Expected side effects of adjuvant radiotherapy after prostatectomy?

Posted by soli @soli, 2 days ago

Given my high risk profile of pT3b disease and .75 Decipher score, I expect my surgeon to propose adjuvant radiotherapy when I meet with him next month.

I do have a pretty good idea of the benefits of such treatment administered within a year of the surgery in preventing or delaying very much the recurrence of cancer. But what I am not sure about are the side effects, their likelihood and impact on my quality of life.

Please enlighten me based on your experience so I can weigh the trade offs between the benefits and side effects before deciding one way or another. I am asking this because I am 74 years old - and to me - the quality of life is as, or more important than the absolute number of remaining years of life.

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

I had salvage radiation, which is pretty much identical to adjunct radiation. It was 3 1/2 years after my prostatectomy when my PSA started to rise. I had 7+ weeks of radiation.

I would have the radiation in the morning And go right to work after and work a full day. I never had any side effects. Some people have fatigue others have some urological problems, None of those ever bothered me,

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That is good to know.

It is possible - maybe likely - that different people suffer different side effects. I have heard some people get urinary issues (incontinence, urethral stricture and the need to catherize). Others had irritable bladder. I know at least one person who got serious bowel issues , repeated rectal bleeding , and even rectal blockage. It is possible that the best doctors with the latest radiation equipment may reduce the chance of side effects.

It is good to know if those have serious side effects are what %? Is it 1 %? 10% ? 50%? Also, what is the duration of these side effects? A few months? A few years?

I am looking for studies which quantify that.

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Profile picture for soli @soli

That is good to know.

It is possible - maybe likely - that different people suffer different side effects. I have heard some people get urinary issues (incontinence, urethral stricture and the need to catherize). Others had irritable bladder. I know at least one person who got serious bowel issues , repeated rectal bleeding , and even rectal blockage. It is possible that the best doctors with the latest radiation equipment may reduce the chance of side effects.

It is good to know if those have serious side effects are what %? Is it 1 %? 10% ? 50%? Also, what is the duration of these side effects? A few months? A few years?

I am looking for studies which quantify that.

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@soli almost all those serious Side effects occur when people get radiation as their primary treatment. Adjunct radiation and salvage radiation do not get into the same spots As radiation to the prostate, to cause many of those issues

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Profile picture for soli @soli

That is good to know.

It is possible - maybe likely - that different people suffer different side effects. I have heard some people get urinary issues (incontinence, urethral stricture and the need to catherize). Others had irritable bladder. I know at least one person who got serious bowel issues , repeated rectal bleeding , and even rectal blockage. It is possible that the best doctors with the latest radiation equipment may reduce the chance of side effects.

It is good to know if those have serious side effects are what %? Is it 1 %? 10% ? 50%? Also, what is the duration of these side effects? A few months? A few years?

I am looking for studies which quantify that.

Jump to this post

@soli
I have also heard of a variety of issues

Radiation proctitis
Rectal bleeding
Bladder infection
Breaks in bones - radiation damage to bones
Fibroses in bladder - reduce capacity

I must admit I have not heard this from a lot of people. Very few people in this Mayo7 Clinic forum have reported such serious side effects. They can happen.

I can’t give you any percentages, I suspected may relate to the way the treatment is given in some case cases. Ask the radiation oncologist what percentage of people have issues like these.

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Thanks Jeff.

This is very helpful.

You have been so helpful to me and many in this support group, I felt it was important to thank you with a shout out at the first ancan zoom call I attended.

Again, thanks.

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Hi Soli, it is very hard to know ahead of time how will one's body react to radiation. Same goes with ADT.
However, there is a new test available that is called PROSTOX
https://miradx.com/prostox/
It can predict if you are genetically more sensitive to radiation than average person and than your doctor can adjust the type or strength of radiation per session. It is new and not FDA approved but doctors do order it for their patients. Ask about it !!!!

BTW- salvage and adjuvant can cause short term and long term toxicity and % are in single numbers BUT, I am sure that those 5 % that DO have long term problems do not find that 2-5 % "a small" number any more. Your concerns are legitimate and it is good thing that you want to know all about side effects and so can weight your pros and cons accordingly. When person has rising PSA than there is no dilemma - one has to do what one has to do. In case of an adjuvant it is much harder decision.

Also, there is a difference in toxicity level between adjuvant and salvage especially if person did not heal completely before having a super early treatment ! The earlier you have adjuvant, the more side effects happen. If one still has small incontinence, it is likely to stay that way and same goes for ED.

You will have a chance to go over everything with your doctor and also you may want to have second opinion about your case. There is no rush if your first PSA comes back really undetectable so you are wise to take time to explore all options and than make informed decision.

Wishing you the best of luck and complete success with whatever you decide 🍀🌺🍀

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You should be fine as long as sufficient time elapses for surgical healing to take place (approx 3-6 mos).
We all talk about the quality vs quantity equation, but NONE of us would rather die as opposed to having some minor inconvenient side effects - if you even get them!! Not many do.
As long as you are treated by a top notch RO team and you follow their instructions to the letter, you should be fine.
Besides, do you really want to worry about how long you have to live if you don’t get additional treatment?? That ain’t living, man!
Phil

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Profile picture for surftohealth88 @surftohealth88

Hi Soli, it is very hard to know ahead of time how will one's body react to radiation. Same goes with ADT.
However, there is a new test available that is called PROSTOX
https://miradx.com/prostox/
It can predict if you are genetically more sensitive to radiation than average person and than your doctor can adjust the type or strength of radiation per session. It is new and not FDA approved but doctors do order it for their patients. Ask about it !!!!

BTW- salvage and adjuvant can cause short term and long term toxicity and % are in single numbers BUT, I am sure that those 5 % that DO have long term problems do not find that 2-5 % "a small" number any more. Your concerns are legitimate and it is good thing that you want to know all about side effects and so can weight your pros and cons accordingly. When person has rising PSA than there is no dilemma - one has to do what one has to do. In case of an adjuvant it is much harder decision.

Also, there is a difference in toxicity level between adjuvant and salvage especially if person did not heal completely before having a super early treatment ! The earlier you have adjuvant, the more side effects happen. If one still has small incontinence, it is likely to stay that way and same goes for ED.

You will have a chance to go over everything with your doctor and also you may want to have second opinion about your case. There is no rush if your first PSA comes back really undetectable so you are wise to take time to explore all options and than make informed decision.

Wishing you the best of luck and complete success with whatever you decide 🍀🌺🍀

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Thank you @surftohealth88 for your well reasoned advice. I will definitely look into PROSTOX and will get the test whether insurance pays for it or not: if they don't, I will pay for it like I did over the past decade. with other - then-un-apporved - genomic tests

It is going to be a tough decision for me since my main cocern at this stage of my life (I am 74) is not just (or even primarily) how many more years I live: it is the quality of life of those years.

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Profile picture for heavyphil @heavyphil

You should be fine as long as sufficient time elapses for surgical healing to take place (approx 3-6 mos).
We all talk about the quality vs quantity equation, but NONE of us would rather die as opposed to having some minor inconvenient side effects - if you even get them!! Not many do.
As long as you are treated by a top notch RO team and you follow their instructions to the letter, you should be fine.
Besides, do you really want to worry about how long you have to live if you don’t get additional treatment?? That ain’t living, man!
Phil

Jump to this post

@heavyphil

Thank you for your advice. I do have baseline overactive bladder issues, so one concern I have - among many - is raditation may exacerbate this parttcular problem. But like you said, getting treatment at a top notch RO team is the best way to reduce the risk of serious and lingering sideffects that destroy my quality of life.

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Profile picture for jeff Marchi @jeffmarc

I had salvage radiation, which is pretty much identical to adjunct radiation. It was 3 1/2 years after my prostatectomy when my PSA started to rise. I had 7+ weeks of radiation.

I would have the radiation in the morning And go right to work after and work a full day. I never had any side effects. Some people have fatigue others have some urological problems, None of those ever bothered me,

Jump to this post

@jeffmarc
I should’ve qualified this. While, I had no side effect effects from salvage radiation at the time, Five years later, I started having incontinence problems which have progressively gotten worse in the seven years since. I’m still at one or two pads a day but when I’m walking around, I am leaking

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