Seeking advice on treatment options

Posted by kenjh1968 @kenjh1968, Sep 21, 2023

55 years old and otherwise in good health. No symptoms and very active lifestyle. Been on AS for 10 months, currently under care at Mayo MN. Original pathology after routine physical Nov. 2022 found PSA @ 7.6. Blind biopsy found 2 cores positive with 20% and both diagnosed 3+3=6. Sent to Dr Epstien for 2nd opinion and he upgraded to 3+4=7. Switched from Local docs and went to Mayo. Went back to Mayo 2 weeks ago for bloodwork, MRI and targeted biopsy. PSA 8, targeted biopsy found 5 of 17 cores @ 3+4=7 with up to 80% of cores positive and all 20 to 40% grade 4. Also new is perennial invasion. I am ready to treat it now and looking for thoughts from guys that have been treated. Options on the table at Mayo are surgery, OBR and seed implant/brachytherapy. I am leaning toward seed implant/brachytherapy. I am also considering Tulsa Pro. I understand that I would have to pay out of pocket for Tulsa but if the technology is superior and will increase odds for better quality of life, I am OK with that. I have read many books and research studies constantly and finally just looking for thoughts from those that have lived it. I have a conf call scheduled in 2 weeks with the docs and will make a decision that day or sooner. Thank you all so much. GOD BLESS US ALL!

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I have been told that the gold standard is robotic surgery and then a period of ADT. This procedure preserves the option of radiation, in the event that you need that in the future, but radiation first does not usually preserve the option of surgery in the future. This is the procedure that I elected and if I had to do it again, I would select it again. Surgery is not painful and recovery is pretty fast, but it usually adversely effects your sex life and sometimes incontinence. Since you are young, preserving your future options and being aggressive now in your treatment, I think is a best route to prolong your life. Cancer is a life threatening condition and much more than an inconvenience. The most important goal is staying alive and having a quality of life. Good luck!

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When I and others on MCC attended Jacksonville Mayo Clinic seminar on prostrate cancer we were informed that the robotic surgery was the standard now and almost all done that way now. They went into the new robotic surgeries available and coming that really reduce incisions and new ability to do the surgery.

I was not a candidate for surgery. Many reasons was the stage, gleason score, risk level. But my age 76, having heart failure all made me not a good candidate for surgery. I don't think I would have chose it based on the cure rates for using radiation on my specific level of cancer and risk level.

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It would be interesting to see whether the new stats change the 20-30% chance of biological re-occurrence from robotic prostate removal. That was the reason I backed that out as an option even knowing the limitation to doing it if I chose radiation first. The risk was not for me. Maybe that % has changed and they talked about at the seminar along with side effects.

I had the mridian Linac machine that targets the cancer using 2 mm margins (instead of 3-5 mm for other radiation) in February, 5 hypo fraction treatments. Real time MRI built into the mridian. Auto shutoff and dynamic planning, no fused images used as a primary means of treatment. I was 69. No ADT. 3+4. My goal was to protect healthy tissue. Since February, my psa went from 10.2 to 4.6, 2.9 and a week ago, 1.4. Down is good.

There were not enough stats related to Tulsa Pro for me to feel comfortable with it. I also felt that any microcells that might cause re-occurrence were not "potentially" treated and that included, heat, cold, ablation...choices.

I looked at Proton as the other alternative as well. Many people chose proton and like many of the choices, they would do it again.

As you can see from the responses on Mayo Connect, there have been many successes with multiple choices, including Brachytherapy. PROTECT your healthy tissue. It makes a difference with your side effects.

You might want to use the search function to check out the comments on each type of treatment on this web site. At least you will have a "feel" for the strengths and weaknesses of each treatment.

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I chose surgery at a center of excellence, and would again.
Echoing hbp; surgery gave me a chance of "cure", while reserving radiation for future treatment.
And my recovery was excellent.
Pistop pathology confirmed that my Gleason score was high (9) and revealed extraprostatic extension (EPE; cells outside the prostate), and I have needed salvage radiation and short term ADT.
Age 72/73. PCa is/can be a long battle, I wanted the cancer (or as much as practical) removed and future options reserved.
Best wishes for successful treatment.

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One thing everyone should do is take time to make the right decision you feel comfortable with and not a quick decision, many people go 6 months getting opinions so don't find it odd if you do that.

Mayo is great on a lot of things, I think their biopsy and pathology is top notch, and I think their pathology is better than Hopkins now since Epstein in long gone. But Mayo is not great on Tulsa but sort of average on it due to conservativeness. They have only one or two that do it, but they apply more conservative approaches so if thinking of Tulsa then sure get Mayo's opinion but get other opinions too. Tulsa and other similar focal ablations the criteria should differ: are there any mets/lymph nodes (need PSMA and other scans to be clear), does the ablation technique easily cover the lesions volume plus some margin (so not too big a volume for the equipment), is it easily accessible to the equipment (reachable location and no blocking things like calcifications for Tulsa/HIFU), and so on. One should not apply the same measures/things one does for whole gland and try to force it into Tulsa. Proton, MRIdian, and maybe what you are talking about on seeds seem a good approach but when one starts trying to understand how it is done such as radiation dosing and so on, as a patient you will be left out of conversation 100%, so that makes it hard, and if they mention ADT that makes it worse. But you will have to see.

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Good blend of input provided thus far, so not sure how much more I can add. Your age is critical for consideration. I was 41 when I had surgery and unfortunately 10 years later I had biochemical recurrence and now on ADT for 1 year, but the surgery was very successful and would do it again. Either way, you at 55 or me at 52 are "young" by PCA standards and requires a realistic outlook on life expectancy. You could easily take a path, with success, and live in good health for decades.

There are more main stream options available today, so it is good to do your homework to get a sense of the path that works best for your piece of mind. Agree that taking your time is well within reason. Your PSA isn't increasing much, but it is high enough that I can understand not being comfortable with it.

I encourage researching options and talking to doctors and finding that point of intersection where you are asking questions and your pre-staged answers are more informative then the professionals. At that point, you are ready to decide on a treatment plan. Then, search out the doctor to do the work. You control the conversation and there are fundamentally two types, but should be done sequential.

stay positive and thank you for sharing.

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Were you ever offered hormonal or triplet?

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@wellness100

Were you ever offered hormonal or triplet?

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No medications have been offered or even discussed. I think those are supersessive and not curative and being 55 years old we are looking to cure.
I am considering surgery as well but the recurrence rates still being substantial, I am having a hard time committing to that. The amount of grade 4 cancer present in a small prostate is what has me ready to react in addition to the fact that Mayo docs advised we treat it now. I am very confused at the moment and hope to have some clarity soon.
Thank you all so much for your input. Very much appreciated!

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@kenjh1968

No medications have been offered or even discussed. I think those are supersessive and not curative and being 55 years old we are looking to cure.
I am considering surgery as well but the recurrence rates still being substantial, I am having a hard time committing to that. The amount of grade 4 cancer present in a small prostate is what has me ready to react in addition to the fact that Mayo docs advised we treat it now. I am very confused at the moment and hope to have some clarity soon.
Thank you all so much for your input. Very much appreciated!

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The issue is systemic vs focal. If it is metatistic the standard of care is systemic. It unclear what it is from what you said. Anyhow, clinics like Mayo should be able to tell and give you the best care possible.
Dont mind me. I am just another layman trying to make some sense of the whole thing.

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@bens1

It would be interesting to see whether the new stats change the 20-30% chance of biological re-occurrence from robotic prostate removal. That was the reason I backed that out as an option even knowing the limitation to doing it if I chose radiation first. The risk was not for me. Maybe that % has changed and they talked about at the seminar along with side effects.

I had the mridian Linac machine that targets the cancer using 2 mm margins (instead of 3-5 mm for other radiation) in February, 5 hypo fraction treatments. Real time MRI built into the mridian. Auto shutoff and dynamic planning, no fused images used as a primary means of treatment. I was 69. No ADT. 3+4. My goal was to protect healthy tissue. Since February, my psa went from 10.2 to 4.6, 2.9 and a week ago, 1.4. Down is good.

There were not enough stats related to Tulsa Pro for me to feel comfortable with it. I also felt that any microcells that might cause re-occurrence were not "potentially" treated and that included, heat, cold, ablation...choices.

I looked at Proton as the other alternative as well. Many people chose proton and like many of the choices, they would do it again.

As you can see from the responses on Mayo Connect, there have been many successes with multiple choices, including Brachytherapy. PROTECT your healthy tissue. It makes a difference with your side effects.

You might want to use the search function to check out the comments on each type of treatment on this web site. At least you will have a "feel" for the strengths and weaknesses of each treatment.

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Do you know if HIFU is offered to ablate lesion prior to proton therapy?

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