It’s been quite some time since my last cancer-related post. Most of this past year I blogged about life in Southern Arizona as Jim and I began a new chapter. That blog is located at leeasbellqc.wordpress.com just in case you want to drop by for a visit.
This month marks my sixteenth year as a cancer survivor. It also marks the passing of yet another family member who died young from cancer. I have never spoken about her by name in any of my writing. She valued her medical privacy. Now that her seven-year struggle with ovarian cancer has ended I would like to share a few aspects of her story.
My Dad’s daughter from his first marriage was always known as “Koko” and we saw little of her when we were kiddies. She was six years older than me, did not get along well with our Dad (who did?) and as a result, I did not know my half-sister until we got re-acquainted at the wedding of our first cousin in 1987. Here we are at the wedding along with my younger brother, John.
My Dad (leukemia) and his only sibling, my beloved uncle, Wilbur Pritchard (lung cancer) had seven descendants. Two are now dead from cancer. My cousin Hugh died in 2005 at age 51 from bile duct cancer. Koko left us on the 4th of July, just a few weeks after her sixtieth birthday. And then there is me, the long-term breast cancer survivor and first member of the family to discover we have the BRCA1 mutation. Had Koko never gotten ovarian cancer, I might never have tested.
Back in the summer of ’98 when the BRCA tests were not covered by any insurer and there was no family history of breast cancer, I declined the $4,000 test and proceeded with treatment. I had no children and knew I never would. Perhaps if I had kids my decision might have been different. Fast forward to 2011 when my gynecologist asked me to consider testing again, even though I had been cancer free for a long time. Ovarian cancer occurs more commonly after age 50 and I had just hit that mark.
I had no idea that BRCA can of worms would be so big. Not only did I have the BRCA surgeries, my other sister Anne tested and was also positive. She had the surgeries too. We may both owe our lives to Koko’s fatal illness. Recently my brother JP had a horrific episode in the hospital with a ruptured appendix and now, pancreatitis. I have urged him to be tested for the family mutation without success. He does not want to know and I must remind myself that his decision must be respected, even if I do not fully understand why.
Today, I found a new cancer home at the University of Arizona Cancer Center. I was due for a checkup. Routine stuff, but very necessary for anyone with a high risk for cancer. Once the boobs and the ovaries are gone, too many BRCA-positive women get lax about other screenings. The breast surgeon informed me it would be a good idea to be screened for pancreatic cancer. This is no easy task. It involves an abdominal MRI and EUS, an endoscopic ultrasound. If the ultrasound is clear, I will only need an annual abdominal MRI in future years. My insurance will pay for these spendy tests because I am high risk. Without the knowledge of my BRCA mutation I would not get this care. Pancreatic cancer is incredibly deadly because early detection is so difficult. Much as I hate more surgical testing, it beats the crap out of more cancer, especially a killer like pancreatic cancer.
While I will always be thankful to my sister Koko for helping me to discover the seemingly never-ending BRCA mess, it saddens me greatly that she herself never tested for our family mutation. Early in her illness they tested her for the three Jewish BRCA founder mutations but not the full panel. That was in 2007, some four years before I tested. By that time, her BRCA status no longer mattered to her or her medical team.
It was too late for Koko to benefit from BRCA testing, but it is not too late for my brother, JP. Being the stubborn, bossy older sister type, I may just take a run at him again. Now that he has had pancreatitis, if he is BRCA positive his risk of pancreatic cancer is high. I should not be the only one in the Pritchard family who gets that damn scope down the belly.