I began this post on January 7. I’m finishing it four months later. So much for “BRCA in real time.”
Every so often, a few women from my local FORCE group get together informally for coffee and to chat. Usually we talk about our dissatisfaction with our sex lives in our post-menopause and/or post-mastectomy world. It’s not quite as depressing as it sounds since when you’re with a group of women who are all experiencing it, you can approach it with some humor and also get a little bit of advice to boot.
Anyway, at our get together in December, I said that I was thankful that I’d had a full procedure-less year. No surgeries, no BRCA-related anything except for a melanoma screening, which seemed hardly more thorough than the way my 4yo son sometimes glances over at me while I’m getting dressed in the morning and he’s sitting in our bed watching Bubble Guppies. I had even skipped my breast exam, which I was feeling a bit regretful about. But 2015, I announced, I was getting back on the BRCA wagon. And I was planning to start with my pancreas.
As a BRCA2+ family, our pancreai (?) pancreases (?) pancreum (?) are at particular risk, especially for men. My father’s brother died from pancreatic cancer before he turned 60. My father is extremely vigilant, getting an endoscopy each year, because pancreatic cancer (much like ovarian cancer) is rarely found at a stage when it is still treatable. But recently there has been more conversation about the need for BRCA2+ women to have pancreatic screening as well. When we talk about BRCA-related cancers, we often refer only to breast and ovarian, but pancreatic is the third most common. So I made an appointment with a gastroenterologist who specializes in pancreatic cancer. In fact, Dr. Brand specializes in the genetics of pancreatic cancer, has his own genetic counselor on staff, and conducts his own research study on people with BRCA mutations as they are screened through his office (before I left his office, I gave him a blood sample and completed a survey so that my data could be used in his study). Here’s a great video of him talking about the basics of genetics, pancreatic cancer, and screening.
I made the appointment in January, and I had the appointment in April. It was incredibly informative, and I hope that repeating some of this information is helpful to readers. Of course, this is information that my doctor gave to me based on my history, and it should not be taken as medical advice in any way.
Dr. Brand explained that the most recent data shows that women with a BCRA2 mutation are at about a 2-3% increased risk of pancreatic cancer above the general population of women. His data, based on his own patients, shows that if you have a second-degree relative who has had pancreatic cancer, then the risk is about 15% – this is regardless of genetic mutation. This is why my father has endoscopic ultrasound every year – because his brother had pancreatic cancer. Dr. Brand says that a person can wait to begin screening until ten years before the age of diagnosis of the family member. So, since my uncle was 58 when he was diagnosed, I can wait until I am 48 to begin screening (ten more years). But even Dr. Brand was optimistic that there could be better options by that time. He also says that in the meantime, some good options for prevention include weight loss, increased activity, baby aspirin, and 2000 IUs of Vitamin D daily. I’ve started the Vitamin D.
I left feeling pretty positive about this appointment — for myself. But as I think I’ve written about before, last summer my husband’s father was diagnosed with pancreatic cancer. During a CT scan for a kidney stone, the doctors saw a small shadow in the corner of the screen, which led them to a large mass on his pancreas. They were able to remove the mass, and his father underwent chemotherapy for Stage 2 pancreatic cancer. This is rather miraculous – pancreatic cancer is rarely found at this early stage. My father-in-law sailed through chemo and is doing quite well. But I’m nonetheless extremely worried about my husband, who has a BRCA1 mutation inherited from his mother and is now at risk of pancreatic cancer from his father.
This genetic cancer crap never ends.
My husband is supposed to have an appointment with Dr. Brand before the end of this year – it’s the year of his pancreas as well…. the year of our pancreai or pancreases or whatever. I just wish that instead of spending so much time trying to figure out to pluralize the problems that multiple people have in my family, we could just figure out how to eradicate them all together.