Questions about Active Surveillance as a treatment option

From what I've read, Gleason 3+4 is borderline — there are some oncologists who consider it low-grade. You might want to get germline genetic testing as well (which is different than Decipher): if it comes in clear of mutations like BRCA1 and BRCA2, and your oncologist is suggesting it, I'd think active surveillance would be a reasonable choice.

They used to overtreat Gleason 3+4 by jumping to surgery and/or ADT by default in every case, and that's one of the reasons the powers that be stopped routine PSA screening (which was foolish; if the problem is overtreating, then stop overtreating, not screening).

Best of luck, whatever you decide.

@mauk
What are your doctors recommending? There are so many factors that affect decisions like this. Botton line do what is best for you. How is your mental health? Do you have other medical or mental conditions? What medications are you on? What is your family support and care giving? These are things your medical care givers know (or should know) versus us on MCC.

MCC is great and wish I had known about it when I was diagnosed back in January 2023. I learned so much from the experience of others and what they went through during their diagnosis and treatments.

We on MCC can you our experiences with prostate cancer and what we did and why we did this or that and hopefully provide inspirations. When prostate cancer is caught early, has not spread outside prostate, it has a very high success rate of treatments.

I had the same Gleason score as you. My original treatment plan was SBRT photon radiation and hormone treatments at Mayo Jacksonville. My R/O suggested a Decipher test and bone scan. My Decipher came back low risk and my R/O changed my treatment to radiation only. My Bone scan came back negative.

My Mayo PCP who suggested I get a second opinion at UFHTPI (proton radiation) which are one of the most expereinced and outstanding medical facilities that do proton radiation treatments. I was not on MCC at that time (January 2023) and got a seconf opinion at UFHPTI. They had me transfer my medical information (copy) before my second opionin consultation. They agreed with the Mayo diagnosis but wanted to do another test called PSMA. It came back negative.

Before I had my second opinion UFHPTI mailed me an information packed full of research on prostate cancer and treatments. It also included two books you hear about all the time one of them was the Walsh book.

After my second opinion I had another consultation with my Mayo PCP. We discussed the pros and cons of each treatment and side affects. We as a team both decided on UFHPTI and I had 30 rounds of proton radiation. I had markers and space/oar done prior to treatments. Minor side affects and my PSA went from 3.75 at time of treatments to .22 at the last time I had it tested. Coming up on my 2 year after treatment testing.

Surgery comes with so many different side affects and much more trauma on the body than radiation. Those on MCC that had the RP surgery would be more helpful with their experience with surgery and pros and cons of it. Hormone therapy also comes with known common serious side affects.

If you are having doubts about what to do and after you get your original recommendations you can always do another opinion to help you. You can also research the pros and cons of treatments on major medical sites like Mayo, Cleveland Clinic, John Hopkins, WEBMD.

UFHPTI offers a free information packet that they will fed ex to you free. It containes tons of research, pros and cons of treatments, and two free books (one is Walsh book). No pressure to come there. UFHPTI is part of University of Florida Health and all employees are state salaried employees. Their complex has 5 gantries and just underwent total upgrade to latest proton radiation equipment.

@mauk
I had a 3+4 as well. I had the Decipher test (from the biopsy material) to test aggressiveness, which doctors do use to decide treatment (as @jc76 said). I took a MyRisk genetic test for both myself, my sons and daughter (brca genes for her). It was gene negative for me.

One of the five radiation oncologists I spoke with suggested active surveillance as one choice. I did not feel that any doctor could accurately predict the growth of a tumor inside my body over a 3 month period so I chose to be treated with a radiation machine that had a built in MRI (vs fused images). I did not want to potentially deal with androgen deprivation therapy or other drugs. My goal was cure, if possible, with treatment, minimize side effects and maximize quality of life. So far so good. I was treated in February of 2023 with 5 doses.

Also diagnosed with 3+4 and a Decipher Score 0.22 in October 2023 (see my profile for details).

After thorough research, I decided upon Active Surveillance.

Obtained my ninth, post diagnosis PSA level last week (5.76), which remains 25% lower than my pre diagnosis PSA level (7.8).

My version of AS is definitely aggressive and not all would be willing or even able to adopt my lifestyle changes…it is a program designed for one person….but it’s working for me.

Continue your research and know you have plenty of time before making any decision.

Ultimately, your decision will come down to what you are willing to live with in terms of future quality of life, as there are no guarantees of your future condition, no matter what treatment or active surveillance program you decide to adopt.

All the best!

I agree with everyone's "frame of mind". I opted for surgery. Dr was recommending AS. At 68 with my fathers history of AS I felt that I was not mentally capable of dealing with AS. My father had monitored his and then became to old and other conditions to treat. AS to me was just waiting on it to get worse. The good thing you are asking questions now from a very educated group. I ended up hopefully cancer free. Clean PET scan and 5 years wtih < .01 PSA . However, I have ED and incontinence issues. AS or some other minor treatment might have left me with no issues. I would say additional testing to determine the probable aggressiveness is a good idea.

Have you considered any of the focal therapies. I did Tulsa Pro for Gleason 7 (4+3) last July. Procedure was a breeze for me and early results look excellent. Prostate cancer is a little odd as there are so many different approaches to deal with it. It can be overwhelming. You just have to look at the options and make the choice that’s right for you. And then be confident that you made the right choice for you at that point in time.

As I've mentioned in other threads, in many ways a borderline prostate-cancer diagnosis seems much harder to deal with than an advanced one. If you have Gleason 9 and/or metastases, you don't have to waste much time thinking about what to do: the answer is more-or-less "everything possible, as soon as possible."

But with 3+4, you have the whole range of options available, and have to decide how to trade off the risk of the cancer progressing under active surveillance against the other long-term health risks from hormone therapy, surgery, and/or radiation. That uncertainty (there's no way to know you've made the "right" choice) must generate a lot of stress.

When I was first diagnosed with 3 + 4 my urologist decided active surveillance was the best path. Then my Decipher test shows 0.68, aggressive, and he changed that recommendation to treatment (RARP in my case). When they removed it and got the pathology back, it was worse than the biopsy indicated and my stage was upgraded as a result.

This is to say that AS has its place but a biopsy is only giving you a sample, not the whole picture. Had I bucked the recommendation (which was confirmed by 8 other doctors by the way) then I'd probably be fine until I wasn't - and then it could be 4 + 4 or worse. In hindsight I'm glad I had it removed.

You mentioned the 3+4, but you don’t mention how many 3+4 cores there were and how much of a percentage Of those cores actually had cancer. Were there also 3+3 cores? The more positive course, the less likely active surveillances is to be picked. Of course you are decipher score says take it easy and don’t worry about it.

That information is a major factor and deciding whether or not you go on active surveillance.

Here is a video by Dr. Epstein discussing who is the best patient for active surveillance. He is considered one of the top doctors to analyze biopsies.

I posted something similar in another thread but it seems relevant here. My team said that in most cases, the type of treatment is mainly based on Gleason grade and spread. But for 3+4, there are secondary factor such as genetics, family history, size of lesion, location of lesion, volume of grade 4, cribriform, intraductal, perineural invasion, and number of positive cores that should be considered for deciding on active surveillance or treatment. For me as a 3+4, having several of those factors led me to decide treatment over surveillance. RARP is scheduled for July 18.