Radiotherapy clinical trial yes or no

[Chubby42]

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.

So 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

Gary

[Dr_WHO]

I would go with radiation and, if they offer it, hormonal treatments. There is literature showing improved 10 year survival outcomes with this combination vs just radiation or hormonal. However, depending on how agressive your cancer is, you may want to wait a couple of months on radiation until you get full bladder control back. (Hopefully this is not an issue with you.) The radiologist told me that once you start radiation improvements in bladder control may stop. I had surgery this year April 18 (T3N1) when I was 58. In my case it is a rare type of ductal cancer that does not raise your PSA but is highly aggressive. The surgeon, oncologist and radio oncologist all want me to start secondary treatments ASAP. I have started hormonal treatments. I am still having serious leakage issues (about 7 weeks post surgery so not that far out yet). They want to wait a couple of months to start radiation to maximize reabilitation of my bladder first.

[Chubby42 in reply to Dr_WHO]

Hi Dr Who

I had my prostate removed just over 2months ago, i have nearly full bladder control while sitting and laying down i just leak a bit while standing the first few weeks after the catheter came out i had very little control so things are improving.

The oncologist said they would start 4 to 5 months after the removal.

My cancer is a medium aggressive plus the clinical trial is radiotherapy only nothing else plus im 50% chance of been selected as its a trial and they treat some and just monitor the other 50%.

My fingers are crossed.

Thanks for your help & reply.

Gary

[Dr_WHO in reply to Chubby42]

Thank you for the reply. Good luck with the treatment plan you pick. It seems like you have some time to decide. A major thank you for discussing your improved leakage. It gives me hope. I needed it today. (Just had a very major leakage at a public place so I was feeling down. ) Keep an eye on your PSA level. If it starts to climb you may want to ask if you are in the control group.

[Chubby42 in reply to Dr_WHO]

Hi Dr Who no problem m8 i had some major leaks in my earlier days too but they will get less & less keep up with the excercise it will get better. If im not in the 50% who get the radiotherapy ill still be monitored over a 5 to 10 year period.

Cheers

Gary

[JoelT in reply to Chubby42]

Gary,

Great that you are considering this trial, we all need to evaluate trials to see if they might make sense. Clinical trials are the only way we can advance the quality and effectiveness of medicine for our self and for the next generation.

When deciding whether to participate in a trial you must make sure that you have a complete understanding of the potential problems you might face, both if you do participate and if you don't.

In this trial you might have side effects from the radiation. Common side effects of this type of radiation can include urinary issues, bowl problems, rectal bleeding and even a secondary cancer. If the cancer has escaped the gland and you don't have the radiation then you will join us guys with metastatic prostate cancer which have treatments that can bring many significant side effects and possibly death.

There is no correct answer here. You should talk it over with your family. Also, perhaps some others who have had adjuvant radiation might be willing to share their experiences?

Joel

[Chubby42]

Oh does anyone know if i have radiotherapy now does that mean i still can or can't have radiotherapy later if the cancer returns ?

Cheers

[JoelT in reply to Chubby42]

Chubby42,

If you have radiotherapy now as your primary treatment then, no you will not be able to have what is called salvage radiotherapy later if the cancer returns. Most likely your choices would include surgery (which after radiation is difficult, but a really good surgeon can do it, or hormone therapy (ADT). Although I have not heard about it being done as a salvage therapy i might be possible to try HIFU post radiation.

I am at the American Society of Clinical Oncologist (ASCO) meeting right now and there was an important abstract showing that higher, but less doses of radiation was not inferior to conventional RT with no increase in acute or late toxicity. Thus, it is a consideration for men with intermediate risk PC. (meetinglibrary.asco.org/con.... Speak to your doctor about this as a possibility for yourself.

Joel

[Chubby42]

Hi Joelt

So even tho they say the cancer was contained when they removed my prostate but close to breaking through would you think it was a good idea to have radiotherapy now instead of waiting to see if the cancer returns or not. I wad told it was a medium aggressive cancer but there is still a 25% chance im told it may not comeback.

Its a trial i know but do i live with the better quality of life now or take the risk the radiotherapy won't have any permanent side effects other than erections.

Not an easy choice.

Cheers