So…I have good news and I have not as good news.
First the good news.
The eight weeks I was waiting has come to an end. I had another PET scan on Wednesday. I got the results on Friday. The short story is: Decreased size and FDG avidity of anterior mediastinal mass.?Deauville score = 3 (previously 4), compatible with complete response. Longer story: Decreased size of anterior mediastinal mass ?measuring 3.3 x 2 cm with SUVmax 3.4, previously 4.6 x 2.3 cm with?SUVmax 5.9.
The tumor is smaller, less bright, and the Deauville score dropped.
I am now faced with a decision. To radiate or not radiate. I can do nothing. I have an increased risk of recurrence with this choice. I can do radiation and all but eliminate the chances of a recurrence but I increase my risk of long term cardiac side effects.
And, the bad news. The insurance company denied the request for proton radiation. Three times. So proton radiation is out.
Now my decision is between do nothing and standard radiation.
Not an easy decision.
In other news, I have a cardiologist because chemo also has cardiac toxicity risks and the cardiologist is going to be part of the team monitoring me post treatment.
I am leaning towards the radiation therapy. I really do not want a recurrence. The immediate side effects of radiation are minimal. I won’t have to travel farther than across the parking lot from my office. I will have the increased risk of long term cardiac side effects. I do not have actual numbers for the amount of risk. It is fairly small but not nothing.
Regardless of what I do I will have many years (likely the rest of my life) of regular and frequent monitoring so any issue should be caught early.
I am still thinking but I think radiation is the answer.
I also started physical therapy. This is a good thing. My oncologist asked me what was bothering shortly after I finished chemo. I told her that my legs were still very weak. She prescribed physical therapy. My quads are in fact weak. And I have some balance issues made worse by weak ankles. My physical therapist is working me hard and I have sore muscles, but it is already helping.
Overall I feel really good. I have so much more energy and all the side effects of the chemo are gone. My hair is growing back and is long enough that I am going without the beanie hats that I wore all the time while I was bald. And all my hair is growing back – like the hair on my knuckles. I didn’t realize I even had hair on my knuckles, but it is going back. I am starting to feel like my old self again. I will know I am really there when I can go for a run. I am sure that is not too far in the future and I am really looking forward to it.
So, I have had a week of good news and bad news. The good news is really good news and the bad news is not that bad.