Friday, March 23, 2012

Upcoming RPLND

Before I get into it, I wanted to respond to Jack (I tried to in the comments and it was being dumb and not letting me reply for some reason):

First "what I took" during chemo.  The only thing I took aside from what my onco prescribed was Vitamin E.  Someone on the forums recommended it, and I cleared it with my Dr.  Basically I did 800 IU a day during round 1 every day, and upped it by 400 IU each round.  Honestly I can't say for sure it did anything. However, the one day I didn't take it my fingers flared up and hurt bad so who knows.

As for follow up treatment it seems like, from the NCCN guidelines, that the first "Stage" of treatment is pretty straight forward at least in my case.  So I felt comfortable with a local onco as long as they followed NCCN and I did shoot Dr. E an email and he recommended the same.  After that though there were many branching ways I could move forward and for those decisions I really wanted to get the top people ie Indiana or Sloan involved.  Since I decided to go RPLND (Wasn't much choice per Dr. E to be honest) I wanted Dr. Foster so that's who I got luckily!

Now for all you out there wondering, YES I am getting an RPLND.  I have it scheduled for next month in Indiana with Dr. Foster.  Dr. Einhorn didn't really give me much option, with 2 nodes at ~4.5cm unchanged through all 3 rounds of chemo he said they need to come out.  The could just be scar tissue, but they could also be teratoma or worse and the RPLND is the only way to know.  While I am not looking forward to the surgery, or its recovery, or the ramifications of complications from it I do have one of if not THE top surgeon which makes me feel much better. The statistics for "curative" treatment from a 3xBEP chemo followed by an RPLND also make me very hopeful.  So fingers crossed for teratoma or necrotic tissue only (just the latter would be awesome too).

I do plan to post my experience with the RPLND and Indiana/the trip etc at some point.  If I don't' feel up to it during/after maybe after I have recovered a bit.  I am hoping for the best, but still apprehensive of the path ahead. All I can do is tackle each thing that comes before me and try and make the best of it.... and that's what I plan to do!  I will say its hard to believe that its only been less than 4 months since I found out I had cancer, so much has happen and I have gone through so many things... Hopefully this RPLND, while scary and a big thing, can be the final chapter in the story for me and I can move on.

Thursday, March 1, 2012

POST-Chemo Tests

Mixed news of sorts from the PET/CT.  My tumors haven't shrunk at all, nor have they grown.  My brain/lungs/kidneys etc etc are all still clear, basically the scan looked the same as before markers are all in the normal range still but my two larger ones 4.2&4.3cm ones are still the same size.  Dr said they are either teratoma (Though he suspects they would ahve grown a bit over the ~3month course of chemo... ) or just scar tissue left over.  They have no way of knowing so.. urgh RPLND is my next step.

Setting up to meet with some people at MD Anderson, sent Einhorn and email, and so it all begins again.  They also said that post-RPLD if they find anything at all besides scar tissue i will probably get 1-2 rounds of VIP. Fun Fun, just when you think you are done they keep pulling you back in..

UPDATE:  So I have been talking with Dr Einhorn and Dr Foster and Indiana University.  Its one of the "center's of excellence" for Testicular Cancer treatment.  Some places I was reading even list Dr Foster as the "world leading expert in testicular cancer related surgical procedures".  I am going to try and work out with my insurance company and my work to let me take off (probably have to burn vacation days for this one since its a lengthy hospital stay in Indiana).  But, if I am going to have this surgery that scares the crap out of me, I might as well have it done by the BEST!

I will let you all know how it turns out, otherwise Dr Einhorn recommended a surgeon here at MD Anderson we could see if I couldn't make the trip up there.  There are so many things that can go wrong, and your chances of recovery and relapse are directly related to how good your surgeon is I really want to get the best I can.  Not sure how I will pay for all of it, plan travel, hotels, co-pay (or if its not covered AAAaaaah) but we are going to try!