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!

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

@lyricw

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

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Unfortunately the way the medical system works in the USA you can't just opt for part of a one treatment and then mix and match into a new and seemingly better treatment that seems right for you. Like HIFU and a bit of proton, they would not do it, even though they could. Just everything is done with clinical trials and so on, each is done separately. So to mix two like that they would have had to go through a trial with them together even if it is a good idea to do a mixing like that, and it seems like a good idea. It makes the US kind of both leading and archaic at the same time, true we test everything so we have less crazy stuff (snake oils), but one can't just do a logical mix that seems right and may help unless one has a doctor that goes outside guidelines which some doctors do do.

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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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Take your time on self-education and evaluating options. This isn't a house fair that requires water in minutes or the structure is destroyed, this is a forest fire and your scope and timeline is much more.

At age 60 my friend had GS7 and surgery and 11 years later his PSA is always below 0.1 - At age 41 I had GS6 (which became GS7) and surgery and 11 years later my PSA rose and now on ADT. Point of sharing this is that biochemical recurrence is a real risk of any treatment, but it surely isn't guaranteed.

The PCRI mid-year conference of Spring 2023 has many hours of excellent videos, it isn't the same as binge watching Netflix, but with the same mindset, 10-15 hours later you will know much more. https://pcri.org/2023-myu The PCF had a similar series in Fall of 2022
https://www.pcf.org/scientific-retreat/29th-annual/29th-annual-scientific-retreat-video-replays/

Keep the Faith. Stay Positive.

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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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Your PSA hasn't risen much at all really but your biopsy results are rather dramatic given the number of cores now positive and the amount of the #4. Clearly this is a case where action is required. Your choice of seed implant/brachytherapy seems sensible to me. I am not a fan of surgery either but i understand the thinking of those who choose to go down that road.

The big question for your numbers are whether hormone treatment is required. I had a PSA of around 17, Gleason 4+3 (4 cores positive, only one with 4+3, Grade #4 was less than 10%) and chose to pass on hormone treatment.

What are your thoughts on this issue given your stats?

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" targeted biopsy found 5 of 17 cores @ 3+4=7"

17 cores seems unusual. Am I reading this wrong?

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Good morning to everyone,

@ozelli, I double checked the pathology results and yes, they took 17 samples, 5 positive and 12 benign.
I hope to choose a treatment and not do hormone therapy. It hasn't been offered or even discussed and I have been to 5 practices before eventually settling on Mayo.
I am also not a fan of surgery but if I thought it would have a better outcome I would do it. In theory it makes sense, remove the prostate and it's all gone but we have seen that is not always the case. I have watched a lot of Dr Scholz UTUBE videos from PCRI and he is a proponent of newer technologies like TULSA, HIFU etc. but the most important thing is WHO treats us over what modality we choose.
Thank you all so much for your feedback and support.

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For myself, I had just turned 56 when diagnosed with prostate cancer (GS 4/3 = 7). I am also healthy, active and have a positive outlook on life. I did a significant amount of research and ultimately chose a robotic assisted radical prostatectomy because it aligned with my personal life expectations and allowed for the most options in case of BC reoccurrence. My number one goal was to have 30+ years of cancer free life, followed by a distant want of continence and erectile function - Fortunately, all three goals have been met to date (obviously, cancer free life is a work in process).
Whatever treatment plan you decide to move forward with, it is absolutely critical to do your homework, be treated at a center of excellence and pick the best possible doctor at that center of excellence. I chose Mayo-Rochester and Doctor Igor Frank. Dr. Frank was the first surgeon at Mayo to perform the robotically assisted radical prostatectomy surgery and has since trained other surgeons for 20 years. I wanted a surgeon that had decades of experience so that the best possible decisions could be made during surgery. I am sure there are many other great surgeons, just want to emphasize that it is vital to do your homework if you choose to go with a radical prostatectomy (same for other treatment plans, I just don't have personal experience with other treatment plans).
Most men will say they are happy with the treatment plan they chose - That's probably human nature and it is the case with myself. I am so very happy I went with a RP. The known cancer has been taken out of my body, a complete pathology was able to be performed (prostate, seminal vesicles, lymph nodes) versus individual biopsy samples, and there are a lot of options in case biochemical reoccurrence occurs. As I always say to other men facing this unfortunate decision - If a train is coming, get off the tracks immediately. Cancer is deadly and must be addressed immediately.

Good luck with your treatment plan decision and a cancer-free life going forward!!

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@hammer101

For myself, I had just turned 56 when diagnosed with prostate cancer (GS 4/3 = 7). I am also healthy, active and have a positive outlook on life. I did a significant amount of research and ultimately chose a robotic assisted radical prostatectomy because it aligned with my personal life expectations and allowed for the most options in case of BC reoccurrence. My number one goal was to have 30+ years of cancer free life, followed by a distant want of continence and erectile function - Fortunately, all three goals have been met to date (obviously, cancer free life is a work in process).
Whatever treatment plan you decide to move forward with, it is absolutely critical to do your homework, be treated at a center of excellence and pick the best possible doctor at that center of excellence. I chose Mayo-Rochester and Doctor Igor Frank. Dr. Frank was the first surgeon at Mayo to perform the robotically assisted radical prostatectomy surgery and has since trained other surgeons for 20 years. I wanted a surgeon that had decades of experience so that the best possible decisions could be made during surgery. I am sure there are many other great surgeons, just want to emphasize that it is vital to do your homework if you choose to go with a radical prostatectomy (same for other treatment plans, I just don't have personal experience with other treatment plans).
Most men will say they are happy with the treatment plan they chose - That's probably human nature and it is the case with myself. I am so very happy I went with a RP. The known cancer has been taken out of my body, a complete pathology was able to be performed (prostate, seminal vesicles, lymph nodes) versus individual biopsy samples, and there are a lot of options in case biochemical reoccurrence occurs. As I always say to other men facing this unfortunate decision - If a train is coming, get off the tracks immediately. Cancer is deadly and must be addressed immediately.

Good luck with your treatment plan decision and a cancer-free life going forward!!

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Thank you very much for your message hammer101. Love to hear the great results.
I hope you get those 30 years and then some! In the case I do choose surgery I will ask for Dr Frank.
I had the mindset of addressing this immediately when I was diagnosed last year but trusted the doctors that recommended AS. I still do trust them. Based on the information they had it made sense. I am back where I started after the recent biopsy results and ready to treat this now. No more waiting. If I could only make a decision now and have some confidence in the Dr that would be tremendous. I am obviously still unsettled at this moment. I have faith that it will all come together over the next 2 weeks and we will have a plan. Thank you all so much for your input.

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Here is a good website to compare odds of cure for the major treatment paths. You have to determine your stage, low risk, intermediate, or high risk (risk of recurrence). So if you are intermediate, pull up the intermediate chart and you can see the odds of 10-20 yr survival, etc. based on the treatment you pick.

https://www.prostatecancerfree.org/compare-prostate-cancer-treatments/

It is best viewed on computer or just print it on paper. Not so viewable on phone.

To make the graphs easier to read, i drew a dot on the endpoints of the elipses, and then drew a line through the dots. This turns the elipses into lines.

Also be aware the the graphs don’t show any salvage radiation benefit. This would boost the surgery odds up a bit.

Also beware, this is a very dysfunctional industry from my view. Loads of bad info mixed in with the good info. Same with the docs. Some of them are more dangerous than the cancer.

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@groundhogy

Here is a good website to compare odds of cure for the major treatment paths. You have to determine your stage, low risk, intermediate, or high risk (risk of recurrence). So if you are intermediate, pull up the intermediate chart and you can see the odds of 10-20 yr survival, etc. based on the treatment you pick.

https://www.prostatecancerfree.org/compare-prostate-cancer-treatments/

It is best viewed on computer or just print it on paper. Not so viewable on phone.

To make the graphs easier to read, i drew a dot on the endpoints of the elipses, and then drew a line through the dots. This turns the elipses into lines.

Also be aware the the graphs don’t show any salvage radiation benefit. This would boost the surgery odds up a bit.

Also beware, this is a very dysfunctional industry from my view. Loads of bad info mixed in with the good info. Same with the docs. Some of them are more dangerous than the cancer.

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Great comments and I so very much agree. Prostate cancer is tricky and doctors that make definitive statements about treatment plans and the chance of BC reoccurrence are misleading or trying to support their treatment method. It is vitally important for the patient to do their homework and treat the cancer that best aligns with their circumstances. For myself, relatively young (56 last year when I had to make my decision), active - I took the advice from doctors into account, but this was not the only information that I used. In the end, I went with a radical prostatectomy because it removed the known cancer from my body, gave the best chance for understanding what level the cancer was at within my body (full pathology post surgery), and allowed for the most follow-up treatment options if there was BCR.

Prostate cancer is not fully understood and must be taken seriously if you want the best outcome.

Good luck to everyone!!

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@groundhogy

Here is a good website to compare odds of cure for the major treatment paths. You have to determine your stage, low risk, intermediate, or high risk (risk of recurrence). So if you are intermediate, pull up the intermediate chart and you can see the odds of 10-20 yr survival, etc. based on the treatment you pick.

https://www.prostatecancerfree.org/compare-prostate-cancer-treatments/

It is best viewed on computer or just print it on paper. Not so viewable on phone.

To make the graphs easier to read, i drew a dot on the endpoints of the elipses, and then drew a line through the dots. This turns the elipses into lines.

Also be aware the the graphs don’t show any salvage radiation benefit. This would boost the surgery odds up a bit.

Also beware, this is a very dysfunctional industry from my view. Loads of bad info mixed in with the good info. Same with the docs. Some of them are more dangerous than the cancer.

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This graph has been created by someone advocating a particular kind of treatment. I looked at the intermediate graph. How does it manage to use facts to advocate preferences? It's pretty simple, really. First, you decide how to group the data. You do this even though you may know that the data being grouped does not correspond across types of treatment. Then you decide how to present the data. The use of the ellipses helps to emphasize the positive presentation of the preferred treatment.
Bear in mind that this is just the opinion of one non-clinical observer. It does not mean that the data presented is not useful and I may be completely overlooking meaningful reasons why this portrayal might be appropriate.

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