Scheduled for a Radical Prostatectomy and having Second Thoughts

Posted by hmish @hmishkind, 3 days ago

Am I doing the right thing? I am 69 years old, in good overall health and was recently, to my utter surprise,diagnosed with prostate cancer. My PSA in 9/21 was 1.46; 11/22 was 1.64;12/23 was 1.33 and increased to 2.46 in 8/23. This led to an MR of the prostate in 10/24 that revealed a PI-RAD 5. with no evidence of extracapsular extension and no evidence of enlarged pelvic lymph nodes. 11/24 my Prostate Biopsy showed a Gleason score of 4+3=7 Grade Group 3 of the left lateral apex; a Gleason score of 4+4=8 Grade Group 4 of the right medial apex; a Gleason score of 3+4=7 Grade Group 2 of the left medial apex. My PSMA Pet Scan showed no evidence of metastatic disease.
I have met with surgery and radiation oncology and have reviewed the advantages and disadvantages of both and have elected to have a radical prostatectomy the end of this month.
I am scared and wondering whether I am making the right decision for surgery vs. radiation vs. doing nothing. After all my PSA was still within normal limits even though it was increasing.
I would love any and all thoughts on my scenario. I am worried about my quality of life after surgery. I appreciate any and all thoughts from this group on my concerns.

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

Mine is a similar case although my PSA was 8.8. My first inclination was “cut it out” and I scheduled a robotic prostatectomy. After settling down I started researching and have decided on SBRT 5 sessions. Most of what I’ve read makes me skeptical that surgery is ever a very good option unless you’re in a small percentage of people who won’t tolerate radiation. Much of what I have read indicates that despite a clean PSMA PET, higher Gleasons often have microscopic cancer in the margins or pelvic lymph nodes. That means they may need to add radiation after prostatectomy and you get double treatment (triple if ADT) and potentially double quality of life side effects. I will do 5 proton sbrt treatments over 2 weeks which I believe will hit small margins, seminal vesicles and pelvic lymph nodes. There are some tests out there to help guide your treatment plan. Prostox assay can see whether short or long term radiation is best based on your individual genetics. Also Artera AI to see if ADT is even going to be beneficial in your unique situation. Also important to take into account your own comfort level from a psychological perspective. Will you feel more more confident with one type of treatment over another. I have found many YouTube videos from very reliable sources that have helped inform my decision from UCLA, MSKCC, MD Anderson and others. Prostate Cancer Research Institute has been a very good source of education as well. Best for any choice you make. Solidarity!

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@scottbeammeup

To add to this, when I started this "journey" (I still hate that word), I spent HOURS every day reading medical journals, message boards, books etc. to the point that it was consuming all my free time, even after getting SBRT treatment.

My therapist finally woke me up by saying "you are NEVER going to find the answer you are looking for, which is 'how will my specific case turn out' because all the numbers and statistics and articles can only give guidance and generalities."

I realized she was right and that I made the decision I thought was best for me at the time after consulting with multiple doctors and now I just have to wait and see what happens. It's sometimes easier said than done, though I'm trying.

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I couldn't agree more. I chose a direction and now I need to "learn" to deal with the unfavorable outcome. While perusing other posts I found some humor and hope. Hope is what I have been seeking. Now to get busy living "just for today".

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@kjacko

I was diagnosed with two cores of cancer, one at 3+4. An earlier MRI showed nothing. I immediately decided on RP as I wanted cancer removed. I had a month prior to surgery and did Kegels religiously. After the surgery (Nov. 2023) my pathology report showed my Gleason was actually 4+5 and cancer right at the capsule. The surgeon believes he got it all 🙏. After my catheter was removed I had another month to do Kegels before my Followup appointment. Bottom line is I have had ZERO incontinence issues. Also, I have had 4 PSA blood tests in the last year and all have come back < 0.01. Praying everyday, but so far so good. Best of luck to you as well.

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Thank you for sharing. It really means a lot.

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It's really interesting to come along this post, as I am in a very similar spot. My PSA has bounced around for eight years. First red flag in late 2016 was a PSA of 14. Had an MRI at that time with a PI-RAD 2. Because of the promising scan and the fact that my PSA went down, the plan was to stay on top of my PSA and if it ever went up over 10 again, we'd act on it. Spring of '23 my PSA jumped to 10. A few months later it was 12. MRI in October showed a PI-RAD 5 lesion: bummer. Had a fusion biopsy. Out of 5 cores taken from the "area of interest," one had a very small amount of 3+4=7 cancer. Other four clear. They took 11 more cores from my prostate and one showed 3+3=6; all the others were clear. The bad news is there is "possible" invasion of one of the seminal vesicles, which apparently is a major cause for concern. I have met with a surgeon and a radiation oncologist. Pet scan this coming Friday. My knee jerk reaction was to definitely plan on a RP. I went to the appointment with the radiation oncologist simply as due diligence. Glad I went. I now feel like I have two really good options. The surgeon at the teaching hospital I am at has a lot of really great reviews, so I'm very confident he's a "top gun" surgeon. My radiation oncologist seems to be outstanding; she's an assistant professor, like the surgeon, and, while young, has treated a lot of prostate cancer. I am now leaning towards the radiation option, but have not completely made a final decision. I have two friends who had surgery and one that went the radiation route and all have "no regrets." Prostate cancer is a very tricky business. Will have to make a final decision after the Pet Scan. Good luck with your treatment.

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@jeffmarc

Re: Immunotherapy , HIFU , Cryoabalation , NanoKnife , TULSA PRO.

Apparently, these treatments really only work properly with somebody who has a Gleason of 3+4 or less. I have been recommending looking into them for people that have higher Gleason scores, It appears I was wrong about that and they should not need to investigate those techniques because they aren’t going to work well with those higher Gleason cases.

A 3+4 with intraductal or cribriform would also not be looking for those treatments.

I would love to hear from somebody in here that has had one of those treatments with a high Gleason score, and how successful it was.

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I have associates , Gleason 4 + 3 = 7 who had NanoKnife in Toronto , Cryoabalation in Alberta , and Immunotherapy in Germany .
None I am aware off having HIFU .

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@clandeboye1

I have associates , Gleason 4 + 3 = 7 who had NanoKnife in Toronto , Cryoabalation in Alberta , and Immunotherapy in Germany .
None I am aware off having HIFU .

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Do you know what the long term results were for those people?

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NO .
They all had their procedures within the last 2 years . The most recent only weeks before Xmas . All are doing well - no regrets so far . Life is back to normal . NanoKnife is becoming very popular worldwide , slower in the USA . A clinic in Germany is performing thousands of procedures , so much so patients are travelling there from all over the world , for both NanoKnife and Immunotherapy . A friend of mine travelled there before realizing there were several clinics and hospitals of excellence ( Princess Margaret & Sunnybrook ) performing NanoKnife . Google : Niagara Now - William Thomas Nanoknife Articles . FOR HIS GERMANY EXPERIENCE .
NanoKnife is big in Australia and by Professor Dr. Alberton , Kings College in London England . Dr. Robert Nam at North Toronto Cancer Center , in Toronto , performs the most ( in Toronto ) plus Dr. Nathan Perlis at The Princess Margaret Hospital , ranked in the top five Treatment and Research Cancer Hospitals in the world .
I enjoy your threads . Keep well and HAPPY NEW YEAR .

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It is my understanding that you go with the highest number, so you are a Gleason 8...too high to do active surveillance. You are at a higher risk of reoccurrence as well, so if you have surgery, you'll likely need radiation down the road. My numbers were similar to yours only my psa was 14. Consult at Mayo Rochester recommended radiation and ADT. They explained....why go thru major surgery and risk incontinence and ED when you will likely need radiation too. I went with their recommendation. Was radiated March and April of 2023. Very minimal urine and bowls issues for a couple months. All good now, except getting up at night to pee...which comes with age anyway. I'm 73. My ADT, eligard will continue 1 more year. PSA is .001 ADT does have side effects, but I can live with them!

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@clandeboye1

NO .
They all had their procedures within the last 2 years . The most recent only weeks before Xmas . All are doing well - no regrets so far . Life is back to normal . NanoKnife is becoming very popular worldwide , slower in the USA . A clinic in Germany is performing thousands of procedures , so much so patients are travelling there from all over the world , for both NanoKnife and Immunotherapy . A friend of mine travelled there before realizing there were several clinics and hospitals of excellence ( Princess Margaret & Sunnybrook ) performing NanoKnife . Google : Niagara Now - William Thomas Nanoknife Articles . FOR HIS GERMANY EXPERIENCE .
NanoKnife is big in Australia and by Professor Dr. Alberton , Kings College in London England . Dr. Robert Nam at North Toronto Cancer Center , in Toronto , performs the most ( in Toronto ) plus Dr. Nathan Perlis at The Princess Margaret Hospital , ranked in the top five Treatment and Research Cancer Hospitals in the world .
I enjoy your threads . Keep well and HAPPY NEW YEAR .

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Do you know if any of these people had intraductal and/or cribriform, seminal vesicle invasion, or other aggressive issues?

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@scottbeammeup

To add to this, when I started this "journey" (I still hate that word), I spent HOURS every day reading medical journals, message boards, books etc. to the point that it was consuming all my free time, even after getting SBRT treatment.

My therapist finally woke me up by saying "you are NEVER going to find the answer you are looking for, which is 'how will my specific case turn out' because all the numbers and statistics and articles can only give guidance and generalities."

I realized she was right and that I made the decision I thought was best for me at the time after consulting with multiple doctors and now I just have to wait and see what happens. It's sometimes easier said than done, though I'm trying.

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Oh man, even after I wrote the word “journey” I began to regret it! But it seemed appropriate for someone just starting out on this ‘road’…but yeah, it’s overused for sure.
My least favorite word is “battle” - even though it may be the closest thing we have to describing the ups and downs of this thing. But it is thrown around so often it ceases to have the same impact. I never battled anything - I just stretched out on a table and passively got cut open ….and then fried…no battle. Perhaps “beleaguered” or “besieged” is better because of the powerlessness we feel?
One thing’s for sure: “…we’ll just have to wait and see what happens”.

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