Treatment options

Sorry you had to join our group.

My Gleason Score was same as yours. You mentioned PET scan showed in lymph node. Find out exactly what he/she said as important to know if PC is outside of prostate gland. Such a difference if has moved outside of prostate.

Radiation is also another treatment along with hormone treatments. You are 56 I was 76 when I was diagnosed. That is 20 years diffence and what is important for you at 56 will be different that those of us in our 70s. So be cognizant of that. It is why decision need to be what is best for you not what was best or what others did.

Also consider getting second opinion. It really helps you make decisions hearing two opinions from medical experts of PC. Discuss the pros and cons of all treatments with them and the side affects of each. It is important to get as much information you can from your medical doctors. And again this is your cancer and your body so make your decision on what you and your doctors feel is best for you.

navigating, with jc76, it is important to have consultation with a Radiological Oncologist. I keep recommending this UCLA video because of the Amir Kishan https://www.youtube.com/watch. But also because I'm partial to the five fraction treatment. It is MRI guided so that if the prostate moves, as it does during treatment, the machine stops It will not deliver radiation to unintended parts of the prostate minimizing long term effects.
You might ask for a Decipher test. It tests the genetic mutations in the tumor itself and will give you a better idea of whether ADT would be a good option for you. Not a fun part of the treatment, but it can really shrink the tumor.
Find out the SUV (the standard uptake value) on the node. They can radiate that too, but if it is less than two, they probably won't.
Sorry you are joining this group, but glad you found them. The gentlemen on this site are so good.

Sound comments above. I will add one thing. "PET scan results aren't posted for me to see ..." Why not?

I demand a hard or digital copy of whatever test result reports were/are completed. A complete copy, not a summary or abstract. My care team knows this and has hard copies ready at my visits. I couldn't make sound decisions if I'm not looking at the same information my providers are. Nor could I ask questions about them if I couldn't see them. And the gobbledygook and legalese in them provides for endless hours of research further enhancing my knowledge and decision making.

As stated above, so sorry you had to find your way here. Best wishes. Hang in there, you got this.

Because of the nature of prostate cancer, no travel is usually necessary to get a second opinion. Rather, you just send your test results. Consequently, (assuming it's an option for you) it's fairly straightforward to get a second and third opinion from an NCI recognized cancer center of excellence (CCOE). That can be helpful when trying to decide which primary treatment path is best indicated for your individual case. Surgery, radiation, ablation, active surveillance; they all have their place. Much of the decision depends on the medical details of one's case. Plus prostate cancer is one disease where (again, if it's an option) making the effort to find the most expert and experienced doctors can improve the outcome. At age 70 (for several reasons specific to my case) I chose surgery and traveled to another state to have it done at a CCOE by a very experienced and highly regarded surgeon. Now at 16 months later, I have no incontinence and no ED. While I personally believe the technical expertise of my doctor was crucial to that outcome, I also think plain old good luck played a role as well. But I was also lucky that my insurance enabled that option for me. Best wishes.

You really need to get more clarity about what was found in your pet scan. When the cancer has spread to lymph nodes, they usually don’t want to do surgery, Radiation is the preferred technique at that point. You really need to speak to a radiation oncologist about your options.

Long-term results are pretty much the same for radiation and surgery.

What was found in your biopsy? How many cores had cancer how many of them were 3+4 what percentage of four was found in the ones that were 3+4. Just yesterday someone Said they had 3+4 in one core and it was only 10% four, they had two more that were 3+3. You can go on active surveillance with such a minimal case. You can’t go on active surveillance if it’s spread to lymph nodes however, So you need to really speak to the oncologist about what was found in the PET scan. If it is found in lymph nodes, then you want to have radiation to those spots.

Ask about getting SBRT radiation. It is just as effective With five treatments as other radiation with 20 or more treatments. They can zap your lymph nodes at the same time they are doing your prostate.

I’m not sure where you are being treated, but you may want to go to a center of excellence to get more clarity on what’s really going on with your cancer?. It doesn’t sound like where you are at is treating you as well as they should.

@mjp0512
They weren't completely read at visit on Friday morning - PET scan was Thursday afternoon - doctor said they should be available this week probably Monday.

I'm sorry to hear the OP's news. I was the same age (56) at diagnosis, except that my cancer had spread to my spine rather than my lymph nodes.

Radiation to the prostate won't usually cause any need for a bladder bag, especially in an otherwise young and healthy patient. I was in the unlucky minority in getting some permanent radiation damage to my lower bladder, but that's just a mild annoyance a few years later: I'm down to waking only once during the night to go to the bathroom (some nights not at all), and am now able to settle into an airplane or train seat without planning an emergency route to the nearest lavatory. 🙂

I try to look at it as a positive: the fact that the radiation spread a bit beyond my prostate means it might have caught any cancer cells just outside the prostate before they could form detectable tumours.

@jeffmarc said it all. With a 3+4, depending on the details of the biopsy, all options are theoretically possible. Given that you are young and healthy and if AS or focal therapy are ruled out, you might be better off with surgery as long as the cancer is clearly organ confined. If there is a high probability that it already reached the capsule (or spread even further), then radiation would likely be better.

Definitely ask for an Artera AI and/or Decipher test to get a better idea of your cancer’s aggressiveness.

Definitely need more information before making a decision and there is great advice above. If it has not spread beyond the prostate and you are a candidate for focal you might want to consider Tulsa’s Pro at a COE. I did mine at Mayo in 2024 for my 4+3 and am very happy with the results.

Although I was 69 when treated, I did my research as you are doing, and decided on Radiation with the Mridian machine which has a built-in Mri. The built-in Mri allowed the radiation oncologist to use 2 mm margins instead of 3 to 5 mm margins which can make a big difference in terms of side effects and quality of life. You may want to ask about this machine and also the Elekta Unity which also has a built-in MRI with similar features. I looked at many other options regarding Radiation and removal. My PSA was 10.2 but I too, had 3+4 Gleason’s. I had five treatments in Florida by a radiation oncologist, who was trained at MD Andersen. Minor and temporary urinary restrictions were my only real side effects and Flomax helped. I was treated in February 2023.

All good comments above. To reinforce a bit, getting a telehealth second opinion is a good thing to do. Doctors are dedicated, but not infallible. If you do decide on Radiation, you may want to have spaceoar Inserted to help provide additional space between your rectum and your prostate, to minimize healthy tissue exposure.