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.

mar1957 | @marshallfeller | Nov 1, 2023

In reply to @kjacko "Never heard of the 5 day radiation treatment" + (show)

Mayo in Rochester does 5 day proton.

hbp | @hbp | Nov 1, 2023

I think that if your gleason score is 8 and above then you should have the surgery now but if it is less than 8 then get a second opinion from a top notch facility Good Luck

donaldguy | @donaldguy | Nov 1, 2023

I’m 74 and in great shape. I chose to have RLP at Mayo Jax in July. Surgery went well, and I’ve had zero complications post surgery. Regained continence in a few weeks. Had four of 12 biopsy results that were positive; high Gleasons - two eights and two nines. My doc strongly advised getting it out of me before anything spread. Had PET, MRI, and nuclear bone scan prior. All negative. Had 13 pelvic lymph nodes, vans deferens, and seminal vesicles removed also. All negative. Clear margins.

I am very happy with my choice but everyone is different. I went into it with no preconceived notions and felt total peace of mind with surgery. My thinking was/is “get this mess out of me asap!” Had my first post-op PSA two weeks ago: < .1 which my Dr classified as “undetectable.”

I second what another person said, “ don’t pay us any attention!” None of us are doctors, and we have zero credibility in making any recommendations for other people’s very serious health decisions. Do what makes you feel most comfortable. There are several options but not everyone is the right one for every person.

I would offer two pieces of advice, neither of which are medical: seek the Lord’s guidance and get comfortable with whatever decision you make because you are going to have to live (or die) with it. God bless and best wishes!

gently | @gently | Nov 1, 2023

You can move your surgery appointment forward to give yourself time for second, third and even fourth opinions. The advice below is really good.
It is easy to get nervous before a surgery, but it doesn't seem as though you have been given awareness of options. These option are important because of functional disabilities that may be lessened.
best luck

kjacko | @kjacko | Nov 2, 2023

In reply to @donaldguy "I’m 74 and in great shape. I chose to have RLP at Mayo Jax in July...." + (show)

Thanks and continued good health!

ozelli | @ozelli | Nov 2, 2023

In reply to @kjacko "Thanks. BTW, what treatment did you have done?" + (show)

I had proton beam therapy. While there were some side effects during treatment, they were transitory and post treatment there is literally nothing to report.

bens1 | @bens1 | Nov 2, 2023

kjacko: doctors are not infallible. Second or third opinions from different doctors at different institutions help narrow down a choice. The Decipher test also gives you additional biopsy based results (it takes about 2 weeks for these results). A phone consultation, with you sending your biopsy, imaging/report and any other test results, could be done fairly quickly. Postpone for a short time so you know after your decision that you gathered as many opinions as you can, in various ways, to feel comfortable with your decision. Regardless of how your body reacts to any given treatment, there is less, or no, "buyers remorse". Make sure you strongly consider quality of life side effects from the impact on healthy tissue.

kjacko | @kjacko | Nov 2, 2023

In reply to @bens1 "kjacko: doctors are not infallible. Second or third opinions from different doctors at different institutions help..." + (show)

I appreciate your response. Health and happiness.

merwether | @merwether | Nov 2, 2023

In reply to @marshallfeller "Mayo in Rochester does 5 day proton." + (show)

Would appreciate hearing about post treatment experience and side effects (if any) from those who have had 5 day proton at Mayo in Rochester (or elsewhere). I would have to travel for proton anyway so 5 day would be much more convenient than 6-8 weeks all things being equal.
Thanks!

kjacko | @kjacko | Nov 2, 2023

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.(?)