
Ross commented on How I as a urologist made my “Decision.”
As I work my way through the treatment decision, I find myself gravitating to either Proton Radiation Treatment or HIFU – high frequency focused ultrasound but I am surprised that you make no mention of either of these options.
My post on HIFU The lady at the HIFU headquarters in North Carolina, Jenny (used to be Hall) is great and I bet she’d send you a bunch of info on this. I plan to take the course in the Bahamas this year sometime.
My deal is the decision making process i.e. getting to a decision so….
- Is you fer or agin surgery…this is the first big decision
- So for Ross that decision has been done and that’s a great start…
- Now to narrow things down a bit…
- Is you fer or agin radiation (some folks are afraid of radiation and surgery)
- If you want radiation then there is traditional external beam, seeds, high dose, and proton
- The reason I don’t get into that is to me a radiation type decision maker will be referred to a radiation therapist for the fine points of each
- This is huge and important to Ross….get your radiation oncologist to render his opinion and ask hard questions
- In Gainesville, Ga and for that matter Atlanta, Ga we have no Proton machine so that patient has to feel that the benefits over tradional methods available almost everywhere exceed cost and time to get to the six or so centers in the U.S.
- My radiation guy when asked by me if Proton was better…he balked. He said cure being better had not been proved and that it was very expensive.
- From what I’ve read the side effects of Proton are less…don’t for the prostatic urethra though…it still gets hit.
- Something to think about if you are a cure only type decision maker….Why do the proton folks only treat the favorable pathology patients? Hmmmmmmmm?
- HIFU is a non surgical treatment and appeals to the favorable pathology person who doesn’t want the side effects of surgery or radiation…he is of a cryosurgery type mindset…it is not available in the US as it is not FDA approved and is very expensive…around $20,ooo.
So…when I update my book maybe there will be more on Proton,(it really is not accessible to most patients currently) and HIFU and the Nanoknife. All of these are patients who have favorable pathology and want to get treated but limit their downside risk of impotence and voiding issues.
Now that is the decision. What is most important to you? And here is the question….a biopsy samples 12 small cores from the prostate. Maybe less than 1% of the volume of the prostate. You path report comes back favorable….low volume and low Gleason’s. You decide to have Proton because of your concern about side effects and your favorable path on biopsy.
What if? Just what if? Your path on biopsy did not tell the whole story? You have elements of Gleason’s 7 and because the biopsy did not sample an area near the base of your gland or the anterior portion you have more volume of disease than the biopsy implied. You choose Proton or HIFU based on the wrong data. What do you think about that? How will you feel a few years from now if your PSA begins to rise?
Not saying it will. Not telling what to do. I’m just saying…..
When I did my PhD dissertation 4 years ago I contacted Loma Linda with regardds to Proton beam radiation for prostate cancer. They were most helpful and provided me with their long term survival rates which were excellent. The problem was they did not provide me with any data on erectile function, immediately after the procedure and up to 5 years after the procedure. This was disappointing as all the men were estatic about how short the ‘down time was.’ no side effects BUT it became apparent that erectile function was or became a problem. My sample size with regards to Proton beam treatment was too small to draw any firm conclusions. As this side of the equation is extremely important to many men this lack of statistical information was disappointing.
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Removal vs radiation. I chose removal. Why not get it out if you have the chance? I researched it all. I’m two months past surgery. No way would I have done it differently. I do not like the damage the radiation does down there. (I had the Robotic surgery)
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