Andy

I Met the Radiology Oncologist

Today was my meeting with radiology oncologist Dr. Song. We reached Hopkins at 2:30 and left at about 5:30. Once I got back to the room we talked at length with and I was examined by a resident with a couple of years left in his training. While I appear to be clean of the seminoma as far as blood testing and CT scanning can determine, my case is atypical due to the beta HCG level in my first blood test. This guy led us to believe that I would in fact not be getting radiation and would instead undergo chemotherapy, but he was overridden by Dr. Song 45 minutes later. I will be getting radiation, 4 weeks worth, 5 days a week, starting probably in 2 and a half or 3 weeks.

We discussed the possibility of having it done closer to home, perhaps at the Tate Center up in the North Arundel Hospital complex, but the Hopkins folks weren't really able to help us much in that regard in terms of a recommendation or with the transfer of information. I may have to go through this all over again up there if I want to avoid the 45 minute or hour travel time to Hopkins every day for a month. We were given a folder full of information though and I can at least check and see if they have the same type of equipment, which seems to me the most crucial element in something like this.

Doctors at every step have also highly recommended that I go to a fertility doc for testing and also to have sperm banked in case the radiation treatments render me sterile. I was not given any kind of numbers regarding the chances of this occurring, but obviously this isn't something to be overlooked regardless of the odds. I plan to get this done as well, but until we know if we're shifting to a new facility or not, I won't know just where I'll be going. The annoying thing is that if I wind up at another instituation, the Hopkins people won't really be involved anymore. That seems sort of unecessary to me, but that's the way it is.

I also learned that I'm now considered at high risk for getting this again on the other side, with maybe a 1 in 20 chance of that happening. I got this info from the resident though, and he may have been a little alarmist about the numbers. I was told to perform a monthly self-exam so as to catch anything like these as early as possible. I'm pretty sure the surgical procedure would be drastically different were this to occur, so I'm just hoping I will never have to worry about that. I had to make a point of asking how to do the self-exam or I'd have no more ability to do that now than I ever did. This makes me wonder what else I'm supposed to be checking that never gets mentioned, despite my significantly higher rate of doctor's appointments than your average citizen. Do yourselves a favor and ask your doctors about what you should be checking. You may never know otherwise.

Dr. Song's nurse was especially helpful and friendly. The folks in the oncology center were slightly more disposed to take seriously my CFS and NMH problems as well, though they really had no idea how to help me with regards to that information. I asked the nurse to convey to the appropriate people my concerns over the exam room chairs, and I feel confident she will do so. She understood what I was saying, and hopefully she and I can help other patients down the road with this little bit of "proactivity", if that is in fact a word.

The side effects brought to my attention were the possibilities for nausea (diarrhea, etc. included), a probability of fatigue, and an increased risk for other cancers down the road ranging from a 30% to 100% increase compared to a non-radiated individual. I think this might sound worse than it is considering the risks of things that aren't commonly statistically labeled in this way, like driving recklessly or eating an imbalanced diet. On the plus side, I will be checked frequently for all sorts of things from here on out, so that might actually improve my odds over the guy standing next to me in some ways. The con of course is that all of this is very tiring for me.

One thing I should note is how much my parents are helping me do all of this. They're making all the phone calls, keeping all of the paperwork, filling out forms, taking notes, driving me all over, and representing me as needed on the phone and in person when necessary. Without them I would be hard pressed to have even had the surgery by now, let alone try to move my radiation treatment to another institution.

So, there you go. 4 weeks of treatment for 5 days a week barring an about-face if I have to get a second assessment done in a different location. If any of you have info that can help me out I am happy to talk with you. Actually, I'm happy to talk to you if you don't have any info as well, so feel free to give me a ring, add a comment, or send an email. My email address is available at the bottom of every page on this site.