Michelle: Strength and hope dealing with the BRCA1 mutation

Michelle: Strength and hope dealing with the BRCA1 mutation

Michelle Kennedy is BRCA1 positive. She is a Senior Mortgage Loan Processor, wife and mother to her three sons. She had her hysterectomy/BSO (removal of fallopian tubes and ovaries) just a few weeks ago.  To read the entire BRCA series click here.

By Michelle Kennedy

My mom fell ill when I was 15 years old. She was in lots of pain and was diagnosed with ulcerative colitis. The treatment didn’t help so her doctor ordered a CT scan. While waiting for the results the pain became unbearable and she was admitted into the hospital for pain management.

The next day the results came back and we were told she had a text book sized tumor on her one and only ovary. The ovary that her OB left when she had a full hysterectomy the day I was born. Maybe I’m a little bitter. I know it was unforeseen at the time.

Surgery was scheduled for the following morning to remove the tumor and an oncologist was brought in to consult. My mother, Rebecca, was extremely upset because her father had passed away 14 years prior due to colon cancer that had spread throughout his body. After surgery she was diagnosed with stage 4
ovarian cancer and given only a few weeks to live without treatment.

A little over 2 years, 12 surgeries, an ileostomy bag and every experimental chemo treatment available to her she lost her battle. The cancer spread fast and took over her intestines. She couldn’t survive with any less intestine than what she had left and her oncologist gave up the fight. Two months in Hospice and she finally gave up herself.

A few years later her older sister was diagnosed with breast cancer. They had caught it early and she survived after a mastectomy and a few rounds of chemo. Two years later while having her gallbladder removed the surgeon found a few spots on her liver. The breast cancer had come back and had spread to her liver. She had another mastectomy, half of her liver removed and chemo started. She relapsed again several years ago and just passed away this year.

After my third son was born my OB/GYN suggested I take this “new test” for breast and ovarian cancer gene mutations. I had been battling ASCUS (the most common type of abnormal Pap smear result) prior to getting pregnant and had several surgeries before. So, I figured what could it hurt? I’ll have a hysterectomy and life goes on. Wow, was I naive!

My pap came back clear for the first time in years so I was elated with the good news. I figured one test down and one to go. Things were looking up finally. A week later I got the call. I knew it was bad news when it was my doctor on the line and not a nurse. He explained the results to me and what my chances for each type of cancer were while I cried. These words will never be forgotten, he said, “We don’t know for sure thatyour mom was positive but I would speculate that she was.

My aunt was battling a relapse at this time so I called her and suggested she get tested so she could pass the info on to her daughters. She came back negative so her breast cancer was not due to the gene mutation but highly coincidental. My nephew had been diagnosed and survived ALL (acute lymphoma
leukemia) a few years prior and was tested as well with negative results.

I talked to all of my aunts and their daughters. Some of them chose to get tested and some decided they didn’t want to know. One of my cousins tested positive as well but her sister and mother didn’t want to take the test. It is almost a certainty that her mom carries the mutation.

After my results I struggled. I cried a lot in the shower or when I was alone. I have had a few scares. I have cystic ovaries and dense breasts so every time I get a call after a test I shake uncontrollably. I plan on having a hysterectomy within the next year and bilateral mastectomy with reconstruction as soon as I can save enough money to cover what insurance doesn’t. If the money wasn’t an issue I would have already had both surgeries. It’s unfortunate that money rules the world like it does but we can only do what we can.

I have recently switched to a new OB/GYN and have my first appointment at the end of this month. She is more knowledgable about BRCA and is willing to work with my insurance to get breast MRIs covered for me due to my dense breast tissue. We will be talking about yearly ultrasounds as well as CA-125 blood tests too (blood test that can detect ovarian cancer).

I don’t know my fate entirely but the odds aren’t in my favor. I don’t want to go through what my mom went through. I want to see my three boys marry and have children of their own.

My results are BRCA1 3604delA. I don’t let it rule my world but it is always lingering in the back of my head. Some days I wish I could forget but then I know it’s not something I should forget about. I plan to become a previvor and got a tattoo to remind me of this journey I’m taking. I have included a picture below.

Thank you for letting me share my story. This is a scary journey but I’m glad I found out early and can be proactive with testing and eventually surgeries that will take away most of my risk.

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