Second guessing or being sure.

Posted by kjacko @kjacko, Oct 31, 2023

I am scheduled to have my prostate removed next week. In the past few days I have received comments from a number of men who have a similar situation to me. They ended having additional testing on their cancerous prostate and were told they didn’t need surgery, either because their Gleason score was lower than first reported or their cancer was determined to be very slow growing. I started wondering if I should get another opinion. I know it’s close to surgery time but I want to do what will provide me with the best outcome. My biggest fear is that if I do get another opinion and they agree surgery is best, I might regret doing it in the first place. I don’t know if this is being smart or as the day of surgery gets closer, I’m having “buyer’s remorse”. Any of you ever felt this way? Thanks for responding.

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@jc76

You really need to get second opinion regardless of diagnosis. Are you going to a major facility for your testing and the procedure? This is an important decision for you and second opinions on this are important.

My Gleason score worse biopsy was 3+4=7 like yours. I was not given surgery as option due to age and heart failure. However I am a very active person and do sprint triathlons.

Have you had a Decipher test? That will further rate the seriousness of your cancer. Mine was originally intermediate and was changed to low risk after Decipher. That is why additional test are so important.

Have you considered the new radiation treatments. If you cancer has not spread outside prostrate they have an excellent cure rate. Mine was proton 30 proton treatments over 6 weeks. Others have had a new version with only 5 treatments over 2 weeks. The radiation is far less side affects and complications and is done without any sedation at all. It takes about 10 minutes and you would not know you even had the treatment.

There are some side affects but everyone is different on how much they affect you. I had minor side affects. Do some more research on proton and photon radiation treatments. They use different type radiation. Get a second opinion. And consider (strongly advise) having a Decipher test, PSMA, and bone scan. If those last two are negative you should really discuss those findings with your second opinion and present provider.

You will read a lot of post that some urologist want to do surgery. Some radiologist/oncologist will want proton, some photon. I think you should see a radiologist/oncologist to go over different radiation treatments and their cure rates versus surgery.

Again don't know your specifics and if your cancer is still inside prostrate only, but your Gleason score is not that bad? What was your PSA level? Get a GOOD second opinion and asked about all options of treating cancers and the pros and cons of each. I am 76 and happy with the proton radiation treatments done at UFPTI. I did get two opinions and did a lot of research prior to deciding.

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Thanks. So much to consider in a short period of time.

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@ozelli

It really comes down to your personal risk profile. At what level do you feel that treatment is probably necessary, necessary or definitely necessary.

Personally, I would be happy to continue monitoring with your numbers. Others would not feel comfortable at all with that approach.

I watched my PSA go from 5.75 in 2016 to about 17 in late 2022. I had in my head a PSA number of 15 that I would definitely treat at. I foolishly didn't check my numbers for 12 months and they spiked from 12 to 17 over that time period. Did I leave it too late? Do not know but I was very pleased with my personal treatment outcome.

Certainly you should get a 2nd opinion. I presume you have spoken with a professional who isn't a surgeon.

It is a big decision but not one that should be constricted by time. Most prostate cancers are quite slow growing.

I wish you well.

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Thanks. BTW, what treatment did you have done?

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My biopsy gleason score was also 3+4 from local lab. Sent the slides to John Hopkins, they confirmed the 3+4 and said no cribriform noted. I then sent sample for a prolaris genomic test. It came back that I was on the borderline of active surveylance or treat. I too was worried about over treating a low grade cancer. The 5 SBRT treatments seemed like the way to go but I was afraid it would make my existing urinary issues worse. I opted for surgery and am glad I did. My post surgery pathology ended up being 4+3 with a small amount of 5 and there was cribriform morphology. My biopsy missed higher grade cancer the 4 portion of my 3+4 grew from the time of biopsy to the time of surgery, May to Sept. I kinda doubt that. The biopsy is just a small sample of the overall prostate so I believe it just missed some cancer. On the other hand, gleason scores are sometimes downgraded after surgery. If I was 3+3 I would have just watched it but having the 4 was the deciding factor for me. Each case is unique tho. I'm happy with my decision.

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Don't listen to us. We each represent a series of n=1, and are amateur researchers. Go to the cancer center of excellence of your choice and speak with 1 or more doctors there. They spend their entire professional lives reading, thinking, and talking about this. Take your partner with you. Then listen to your heart and your partner. Even if insurance doesn't cover the visit, it's worth the out of pocket cost.

FWIW, I'm 74 with a similar biopsy and PSA profile to you. I chose surgery and 7 months later am feeling 100% positive about it, with undetectable PSA, return of continence, and successful sexual function with viagra and a loving wife. YMMV.

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@trusam1

Don't listen to us. We each represent a series of n=1, and are amateur researchers. Go to the cancer center of excellence of your choice and speak with 1 or more doctors there. They spend their entire professional lives reading, thinking, and talking about this. Take your partner with you. Then listen to your heart and your partner. Even if insurance doesn't cover the visit, it's worth the out of pocket cost.

FWIW, I'm 74 with a similar biopsy and PSA profile to you. I chose surgery and 7 months later am feeling 100% positive about it, with undetectable PSA, return of continence, and successful sexual function with viagra and a loving wife. YMMV.

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Thanks for the reply. Best wishes

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@keywest19

My biopsy gleason score was also 3+4 from local lab. Sent the slides to John Hopkins, they confirmed the 3+4 and said no cribriform noted. I then sent sample for a prolaris genomic test. It came back that I was on the borderline of active surveylance or treat. I too was worried about over treating a low grade cancer. The 5 SBRT treatments seemed like the way to go but I was afraid it would make my existing urinary issues worse. I opted for surgery and am glad I did. My post surgery pathology ended up being 4+3 with a small amount of 5 and there was cribriform morphology. My biopsy missed higher grade cancer the 4 portion of my 3+4 grew from the time of biopsy to the time of surgery, May to Sept. I kinda doubt that. The biopsy is just a small sample of the overall prostate so I believe it just missed some cancer. On the other hand, gleason scores are sometimes downgraded after surgery. If I was 3+3 I would have just watched it but having the 4 was the deciding factor for me. Each case is unique tho. I'm happy with my decision.

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Thanks and best wishes

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I was 56 when I had my prostate removed, we followed that up with radiation treatment for the surrounding area, all was well for 14 months when the cystitis in my bladder decided to start peeling.
I have been fighting it ever since, cystoscopy every 6 months, emergency room visits, Supra Pubic Catheter.
It got to the point I was self-catheter myself 30 to 40 times a week.
I have changed Urologist 4 times, looking for answers that made since to me. One insisted that I get the bag, another wanted me to keep the SPC in. (The bladder spasms were vicious.)
I highly recommend 2nd opinions, but I will also say that if I was 10 years older when I was diagnosed,
I would have reconsidered my decision to go with removal, my quality of life leaves a lot to be desired.
Don’t mean to be Debbie Downer, but I highly recommend that you gather all the information and options before deciding.
Good luck on your journey.

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@sansman

I was 56 when I had my prostate removed, we followed that up with radiation treatment for the surrounding area, all was well for 14 months when the cystitis in my bladder decided to start peeling.
I have been fighting it ever since, cystoscopy every 6 months, emergency room visits, Supra Pubic Catheter.
It got to the point I was self-catheter myself 30 to 40 times a week.
I have changed Urologist 4 times, looking for answers that made since to me. One insisted that I get the bag, another wanted me to keep the SPC in. (The bladder spasms were vicious.)
I highly recommend 2nd opinions, but I will also say that if I was 10 years older when I was diagnosed,
I would have reconsidered my decision to go with removal, my quality of life leaves a lot to be desired.
Don’t mean to be Debbie Downer, but I highly recommend that you gather all the information and options before deciding.
Good luck on your journey.

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I respect your opinion. Prayers to you for better health.

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@kjacko

Never heard of the 5 day radiation treatment

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Yes u need to inquire about this for sure.
5 days maybe every other day treatment 5 total and finished.
Get the same dosage as a 35 day treatment

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@james1951

Yes u need to inquire about this for sure.
5 days maybe every other day treatment 5 total and finished.
Get the same dosage as a 35 day treatment

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Thanks

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