Would you recommend proton therapy vs surgical removal of prostate?

@jc76 I went to the UFHPTI website. I looked all over (Pca link, site map) and could not find a place to request the packet. Do you mind sharing the link?

I opted for surgery. Urologist indicated that the prostate turns to a raisin with radiation and while removal is possible it involves just cutting everything out. No opportunity to spare any nerves. Thats probably a pretty simplistic answer. Ended up with ED and incontinence.

@seekingclarity
You are getting medical information from two different urologists. Ask your questions to them. They are the only ones who have your medical history and have examined you.

Medical professionals are your first line of getting guidance and if you still have questions asked them. Many of us will get second opinions from medical professionals to help you decide on what is best for you. Many of us feel our mental health is important and that helps guides us on decision like active surveillance, RP, or radiation therapies. You have two different urologists who I would flood them with your questions first.

Was the Decipher test mentioned to you? It is a genetic test to more accurately determine the risk level of your PC. My Decipher was same as yours 3+4=7 and given to me as intermediate risk. I had the Decipher and lowered to low risk.

Based on my Decipher both Mayo Jacksonville and UFHPTI (my second opinion) recommended radiation but no ADT.

You have been diagnosed with cancer. Active surveillance is something to consider but that should be your decision working with your medical doctors, and second opinions, and other test available to help guide you. Your medical doctors (present and if you do more opinions) have you complete medical history and have examined you.

There are some urologist that will do surgery on a patient that has gone through radiation prior. My urologist said most will not try as is real difficult for surgeon because of the condition the radiation leaves the prostate. I don't know anyone on MC Connect that posted doing this. However my Mayo urologist confirmed there are some urologist that have experience and expertise to do RP after radiation but are rare.

Proton radiation is what I had. I can give you my personal experience with it. May I suggest you contacting UFHPTI and request a information handout. It is free and no pressure to go to them. The package will include research on all PC treatment plans, two books on prostate cancer (one is Walsh book) and a complete packet of the program at UFHPTI. It contains a ton of research on PC, diagnosis and treatment options that you can read at leisure.

The cyperknife I do not have personal experience so will no try to comment on something I do not have personal experience with. I did have proton radiation as both my PCP and I liked the added benefit of the beam dose level being controlled going in, releasing is full dose at specific spot and does not continue through body like photon.

You need to get as much information from your medical doctors with all the questions you can think of. Then do your own research and consider additional diagnostic test, and second opinions. Passing on to you what I did, why, and my personal experience with PC as I did just what I posted to you.

Before even considering treatment, a 3+4 may mean you don’t need to do anything, You may just need active surveillance.

Do you know what percentage of four was in the one 3+4? There’s a lot of discussion of the over treatment of people that have very mild cases. Doctor like to treat them because it’s profitable. That may not be the case at all, however. You want to know what your best options are and it could be wairing.

A couple of 3+3 means nothing. If the 3+4 only had 5% or 10% of four, then you could go on active surveillance and not do anything right away. Find out the answer to that and we can give you some places to look for more information.

Cyberknife (SBRT) Radiation is very effective especially with MRI guidance. Proton radiation has an equivalent to that. It has a slightly lower chance of causing future problems. You are pretty young, so getting proton radiation in five sessions is similar to CyberKnife and could give you many years of remission. Of course, the only way to know what your Gleeson score really is is to take out the prostate, But that causes some people erectile dysfunction and urinary problems.. Radiation will give you a much higher chance of having the ability to get an erection right away.

You got cancer, awfully young and that could be due to a genetic problem. You could get genetic testing to find out if it could be a factor. Does anybody else in your family have cancer? You can get it here for free, takes 2 to 3 weeks to get the results and a genetic counselor will call you. They will send you a kit that you return in the mail. You have to live in the USA to get this test for free. Don’t pick the option to have your doctor involved or they won’t send you the kit until they talk to your doctor.

Prostatecancerpromise.org

I got PC at 62 and it was due to a genetic problem. I have BRCA2 and it has come back four times. I’m still alive 16 years later, but I’m waiting for the next reoccurrence.

A long response that answers all your questions —>

I’m AA; I was 65y/o when I was diagnosed with localized, 3+4=7, PSA = 7.976.
I spent many months evaluating all treatment options. My urologist (a surgeon) provided me referrals for focal therapy (cryo, HIFU, ablation), brachytherapy (LDR/HDR), SBRT (Cyberknife; Trubeam), IMRT & Proton.

With success rates comparing surgery with radiation being statistically equivalent no matter what treatment chosen (https://www.nejm.org/doi/full/10.1056/NEJMoa2214122), it all came down to side-effects and quality-of-life (or as that paper concludes, “… the choice of therapy involves weighing trade-offs between benefits and harms associated with treatments for localized prostate cancer.”).

For me, I wanted to balance survival (of course!) with quality-of-life, along with the possibility of treatment in the future if needed (as medical treatments progress). I wanted the least chance of ED, GU, GI, bowel or other similar complications - quality-of-life following treatment was a priority.

After spending much time getting referrals and evaluating treatment options, I ranked them as:
#1. Proton
#2. IMRT
#3. SBRT
#4. surgery

I had 28 sessions of proton radiation during April-May 2021. Treatments were relatively uneventful. I only had 1 day of adverse side-effects. (My wife later told me that if she hadn’t known I was undergoing radiation treatments, she wouldn’t have realized it from any change in me.)

The idea that “if you choose radiation first, you cannot have surgery later” has some truth to it, but is old-school and doesn’t consider modern treatment techniques. With radiation, the DNA in healthy prostate cells get damaged just as do the ones in cancerous prostate cells. But healthy prostate cells have repair mechanisms that can sometimes repair the damage (though not always). Cancerous prostate cancer cells usually can’t repair the DNA damage. What’s left is a “healthy” prostate, 35%-50% smaller than it was, but damaged enough that it makes salvage prostatectomy challenging (though not impossible).

However, if there is local recurrence after initial radiation, choice of treatment would depend on the nature of the recurrence; there are other options (other than surgery) - focal therapy (e.g., cryo), brachytherapy, SBRT, and yes even re-radiation in some cases. Surgery would still be the distant last choice. So, I wouldn’t let the old-school “no options if recurrence after radiation” philosophy change my initial treatment decision.

About PSA testing —> With the current state of medicine, PSA testing (or PSE testing) is the only (& least expensive) test there is for early-detection of prostate cancer. However….. Remember that a PSA test is not a cancer test. The PSA number itself is similar to a “check engine” light in a car; it indicates that something may be wrong, and further checks should be made “under the hood.” Might be as simple as a UTI; might be BPH; might be more serious, such as cancer. Just need to have further checks. No need to panic, or rush to a quick treatment decision, or get overly concerned.

Yes, it is possible that someone could have the “seeds” of prostate cancer for some time, but too small to be detected. In my case, I was on active surveillance for 9 years (having been initially diagnosed in 2012 at 56y), before the prostate cancer which was initially low-grade became intermediate grade.

Note that there are only 47 active proton centers in the U.S. (The one at the University of Cincinnati was just a 40-minute drive for me.). Is there a proton center near you? —> https://www.proton-therapy.org/map/

If you have any more questions, feel free to ask.