Okay, so most recent update. I've been experiencing some increasing issues with my movements since late August, and went to see my surgeon (the original from last March) for a follow up early in September. He looked inside with a camera thingie, and what he saw seemed to be continual healing from the initial surgery, so not to worry.
As it's now late October, and the bleeding during movements hasn't stopped, and the recent PET scan had indicated there might be something going on in my no-no zone. Because of this, I decided to have a surgeon consult up at the Portland hospital where my Oncologist works. Not that I don't trust my original surgeon, but I wanted a fresh set of eyes, and felt having my treatment team all be in the same location could be beneficial.
It turns out, in the space of a little over a month, I now have a "walnut sized' tumor reappearing in the same spot as the original surgery. As the locally based surgeon was looking to remove a hemorrhoid and not a tumor in March, it's pretty likely we just didn't get a clean and complete removal of that tissue,
So now I get to have a sequel of the original surgery, without of course the super nasty surprise that it's an anal melanoma tumor (old news... yawn). Yay for me... but at least it doesn't really mean anything other than we just didn't get the entire original bit removed, and the walnut size, just means the skin around the area is bulgy cause of the location and such, not that I have an insanely large amount of fresh mucosal melanoma developing.
The surgeon up in Portland actually is pretty amazingly aware of what I have going on from an oncological perspective, and of course let me know just how special I must be to have such a crazy rare cancer (as well as difficult to treat). We discussed the c kit mutation discovered in the genetic test, and he related a story of another patient with a tumor in the same area (different super rare cancer, but again, he let me know not as rare as mine, to which I cheered ... well not so much lol). She also had a kit mutated gene marker in her cancer, and was able to use Gleevec with tremendous success, and it's been a few years now and her tumors are completely under control (except that she had to switch insurances as her original provider would only pay for 6 months of the pills...).
So next Wednesday I'll be back up in Portland getting my no-no zone cut open again, and will be sitting on pillows made of ice packs for a couple of weeks ... again.
On the upside, the surgeon felt this was likely the opportune time for this kind of procedure, since I haven't started the Gleevec (some wrangling with insurance and the hospital back and forth, but having a recurrent tumor should certainly help provide additional ammunition for this discussion). Apparently with a more traditional cancer treatment approach (Gleevec vs IL2 or Yervoy), it's best to not have to recover from surgery while your body is dealing with the medicine.
For the record - I'm still bitter about never seeing any IL2 induced hallucinations nor having had the sail boat-effect promised in the treatment brochure back in June, but I'll settle for basic progress, and a few weeks of light eating...
And you know... questions you wish you would've asked would certainly include:
"Now when you say size of a walnut, would that be with or without the shell...?"
But since I didn't, we're going on the premise of shelled nut. Just cause I prefer that idea all things considered,
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