So I was totally wrong when I said I would have to wait until September 2nd for my pathology reports. About 2 hours after I posted my last update I got a call from my doctor. She had my results.
The margins are negative. This is priority number one, and it is a huge relief. What does this mean? They got it all out. No more surgery – Tristen is completely, officially gone.
The official size of the tumor was 3.6 cm. Even though they removed 7 cm, he was actually only 3.6, hence the clear margins. Anything under 5 cm is considered small and typically means no radiation. This means, despite appearances, he was actually a small tumor.
Those are two incredibly great pieces of news. They’re exactly what everyone was hoping for. Typically with those results there is no radiation, the surgery having been enough to be considered curative. However those aren’t the only results I received. Continuing on…
The mitotic rate (how fast it multiplies) is 24. This is considered a high grade, aggressive tumor.
While clear, the margin at the skin was close. She did take some skin but not all, in order to avoid doing a skin graft, so we knew this would be tight.
The combination of a high grade tumor and close margin typically means radiation. So you see the dilemma now – half the results say no radiation, half say yes. So what’s the consensus?
The tumor board is going to review me again. With the new information they’ll form a recommendation for my next steps. Right now it’s a 50/50 chance of radiation. Radiation can only occur in an area of the body once, so if we radiate now and it somehow comes back (Tristen missed me too much) we won’t be able to radiate again next time, so surgery will have to be enough. If we don’t radiate now and it somehow comes back (that bastard) we could radiate me then to make it smaller before surgery, making it a less invasive surgery. This is just considering the off chance that it comes back, but since synovial sarcoma is so rare we unfortunately have no information about the risk of recurrence. The other consideration is whether or not to radiate someone at my age and the effects it could have on me. Some people think it’s better to avoid radiation at a young age, others think I can handle it at a young age and it’s better to give me a higher chance of non-recurrence.
Either way radiation would be a preventative measure. The tumor, the cancer, is gone. I will have ultimate say once they tell me their referral. I have to wait about 2 weeks for that.
In the meantime, I have my first Physical Therapy appointment on Thursday.