Treatment after Prostatectomy

Hello Wife of Toronto Man,

Welcome to the forum. Sorry you needed to look for us but glad you found us. Hope we can help.

There is some research that shows that radiation accompanied by a period of hormone therapy is more likely to result in a durable remission than adjuvant radiation alone. But the question of how long the androgen deprivation should last is still an open subject for debate and research (thus the study your husband was invited to join).

With high-Gleason cancers like your husband's and like mine my knee-jerk is to treat early and aggressively. My medical oncologist likes a duration of 24 months -- a two year sentence, about what you get for stealing a car... hard time, for sure, but doable) but we have other guys here who did longer or shorter stints of HT along with their radiation.

Second opinions are always in order. Any of those institutions you mentioned would be an excellent place to get one.

I think he is getting excellent advice from his doctors. Princess Margaret Hospital in Toronto is one of the leading prostate cancer hospitals in the world, imho. Sunnybrook Hospital in Toronto is excellent for radiation oncology. If you have the wherewithal to travel for second opinions, it's certainly worth hearing, but I don't think anyplace in the US has better doctors.

Because his pathological stage was not T3 or T4 and there were no positive margins, it raises suspicion that the cancer is not local, and may be micrometastatic and systemic. Your doctor is also correct that the length of hormone therapy following radiation has not been definitively established. Most would start him with 2 months of hormone therapy before the salvage radiation, continue it through the 7 weeks of radiation, and then keep going for a while afterwards. That clinical trial will help us learn the optimal duration. I think for a GS 9, most would continue it for 1 1/2 to 2 years after.

If you are not ready to make a decision yet, a 4 month Lupron shot will slow or stop progression for now, and will be necessary anyway in case you decide to get salvage radiation. There are several clinical trials of adjuvant immunotherapies, advanced hormonal therapies, and growth factor inhibitors that he may qualify for as well.

His PSA is too low for much of anything to show up on advanced imaging (e.g. PET/CT). One interesting new possibility is a new kind of scan called a PET/MRI that may be able to detect much smaller tumors and at lower PSAs than PET/CT scans. Fortunately for you, the Lawson Health Research Institute in London, Ontario is doing a clinical trial now. Click here for details and contacts..I'm sure he's had a bone scan already. So if you want to pursue the salvage radiation as a curative option, they will treat the prostate bed, hoping the met is there- that's typically where it spreads to first.

Another option is to do nothing, and wait until symptoms emerge, which is likely to be many years from now, and treat them then with hormone therapy and/or chemo.

One has to learn to live with uncertainty. The state of the science isn't where any of us would like it to be.

- Allen

One more question, Ms. Toronto, how is he doing with regard to continence? Radiation makes the recovery of continence slower and less likely. It's another consideration to throw into the mix.

The reason you are getting so many different suggestions here, although we all mostly agree on the odds of success for various approaches, is that it really depends on what a man wants and what he is willing to put up with.

For me that one chance in three of a cure would be irresistible. Adding a bit longer hormone therapy to the radiation may boost that chance a little bit more but it won't reach 50/50. The price he would pay for making the attempt at a cure would be that radiation will add a bit to the side effects of his surgery. He would be less likely to regain continence without help and his chances of regaining erectile function would also be impacted.

I happen to know about this because I finished my radiation after my surgery a bit more than two years ago and I am impotent without injections and I wear diapers to work. My odds are a bit better for a cure than your husband's -- I was a Gleason 9 with positive margins and a lower PSA after surgery -- but I know about the price to be paid for that chance.

In my case that price is two years of impotence and incontinence. Sometime in the next few months I will get getting additional surgery to fix those problems (a penile implant and an artificial sphincter) so the problems caused by the radiation can usually be mitigated to some extent.

I'd like to add my welcome as another Gleason 9, with a similar PSA and who was diagnosed in his 50s. I don't have any additional info other than what has been shared with you by some very knowledgable people. But I did want to say hello and wish your husband all the best.

FWIW, I seem to be doing very well so far. Good luck to the two of you and if you have questions you can get some good info here.

Thank you very much for your response and kindness. It has been very helpful and armed me with more information to go forward with.
Regarding your question on incontinence, he is dealing with very little leakage, I will urge him to continue with kegels before radiation.

Also, there was a mention of adjuvant immunotherapies, advanced hormonal therapies, and growth factor inhibitors. Would they all be available at Princess Margaret? and should we ask for them now or down the road?

We are finding the watching and waiting game so stressful, would it be advisable to do the Orchiectomy now as opposed to later if it is inevitable and does it stop things in it's track as I have been reading?

Torontoman, everyone on this form is different, different circumstances, different fears, different ways of processing thoughts. You will not see me promoting or demoting an Orchiectomy as treatment, it's an individual decision. Having said that, I think you're at the decision point for your next round of treatment. Hormone or Radiation therapy, and what type for either. You're obviously doing your due diligence so all types of therapies should be considered; you will come up with your own plan that works for you and, it will be different; we are all unique. Best of luck in your "process""!

Cheers, Doug

Just dropping in to say Hi. You've gotten some really good advice. Do your research. Ask lots of questions.
I'm sure your head is still spinning. Treatment of some form will most likely be needed but starting HT will give you lots of time to keep researching. HT sucks, there is no other way to say it. But everyone has slightly different side effects. It is doable. Many of us here managed through it.
All the best... good luck. Keep us informed.