Soon coming up on 2 years.  CT report was negative.

Having read a lot more about prognosis, I was concerned.  There isn’t much reliable data out there.  From what I read, my expectation is about 50:50 for recurrence.  I’ve been having some chest wall pains (pleuritic pains) with breathing, and when I look at my belly, it’s kind of asymmetric.  So I wondered about those observations being a sign of cancer recurrence.

I had read that other patients ask their primary doctor for the CT results, for less of a wait.  That did not work for me.  I knew the report was there, but was not able to access it.  That added to the time and, to be honest, there is some suffering in that.  I did some calculating.  The prevalence of GIST seems to be around 6 to 12 out of one million people.  Some will have undetectable disease.  My health plan has 500,000 patients.  So, in the health plan, there are expected to be 3 to 6 patients with GIST.  Then, divide subtypes of GIST, gastric, intestinal, Exon 9, Exon 11 – maybe 2 or 3 with something analogous to my presentation.  I don’t expect that anyone be experienced, only don’t try to feign authority when there isn’t any – hence, former oncologist is now former oncologist.

New oncologist.   He was excellent.  I am very grateful.  I have to drive 40mile north, to Longview WA, instead of 20mile south, into Portland – but with Portland traffic being so bad, the amount of driving time is about the same.  My new oncologist is more open, more knowledgeable, more experienced, more empathetic, more respectful, more human.  He discussed the disease with me and made a great deal of sense.  He impressed me that he had researched the disease, and has a few other patients with GIST.

So, a bit of a reprieve.  Next scan in 6 more months.

The past 6 months were harder than the first 6.  I’m glad they are done.  I hope now I can think about it less, leading up to the next scan.  Try to be accepting of fate, accept what happens, and also hope for a little more time to do the things that I want to accomplish in life.

I know I can’t handle long term working as I do.  It’s all I can do to barely keep up.  So I will be retiring about as soon as allowed – 12 months from now.

Peace.

Advertisements