Posted 12/10/2015 3:02 AM (GMT 0)
Some progress to report, at least.
Met with my surgeon (one who did the October 1st resection surgery). He's usually too busy to talk much, but I think he sensed my anxiety, and spent nearly 30 minutes with no interruptions. Even though he still feels he fixed the original obstruction, he felt my current repeating symptoms were serious enough to warrant new scans. On December 21, I will undergo my 2nd MR Endography scan of my intestines. Takes 2 hours of prep time at the scan center with the various contrasts, then nearly an hour in the MRI.
He spent a lot of time, explaining to me what he saw inside me when he had me opened. For starters, just by feel, he knew I had a lot of radiation damage from the SRT. Said that's why he's a big believer in open surgery vs. robotics, there's no replacement for the "feel" of a skilled surgeons hand. He commented on how tiny and narrow my pelvic area is, and how crammed up all my "guts" are in that space. Wasn't surprised how a bad radiation experience did so much wide spread damage. He noticed a lot of fused flesh in my pelvic area, said it was pretty bad looking.
On the negative side, he said I should expect even worsening damage in other areas to continue in the years ahead, as that is the nature of radiation. Said sometimes, the worse damage doesn't even show up until you get to the 8-10 year mark. I am six years out of radiation as of last month, and the ongoing damage, as you all know, has been bad enough.
Once he gets the scans back, he will compare to the set that was done in August (?). Said my former GI doctor missed the obvious on that scan, and couldn't understand how he didn't see what he saw. Said where the obstruction was located, it had narrowed down to 30%. No wonder I was in so much pain in that region for the year prior to the surgery. Said if he feels I need to see another GI doctor, he would like to choose a new doctor himself for me. That was fine by me.
Two hours later, I was meeting with the new dermatologist. Found out, he was a one man practice, that dealt only with dermatology issues related to cancer. He had a good understanding in general, of the 3 porocarcinoma events in my life, but never actually had a patient with it. Again, due to the extreme rarity of that cancer type. He agreed with data that I had read, I am supposedly one of only three patients in the entire world (according to medical history) with porocarcinoma on the scalp. It's usually found from the feet and works up, even rarer from the neck and above.
He took a scraping, and is going to have a special culture done, as well as a very specific type of pathology done. Prescribed me some special (and very expensive) cream that I have to apply twice a day for 2 weeks. I will have a follow up in 4 weeks. He wants to contact my oncologist from year 2000 and discuss my case with him, and with the surgeons at the time that did the extensive plastic surgery on my scalp. I like doctors that think at that level of detail.
He said with my unique histories of cancers, that it would be in my best interest to have him on my regular team. He works on call with Gibbs, where my oncologist is with, so he will be keeping my oncologist in the loop in case something develops.
In both cases today, I felt my needs and concerns were taken very seriously, and both doctors were very caring and empathetic to my cause. In my shoes, that was encouraging in itself.
Still waiting to get the appointment with the kidney specialist, as the bleeding into my Urostomy bag has become a daily (multiple times a day) event.
The whole ordeal wore me out completely, its all starting to really get inside my head, and feel I am on edge more than I realized. Pain and chronic fatigue play heavily into that formula, despite my best efforts to keep it altogether.
I see my oncologist at 1130 in the morning, already have a long written list of questions and concerns for him, in particular, the fact that my PSA has now doubled in the past 3-6 months. With all my other issues, its easy for me to forget that I am still dealing with metastatic prostate cancer.
That's it for now.