelled a perfume that made me think of her. It took a few years before I stopped automatically dialing her number on the phone to tell her some big news. Even 22 years later, I still miss my Mom so much it’s like a physical ache in my heart. I hope someday we will make that trip downtown together so she can finally tell me the important thing she wanted me to know.

Sharon Greene November 17, 2014

Posted from WordPress for Android