Had my appointment this morning and here are the important pieces of information:
My PET scan showed potential activity in my uterus and surrounding tissues. My doctor doesn't think it is likely to be cancer-related but has ordered an ultrasound just to be sure. Regardless, it shouldn't impact the treatment options we have. I am guessing my uterus is just being dramatic.
My PET scan also showed potential activity on the back of my left thigh. My doctor checked around my thigh and found nothing, I've had no pain or discomfort and there is no lump. She's considering this is likely just a fluke of the scan and not a tumor.
My PET scan showed NO tumors in my liver, stomach, other organs, etc. Only obvious tumors were on my back (known) and possibly the uterus (to be determined). This is good news.
The genetic testing came back on my biopsy and the sample turned out to be BRAF positive. What does this mean? Well, from my limited googling and barely workable knowledge of the subject it seems that they can test for, and find, a specific gene mutation that is causing my body to grow these tumors. I now have more treatment options because this gene is present, and the overall survival rate of folks with BRAF present is significantly higher than that of folks without BRAF present.
Quick side note -- how rad is it to see PET scan results? I don't have the images myself but seeing them was so cool when the doctor showed them to us. I saw my spine, my kidneys, all sorts of stuff! Science is very cool!
I will now have the incredibly daunting task of choosing my treatment. My doctor gave me a handy printout of the graphs from this article, and it seems the takeaways are this:
Highest overall survival rate is immunotherapy with two drugs, Nivolumab plus Ipilimumab. These would be given to me through regular IV treatments. (This also runs the highest risk due to the higher rates of toxicity though, it could make my immune system go bonkers and attack me instead -- this is where the risk of life-long diabetes, lupus, or other auto-immune disorders could be a potential side effect)
Second highest overall survival rate is BRAF inhibitors (not mentioned in the article, she got this data elsewhere, not sure where). This would be administered in a pill. This could be safer and less toxic to my body. However, this has a lower percentage of "progression-free" so it may not be as helpful in getting me to the desired NED status (No Evidence of Disease).
Third on the list is Nivolumab alone, which has lower percentages of both overall survival and "progression-free". Possible as an option to keep me safe, but still IV-administered and less effective than BRAF inhibitors so I likely won't go this route.
Ipilimumab alone doesn't even warrant consideration as an option because it's the lowest. I'm not considering this because I have plenty of other options.
With all this in my brain, I am feeling maybe optimistic? But now I will have to weigh my options of risky immunotherapy double whammy vs BRAF inhibitors without effectively slowing the progression of the disease. I will discuss this with the doctor next week at Dana Farber, and see if there are any clinical trials I can participate in (such as hopefully immunotherapy PLUS BRAF inhibitors maybe?)
We'll see. If I had to pick only one thing right now I think I'd pick the mega-immunotherapy-toxicity-bomb-of-doom, because I'm in fine health already, and stubborn as hell. But I will talk with the Dana Farber doctor and make my treatment decisions after that appointment (a week from today) and with any luck, I will start treatment extremely soon after.