Newly Diagnosed: Removal vs Radiation

Posted by survivor5280 @survivor5280, Oct 28 5:11pm

Hello, I suppose I'm exactly sure where to start this. I'm already a cancer survivor from 9 years ago, only to find out I now have prostate cancer (no metastasis detected, this is new).

My PSA's were off the chart so the biopsy was next, which revealed low Gleason scores in all but one core, which was a 7 (I would have to check if it was 3+4 or 4+3, but it's still 7). The core was sent for a Decipher which came back as high risk 0.68 out of 1.0.

Prior to getting the Decipher results (this morning) my regular urologist recommended removal, as I'm only 54 years old and he felt it was a good fit as I am young enough to recover from it and said that radiation can cause long term effects that I might not see until I'm much older.

In this same topic, my second urologist (long story, I have two at the moment) reviewed with me the Decipher score + my Gleason and also recommended removal.

Of course this terrifies me. The process itself, another robotic removal just like my kidney, isn't nearly as horrifying to me as the side effects of losing your prostate (ED, incontinence, dry orgasms, etc).

The consensus is for a prostatectomy, but I'm curious to hear others experience in this regard and if they felt they chose the right path given the circumstances. I know that there's no way to know exactly how aggressive the cancer is until the whole thing comes out, but I want to believe there are intermediary things that can be done to see if they help first - but I was told that generally once you do the radiation then prostatectomies are generally off the table.

I was hoping to find a support group locally where I could talk to others, but sadly in an area even as large as mine, it's very challenging to find one (for some reason).

Thank you.

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

@mspotter1956

I will have my PSMA Pet Scan this Friday, at the Charlton Building, Mayo Clinic. I have been waiting since November 5th, when I discussed possible participation in a study comparing outcomes between Tulsa Pro Ultrasound Ablation and Radical Prostatectomy. Of every three participants, two will get Tulsa Pro, and the other will get prostate removal. Providing I qualify, after the PET-CT Scan, a computer will select me for one treatment or the other. I also have a radiation consultation on January 2nd. I was diagnosed with prostate cancer on October 11, 2024. They found five lesions: a 6mm Gleason 7 4+3 with 20% core sample cancerous, a smaller Gleason 7 3+4 with 25% core sample cancerous, and three smaller Gleason 6 3+3's with 15% or less cancer in the cores. They took 20 cores altogether, 5 with cancer, one with abnormal cells, and 14 with benign prostatic tissue.My last PSA was 5.8. My last DRE was smooth with no nodules. My Telsa 3 MRI showed no suspicious lesions in the pelvis, bones, or lymph nodes. Since diagnosis, and during the wait for my PSMA PET Scan, I haver poured over many Youtube Videos on Prostate Cancer, and treatments. It is reassuring that my cancer will likely be cured, but, I feel pretty down about what treatment will do to me. I wish I could just do active surveillance, but my doctor does not recommend that because of my 4+3. I wish there was someway to stop the cancer from growing and spreading, by diet and exercise. After reading an NIH study that showed a link between eating 2.5 eggs a week or more and a 81% increaded risk of LETHAL prostate cancer, I have quit eating eggs ( since October.) I have quit eating all red and processed meats, all dairy, and an now on a mostly plant based diet. Since prostate cancer usually grows slowly, I am wondering if I can slow it down further, or stop it altogether by my diet? This may all be a waste of time, and it has been pretty depressing. I am not ready to give up my sex life and not ready to have chronic urinary incontinence. I am hopeful that treatmet at the Mayo Clinic will improve my chances of avoiding permanent or severe side effects. I am 68 years old, in good physical shape, and sexually active with no problems. Is there reason for hope with all of this? Have some of you done well with treatment? Anyway, thank you for reading all of this...

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I read that study and my conclusion is: eat the eggs!
There were 675 fatalities due to prostate cancer out of over 872,000 person years. That’s a super low percentage and they pinned it on the highest choline intake? It could have been the same numbers for ANY ingested compound at that rate or maybe even higher.
That article was from 2012, the same year that another NIH paper claimed NO causation for PCa from eggs…..A lot of these ‘scientific’ papers work by postulating a theory - eggs cause cancer - and then magically find numbers to support that theory. In fact, this was not a double blind study and more importantly, did not tackle the question of how the eggs were prepared: boiled, fried in butter, fried in margarine, Crisco, olive oil? Eaten in a souffle??
I think you see what I am saying. Perhaps those things caused the cancer and not the eggs. Association is not causation…

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@heavyphil

I read that study and my conclusion is: eat the eggs!
There were 675 fatalities due to prostate cancer out of over 872,000 person years. That’s a super low percentage and they pinned it on the highest choline intake? It could have been the same numbers for ANY ingested compound at that rate or maybe even higher.
That article was from 2012, the same year that another NIH paper claimed NO causation for PCa from eggs…..A lot of these ‘scientific’ papers work by postulating a theory - eggs cause cancer - and then magically find numbers to support that theory. In fact, this was not a double blind study and more importantly, did not tackle the question of how the eggs were prepared: boiled, fried in butter, fried in margarine, Crisco, olive oil? Eaten in a souffle??
I think you see what I am saying. Perhaps those things caused the cancer and not the eggs. Association is not causation…

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I think this is totally valid.

Nobody discounts that something might make cancer better or worse because none of us know and doctors don't know. They know what they have tested, so some things have been debunked, but there's probably someone out there that will say that wearing flip flops makes a difference, and who is to say they are wrong?

On the other hand, who is to say that eggs aren't Gods gift to slowing cancer? Since deep and encompassing studies haven't been done, it can go either way.

One thing I've learned in both of my cancer journeys is that there is no shortage of remedies for cancer because it's a terrible disease and everyone wants the magic "thing" that fixes it for them. And guess what, if you feel it fixes your problem and there's no science saying that it does the opposite then go for it! I'll eat lima beans if I must (man I hate lima beans) if I thought it had a 1% chance of being effective because I can control 1%. It's why I'm killing myself with my trainer - it gives me just a bit of control where before I had none.

I read a very in-depth study of some alternative forms of treatment that were debunked twenty ways from Sunday last night and people still hold on tight to them purely out of confirmation bias, despite them being less successful. We all want that magic thing that fixes our cancer, doesn't impact our quality of life and basically leaves us just the way we are pre cancer with very little to no impact. I'd give all the money I have for that.

Eggs are funny in their history of being good or bad. They were Gods gift, then they were Satans curse, then Gods gift then Satans curse. I don't think any food item has experienced as much flipping and flopping over the decades than the poor old egg. To me it equates to one thing: nobody really knows.

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@heavyphil

I read that study and my conclusion is: eat the eggs!
There were 675 fatalities due to prostate cancer out of over 872,000 person years. That’s a super low percentage and they pinned it on the highest choline intake? It could have been the same numbers for ANY ingested compound at that rate or maybe even higher.
That article was from 2012, the same year that another NIH paper claimed NO causation for PCa from eggs…..A lot of these ‘scientific’ papers work by postulating a theory - eggs cause cancer - and then magically find numbers to support that theory. In fact, this was not a double blind study and more importantly, did not tackle the question of how the eggs were prepared: boiled, fried in butter, fried in margarine, Crisco, olive oil? Eaten in a souffle??
I think you see what I am saying. Perhaps those things caused the cancer and not the eggs. Association is not causation…

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From Microsoft Copilot: Recent research continues to support the findings of the 2012 NIH study linking egg consumption to an increased risk of lethal prostate cancer. For example, a 2022 Cleveland Clinic study found that men with increased choline intake (primarily from egg yolks) had almost twice the risk of lethal prostate cancer compared to controls.
While some studies suggest a link between egg consumption and prostate cancer risk, it's important to consider the overall dietary pattern and other lifestyle factors. It's always a good idea to discuss dietary concerns with your healthcare provider.

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@mspotter1956

From Microsoft Copilot: Recent research continues to support the findings of the 2012 NIH study linking egg consumption to an increased risk of lethal prostate cancer. For example, a 2022 Cleveland Clinic study found that men with increased choline intake (primarily from egg yolks) had almost twice the risk of lethal prostate cancer compared to controls.
While some studies suggest a link between egg consumption and prostate cancer risk, it's important to consider the overall dietary pattern and other lifestyle factors. It's always a good idea to discuss dietary concerns with your healthcare provider.

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The trouble with isolated studies — no matter how credible the source — is that they more often uncover an accidental correlation rather than a direct causation: e.g. men who enjoy eating a lot of eggs and men who have a higher risk of advanced PCa have some other, unknown trait in common (genetic, physical, or otherwise).

(Also, CoPilot can be a useful tool, but apply a lot of healthy scepticism to its results. Generative AI mindlessly parrots information on the web, right or wrong, and then introduces its own errors to make it a bit like a game of broken telephone. Experimenting with ChatGPT, I've been able to generate exactly opposite responses about PCa just by rephrasing my question slightly. 😕)

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Thank you for your reply, good to know. The AI recently provided very depressing stats about surving prostate cancer, which are no where near what they really are....

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@mspotter1956

From Microsoft Copilot: Recent research continues to support the findings of the 2012 NIH study linking egg consumption to an increased risk of lethal prostate cancer. For example, a 2022 Cleveland Clinic study found that men with increased choline intake (primarily from egg yolks) had almost twice the risk of lethal prostate cancer compared to controls.
While some studies suggest a link between egg consumption and prostate cancer risk, it's important to consider the overall dietary pattern and other lifestyle factors. It's always a good idea to discuss dietary concerns with your healthcare provider.

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If you read that study even the top researcher said “we found an association, which does NOT mean causation” and he said it twice.
Also, the gut biome - and associated gut flora (bacteria SPECIFIC for each individual) - was a key component of the entire study. So maybe certain bacteria are causing the cancer and the choline is an innocent bystander?
Also in the later part of the study, they say that men who eat more eggs tend to eat more meat and dairy and less fish and vegetables….Where in God’s name do they come up with that ridiculous statement!? You can infer one from the other?? If I only wear black socks I am clinically depressed?? C’mon guys, give me a break!
Even if this was based on a questionnaire, most men probably don’t know the frequency of anything they eat…more junk science, more internet repetition of the same flawed study over and over

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My take is kind of generic, and already stated: if YOU THINK something will help or hurt then change your life to accommodate that belief, so long as you cannot cite anything that says it will hurt you then there's no harm.

I'll wear a tutu, standing on my head, balancing a ball on my big toe if I think that will help. What I do know is that, aside from looking very silly doing it, it's unlikely to make anything worse.

The point being is that even if science cannot back up your belief, the mind is a very powerful thing and you never know if you are helping yourself simply by believing strongly in it. At the very least it makes you feel better about your disease and in what circumstance can that be taken to be anything other than good?

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@survivor5280
I did not have prostate removal and did not want to treat my cancer that way. It is a personal decision though that you should make yourself. What is best for one will not be best for you.

I see you had the Decipher test. It came back aggressive. Were you offered PSMA? If not asked about it. It will help determine if cancer has spread outside of prostate. That test is going to help you and your providers be able to offer your appropriate treatments.

I am not sure where you live but is the medical providers you have gone to a major medical facility that has extensive experience in prostate cancer treatments and diagnosis. If not I would consider getting another opinion and I know that would be 3 but it would help you decide since you are reluctant still about what is best for you.

Research all the side affects of surgery and then all the side affects of radiation. With agressive Decipher they are probably suggesting hormone treatments as well. That too can really affect you.

I had proton radiation (30 rounds) after 3 different consultations and 2 opinions on biopisies, Gleason Score, and Dechipher test. I had the biopsies, Decipher test, bone scan done at Mayo. I had the PSMA done at UFHPTI where I had my second opinion done. I had my 3rd consultation with my PCP at Mayo who went over both consultations with me to help decide what was best for me.

My radiation worked. The goal was to get my PSA to below 1. That was done within the 1st year after treatment ended. I had very little side affects and I believe that was due to my PCP and I going with Proton radiation as a major experience medical provider in proton radiation treatments. I have a PSA test every 3 months to monitor my PSa. A 3 months recurring medical appt. with my PCP and a yearly check up with R/O who does the DRE and medical exam as well as extensive medical exam and questionare. I have my next PSA the end of December.
Good luck to you!!

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@mspotter1956

Thank you for your reply, good to know. The AI recently provided very depressing stats about surving prostate cancer, which are no where near what they really are....

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"The AI recently provided very depressing stats about surving prostate cancer, which are no where near what they really are...."

Yes, generative AI just parrots what it finds online using a massive system of word association. It can be helpful when used with care and a big dose of healthy scepticism, but there's no actual reasoning behind it. Change one word and it might reverse its answer.

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@survivor5280

I realize that a forum like this one doesn't have a lot of folks who had outstanding outcomes hanging around, because it tends to no longer be needed (although there are always those that want to spread the positive word so this is not always the case), but it sure is depressing to read how many people have a recurrence of the cancer after just a few years and end up having to go on radiation or hormone therapy. That honestly scares the crap out of me, to think I go through this nightmare only to have to start a whole new nightmare a few years later. It seems like most of the accounts I read of the cancer returning are only after a few years.

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Hi Survivor! Good points. I vividly remember the thoughts, fears, emotions of every stripe. All of that is valid and very real.

I wrote something very similar to yours prior to my surgery in Sept ‘23. That’s when my Mayoclinic friend, Michael, sent me the encouragement I so needed to hear at that time. I want to share that same sentiment with you.

It seems you have done the research/reading/consultation that you needed to do and have made the decision that’s right for you. We can’t predict the future (I sure didn’t see PCa in my future) but, I believe, we can influence that future. With Michael’s encouragement, I turned my thoughts to positive thinking about my outcomes. I read “Life After Prostatectomy” by Vanita Gaglani about regaining continence and followed it diligently.

My surgery went well. The catheter was inconvenient (at times uncomfortable) but very short-term. Thankfully, it wasn’t a big deal for me. I’m glad I didn’t focus on it pre-surgery. My continence returned very quickly. Thankfully, my ED was short-lived (although I was prepared to surrender this part of my life in exchange for removing the invader and getting to spend more time with my 4 (soon to be 5) grandkids.

In short, good things/results can happen. Try to focus on them and encourage them to happen. It’s much more fun than focusing on negative outcomes that may never happen…and I believe it can only help.

Best of luck to you, brother. I hope and pray that your results are all positive. I look forward to reading of your good results in a couple of months.

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