Friday, February 25, 2011

PET scan it is!

As I left you last, the burning question on my mind was, "why now!". Well, I now know "why now". Dr. S. called me back finally on Wednesday and gave me the reason why along with the consensus of the hematology group on the tumor board.

They have all agreed that with my somewhat confusing history, they want a PET to be sure that the only affected lymphnodes are the ones in my mediastinum and that there is no further involvement. Should this be the case then Dr. S. will proceed with a "curative" dose of radiation. However should there be more that just this area we may be looking at just a palliative dose of radiation, with the possibility of that combined with some form of chemo that I "can" have.

Ideally the treatment option for this is chemotherapy, but the regimen  required contains drug, of which I've had my lifetime dose of already, and therefore ruled out. There "ARE" still chemo options that at best would keep things at bay. Then should things progress any further than I think we would be looking at some clinical trials, or "off label" stuff to rid this disease.

Problem with this whole scenario that has my mind going nuts is there is still that "spot" on the upper right neck next to the ear that showed up on the gallium scan! It is my hope that the Dr. is right and it is not related and does not show up on the PET scan. It is also my hope that there is nothing other than the nodes in my chest that show up.

 The PET scan will also be valuable the Dr. tells me for "mapping out" the area for radiation in the chest as it needs to be very targeted due to the location of the affected nodes. This will offer him the opportunity to use a heavy dose of radiation, which will hopefully rid me of this crap once and for all.

I've been to the cancer center to sign the necessary consents for the PET scan, also answered some questions on a questionnaire which is part of the "application for approval" package. This has to  be approved by OHIP (Ontario Hospital Insurance Plan) which covers the cost of the scan. Should they not approve it the cost would be prohibitive for me to do.

This is whole PET process is to be part of a clinical study which is the only way to get one here in Ontario that is covered by OHIP. This whole thing is B.S.  because I also have to travel to London ON. to have it done as there are no PET scans in any of the 2 hospitals here. There IS one here in Windsor, ON. but it is privately run and has been here for three years now sitting idle. That's right IDLE! because they need to perform at least four scans a day to run it, and can not get that many people with the money to pay the cost of it, they actually end up asking you to go to their office in Toronto, ON to have the scan done. Ridiculous but true! I have a friend that walks at the mall in the mornings with me and he just had one done that he had to pay for himself, but chose to do it for his own piece of mind, and was fortunate enough to be able to afford the cost.

So, here I am once again doing my favorite thing, waiting...................... Waiting to hear if I'm approved. Waiting to get a date if I am approved. Waiting to develop and start a treatment plan either way, approved or not. Should I NOT be approved then I would most likely look at trying to put together a quick fundraiser to get enough funds to do one on my own, and closer to home too! There are many PET scans available in the Michigan area and I have enough contacts over there to point me in the right direction for a reputable Diagnostic Imaging clinic. 

So here's to waiting once again! Stay tuned, I'll be posting things as I get them.
Love and Hugs to everyone no matter where you are in your journey,
 Tim, xxx

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