Hi everyone ,
I am in doubt if I should start radiation in November as I had my RP in March, currently on ADT,Lupron,Zytiga and still experience leakage (1.5, 2 pads a day) .I do a lot of Kegel but I am worried to go into IMRT and get worse or stay like this for good.
FYI I am a Gleason 9,T3b type and RO said that I need IMRT 9 months after RP as I have lymph nodes positive. I am very physically active and eat healthy.Please advice.Thank you in advance!
Wally
I agree. Why not do ADT for 7 months now to allow for greater healing?
That would be great but I consulted two RO and said I should have RT ideally 9 months after surgery (December this year).My PSA this month 0.2.
Not if you have ADT. Send them this:
sciencedirect.com/science/a...
I opened the link but only shows the study about the timing between RP and SRT more than 7 months which I will have now in October. Are you saying that if I am on ADT(Casodex,Lupron)Zytiga/prednisone I should wait more months and not have radiation like suggested in November?I want to drag the time so I can overcome this urinary problem. Please explain or send me the exact title of the study.
Greatly appreciated!
The idea is that the cancer will not progress while you are taking ADT. That will give your incontinence time to heal.
Hi Wally,
I follow you because our situation is and was very similar. I had RP in Feb 19 and 1st PSA was .9. Not surprised because of GL9 and lymph nodes and all the other bad stuff.
I waited 7 months for SRT, hoping my incontinence would improve good enough to make life tolerable. In the meantime I started Lupron and Zytiga. I also got down to using one small pad a day and so I started SRT last October.
Although my incontinence got worse during radiation, the good news it has improved over the last 10 months to where I am better than before radiation and no longer wear a pad. In fact, I only have a tiny bit of stress incontinence when working out or sometimes bending over in a strange position. I credit the improvement to a lot of core work. I work out 5-6 days a week, plus hike, bike, kayak and play softball and bowl. (before covid)
Not to scare you though, I just had to have a colonoscopy (ugh) to check out some rectal bleeding. Not much, but the RO wanted to make sure it wasn't something dire. Just a bit of proctitis from the radiation. Had it cauterized and now good to go, at least for now :).
FYI my PSA has been <.1 since April of 19. 6 more months of ADT and then fingers crossed!!
Good luck with everything!
Good for you!I am happy to hear there is hope after radiation when it comes to the urinary problem.Look forward to that.
So you may be off the hook in 6 months with ADT right? I hope to follow you as I am not looking forward to 2-3 years of ADT.
I run 2-3 times a week ,do weights, row machine, stretch, you name it.I just climbed a week ago 2 mountains in Colorado at 14000 feet and felt great.
Wishing you all the best!
14,000 ft is getting up there! Highest I ever hiked was 12.
ADT w/ Z+P for me has been pretty easy. A few short hot flashes here and there ( of course can't even mention them to the wife!) Loss of body hair, but otherwise I feel pretty normal. One of the lucky ones!
Same here on all counts, I mention to wife to make her feel better. I am also very active and I suspect as everybody keeps saying, that is what helps with SE's most. Did you get RP before or after learning of LN involvement?
I had RP before I knew about the lymphs. Went in with Gl 7, came out as Gl 9. 😭
Wow, I have heard of people doing it all regardless of dx so wondered if that was your case. RP was never an option for me and at times reading this forum I am not sure if I am glad of that or not. Clearly the dx is better when it is an option. Best to you and where you go from here.
-- if it were me I would wait -- I was told by surgeon and RO that most people get their control usually within 9 months -- for some it takes a year or more . but odds are low if not by a year. They said whatever your condition is at the time of RT it won't get any worse but it will stop it where it is at ..
The following is just an opinion - -- it seems the tissue is newly healed and may be easier to inflame and or damage.
Hold Off Radiotherapy After Prostate Cancer Surgery
September 29, 2020
Most men who undergo radical prostatectomy can skip adjuvant radiotherapy and can be followed with observation alone. They can undergo early salvage radiotherapy if the disease shows sign of progressing, say experts reporting results from three similar clinical trials.
medscape.com/viewarticle/93...
The Axumin scan showed lymph nodes activity in the pelvic area and RO said I have better chance of survival if I have radiation before it spreads and go into metastatic stage.I wish I could avoid radiation but not want to go in too early or too late and fix my urinary leakage.
You might try imipramine for incontinence.
Wally
My urinary issues were worse before radiation
During radiation it was difficult holding it day and night
I started my bladder retaining as soon as I could
I am much better now
I don't have to go immediately after the 1st or 2nd call
The 3rd time it comes it is suggested I go
Wally I know we all dont have the same response but it certainly worked for me
Praying you make the right decision once its done its irreversible
I am also a Gleason 9 T2
Hormone therapy chemo then radical radiotherapy step by step
I feel amazing going back to work is something I thought impossible
My PSA 3 months ago was 1.54 decreased from 13.5
Seing my oncologist on the 27th we will k ow more then I had a good biochemical response
Wishing you the best results possible
You should get RT before your PSA hits .6
33 sessions, 66 gray. G9, T3b. Only a slight increase in leakage that subsided in a month.
Are you on ADT too?Did your PSA go up during treatment? I started my ADT in August do I need to see where my PSA will get for now is 0.2.I don’t think I am ready in November only 8 months after RP.
About 2 years after RP my PSA went from .023 to .039 so I got RT. One month of Firmagon before RT then a 6 month shot of lupron. The 6 months is up on Oct. 23. Lupron sucks. My T level is zilch and PSA is undetectable. Hot flashes are nasty.
Being on Lupron I can't tell if the PSA is going to go up. After the Lupron wears off (6months?) I will know.
As you know, Gleason nine is high-grade aggressive PC. I had the same thing and went through with the prostate bed radiation. I am three years out and still no detectable PSA. One thing to keep in mind is there is a good chance the radiation will fry whatever erection nerves you still have left. It happened to me. I was willing to roll the dice because of the aggressiveness of the cancer.
It didn’t make my leakage worse because I was using 5 to 6 pairs per day before the radiation and no change afterwards.
I had a penis pump installed which works fine it is much more convenient than the injections.
Unfortunately I had a urinary sling implanted which totally failed and cost me about an inch of penis length. It could not be taken out due to tissue in- growth. My next option was the artificial urinary speaker and it works perfectly. My advice would be to consider going for the artificial spinchter rather than putting up with the leakage.
Hi Miket218 I am going for RT and I already had one shot of Lupron. I am 71 and I still want to have sex. May ask you how old you are since I’m afraid that at my age penile implant could be risky surgery? As far as continence I’m at a pad a day and mostly due to stress continence. Thank you.
You have 2 RO's,both MD's, giving you the same medical advice. You'd be wise to listen to them, and not those patients giving you conflicting advice , unless those patients also have an MD after their name and specialize in radiation oncology.
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