Why I Chose Genetics Testing for Cancer with Crohn’s disease and Psoriasis Lingering in the Background
The first several hours after my mom delivered her potential cancer diagnosis were a whirlwind. I immediately reached out to friends who have walked this walk and colleagues who work with cancer patients. One thing that kept coming up in each conversation was genetic testing. As if I haven’t hit the genetic lottery already with Crohn’s disease, psoriasis, and psoriatic arthritis! Breast cancer, let alone any cancer, was the last thing I wanted to think about.
Armed with what little information my mother was provided, I called my women’s health doctor’s office. I explained the situation and was told that they would have someone call me within the hour to set up genetic testing.
You may be wondering why I’m writing about this on this Crohn’s disease space. Here’s why.
Cancer risk with biologic medications
When you have autoimmune-mediated diseases like Crohn’s, psoriasis, or psoriatic arthritis (or all three) you may use a biologic medication. We know there is cancer risk associated with biologic treatment use. I’ve made my peace with benefits versus risk.
It’s always been “the big C” that has lingered as a risk in the back of my head. I grew up in the sunshine state and was not a regular user of sunblock when I should have been. Cancer runs on both sides of my family and has always felt like a ticking time bomb waiting to go off. Like I mentioned, I’ve come to terms with benefits versus risks. So, I’ve never really worried about the potential cancer risks associated with my treatments.
I’ve heard from friends who’ve lost their parents to cancer that you hold your breath as you approach the age of their diagnosis. You exhale a little more as the years pass on, but the fear never leaves. This is where my mom was, and this is where I was arriving as I processed the math.
A medical assistant called me back with the next steps and had me answer a verbal questionnaire about family history. There were so many more Yes than No responses. I became rattled at the number of Yeses. I called on a Friday and they wanted to see me that Monday. "We will squeeze you in."
There was a lot of “sorry you are here for this” and sad looks from the staff. My mom came with to help answer family history questions for the Nurse Practitioner performing the genetics counseling.
What happens at a genetic counseling appointment?
When you arrive for the genetics counseling they will review a litany of items with you. The majority of which seem to be financial. Why? Because there is no guarantee that insurance will pay for it.
She went over genetic risks and their percentages. Certain lifestyle choices were reviewed. The Nurse Practitioner reviewed how they positively impacted risk for certain cancers. She also repeated half a dozen times about how insurance may not pay regardless of meeting specified criteria. Once we completed the session, her medical assistant brought me over to the lab. The same list the Nurse Practitioner outlined about insurance paying was reviewed by the medical assistant. I then had to sign as an acknowledgment that I may be financially liable to pay.
Genetic counseling at the cancer center
One week later, I was sitting at the cancer center with my mother and her genetics counselor; a legitimate one with a certification. I’m not saying that my women’s health office’s genetics counselor isn’t legit, but there is a difference. The genetics counselor at the cancer center is certified and works strictly with genetic risk and counseling only. The women’s health Nurse Practitioner is more trained on this subject matter than other staff in her office but not in the thick of research like the cancer center’s counselor is.
What I learned from the cancer center’s genetics counselor was more informative. She had pamphlets and drew diagrams to help. The counselor also focused on all cancers with genetic ties, not just BRCA gene mutations. She reviewed my lack of good fortune with having Crohn’s, psoriasis, and psoriatic arthritis and being on biologics. It was comforting to hear that the diseases and treatment didn’t impact my risk with genetically linked cancer, genetics does. When you’re in a state of worry and fear, all reasoning can go out the window.
Different options for the genetic counseling
The cancer center offered different types of genetic risk tests. If my mother participated in the testing panels, I would be able to, as well, and at no cost. But I had just done the blood draw at the other office. I truly wish I had known before agreeing to the blood draw at the women’s health office. I don’t regret not waiting that week, because I was running on fear and adrenalin.
However, I will also add that the best counseling came from the cancer center’s genetics counselor. Some of the information provided by the Nurse Practitioner was considered outdated by research provided at the cancer center.
About two weeks later, the women's health office called with results that I did not have the BRCA genetic mutation. My mother’s BRCA results from the cancer center came back the same, and also provided more overall cancer risk information.
In the end, if I could do it over again, I would have waited for my mother’s genetic counseling session and used their services. But hindsight is 20/20.
What is your comfort level disclosing your IBD to your employer?