Recent Diagnosis; Looking into Treatment Options and Experiences

A 4+5 Gleason score means that the cancer is very aggressive. The fact that the PET scan showed no spread is really good news, however. I know people with Gleason nine that have lived 20 or 30 years after treatment, That is probably because their cancer went dormant, That doesn’t always happen, I know many people with Gleason nine that have had multiple reoccurrences with metastasis in bones and tissue.

Having a prostatectomy in the mid 50s will mean that he has a real problem getting an erection, If it will work at all, And there’s a possibility of being incontinent for a while after the surgery. In my case, I had none after having the surgery at 62 but many people have it for quite a while.

You want to ask the doctor if when they do surgery, they can they spare the nerves. That will make this possibility of getting an erection much higher.

Because he is a Gleason nine it is very likely that they would want him to go on ADT. That reduces the testosterone to near zero and causes a lot of side effects. One of the main ones is that sex is no longer really thought about or desired, and getting an erection can become very difficult even with the nerves available. With ADT it would be a good idea to also go on an ARPI. They usually like to go with Zytiga first. It has a lot of side effects, but it is very effective. If you start with that, you can move onto the other drugs when it stops working. One benefit of going on an ARPI when you are on ADT is that it can extend the amount of time it takes to become castrate resistant. Once you become castrate resistant, the median survival is two years. I became castrate resistant six years ago, so obviously it doesn’t affect everybody the same.

All of these side effects can occur as a result of taking ADT. Not everyone gets all of the side effects, almost everyone gets a few of them.

Hot flashes
Fatigue
Muscle deterioration
Bone weakening
Brain fog
Depression
Weight gain
Difficulty in breathing

Radiation is just as effective as surgery in the long-term, and usually doesn’t affect the ability to get an erection for a while. With a Gleason nine surgery may be more beneficial. Surgery would be better because if the cancer reoccurs, which is highly likely with a Gleason nine, you can have radiation to the prostate bed and areas around it. If you have radiation first, that cannot be done. If metastasis show up in other parts of the body, you can radiate those with SBRT radiation, Something that is commonly done.

Someone with a Gleason nine would not be a subject for focal therapy.

I had surgery at 62. Four days after surgery, I went to three clients offices and worked on their computer problems. Four days after that, I went back to work full-time. I had a catheter in that Was attached to a Bag on my leg. I can go into Bathrooms and empty it if it filled up. I really only needed a Tylenol for the pain.

Some people have more extensive needs after surgery and don’t recover as quickly.

3 1/2 years after surgery my cancer came back and I had salvage radiation. That lasted 2 1/2 years before it came back again and I had to go on ADT full-time. I was ar Gleason 4+3. My cancer case came back two more times and now 16 years later I am on Nubeqa And have been undetectable for 24 months. I do have BRCA2 a genetic problem that prevents my system from correcting DNA errors, That’s why my cancer keeps coming back. If I had been a Gleason nine, I would probably not be around today Because of the genetic problem.

This information will usually be useful when it comes to talking to your doctor. I’m not trying to give medical advice. I’m trying to give you information so that you are more informed when you speak to the doctor.

In your post you mention "4 of 5 on the aggressive grade scale", but that's a bit ambiguous. Do you mean he was 4+5=9, or do you mean he was something like 3+4=7? Big difference between those two. If it was 4+5=9, then it's clearly an aggressive cancer. But if it was 3+4=7, then you might want to have the biopsy samples subjected to a decipher test to see how aggressive the cancer is as the degree of aggressiveness might seriously impact treatment options. That said, my best piece of advice is go to a recognized "cancer center of excellence" if that's an option available to you. Google it and you'll easily find one. I did (Mayo Phoenix) and I was very happy I did. I felt the advice and care was outstanding. Also, I'd recommend Dr. Patrick Walsh's Guide to Surviving Prostate Cancer Paperback – October 3, 2023. It's on Amazon and it's the best $20 I ever spent. It really helped educate me on some key points in my decision making. I have no idea which treatment option would be best for your husband. Expertise and experience matter when treating prostate cancer. You might want to consider getting a second opinion from a CCOE if you're ultimately unsure of how to proceed since you rarely have to travel for a consult (just send test results). Best wishes.

Lots of questions to help with options:

When you say, “MRI that was clear” what does that mean?
> Were there any PIRADS scores assigned?
> Did he get a 2nd opinion on his MRI scan?

When you say, “PSA was still high” what was his PSA?

When you say he had a “4 of 5 on the aggressive grade scale,” do you mean a Gleason 8?
> if so, is that Gleason 8 a 3+5, 4+4, or a 5+3? (All are considered high-risk.)

With the PSMA PET scan, what were the SUVmax scores assigned to any lesions anywhere (including in the prostate)?

He won’t likely qualify for Lutetium-177 (Pluvicto) until he’s exhausted most other options.

Focal therapy probably isn’t recommended for advanced disease.

You say that “none of the scans he's done shows exactly where the cancer is.” But, the biopsy did show where (at least) some were.

Sexual function is always a concern.
> is he planning to have more kids?
> does he have ED issues now?

All of those answers will guide next steps.
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One of the understandings I had with my doctors was that quality-of-life and successful treatment were equal priority for me. That set the basis for us working together and agreeing on a treatment plan.

So, 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.”).

At 65y and healthy, I decided on 28 sessions of proton beam radiation (during April-May 2021), with 6 months of Eligard, and SpaceOAR Vue.

The proton radiation treatments were relatively uneventful. There was no “healing” required. I’m taking no medications.

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. And the short amount of time that I was gone each day for treatment were no different than any other time when I simply left to go shopping or to the gym.

As for the hormone therapy side-effects, they were greatly minimized by following a rigorous resistance-training program:
> https://journals.lww.com/acsm-msse/fulltext/2023/04000/resistance_exercise_training_increases_muscle_mass.2.aspx

I had a psa of 10.2 and 3+4 Gleason.69 at the time. I looked at all options and chose a specific radiation machine with built in mri. There are only two, the Mridian and Elekta Unity. How much Radiation exposure to healthy tissue occurs is an important issue for me so the built-in Mri, I felt, would impact my quality of life and side effects. The studies back this up. What the doctor could see the doctor could treat, in real time versus fused images. The margins that are used are smaller with the MRI machines so there is less exposure. The margins for other types of radiation expose more healthy tissue and I was not comfortable with that ( 2 mm margins for the built-in MRI machines versus 3 to 5 mm for most other forms of radiation).

I finished my treatment in February 2023 and have had little or no side effects. I had slight urination restriction after the third of my fifth treatment(Flomax helped overnight) but other than that, nothing to write home about. I would make that choice again. I had no androgen deprivation therapy (adt). My last psa test a few months ago was .65.

One last note: there have been a lot of successes regardless of the choices made by patients on this website. I too would also suggest a second opinion. I had opinions from six Radiation oncologists. All were either trained or from a center of excellence. You are right it is a lot to process, but if you keep coming back and asking questions, there are many people here that are more than willing to drill down for you.

As others mentions a clarification on the Gleason score of the biopsy samples would help us all direct you a bit better. We need these funny looking numbers like 3+4 or 4+3 or 4+4 or 4+5 or what does the biopsy report say (log into the medical portal and print it out for yourself)? It would help us let you know some things.