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Prostatectomy Question? Side effects outweigh benefits?

Posted by fuzzy123 @fuzzy123, Jul 30, 2023

My doctors told me they no longer due Prostatectomies as the side effects far outweigh the benefits !! But I see many of you are ??? And some are still getting them done at the Mayo Clinic and other Medical Centers !!!
So who is right and who is wrong here ???
I had 44 external beam radiation treatments!!

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hbp | @hbp | Aug 13, 2023

Jim I think that you did the right thing. Good Luck for a long and happy life!

REPLY
hbp | @hbp | Aug 13, 2023

If you elect radiation and if the cancer returns then surgery after radiation is not usually an option. Surgery first reserves the option of radiation. I think that prolonging life ( providing quality ) is the most important thing. That is why I elected RP to keep as many options as possible. Good Luck

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jm23 | @jm23 | Aug 14, 2023
In reply to @ozelli "Would you recommend your path for other future readers? Be honest." + (show)
@ozelli

Would you recommend your path for other future readers? Be honest.

Jump to this post

I am still in the research phase and my situation is unique from what I understand but I am getting a second opinion.

I still prefer the RP route from my research so far as it leaves Radiation Therapy on the table in case you need it down the road after surgery but if you take Radiation Therapy the RP is typically no longer on the table as an option as it becomes too risky.

Hope this helps.

REPLY
1 reply
ozelli | @ozelli | Aug 14, 2023
In reply to @jm23 "I am still in the research phase and my situation is unique from what I understand..." + (show)
@jm23

I am still in the research phase and my situation is unique from what I understand but I am getting a second opinion.

I still prefer the RP route from my research so far as it leaves Radiation Therapy on the table in case you need it down the road after surgery but if you take Radiation Therapy the RP is typically no longer on the table as an option as it becomes too risky.

Hope this helps.

Jump to this post

What you say is indeed true but the cure rates are very similar and while you can’t usually do surgery after radiation, there are other options on the table.

Just my opinion but the given the equal cure rates, side effects should be the main driver in decision making here.

Consider this…even with the very best of surgeons from centers of excellence the incontinence rate after 1 year post RALF is nearly 20%. It is a bit like the Mike Tyson quote that “everyone has a plan until they get punched in the face”. That is a lot like testosterone enabled but just diagnosed men. We think we are unbeatable. We think we are sure to be part of that other 80%. We really need to become better mathematicians and look at the probabilities.

Still, I am only expressing my own opinions and I have been wrong about many things many times. Married twice so that in itself should be indicative of my many flaws.

I just want folks to hear things from all sides.

REPLY
1 reply
glennh23 | @glennh23 | Aug 14, 2023
In reply to @jm23 "Hello all, I was doing research to seek information on what others have done to evaluate..." + (show)
@jm23

Hello all, I was doing research to seek information on what others have done to evaluate this important decision. I was just recently diagnosed with a very rare type of aggressive prostate cancer with mostly gleason 8’s & 9’s and a PSA of 3.5 which baffled the doctors. I’ve been doing regular blood tests and at no point had it gone up or increased.

Bone scan and PETscan came back clean with no signs of spreading. Trying to evaluate my path and like others here have stated, due to the option to have radiation after surgery I am leaning towards surgery. It’s tough to decide what option is best weighing the side effects, but having radiation as a backup seems like a good move as the Surgeon said they will not remove the prostate if we choose the radiation path.

My concern is, if the cancer has spread and so far is undetected why don’t the surgeons offer radiation in addition to surgery for the surrounding tissue now instead of waiting to see where it shows up? Also, since my PSA levels and never been an indicator I may need to do a PETscan or Bone Scan to detect it in the future.

Also, with so much cancer in the prostate can any of the cells escape into the body and land elsewhere?

Thanks in advance. I appreciate reading everyone’s experience here.

Jump to this post

Hi there if you go down the surgery way I would recommend that you get your PSA tested every six month. I wasn't told that if my PSA level went up above 0.01 action needed to be taken but they didn't take any and it was too late for me I am now stage four and it has spread to my lymph nodes. So I hope you take my message on board thank you very much

REPLY
3 replies
ddun1953 | @ddun1953 | Aug 14, 2023
In reply to @jm23 "Hello all, I was doing research to seek information on what others have done to evaluate..." + (show)
@jm23

Hello all, I was doing research to seek information on what others have done to evaluate this important decision. I was just recently diagnosed with a very rare type of aggressive prostate cancer with mostly gleason 8’s & 9’s and a PSA of 3.5 which baffled the doctors. I’ve been doing regular blood tests and at no point had it gone up or increased.

Bone scan and PETscan came back clean with no signs of spreading. Trying to evaluate my path and like others here have stated, due to the option to have radiation after surgery I am leaning towards surgery. It’s tough to decide what option is best weighing the side effects, but having radiation as a backup seems like a good move as the Surgeon said they will not remove the prostate if we choose the radiation path.

My concern is, if the cancer has spread and so far is undetected why don’t the surgeons offer radiation in addition to surgery for the surrounding tissue now instead of waiting to see where it shows up? Also, since my PSA levels and never been an indicator I may need to do a PETscan or Bone Scan to detect it in the future.

Also, with so much cancer in the prostate can any of the cells escape into the body and land elsewhere?

Thanks in advance. I appreciate reading everyone’s experience here.

Jump to this post

I had mine removed 11 days ago. Gleason 8, On the Margin too, PSA was 6.9
I did not want cancer sitting in my body so the CAT said no spread as well as the Bone Scan. The Surgeon feels he got it all. Had 1 Lupron Shot 3 mo. and will do that for 12-18 months and have some radiation as well as the Lupron starves any cancer running around and the radiation poisons the rest. i meet with the Surgeon on the 24th to review latest blood PSA and also the Lab on the Margin part of the prostate and also the two lymph nodes that they took. This chit wants to kill like a Great White Shark so be aggressive at your data you shared. You only have 1 life.

REPLY
1 reply
gkm | @gkm | Aug 14, 2023
In reply to @glennh23 "Hi there if you go down the surgery way I would recommend that you get your..." + (show)
@glennh23

Hi there if you go down the surgery way I would recommend that you get your PSA tested every six month. I wasn't told that if my PSA level went up above 0.01 action needed to be taken but they didn't take any and it was too late for me I am now stage four and it has spread to my lymph nodes. So I hope you take my message on board thank you very much

Jump to this post

I believe it is standard practice to have quarterly PSA's post surgery. Post surgery; action is required at .100 - ,200, not .010.

REPLY
hbp | @hbp | Aug 14, 2023

JM I am G 9 aggressive advanced CR did RP lupron and Erleada for 13 months All went well. I chose my best option for living a good life as long as possible. This will be my test if and when this damn PC advances.

REPLY
jm23 | @jm23 | Aug 14, 2023
In reply to @glennh23 "Hi there if you go down the surgery way I would recommend that you get your..." + (show)
@glennh23

Hi there if you go down the surgery way I would recommend that you get your PSA tested every six month. I wasn't told that if my PSA level went up above 0.01 action needed to be taken but they didn't take any and it was too late for me I am now stage four and it has spread to my lymph nodes. So I hope you take my message on board thank you very much

Jump to this post

This is one of the things that makes my situation different from other cases. My PSA never increased at any point so my PC was not detected. I only found out due to the fact that I had difficulty urinating and after taking 3 months of two different antibiotics back to back I had a biopsy that came back positive for PC Gleason 8’s and 9’s.

REPLY
jm23 | @jm23 | Aug 14, 2023
In reply to @ozelli "What you say is indeed true but the cure rates are very similar and while you..." + (show)
@ozelli

What you say is indeed true but the cure rates are very similar and while you can’t usually do surgery after radiation, there are other options on the table.

Just my opinion but the given the equal cure rates, side effects should be the main driver in decision making here.

Consider this…even with the very best of surgeons from centers of excellence the incontinence rate after 1 year post RALF is nearly 20%. It is a bit like the Mike Tyson quote that “everyone has a plan until they get punched in the face”. That is a lot like testosterone enabled but just diagnosed men. We think we are unbeatable. We think we are sure to be part of that other 80%. We really need to become better mathematicians and look at the probabilities.

Still, I am only expressing my own opinions and I have been wrong about many things many times. Married twice so that in itself should be indicative of my many flaws.

I just want folks to hear things from all sides.

Jump to this post

Thanks for your opinions as all are welcome. We are all in this together so to say so it’s helpful to share our experiences and knowledge.

The only options I am aware of at the moment after radiation is Cryosurgery and Hormone Therapy which the clinical oncologist told me I would be taking for the rest of my life (6 months on and 6 months off). This did not sound like an option I wanted to consider.

REPLY
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