Radiotherapy clinical trial opinions - Advanced Prostate...

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Radiotherapy clinical trial opinions

Chubby42 profile image
17 Replies

Hi everyone.

After having my prostate removed on the 29th March 16, my urologist referred me to an oncologist for a clinical trial as I'm in a slightly higher rish of the cancer returning my Gleeson score was 4+3 my PSA 7.5.

After the operation the urologist said they got all of the cancer but as it was ready to break through the prostate wall they was not sure if some tiny amount eacaped or not so they have suggested a clinical trial where 50% of us will have radiotherapy and 50% will not these are people who have just had their prostate removed and are in the slightly higher risk of having it come back.

Should i go for this hoping it kills off any cancer cells if there are infact any remaining or do i say no and hope the cancer never returns, with this trial there is no guarantees and the cancer may still return anyway.

Do i put myself through Radiotherapy anyway or do i sit back and just hope it never returns, i know the decision is mine but i just wouldn't mind others opinions, my wife is a bit freaked out as to why i would go ahead but i think she is not thinking long term enough.

Any advise would be greatly appreciated.

Many thanks


17 Replies
YostConner profile image


My surgery was not curative, and I had radiation within a few months. There are potential side effects--some long term--though if it would give you peace of mind, that's a major consideration. You must consider your wife's concerns. Ultimately though you are making decisions about your life. I wish you well with your decision.

pjoshea13 profile image

Hi Gary,

It appears that the procedure was successful but your risk for biochemical recurrence is "slightly higher" than normal (you provided no details.)

In the trial you mention, treatment will be made - in essence - based on the toss of a coin. You could use the same approach right now (LOL). My inclination would be to decide based on information rather than chance.

Why would anyone jump the gun with salvage radiation? If your cancer is deemed to have high metastatic potential, that would seem to be a good reason. But I'm not sure I'd otherwise act preemptively.

The Decipher test [1] calculates the probability of clinical metastasis within 5 years of radical prostatectomy surgery, and within 3 years of successive PSA rise (biochemical recurrence).

Might be all you need to make the decision.

(I hope I understood the situation.)



Chubby42 profile image
Chubby42 in reply to pjoshea13

Hi guys thanks for the replies i don't have much information other then they said i had a medium aggressive cancer and had a %75 chance of it comming back due to that + the fact it was close to breaking through the prostate wall even though it hadn't broken through.

So on that basis they are offering the clinical trial which has no record of success and my cancer still may return. Conversely the cancer which was contained in the prostate none may have escaped at all and my cancer may never come back but its a low chance.

I still can't get an erection since my Op 10weeks ago the problem im worried about is been totally and permanently urinal and bowel incontinence.

Cheers and thanks again


Chubby42 profile image

P.s they want me to say yes or no to the clinical trial within a week.


pjoshea13 profile image
pjoshea13 in reply to Chubby42

Hi Gary,

They say there is a 75% chance of biochemical recurrence - within 5 years?

Which means that there is a 25% chance that you would not need salvage radiation in whatever that period is.

Why the pressure for preemptive radiation? I would want to know how it might affect survival. e.g.:

a) what is the probability of surviving 10 years if you get radiation if & when the PSA comes back?

b) what is the probability of surviving 10 years if you get radiation now?

You might discover that this is what the trial is trying to figure out. LOL

If you can't get something tangible, how can you make a decision?

Incidentally, radiation would reduce the probability of a recovery of erections. I can't say how it might affect continence issues.


Chubby42 profile image
Chubby42 in reply to pjoshea13

Hi Patrick

They said they would monitor everyone in the trial over a ten year period so i guess they don't know anything the oncologist told me i had a 1 in 20 chance of having Permanent bowl incontinence and i would also have permanent erectile dysfunction to be honenst the oncologist didn't try at all to make it sould like there was any benefit to having it I came out feeling quite pissed off to be honest, they just want to see if there is any benefit to having radiotherapy now instead of waiting for cancer to come back before doing the radiotherapy.

What if my cancer never comes back ? I know its wishfull thinking with only a 25% chance, she couldn't give me any better % of it not coming back if I did go ahead with the trial.

Anyway thanks for your reply and opinion m8.


jgmcbride profile image

I had my prostate removed in 2010 and it was followed by radiation treatment afterwards. The actual radiation treatment was really no big deal. I just never felt anything during the procedure.

Since I am writing this some six years later then I am still around.

I can not get an erection but I have learned to live with that.

Hope that this helps you in your decision making process and I wish you well.

Chubby42 profile image
Chubby42 in reply to jgmcbride

Hi jgmcbride

Nice to hear your doing ok thats great and your cancer hasn't returned which is what I'm hoping for, the Oncologist made it sound pretty scary but to be honest she was probably just stating the worst case scenario.

Was your treatment for 6 weeks ? & did you continue to work while you was having the treatment?

My erections have yet to return since the Op which i could live with too i guess its just the Permanent bowl incontinence im worried about, still thats a 1 in 20 chance of that.

How long did the side effects last after the treatment?.

Thanks for your reply m8

jgmcbride profile image


I had a total of 36 radiation treatments about six weeks after my operation. I was retired at the time of treatment (now 72 - closer to 73) so work was not a concern. I could have worked though. The challenge would be having a full bladder before each treatment. Once you are on the table the whole process takes maybe five minutes or less. I just tuned things out and the time passed quickly.

The possibility of bowel problems was mentioned to me as a possible side effect and I have had no problems on that side.

Go ahead with the radiation treatment and do not look back.

Good Luck

Chubby42 profile image
Chubby42 in reply to jgmcbride

Hi jgmcbride i think i will thanks just hope im on the right side of the 50% they give it too in the clinical trial.

Cheers thanks for your thoughts hope you stay clear and healthy.


yope4 profile image

Hi Gary,

What is your post-op PSA? It could be one bit of info you could use. If you have residual PCa, I would think your PSA would somehow bottom out above 0. My own thinking would be to watch and wait for possible recurrence, if your PCa is not very aggressive. Nothing is ever certain when it comes to cancer. Then, there is the quality of life from side effects of any treatments.

In the event of recurrence, you have a metastatic PCa. Local treatment may not be the best option since there is a good possibility you'll still need systemic treatments. So I question the wisdom of going through an experimental radiation when you'll end up doing systemic treatment anyway. If your PCa has broken through, it's a high probability you have mPCa.

I get it, the urgency to exorcise PCa where it's found. But anywhere else in our body, PCa is not conveniently packaged in a capsule. When it's out, it is metastatic. And treatment of mPCa is what I think many onc would call for, not local treatment.

What I shared with you was my experience and it's what I did. PCa was found in my iliac lymph node. Instead of having it removed or irradiated, I went straight to systemic treatment of ADT. And for the unfortunate ones who didn't have their PCa contained in the capsule, it becomes a chronic disease to treat.

Good luck and my best wishes to you.

Chubby42 profile image
Chubby42 in reply to yope4

Hi yope4

My 1st post PSA is 0, if it does comeback after the treatment then i know i have given myself every chance to beat it. This trial may or may not work i know but if im in the slightly high risk category then its worth the risk i think. I would hate to get 5yrs down the road if it returns and hadn't taken this opportunity.

Cheers thanks m8

herb1 profile image


first, when you say your first psa (how many weeks after surgery?) was "0" that's not enough, that should have been an ultrasensitive psa and you want to have at least 2 decimal places in that result. Your doc may have that data, but he hasn't shared it with you.

Second, if you continue to follow your psa, you will know if you need to start radiation. It may be later this year, it may be 9 years down the road. Radiation technology may have advanced significantly.

Third, you haven't told us the planned dosage of radiation and how it will be administered. Again, there may be better and less-better! ways of giving what is called salvage radiation even today; at the least you want to be sure the Trial is using the best ...and the correct dosage for you.

Fourth, yes, you don't feel it, but radiation certainly can have side effects, so it is not an easy decision. Good luck, whichever way you go.

Herb s.

cfrees1 profile image

My urologist used the Decipher test to help me make a decision about follow-up radiation after surgery. My Decipher score was high, so I do have radiation scheduled for July. You might ask about that test. You won't have results for 4 weeks or so, so it won't help you with the decision on the clinical trial but it's a good indicator of likelihood of recurrence. If you choose not to do the trial, I would suggest you ask for the Decipher test to help make a decision on your next step. Good luck!

Chubby42 profile image

Hi cfrees1 thanks i will ask about the test

thanks to everyone for your replies and advice still unsure about this clinical trial as its no longer a short course but 6weeks of normal radiotherapy the same as if the cancer had returned, my wife, family and friends are worried about the possibility of permanent side effects like bowl incontinence as there is still a chance my cancer may never return and i could be having this treatment when not needed.

I have also read having a good diet fruit & veg etc and cutting out sugar would also help to reduce the risks plus taking of vitamins to boost my immune system may also help, at 55 im not sure im prepared to accept permanent side effects even i could live 5yrs of normal life before the cancer returns maybe an acceptable compromise seeing as they can't guarantee having radiotherapy now would stop it from returning anyway.

Not an easy decision.

gourd_dancer profile image

Follow the advice of your medical oncologist. Why are you jacking around? This from someone who's primary treatment went south a little over 12 years ago within a year (Gleason 4+3 and PSA 6.8) with two mets to the spine and a PSA of 32.4....... Immediately took a Lupron injection and enrolled in a chemo trial for six months. I am glad that I did. I my case it mattered not what my primary treatment was, only that mutated cells where flowing in my lymph and vascular systems just looking for a place to land. And I thought a 92% probability of "we got it all" was good......

Keep kicking the bastard,

Gourd Dancer

Chubby42 profile image

Hi gourd_dancer

No one is jacking around i came on here to seek advise, it is a trial that i have agreed to take part the oncologist wouldn't tell me the best course of action as it is a trial 50% have radiotherapy and 50% don't it was totally my decision which is why i came on here to ask for advise, last week i was told im on the 50% who will not be given the radiotherapy and there is nothing i can do about.

Kind regards


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