I arrived "here" as a 2017 stage 3B. Did "probably Optivo" in a blind clinical trial through 6/18. Clear scans until mid-Feb. (very minimal side effects, and the yervoy only arm was collapsed during the study) hence the "optivo arm" surmise. Doc shares it.)
Regular quarterly CT revealed a mass in the spleen area. You can't biopsy that without big risk ("it's just a bag of blood vessels") so I had a PET CT
The PET CT revealed additional "very concerning areas" in the neck (small, non-palpable) and stomach fundous area. The plan was to biopsy the neck and get an endoscopy. The neck would be first, but not uncomplicated as it would require some isotope tracing, assembling a surgical team to work with radiation, etc.
On Friday before last, that was the plan. On Wednesday, my surgeon reversed course and closed his office. I was told all surgeries were cancelled - which we have all heard.
I called several endocrinologists and none are taking new patients, I assume the "no surgery" thing is also the case with endoscopy.
The day after the surgeon cancelled it finally clicked in my mind, "this stomach thing, if real, its gonna be inoperable and I'm done".
Eventually I was able to reach my oncologist in the trial. I stated flatly "I can't get the biopsies, the stomach would be inoperable, I need to be unblinded and put on the combo immediately".
To my dismay, joy, surprise and lack of surprise the MD quickly agreed and said he would submit an emergency unblinding request to BMS.
In a way, when biopsy became unavailable, it has only accelerated the timetable to get to re-treatment. We are going on the "best evidence available" now which is only the PET CT.
The decision to "risk uneeded treatment" if the biopsies came back negative is easy in my mind. I am awaiting the unblinding decision this weekend. I'll finally learn by BRAF status too.
So, I feel I am on the right course, and perversely this may work in my favor.
I'm just putting this out there to see if others with my bad timing are getting biopsies done. For our beloved expert panel; "do you have any other insights given this - hopefully fairly singular - set of facts?"
Thank you, be safe.