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.

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

@kjacko

I just talked to a Cancer Hospital prostate Cancer specialist who told me that they don’t do Proton treatments because it has not been approved by the NCC.(?)

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Nccn.org: Many doctors follow their guidelines, and it is there for doctors and patients. It is worth looking at.

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@kjacko

Never heard of the 5 day radiation treatment

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kjacko, Yes it is called high dose. Becoming popular.

Both Rochester Mayo and Phoenix Mayo offer the 5 high dose regimen. I was informed first week 3 treatments and second week 2 treatments. It does use a high dose radiation versus the traditional radiation dose that is low dose but treatment is 20-40 treatments. Mine was 30 over 6 weeks. If I had been given option (mine was done at UFPTI) I would have chose the 5 high dose treatment.

I am sure the 5 dose treatment are now at other locations but you can research the high dose treatments and contact both Phoenix and Rochester Mayo Clinic for more information. Mayo Jacksonville does not have proton just photon. I am not sure if they offer a high does but it would be photon not proton that the other clinics can offer.

Connie the moderator can probably give you contact information to learn more about the high does regimen.
Goo luck.

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In reply to @kjacko "Thanks" + (show)
@kjacko

james1951, kjacko,
The 5 treatment high dose is done over two weeks. It is 3 days the first and 2 the next. This comes from those who had it. I had thought was all in one week but was advised is done over 2 weeks.

I had 30 rounds of proton over 6 weeks. It actually turned into 7 weeks as had 2 holidays in there.

My Mayo primary care doctor on my last visit stated some research was showing some increase in side affects with the high dose 5 day plan. But way to early to say this is norm.

He also said research going on about the need to do the water drinking to get bladder out of way and if sufficient to justify drinking the water. I really suffered with the drinking as had urge to go quite often. But if will help reduce adverse affect on bladder was glad to do it.

I think I posted but don't see it that if I had been offered the 5 day high dose I would have done it. I was not given the option. I think one reason was I have an ICD/Pacemaker and they wanted to keep as much chance of any radiation affecting my device. I know I had to have it checked once a week but was not affected at all.

I was given pencil beam and my pace clinic techs told me with pencil beam that any affect on ICD/Pacemaker would be very unusual. The drive to/from UFPTI from where I lived was 40 minutes each way. So a reduced number of days would have been great. I just wished Mayo Jacksonville offered proton radiation and not just photon as is where I have all my other medical appts. and treatments.

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@hbp

If your doctors have advised that your apparent gleason score is 8 or above, then if I were you I would have the surgery now. Otherwise I think that you have time for a second opinion. Also, in my opinion if you are 75 or more then radiation is ok. Younger than that go with the gold standard of surgery Good luck I had surgery at 74 and I think that I did the right thing

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And if you were 79 with a gleason score 8 and localized? What about Orgovyx and nothing else?

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Seer, a lot depends on other health issues. In my opinion, a 79 year old with other serious health issues might go with just an ADT and monitor what happens. If the cancer spreads, them radiation might be better than RP.

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@seer

And if you were 79 with a gleason score 8 and localized? What about Orgovyx and nothing else?

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Call me crazy but if I were an 80 year old with a gleason score of 8 that was localized to the prostate, I would do absolutely nothing.

Why would I treat?

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@seer

And if you were 79 with a gleason score 8 and localized? What about Orgovyx and nothing else?

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72/73 with G 9 localized.
Chose RP at center of excellence.
Excellent recovery. BCR postop,followed by salvage treatment with radiation and 4 mos Orgovyx.
Would choose it again.
So many factors involved in decision making: Health and objectives, so much more and so personal.
I would choose treatment: Surgery or radiation.
ADT alone does not kill prostate cancer.
Very personal decision.
Best wishes.

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@jc76

kjacko, Yes it is called high dose. Becoming popular.

Both Rochester Mayo and Phoenix Mayo offer the 5 high dose regimen. I was informed first week 3 treatments and second week 2 treatments. It does use a high dose radiation versus the traditional radiation dose that is low dose but treatment is 20-40 treatments. Mine was 30 over 6 weeks. If I had been given option (mine was done at UFPTI) I would have chose the 5 high dose treatment.

I am sure the 5 dose treatment are now at other locations but you can research the high dose treatments and contact both Phoenix and Rochester Mayo Clinic for more information. Mayo Jacksonville does not have proton just photon. I am not sure if they offer a high does but it would be photon not proton that the other clinics can offer.

Connie the moderator can probably give you contact information to learn more about the high does regimen.
Goo luck.

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@kjacko, "Through research into the power of proton beams, Mayo Clinic experts are finding ways to reduce prostate cancer treatment to five session. That shortens the length of treatments from up to two months to one or two weeks."

You can read more about proton beam therapy at Mayo Clinic here:
- Proton Beam Therapy Program at Mayo https://www.mayoclinic.org/departments-centers/proton-beam-therapy-program/sections/about-mayo-clinics-program/gnc-20187660

Should you wish to seek a second opinion from Mayo Clinic experts, you can get started here: http://mayocl.in/1mtmR63

Did you decide to get a second opinion?

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If you are a healthy 79 year old and have an expectation of 10-15-20 years of cancer free life, I personally believe you are on the right path with a radical prostatectomy at a center of excellence. If you have life limiting health issues, then other treatments may be a better option. Whatever treatment decision you make, you need to believe in your decision and move forward. I went with a RP at Mayo-Rochester, can't say enough about Mayo and their expertise.

Good luck this week and praying all goes well.

Jim

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At age 72, I was faced with choice of radiation or surgery. Many in my family lived to 90 or beyond. My cancer was confined to Prostate gland according to PSMA test. After lots of research, I chose RALP as I found that radiation after surgery was a doable option, but the radiation affected the tissue making surgery after radiation not a good option.

I had 3+4’s and some 4+3’s. After the RALP, the pathology reported an as yet undetected cancer that would have survived radiation.

I am now very happy with my decision.

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