Newly diagnosed and looking for treatment advice.

@ucfron
Thanks. Sorry to hear about your test results. But better to know ahead of time than wish you'd gotten the test after experiencing the side effects. I'm still waiting to order my prostox test as both my RO and urologist are on vacation.
Best wishes on your surgery.

@quaddick it took less than a week for my Prostox test results to return and within a few weeks thereafter all was underway.

And I second the previous commendation that “Patrick Walsh’s Guide to Surviving Prostate Cancer” is a wonderful and reliable resource for all men dealing with a prostate cancer diagnosis and increasing awareness for those not yet diagnosed as well.
https://a.co/d/ddaSYi2

@ucfron
Wow! I have mentioned several times that even since I had my treatments reading about new tests and treatments.

I agree with you how that can do that from a mouth swap but that is genetics and A.I, these days. I see you go to Mayo Jacksonville also. Back in 2023 my Mayo Jax R/Os never mentioned that test so must be fairly new.

Did you ever consider going to UFHPTI in Jacksonville? It offers proton radiation versus photon at Mayo Jax. The radiation beam can be controlled not to go pass the prostate or specific area being treated. I was a patient at Mayo Jax like you and met with R/Os several times but Mayo Jax only has photon radiation now until new cancer center is built and on line which will have proton radiation.

There is a lot of discussion about low dose and high does side affects. I think your post reflects about this test confirms the concern some R/Os, urologists and PCPs have about the side affects of high dose versus low dose. My UFHPTI R/O did not like high dose. This was based on what he was seeing with his patients so was real time information. My Mayo PCP said the exact thing of what he was seeing with high dose and low dose. I think getting feedback from doctors treating patients far more real time information is important.

Good luck on your decision. I hope everything is fine with what ever you choose. I wish that test was available when I was diagnosed. I would have liked to have known that information even though my UFHPTI R/O was insistant to doing low dose versus long term based on his personal finding he was seeing with his patients.

@rbtsch1951
The book arrived this morning. Thanks for the tip.

@quaddick
Mayo Rochester urology says no differences in post treatment symptoms of proton radiation vs traditional methods, I was considering proton radiation now I am scheduled to begin SBRT.

@packman7 my people said the same thing.

@steveduke #packman7
The symptoms are the same as both are damaging other tissuses, organs, etc.

It is the degree and long term effects that is posible different. Until we get long term studies medical professionals will not have definite answers to benefit and lessor degree of damage, or secondary cancers with proton versus photon.

But you can read the scientific information on proton. It is highly controllable to stop and not continue through other tissues and organs like photon does. It is why it is used on eye, brain, and other vital organs within range of beam.

Most R/Os radiation using proton (like me) radiate past the prostate to make sure did not miss something. Thus radiation damage going happen to colon, bladder just like photon causes so symptoms side affects are the same.

I think urologist and R/O are saying the same damage is done to skin, organs, tissues, by proton as to photon when radiated. And the successful outcomes of each treating the prostate cancer is the same. But the ability to stop the proton beam progession through body past the area you want to radiate is or should I say not in dispute by any of my medical providers.

This comes from my Mayo PCP, Mayo R/O, and UFHPTI R/O doing thier own research and monitoring of patients. At UFHPTI my R/O has been doing radiation treatments on prostate for 20 years and has done thousands of them. I did do research at Mayo, Cleveland Clinic, UFHPTI, John Hopkins, WEBMD about differences between the two.

@jc76, #packman7 I list the thread not sure if you said (packman7) where you're being treated?

The nearest proton radiation to Duke where I'm bringing treated is in Charlotte. There's one planned at Duke but a few years out. So it's a moot discussion for me but of interest and I appreciate the info jc76!

@steveduke
I was a patient at Mayo Jacksonville since 2006. I had all my PSA tests done a Mayo Jack. My PCP is the one who did not like my rising PSA numbers even though I was still under normal range for PSA.

He referred me to urologist who did DME and DRE. Urologist ordered MRI/contrast. Came back suspicious. He ordered biopises using MRI/Fusion. Diagnosed with prostate cancer orgiinally intermediate risk.

Referred to R/O. R/O suggested Decipher test and bone scan. Decipher came back low risk not intermediate. Bone scan negative. Mayo Jack. could only provide photon radiation. Note: They are building a brand new cancer center that will have proton radiation.

PCP asked me to get second opinion and consider proton radiation. I went to UFHPTI to get second opinion after I sent my medical records to them. UFHPT R/O wanted a PSMA done. When it came back negative I was given their recommendations for treatments.

I chose UFHPTI for proton radiation based on information from PCP, R/Os, that proton radiation could help reduce secondary cancer risks, and daamge to other organs and tissues and can be programmed to stop at precise area and not continue through body.

I met with my Mayo PCP and we went over both consultations and we decided the UFHPTI proton radiation treatment was best for me. Any chance to reduce radiation damage and the secondary cancers that come from any type of radiation was something I thought important to me.

But we all have to make our own decisions. I was just luck I had such a outstanding PCP who did his own research of both types of radiation and could give me objective feedback of the pros and cons of both outside of the R/Os who were either proton or photon.

I will say that UFHPTI told me during my first consultation with them. We want to be clear that both forms of radiation have the same successful outcomes. The main difference is with proton we stopped the beam at precise area and does not continue out the body like photon does.

@steveduke
Mayo Rochester