My Gleason score is 7 - 3+4. How long can I live without treatment?

Posted by mayoclinicadvice23 @mayoclinicadvice23, Jun 11, 2023

My Gleason score is 7 - 3+4,. How long can I live without treatment? Since I decided not to get any treatment, because of horrible side effects, I was wondering, if someone who experienced the same condition, will share his experience with me.

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@joecontheroad

mayoclinicadvice23, THIS IS NOT ADVICE -- I believe that every instance of PCa is unique to that individual. But in response to what you were asking, I am sharing my unique experience.

I went approximately 20 years post-biopsy diagnosis without treatment. The initial diagnosis was 3+3 and surgery was recommended. A couple of years later, after a second biopsy, the diagnosis was 3+4, with treatment highly recommended. (I don't remember one or another treatment being particularly recommended.)

I went ~20 years from that first biopsy until I decided to have treatment, when my psa had reached 56, as I remember, after some 8 years without any PCa-oriented testing. (I can not tell you why I waited: I don't know, other than I was worried that each treatment I had been offered might too negatively affect *my individual lifestyle*.)

Again, I emphasize that this was *my individual experience*; in participating in many groups and attending numerous conferences, I have not encountered anyone else who has similarly avoided treatment.

To add to what you asked, as I imagine all readers will wonder, at -76 years old, a PSMA PET scan showed cancer in the prostate and (had advanced?) in some pelvic lymph nodes, and I started (only) ADT (though radiation treatment was also highly recommended), which after a problem and discontinuance with abiraterone, and several treatments with Lupon followed by 6 months of pause, the psa seems to be rising -- so far only somewhat, but perhaps significantly.

Best of luck to you (and to me and to all!) in whatever you decide!

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Can I ask why no radiation? I just had 25 rounds at Sloan and it was nothing. The worst ( if I can even call it that!) part is figuring out the bladder and bowel prep. Side effects minimal.
Sure, maybe years out they will develop, but I might not have gotten those years without the treatment.
Being on ADT for the rest of your life - which rising PSA indicates- can possibly be even more hazardous to your health.
Not criticizing or judging your personal decisions. Mine are different, that’s all. You’ve really been quite fortunate to go 20 yrs without treatment and no one can deny that the gamble you took really paid off.
Best of luck on whatever you decide!
Phil

REPLY

mayoclinicadvice23, THIS IS NOT ADVICE -- I believe that every instance of PCa is unique to that individual. But in response to what you were asking, I am sharing my unique experience.

I went approximately 20 years post-biopsy diagnosis without treatment. The initial diagnosis was 3+3 and surgery was recommended. A couple of years later, after a second biopsy, the diagnosis was 3+4, with treatment highly recommended. (I don't remember one or another treatment being particularly recommended.)

I went ~20 years from that first biopsy until I decided to have treatment, when my psa had reached 56, as I remember, after some 8 years without any PCa-oriented testing. (I can not tell you why I waited: I don't know, other than I was worried that each treatment I had been offered might too negatively affect *my individual lifestyle*.)

Again, I emphasize that this was *my individual experience*; in participating in many groups and attending numerous conferences, I have not encountered anyone else who has similarly avoided treatment.

To add to what you asked, as I imagine all readers will wonder, at -76 years old, a PSMA PET scan showed cancer in the prostate and (had advanced?) in some pelvic lymph nodes, and I started (only) ADT (though radiation treatment was also highly recommended), which after a problem and discontinuance with abiraterone, and several treatments with Lupon followed by 6 months of pause, the psa seems to be rising -- so far only somewhat, but perhaps significantly.

Best of luck to you (and to me and to all!) in whatever you decide!

REPLY
@bobbygene

I'm 78 and had a Gleason score of 7 4+3 and PSA climbed to 7.5. My Dr. told me I had a 100% chance to live 5 more years doing nothing and 85% chance to live 10 more years doing nothing. But during those years how much would I suffer from spreading cancer before it took me? I chose to have the TULSA PRO procedure and relieve the worry of cancer spreading. I'm in good health and am active. If I was in ill health and unable to do the things I like doing my choice may have been to do nothing. The Dr. told me that all the cancer was ablated. The treatment was easy and painless with no anticancer medication. I return in March for PSA test and followup. I feel good about my decision and hopefully the cancer won't return.

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I am 66 years old and chose Tulsa Pro in July 2024 at Mayo Clinic Rochester. Just had my six month MRI and it shows no sign of cancer. PSA dropped from 8.6 to 0.96. My radiologist says my results are excellent. As bobbygene stated, the procedure was painless and I have had zero side effects. An added benefit is I only have to get up one time a night to pee!

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I'm 78 and had a Gleason score of 7 4+3 and PSA climbed to 7.5. My Dr. told me I had a 100% chance to live 5 more years doing nothing and 85% chance to live 10 more years doing nothing. But during those years how much would I suffer from spreading cancer before it took me? I chose to have the TULSA PRO procedure and relieve the worry of cancer spreading. I'm in good health and am active. If I was in ill health and unable to do the things I like doing my choice may have been to do nothing. The Dr. told me that all the cancer was ablated. The treatment was easy and painless with no anticancer medication. I return in March for PSA test and followup. I feel good about my decision and hopefully the cancer won't return.

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At 3+4 there are many treatment offerings for sure . Up to you and your Dr's what is best for you. I think you said you're 70 . What did your RO( Radiation oncologist) day ? I am not a Dr , but feel you should closely monitor it . Doing nothing may NOT be a option IF you want a longer life per se . Your biopsy after operation could prove interesting too , if you went this way . God Bless Sir . Keep us informed of your case .

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@graybeard46

I should have joined this group before I decided my path . You seem like you’ve done your homework. My bad that I canceled my oncologist appointment feeling confident that surgery first was the best choice for me . I asked my Radiologist today why wouldn’t they do a pet scan before doing the surgery. His response was the MRI showed the suspicious area did not go beyond my prostate. Wonder if cost was a factor? I have another question that I would appreciate comments on , my hormone shot 3 weeks ago have kicked in and the emotional swings that I have started to have at times are difficult to deal with. I’m supposed to get a second shot when my radiation is done. If my PSA ends up 0 , is the second shot really necessary. I will discuss this with Dr in detail before I agree. I’ve survived many tragedies in my life , personal, military, etc . And was able to stay strong without giving up in to depression but this cancer and the effects of hormone treatment make staying positive very difficult. Thanks Heavyphil

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Hey Graybeard, yes, I did a lot of homework because being in health care made me privy to a lot of horror stories. If I had anything at all I could do to help myself I was gonna do it and gaining as much knowledge as I could helped me ask the important questions.
I cannot address why you didn’t have a PET SCAN. My MRI 5 yrs ago showed no spread yet I insisted on a PET and paid for it out of pocket. If there was something outside the gland I would have said NO to surgery.
But even with that clear scan and a more recent PSMA PET scan - which showed nothing - my PSA still went up and I still needed radiation and ADT, just like you. So me doing my homework while you went fishing didn’t matter all that much, did it??😳
As for your mood swing into depression you really have to speak to your RO about having someone prescribe a mood elevator; I did not experience any depression or down feelings at all but I was on an oral ADT and you are getting injections which many men claim are far worse for mental issues. There are men on this forum who have dealt with this and are sure to reach out if you need them.
I don’t know you personally but from your postings and description of yourself you sound like someone who has lived a full life - in both positive and negative ways; you can’t reach 78 unscathed, right? We all have bad times and tragedy in our lives, but we push thru them, because that’s what we do…
But when you are injected with a chemical that is KNOWN to cause severe depression and even suicidal thoughts, the deck is stacked against you in a really bad way!
You no longer have the ability to rise above, to put on your game face, OK? The chemical is doing this to you. But you need it to treat your illness so please don’t discontinue it unless your doctors days it’s OK to do so.
You can ask your RO to perhaps switch you to Orgovyx - it’s ADT but is a bit less of a mindf***er, and you should be put on a medication to offset and counteract the depression the ADT is/will cause.
You might be of the mindset that you’re tough and don’t need any help with your problems; but hormones take away what makes you YOU, in so many ways more than in just the physical sense. The Graybeard you know is a different guy on hormones so you need to address this ASAP!
Best Always
Phil

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@heavyphil

Hey man, crystal balls would be nice, huh?
If you are saying that you did NOT have a PSMA PET scan BEFORE surgery, I think that’s a big problem. Seeing something outside your prostate would have changed your treatment, for sure.
I hope you got a consult from a Radiation Oncologist BEFORE surgery, or did your surgeon neglect to mention that aspect of treatment??

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I should have joined this group before I decided my path . You seem like you’ve done your homework. My bad that I canceled my oncologist appointment feeling confident that surgery first was the best choice for me . I asked my Radiologist today why wouldn’t they do a pet scan before doing the surgery. His response was the MRI showed the suspicious area did not go beyond my prostate. Wonder if cost was a factor? I have another question that I would appreciate comments on , my hormone shot 3 weeks ago have kicked in and the emotional swings that I have started to have at times are difficult to deal with. I’m supposed to get a second shot when my radiation is done. If my PSA ends up 0 , is the second shot really necessary. I will discuss this with Dr in detail before I agree. I’ve survived many tragedies in my life , personal, military, etc . And was able to stay strong without giving up in to depression but this cancer and the effects of hormone treatment make staying positive very difficult. Thanks Heavyphil

REPLY
@graybeard46

Hi Bud, well part of me is grateful for the kick in the ass , sometimes we all need it , yes I had a pet scan which found the cancer that was missed , why not have that before surgery??? Mood swings from hormone shots are real but I’ve worked and played hard all my life and quality of life more important at the moment than quantity, you’re right no one knows how long you might survive without any treatment but if I thought maybe 10 yrs I’d be tempted, good luck luck to you

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Hey man, crystal balls would be nice, huh?
If you are saying that you did NOT have a PSMA PET scan BEFORE surgery, I think that’s a big problem. Seeing something outside your prostate would have changed your treatment, for sure.
I hope you got a consult from a Radiation Oncologist BEFORE surgery, or did your surgeon neglect to mention that aspect of treatment??

REPLY
@graybeard46

I would ask several Drs. How long you might have with no treatment, radiation is giving me serious diarrhea every day and meds don’t stop it, mood swings from hormone therapy adding to my feelings of wanting to stop treatment

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Hi Bud, well part of me is grateful for the kick in the ass , sometimes we all need it , yes I had a pet scan which found the cancer that was missed , why not have that before surgery??? Mood swings from hormone shots are real but I’ve worked and played hard all my life and quality of life more important at the moment than quantity, you’re right no one knows how long you might survive without any treatment but if I thought maybe 10 yrs I’d be tempted, good luck luck to you

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@larkhudson

Thanks for this post. I am at the very beginning. No surgery decision yet. 75 years old. Considering what to do. Surgery? No treatment? How many years without treatment?

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I would ask several Drs. How long you might have with no treatment, radiation is giving me serious diarrhea every day and meds don’t stop it, mood swings from hormone therapy adding to my feelings of wanting to stop treatment

REPLY
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