My Mind the Enemy – A Family History of Cancer
I remember being teenager and happily thinking that no one in my family had gotten cancer. I can remember going over each one of my aunts, uncles, and grandmas faces in my mind and confidently thinking “no cancer”. I may have to worry about tornados, sharks, and roller coasters getting stuck upside down but not cancer.
Little did I know what time would bring.
Early this morning, I found myself googling “Insurance Coverage BRCA Genetic Testing”. If you are unfamiliar with “BRCA”, it’s the breast cancer gene. Fun times.
Two weeks ago, my aunt became a breast cancer survivor overnight. She underwent a prophylactic bilateral mastectomy because of our family history and having found two lumps that could or could not be cancer. Turns out the lumps were cancer. She was not the first one.
My grandma had breast cancer.
My other aunt had breast cancer.
I just found out my great grandma died of ovarian cancer in her 40s.
To add to the list, I spent time on the Force, Facing Our Risks of Cancer Empowered, website and saw that having relatives with melanoma and prostate cancer also increases the risk of developing hereditary breast and ovarian cancer. I have had first and second degree relatives on the same side of the family with both of these cancers as well.
This means all my first and second degree female relatives on one side of the family have had breast cancer with the addition of melanoma and prostate cancer in one male relative. Not to be a doomsdayer but my odds of avoiding cancer don’t really seem all that good anymore.
Sometimes it’s hard to sleep.
My mind the enemy.
I’m considering being genetically tested for the BRCA II and BRCA II genes. Women who carry these genes have a genetically higher chance (up to 80% chance) of being diagnosed with breast cancer.
Unfortunately, it doesn’t look like a test would be covered by my insurance. Paying $2000-$5000 out-of-pocket is steep when there is a good chance of getting a “false negative”. It’s a little complicated but I’ll try to explain. Unless it is “positive”, the test wouldn’t be helpful because my mom, aunt, or grandma haven’t been tested. In other words, a negative is only a true negative when the gene has been identified in another family member.
My mom’s insurance turned her request for a genetic test down because she was over 50 by five years. Never mind that this was her second round with cancer. My aunt is also over 50 by two years and her insurance wouldn’t cover a genetic test.
I found my insurance company’s policy.
Genetic testing for a BRCA1 or BRCA2 mutation, associated with genetic counseling, is considered medically necessary when ANY of the following criteria are met:
- Individuals with breast cancer who have 1 relative with breast cancer diagnosed at an early age (less than 45 years) ; OR
- Individuals with breast cancer diagnosed at an early age (premenopausal); OR
- Individuals with breast cancer with multiple primary cancers or bilateral disease; OR
- Individuals who developed epithelial ovarian/ fallopian tube/ primary peritoneal cancer; OR
- Men who developed breast cancer at any age; OR
- Individuals with a personal history of breast cancer, and diagnosed age less than 60 years with a triple negative breast cancer; OR
- Individuals with a personal history of breast cancer, and diagnosed age less than 50 years with a limited family history; OR
- Individuals with a history of breast and/or ovarian cancer at any age with two or more close blood relatives with pancreatic cancer at any age; OR
- Individuals with a history of pancreatic adenocarcinoma at any age with two or more close blood relatives with breast and/or ovarian and/or pancreatic cancer at any age; OR
- Individuals who have 1 or more first or second-degree relatives who meet ANY of the above criteria; when that relative(s) is (are) not available for testing; OR
- Individuals with breast cancer who have 2 or more first, second or third-degree relatives (related through a single lineage) with breast or epithelial ovarian/ fallopian tube/ primary peritoneal cancer; OR
- Relatives of individuals with documented mutations in either the BRCA1 or BRCA2 gene; OR
- Individuals with a family history of 3 or more first, second or third-degree relatives with breast or epithelial ovarian/ fallopian tube/ primary peritoneal cancer, at least 1 of which has breast cancer that develops at or before age 50 years; OR
- Individuals with breast cancer who belong to a population at risk for specific mutations due to ethnic background (e.g., Ashkenazi Jewish, Icelandic, Swedish, Hungarian or Dutch descent).
In a nutshell, since my family members haven’t been tested themselves and are older than 50 by two years, I don’t qualify for genetic testing.
Are the women in my family getting breast cancer by chance or is it genetic? If my family does carry a BRCA gene then it appears we have to wait until cancer makes its ugly appearance in someone under the age of 50 before insurance will cover a test. Seeing that the age of occurrence keeps going down, I can’t help but worry if I will be that person.
My mind the enemy.
Maybe a genetic test isn’t the answer. Even if I would get the genetic test it’s not a guarantee. I could test negative and still get cancer or I could test positive and not get cancer.
Not wanting to live a life of worry, I’m looking into having a prophylactic bilateral mastectomy. It may sound extreme and, to be honest, it is extreme. Removing body parts isn’t most people’s idea of a walk in the park but neither is cancer. I really don’t think I want to live my life wondering if I’m next in line and getting constant mammograms. Mammograms that might or might not catch cancer as was the case with my aunt and my grandma.
I know, I sound crazy and, perhaps, I am but I’m not clueless. I’ve spent hours researching my options, reading message boards, and one fact remains: all but one of my 1st and 2nd degree relatives have had breast cancer.
In the meantime, I continue to do what I can: eat well, exercise regularly, and pray to quiet my mind the enemy.
Does anyone have any resources or knowledge on this topic? Would you want to to be genetically tested if you were me? Why or why not?
(Oh and sorry about the downer post. I had to get it off my chest. No pun intended.)
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