Wednesday, March 13, 2024

3/12/24: My Dad Got Genetic Testing

Turns out, my dad has the same BRCA2 VUS that I have.

He went through the process of getting tested with my genetic counselor, and on the report he got with his results, it says:

"[T]here is one Chinese based laboratory that suggests the variant is likely pathogenic (associated with cancer risk), and another Italian based laboratory that suggests the variant is likely benign (not associated with cancer risk)."

Both labs are outside the U.S. and their standards are unknown. Plus, with contradictory findings, it's just a lot of data that doesn't actually move the VUS classification.

The report goes on to say that additional family genetic testing can help "in an effort to learn more about whether this particular variant in BRCA2 tracks with the cancer in your family." I think it's very interesting that my dad and I both have this variant and we both had cancer (my dad had prostate cancer, which is also linked to the BRCA2 gene), while my 3 cousins who got tested all do not have this variant and do not have a history of cancer. We have a few more relatives on that side of the family who have had cancer but haven't gotten genetic testing; I'd be interested in knowing their results!

Thursday, January 11, 2024

1/11/24: Final NP Appointment

Today was my last yearly follow-up in the Breast Center. I was diagnosed in 2019, and they follow patients for 5 years following diagnosis.

The appointment took all of 5-10 minutes. The NP did a breast exam and thankfully didn't find anything. She asked about my side effects from anastrozole, and also about the latest developments in my genetic testing situation. Just like in previous years, I was impressed that she had clearly reviewed my medical records beforehand.

She started to wrap up the appointment and didn't even mention that this would be my last one. I made sure to confirm that I wouldn't have any more follow-ups, and she said very nonchalantly that I should call if I have any concerns. That's it. It was all rather unceremonious.

It's interesting that I used to feel anxious at the idea of not having regular follow-ups, but now that the time has come, it does feel good to move forward. I do still have my oncology appointments, so I'm not totally on my own yet.

Tangentially, this appointment brought up some thoughts on covid. Following national trends, my area is just now coming down from the 2nd highest surge after the Omicron peak. My hospital's current mask policy requires staff to wear masks when in patient rooms, but not elsewhere, and patients and visitors do not need to wear masks. Since we know that covid is airborne, this mask policy is performative at best. During my visit today, the receptionist who checked me in was not masked, but did require me to use the hand sanitizer. My medical assistant who took my vitals and the NP were both masked, per hospital policy. But out of the scores of people I saw while walking through the hospital to the Breast Center, only a handful of staff were masked, and literally half of them wore their mask below their nose. I saw only 2 other patients in masks, and both, like me, were in high-quality masks. If you know, you know. 

As it turns out, no one ever asks me why I still take covid precautions (e.g., avoiding crowded spaces, masking in public, rapid testing for everyone before unmasked small indoor gatherings, opening windows to improve ventilation, and using HEPA air purifiers). For the record, it's partly because of my medical history and not wanting to risk having complications. Also, it's partly because the one time I did get covid, it was dreadful and highly disruptive, so worth not repeating. Another major factor, though, is wanting to prevent long covid. The risk of long covid (which includes a laundry list of possible symptoms and conditions) is about 10%, though new studies are coming out all the time; vaccinations decrease the risk, but repeat infections increase the risk. I think most people figure, "It won't happen to me," but as someone who got completely blind-sided by breast cancer, I now lean more towards, "It could happen to me." And as someone who knows what it means to have a chronic illness -- how it requires an immense amount of time, energy, and money to manage (e.g., researching conditions, finding specialists, scheduling and going to appointments, working out insurance issues, paying lots of medical bills, etc.) on top of dealing with the actual symptoms, and how all of that can be incredibly disruptive for an entire household -- I'm willing to take steps to do what I can to lower my risk and preserve what normalcy I have left, and the best way to prevent long covid is to not get covid in the first place.