Okay…something interesting happened today. Just for fun, I decided to check out the NCI’s tools for physicians, which helps them determine the risk of their patients for colorectal cancer and breast cancer. I couldn't resist the opportunity, as the tools had been on their website for a few years and were developed by their researchers. I was curious about what it may relay...maybe my odds would be better! It wasn't likely, however, as I am a Lynch syndrome, colorectal survivor, through my father’s side of the family with an additional risk through my mother’s side of the family, where a family history of colon cancer, gastric cancer and breast cancer exists.
Nonetheless, a miracle occurred! The government developed test determined I was at a far less risk than thousands of research studies indicated.
I think it was a matter of not considering family history as extensively as needed for tools such as these. You see, within my father's side of the family, my brother, sister, aunt (his only sibling) and me all contracted colorectal cancer. My sister also sustained endometrial cancer and breast cancer. My father contacted renal pelvic cancer, ureter cancer, and esophageal cancer which resulted in bone metasteses and his only sibling, my aunt, (mentioned above) fought two bouts of colon cancer and ovarian cancer. My brother, sister and I have also had skin tumors removed as have my father and my aunt.
My father’s father passed away from heart failure with an underlying cause of gastric cancer. His uncle passed away as a result of colorectal cancer, his aunt had lung cancer and a “women’s cancer,” another uncle had kidney nephritis, which they believed to be kidney cancer. Two more of his aunts and uncles passed away from heart failure, which the family advised they thought there was an underlying cancer as well. My father’s grandmother had diabetes, kidney nephritis and what was thought to be kidney cancer. Had there been adequate diagnosis of cancer and cancer care then, the family would have been an oncologist's dream, or greatest nightmare, dependent upon how you look at it.
My father's father and aunts and uncles died between the ages of 54 and 56, with the exception of his grandmother and one uncle. All of us, except my father, were diagnosed with cancers between the age of 50 to 57, except my father, who was diagnosed at 61.
On my mother’s side, she suffered from a breast cancer at the age of 42 and again at a later age, according to a brother, her mother had breast cancer, her father had gastric cancer, and a nephew had colon cancer. Other cancers are reported from that side.
We are a multi-racial family, of Caucasian, Black and Native American heritage.
As a result of the high risk of breast cancer in the family with my mother and grandmother, along with a Lynch syndrome diagnosed breast cancer, most the women in our family have undergone double masectomies. Today, we are living longer...
The results of the breast cancer test indicated I had a 6.6% risk of acquiring breast cancer during the next five years and a 26% risk of developing breast cancer during my lifetime. (The average risk for lifetime risk for women is 8%)
Apparently, my odds were better than my sister, my mother and my grandmother…the only women from my mother’s side of the family, all contracted breast cancer,, but me! And had I taken this test, I would have found out, as the government had it all figured out, even with the tool not taking into consideration third generational risk (grandmother) or allowing entry of more than one race. I wonder about the women who were half white or half Asian, Hispanic, Black, Native American….how not allowing the second race will affect their outcome. The risks by the NCI were hopeful bud sadly unrealistic, as
In actuality, my risk is far higher. The breast cancer risk alone in considering possible BRCA gene mutation would be a 45% lifetime risk. With Lynch syndrome, the risk is four fold the average risk or about 35%.
Fascinated by the discrepancy in these results, I then took the colorectal cancer risk test. It was stated it was not an appropriate test for those with HNPCC. But I really don’t have HNPCC, since that is an outdated term…I have Lynch syndrome. It didn’t state anything about Lynch syndrome. Using the term HNPCC, in itself, is a barrier to testing or diagnosing cancer risk.
Nonetheless, I determined to take the test as if I was someone I was five years ago, before I got a cancer and a Lynch syndrome diagnosis. The results determined I had a 13.7% risk of acquiring colorectal cancer during my lifetime and a .05% risk of colorectal cancer within five years. Again, it didn’t allow more than one choice of ethnicity.
Due to Lynch syndrome, and within the real world, my lifetime risk is 82% for colorectal cancer, based upon having Lynch syndrome, alone. Being of black heritage, that risk may increase and may be compounded by entering into the age of the "new 50s." (Can't bear the pain of saying, six... six... six... six.....well you get the idea. :)
With physicians utilizing tools such as this, which they find on a governmental website, and not being provided the necessary information about Lynch syndrome and BRCA, it is no wonder Lynch syndrome and BRCA are NOT being diagnosed as often as they should be. Tools such as these, without the information put upon the actual front page of the test, are a barrier to those who are at high risk.
It is amazing such a tool is being used for physicians to use for breast and colorectal cancer risk to determine testing….well, we called them. Unfortunately, with the NCI, the Public Inquiries Officers make the responses to the public. We did leave a message, however, of concern, about these tools.
You know what? We can do better. We (as a partnership all working together) can add the risk of the hereditary cancers to the tool to protect families and save lives…we can add family histories to those tools and we….can make certain a good estimate of risk will be provided to physicians so they can do their job in accurately assessing risk for cancers.