1. < Prostate Cancer

Typical Treatment Option Question

Posted by stew80 @stew80, Feb 12 11:30am

My recent biopsy revealed Gleason 9. No lymph node involvement or bone. CT scan was clear for chest, abdomen, and pelvis. No PSMA done. There is Cribriform and Perineural invasion. I attended an information Zoom yesterday and tried to get a handle of what treatment path will work best for me. Albeit healthy, I'm 84 so RP is probably not an option so some kind of radiation and drugs. It's a month before I see my Urologist and I want to be prepared. I wonder if ADT be a given? If so, what drugs (and how many) would I start on? Would radiation be done right away? EBRT or SBRT? How urgent should I push to get going on this? Has anyone been down a similar path with a similar age and aggressive cancer diagnosis. I know we aren't doctors but I guess I'm looking for a typical treatment plan. Just reaching out since I am a bit overwhelmed.

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ajpernsteiner | @ajpernsteiner | Feb 14 4:22pm

Hi..I was gleason 10, and 80 when the pc was found I got on Orgovyx first, after 2 months on, began 45 radiation sessions. The orgovyx worked well, some side effects (fagique, muscle aches, a few hot flashes) I was told 24 months on the adt. After the 45 radiation treatments my psa was undetectable. I continued the adt for 18 months, and took a break. Hope this helps, and good luck with it all.

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1 reply
stew80 | @stew80 | Feb 14 5:21pm

Thanks for this. I checked it out. Did you stop the ADT?

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stew80 | @stew80 | Feb 14 5:25pm
In reply to @ajpernsteiner "Hi..I was gleason 10, and 80 when the pc was found I got on Orgovyx first,..." + (show)
@ajpernsteiner

Hi..I was gleason 10, and 80 when the pc was found I got on Orgovyx first, after 2 months on, began 45 radiation sessions. The orgovyx worked well, some side effects (fagique, muscle aches, a few hot flashes) I was told 24 months on the adt. After the 45 radiation treatments my psa was undetectable. I continued the adt for 18 months, and took a break. Hope this helps, and good luck with it all.

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Hi ajpernsteiner - Would you do it again this way based on the quality of life you have experienced doing it?

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ajpernsteiner | @ajpernsteiner | Feb 14 8:14pm

Yes I would. The orgovyx was not that bad. I added the gym almost daily, protein shakes and some naps. I had a short period of hand pain that copper compression gloves helped. The radiation was pretty simple, and I didn't feel I had any side effects from it. I am very active and do property management and land scaping because I enjoy it. Being gleason 10 is kind of daunting, but it can work out. I do think staying positive and refusing to become just "cancer" goes a long way to keeping quality in one's life.

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breadmaker | @breadmaker | Feb 15 2:02pm
In reply to @spyglass "I am 84; My diagnosis: At least a stage IIIA high risk prostate adenocarcinoma, cT2. Gleason..." + (show)
@spyglass

I am 84; My diagnosis: At least a stage IIIA high risk prostate adenocarcinoma, cT2. Gleason 4+4, 11/11 cores PSA 13.1 My PSMA PET scan "showed no sign of tumor metastases"
I recommend you check out: Citation https:" http://www.urotoday.com/video-lectures/localized-prostate-cancer/video/4525-overtreatement-of-prostate-cancer-persists-in-men-with-limited-life-expectancy-timothy-daskkivich.html&#034;
The subject is the Trifecta method method of counseling patients. Trifecta includes 1) A patient's life expectancy;
2) A patient's cancer prognosis at the time of the patient's life expectancy because it is a time dependent risk;
3) Giving the cancer prognosis with or without treatment.
I have read Trifecta counseling is part of the NCCH guidelines - but I couldn't find them.
You need to know What your prognosis is: if you take treatment or if you don't take treatment My situation was that the aging process was reducing the quality of my life more rapidly every year; I did not want to give up the quality of my life from 84 to 86 to extend my life from 92 to 96 . The article was published after I started the ADT. The side effects of the ADT dramatically affected my ability to participate in my "normal" activities. Get all the information you can; as fast as you can before you start treatment.

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Hopefully this isn't a double post - I accidentally closed out my web browser session before sending.

I just wanted to say that the link to the Timothy Daskkivich video is very informative. He provided some quantitative information to the qualitative knowledge that we all have that PCa is always a trade off between quantity and quality of life.

The link from spyglass didn't work for me. I don't know why since it looks right.

Here's my link. (I'll double check it after posting.)
https://www.urotoday.com/video-lectures/localized-prostate-cancer/video/mediaitem/4525-overtreatment-of-prostate-cancer-persists-in-men-with-limited-life-expectancy-timothy-daskivich.html

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2 replies
jeffMar | @jeffmarc | Feb 15 3:51pm
In reply to @breadmaker "Hopefully this isn't a double post - I accidentally closed out my web browser session before..." + (show)
@breadmaker

Hopefully this isn't a double post - I accidentally closed out my web browser session before sending.

I just wanted to say that the link to the Timothy Daskkivich video is very informative. He provided some quantitative information to the qualitative knowledge that we all have that PCa is always a trade off between quantity and quality of life.

The link from spyglass didn't work for me. I don't know why since it looks right.

Here's my link. (I'll double check it after posting.)
https://www.urotoday.com/video-lectures/localized-prostate-cancer/video/mediaitem/4525-overtreatment-of-prostate-cancer-persists-in-men-with-limited-life-expectancy-timothy-daskivich.html

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That link works

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jeffMar | @jeffmarc | Feb 15 5:59pm
In reply to @breadmaker "Hopefully this isn't a double post - I accidentally closed out my web browser session before..." + (show)
@breadmaker

Hopefully this isn't a double post - I accidentally closed out my web browser session before sending.

I just wanted to say that the link to the Timothy Daskkivich video is very informative. He provided some quantitative information to the qualitative knowledge that we all have that PCa is always a trade off between quantity and quality of life.

The link from spyglass didn't work for me. I don't know why since it looks right.

Here's my link. (I'll double check it after posting.)
https://www.urotoday.com/video-lectures/localized-prostate-cancer/video/mediaitem/4525-overtreatment-of-prostate-cancer-persists-in-men-with-limited-life-expectancy-timothy-daskivich.html

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One thing I noticed about this video is a real conundrum. He recommends highly that the doctor tells the patient what their life expectancy is. Doesn’t matter if they’re elderly, he Highly recommends it be done.

Is there a real problem with doing that? In user group meetings I’ve been in many people are really opposed to giving life expectancy numbers, since they are very frequently wrong. People are living longer with the new treatments.

What do people in this forum think?

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2 replies
heavyphil | @heavyphil | Feb 16 8:04am
In reply to @jeffmarc "One thing I noticed about this video is a real conundrum. He recommends highly that the..." + (show)
@jeffmarc

One thing I noticed about this video is a real conundrum. He recommends highly that the doctor tells the patient what their life expectancy is. Doesn’t matter if they’re elderly, he Highly recommends it be done.

Is there a real problem with doing that? In user group meetings I’ve been in many people are really opposed to giving life expectancy numbers, since they are very frequently wrong. People are living longer with the new treatments.

What do people in this forum think?

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Well, there’s the actuarial number and then there’s all the rest. Fact: The average life expectancy in the US has dropped over the last 5 yrs. But when we are told it is from Covid and Fentanyl overdose that paints a slightly different picture for me.
I had all the Covid vaccines and boosters - and Covid twice! - and I don’t use fentanyl or any other opioid. So why should I be told I only have X amount of years to live? If you remove covid and drug abuse (suicides in there too) the avg expectancy might well be over 80 - for the very reasons of better care you cite.
Age should always be considered in treatment planning but more importantly, the patient’s attitude about it. I know 50 year olds who moan “how much longer do I have anyway?” While my 95 yr old friend still works out on a speed bag!!

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1 reply
stew80 | @stew80 | Feb 16 9:10am
In reply to @heavyphil "Well, there’s the actuarial number and then there’s all the rest. Fact: The average life expectancy..." + (show)
@heavyphil

Well, there’s the actuarial number and then there’s all the rest. Fact: The average life expectancy in the US has dropped over the last 5 yrs. But when we are told it is from Covid and Fentanyl overdose that paints a slightly different picture for me.
I had all the Covid vaccines and boosters - and Covid twice! - and I don’t use fentanyl or any other opioid. So why should I be told I only have X amount of years to live? If you remove covid and drug abuse (suicides in there too) the avg expectancy might well be over 80 - for the very reasons of better care you cite.
Age should always be considered in treatment planning but more importantly, the patient’s attitude about it. I know 50 year olds who moan “how much longer do I have anyway?” While my 95 yr old friend still works out on a speed bag!!

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Exactly!

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clandeboye1 | @clandeboye1 | 6 days ago
In reply to @jeffmarc "One thing I noticed about this video is a real conundrum. He recommends highly that the..." + (show)
@jeffmarc

One thing I noticed about this video is a real conundrum. He recommends highly that the doctor tells the patient what their life expectancy is. Doesn’t matter if they’re elderly, he Highly recommends it be done.

Is there a real problem with doing that? In user group meetings I’ve been in many people are really opposed to giving life expectancy numbers, since they are very frequently wrong. People are living longer with the new treatments.

What do people in this forum think?

Jump to this post

@jeffmarc Show me someone who can predict ones life expectancy . And I will show you someone richer than Elon M. THEY DON'T EXIST . I'm 85 and can outpace most men in their 50's & 60's . People do not believee I'm 85 -- yet I could drop dead before I finish this post
As James Dean said : " Dream that you will live forever -- Live like you will die tomorrow "
Cheers , I must run and have my Double Single Malt .
As they say in Ireland : People are dying today - Who never died before .

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