Testicular cancer follow up treatment

[ScottRoger]

I have a two part question.

I had an orchiectomy 3 weeks ago to remove a full seminoma tumor.  Researching online I learned about surveillance and observation as a form of follow up treatment.  However, whenever I mention this to a doctor I am treated like my question is a dense one.  I know the NCCN guidelines give radiation as the standard follow up treatment to full seminoma, but shouldn't I be able to inquire about other options and have a clear, non-biased discussion about them?  

One of these doctors was a radiation oncologist I met with, who steered me heavily towards radiation but then when I mentioned observation tried to scare me away from it by telling me the CT scans give off radiation.  Seems inconsistent.  The other doctor who steered me away from observation is my urologist who, when I asked about my follow up tests, had to go look in a book to see how often they would be because he didn't know off the top of his head.  I was told by some concerned friends to meet with a testicular cancer expert to help plan my treatment but when I called one of the nation's "centers of excellence" (according to acor.org) the secretary told me the doctor would just tell me the exact same thing the radiation oncologist told me.  When I asked about discussing observation with him, she took an inpatient tone and said "The doctor is a surgeon.  He tells you whether you need surgery or not.  For full seminoma you don't need surgery.  Do you still want the appointment?"

Do I just have to do radiation because it's the standard and the doctors get annoyed when I ask about observation?  Or is there a doctor out there who is patient and willing to discuss ALL the options with me?

[geismom]

Unfortunately, Scott, I have found that oncologists rarely tell you that you do not need treatment.  Was the tumor staged?  I do believe that treatment options are dependent upon the stage of your tumor.
Do you have the pathology report?  Often times the pathologist will offer his advice on the report regarding what he considers to be the followup treatment.
Four years ago, I was able to contact Lance Armstrong's doctor personally, via e-mail.  I found his address by persistent googling.  He was kind enough to e-mail me back the very same day with his quick prognosis and advice.
You seem very medically savvy.  My suggestion to you, is to do some searching on the internet regarding your diagnosis, and include words in the search such as prognosis, etc.  You will get a bunch of hits that are papers written by people who are very interested in the subject.  Once you find a name, you can then see where that person is affiliated.  Then, you could try to see if someone at that hospital, who is familiar with that person's research, would consider seeing you.
In my personal situation, we sent samples to several top hospitals in the country. The original pathology was determined by an "expert" in the field.  The second pathology did not agree with the first.  We then went to the NIH, who agreed with the second.  Once I had the second diagnosis, I was able to locate the pathologist who specialized in this diagnosis, and he reviewed the specimen as well.  He agreed with the second two pathologies, not the first.
By persistence, and finding a study online that followed a different course than had been considered the norm, I was able to find a doctor who was more than willing to go with the more conservative route.  It wasn't easy.
Oncologists tend to be agressive rather than conservative.
I do wish you much luck in your search.  You may find a doctor who is willing to do the watch and wait approach.  I don't know what your prognosis is, only you do.
Let me put in my plug for a second opinion on the pathology of your tumor. I don't know where we would be if we had not made the effort to have a second pathologist look.  In our case, it was for our child, so there was no way I would accept the original diagnosis without a second opinion.  And, when that came back contrary, we knew that we needed to keep going.
Good luck.
Barbara