Medical Oncologist Referral

I can't give too much advice, but you should understand going almost anywhere that they almost all use a tumor board. Meaning, no one doctor makes decisions and they meet together each week and decide cases together (surgeon, radiation onc, medical onc). So a medical oncologist who is part of a team will say the same thing as a member of the team and sounds like you want somebody totally outside to help. Yes it is hard to get to decisions and understanding, PCRI medical oncologist Mark Scholz, MD on Youtube is outstanding, your best bet on the help understanding portion. Going over data independently is a harder find and why most of us go to many places as they will each have a separate tumor board at least, and so on. So make a lot of appointments, listen to a lot of YouTubes from PCRI, and it helps, but finding someone to really help personally and go over the data is hard. Also much about treatments is all this guidelines stuff, and while guidelines in the past truly helped docs, that may not always be the case today. They can be too rule based, and as we are all individuals understand these guidelines can make it hard to get good views sometimes, other times it is simple and does follow simple paths and simple guideline following is helpful.

@bjroc

So what is the Medical Oncologist’s role in the tumor board discussion……do they validate ( or invalidae) that both RP or RT are viable options……

@broderbund1

They may take time to go over more history, outside imaging or reports, look at other health history or problems, or look more into ADT or no-ADT (plus administer), but they will be telling the tumor board before you. I don't really like the setup myself, you feel you want that person who is personally helping but they will almost always be part of a board, and you come second to the board. You know medicine and my family is huge, but almost all doctors hate the way it has become so legal and dictatorial, insurance driven, and leaving people out. Hopefully you find one that helps personally, they are out there. I found that hard to find in my area, but maybe not everywhere.

This can be a tough decision. You’ll have to find a decision process that works for you. This was mine.

I fully understood my urologist’s recommendation, as well as my radiation oncologist’s recommendation. Either way would work; the only question remaining was what did I want?

An understanding I gained from them was that I could have both successful treatment and maintain my quality of life; those were not mutually exclusive. I told my physicians early-on that quality-of-life and successful treatment were equal priority for me.

The way I pushed through the agony of the decision was through introspection….what did I want out of this?

I wanted to balance quality of life with survival (of course!) along with the possibility of multiple treatment options in the future if needed. This was about utilizing the best treatment techniques to get the best outcome while still surviving and maintaining my quality of life. (Every medical-related decision I ever made I made the same way; why not this?)

So, I put together a spreadsheet and listed across all treatment options. Then listed down all possible & possibilities (%) of side-effects from each type of treatment, and gave each one a score. We then took that list, and narrowed it down based on the preventions available related to each individual type of treatment.

I then “scored” the quality of life priorities that came out of my introspection, and compared that final score result with the treatment options score result.

The score that was closest matching was my 1st choice, 2nd closest was my 2nd choice, etc. Surgery ranked last —> then SBRT —> then IMRT —> finally Proton ranked at the top.

I only brought a medical oncologist on-board once I had made my decision for proton radiation.

Again, you’ll have to find a decision process that works for you.

Which findings are making your treatment decision difficult?

There is a problem with getting access to a medical oncologist that specializes in prostate cancer. You have a comparatively low risk case and they frequently don’t want to work with people that are not metastatic.

I know at UCSF people have been turned down by the GU oncologist because they did not have metastasis. The demand for their time is very high, so they reserve it for the Patients that have more severe cases. I was at a meeting with UCSF 2 weeks ago and asked one of the GU oncologist about this and he said that if your radiologist or oncologist referred you to him, he would work with you, but otherwise they don’t have time for cases that aren’t more severe,

MSK and MDA Are good places to go for great treatment. You are at the right places you need to ask your doctors if they can recommend you to a oncologist for advice.

FWIW, the team at MDA determined that radiation was not an option for me because it would likely worsen my existing urinary issues (frequency, weak stream). Although I was really hoping they would recommend MRI-guided short course radiation, it was helpful to get a definitive answer for my case. As @bjroc described, this was all done behind-the-scenes before I met with the surgeon (Dr. Ward), who relayed the message.

Have you taken a PROSTOX or similar test to see if you might be more succeptible to adverse side effects from short and/or long course radiation?