My Gleason was 9.
Incontinence has been an issue since the RP and even though it has improved still leaked around 30 ml a day.
Delaying radiation that I was recommended by one institution but some Oncologists say to delay radiation for more recovery. Even though my PSA is 0.01 on the meds, i worry about metastasis.
Not sure if incontinence may improve more with time. Still doing Kegel exercises.
Any ideas?
Your cancer can't grow for at least a couple of years while you are taking hormone therapy (especially with Nubeqa too), so there is a good opportunity to let your tissues heal before beginning salvage radiation. The radiation will stop the healing of urinary function and may reverse it.
Thanks very much for your reply. Your answer is reassuring that I could wait a bit more. And that is what I am doing but being nervous about it. I am 11 months post RARP with a Gleason 9 and some extra prostatic extension. MD Anderson at 8 months did psma and mri both negative with PSA of 0.02 and recommended ADT and radiation. My local oncologist added nubeqa and now my PSA is 0.01 after 3 months. Being in the medical field myself I have consulted with several specialists regarding the issue of the continence and radiation which like you said affects negatively the incontinence but I am stuck at around 1 ounce of leakage per day and more if I drink more than usual. I still do Kegel exercises and for two months I did electrical stimulation with a probe, and it seemed to work some, but is not very comfortable as you can imagine. I think I’m gonna be working aggressively in restoring the strength of this sphincter for a couple of months and hope I’ll be in the best possible shape before radiation.
The other point, as a couple of oncologist mentioned, is that radiating the prostatic bed and the pelvic nodes is just a guess, and there are side effects from radiation. However, I believe that the guidelines call for Salvage radiation with Adt and that’s what I’m gonna be doing, which hopefully will allow me to take some holidays from the hormone therapy.
Thanks for your response.
There are no holidays with adjuvant hormone therapy - 2 years of hormone therapy and you are done (hopefully).
I did not know there are no holidays with Adjuvant hormone therapy. I was hoping to get my best incontinence recovery, proceed in 2 to 4 months with RT to prostatic bed and pelvic lymph nodes and hopefully if my PSA remains undetectable, to take holidays from time to time. Two years of fatigue, constipation, insomnia, hot flashes, weight gain, muscle loss and osteoporosis and other side effects is not easy. You do advocate for the need of SRT, correct?
I am attending a meeting in California in 3 weeks, by PCRI. Hope to get better informed.
Think of it like antibiotics. If you stop too early, you select for the most resistant bacteria. If you restart, the resistant bacteria take over, and you actually cause a worse infection.
Thanks for contributing to this forum. Very helpful with all the knowledge that you provide.
I think my plan, assuming nothing gets on the way, it is to wait few months for the incontinence to improve, get the radiation done and most likely afterwards I will need some type of procedure, probably AUS. I doubt it that my incontinence will be totally controlled. The best places in the US to do them are in the Mayo Clinic and also In new York. There are probably several other places to have it done, but it is very important to have it done by someone wuth lots of experience. At least 500.
A friend of mine suggested to wear Battewa underwear which you can buy them at Amazon, for people who leak 15 to 20 ml per day, instead of using diapers or pads.
Sorry if I am adding information already posted here.
Holidays? What's that?
Good Luck, Good Health and Good Humor.
j-o-h-n
Work . What's that -- A New Drink ?
Cheers.
so so true.
Good Luck, Good Health and Good Humor.
j-o-h-n
As the Welsh ( ie from Wales ) would say "
The last time I was up a ladder -- Was down a well .
(I had to look this one up).
Two English tourists stopped for lunch in Llanfairpwllgwyngyllgogerychwyrndrobwllllantysiliogogogoch and said to the waitress “could you settle an argument for us? Can you pronounce where we are … Very slowly?”
The girl leaned over and said “Burr … Gurr … King!”
Good Luck, Good Health and Good Humor.
j-o-h-n
j-o-h-n
You are a " Gem " .
When stokey smoking Geo. Burns was asked by Bob Hope , when they were both in their late nineties . " Geo. do you ever think of dying ? " -- George replied :
Bob , at my age , when I wake up in the morning . The first thing I do , Is look at the obituaries . If my names not there -- I HAVE BREAKFAST .
j-o-h-n Keep on smiling . It's the best medicine of all .
George Burns was one of my favorites. He made "The Sunshine Boys" with Walter Matthau, a movie I've watched many times. I also liked Walter Matthau in comedy and in straight movie roles. Yep I do believe that laughter is the best medicine so keep on laughing.
Good Luck, Good Health and Good Humor.
j-o-h-n
Since my cancer diagnosis my favorite GB quote is, "There's an old saying, 'Life begins at forty.' That's silly. Life begins every morning you wake up".
They say life begins when your children go off to college and your dog dies.........
Good Luck, Good Health and Good Humor.
j-o-h-n
If your cancer is already out of the expected radiation field, which is something we just can't know for certain, then whether you do RT now or later will not matter. My cancer was outside of my prostate when I did RP and it was also outside of my salvage radiation field. There is no way to unequivocally know, prove, that cancer cannot spread while on ADT - making treatment decisions even more difficult.
I agree. There is no way to know if I have micro metastasis outside the pelvis and with the low PSA of 0.2 the psma most likely is negative.
That is why a couple of uro oncologist believe that there is no rush for radiation and even maybe believe that you don’t need to radiate unless there is something obvious. However, the most likely place that there is cancer for sure it is at the prostatic bed and the pelvis where the recurrence happened.
You asked for any ideas yet is seems in your further comments you have made decisions; so pondered pulling my post for lack of contribution, but opted to share a couple thoughts (because you asked). My SRT to bed was recommended to me 'with confidence" - I was to 'be easy'. Looking back I regret the way I approached SRT - falsely confident, shooting blind. Yes, the cancers spread is logically through bed and pelvis first but I subsequently learned via ePLND my cancer had made it to para-aortic at 0.11. If I could have a do-over, I would not have done SRT but instead the salvage ePLND with frozen section pathology method (even better would have been to do this with RP). But then, my focus since diagnosis, nearly ten years ago at age 57, has been to defer doublet/triplet therapies for as long as possible, and thereby deferring likelihood of CR. All the best!
You are absolutely right. My cancer may be spreading as we speak. On the other hand, waiting a month or two, may not make much of a difference now for the spread, but it may make a difference in the improvement of my incontinence. I just don’t know and that is the my dilemma.
yes the great dilemma. I did not stress over a few months of treatment delay - I figure if the cancer is timing spreading that fast likely already had and not much we could do. Dealing with this dilemma now with new found liver lesion and varying medical opinions. All the best!
I could hardly say I had any level of incontinence. Occasional dripping during stressed body positions. I read that it would get better during the first year, max a year and a half. I noticed very slight improvement up until 2.5 - 3 years. Don't haste in getting sRT. I don't, by taking a miniscule dosage (1/10) of Bicalutamide.
Study of one, my PCa is not yours. When I had BCR after what my medical team said was a very "successful" surgery to include no incontinence (though I knew statistically I had a 30-40% probability of recurrence), undetectable until 15 months, then .2, a subsequent PSA three months later was .3, I asked my medical team about radiating not just the prostate bed but to include the whole PLN system and add short term ADT given my clinical data at that point GS, GG and short time to BCR. There was data from clinical trials as well as May that in high risk cases the PCA had spread to the PLNs. They argued there was not long term data, I acquiesced...I was right, SRT failed, went on to do triplet therapy.
Would the trajectory of my PCa have changed if I stood my ground, we'll never know.
As my clinical history shows, three go rounds with radiation, SRT, WPLN and SBRT. I am probably to the right on the Bell Curve, zero side effects. Why, who knows, I do have a damn fine radiologist though, same one for these last eight years.
Doublet therapy as you are doing is a good treatment choice and for the time being, has your PCa under control. I did triplet therapy - 18-24 months Lupron, six cycle taxotere and WPLN radiation after SRT failed but we had a C11 Choline scan to show where the PCa had spread and added clinical data such as PSADT and PSAV. That treatment choice "brought" almost 4-1/2 years off treatment.
What would change if you and your medical team decided to do triplet therapy, add radiation to the prostate bed and WPLN or chemotherapy...?I am not sure anyone can answer that. As others have said, given your treatment and its effect, unlikely imaging would provide any useful clinical data to change your current treatment. Perhaps the only factor at this point may be a qualitative one, how aggressive do you want to be in your treatment given your clinical data? TA has a good point on the radiation and probable impact on incontinence.
One thing I've found useful in my decision making is using 3-5 years as my "window" for treatment decisions...will this work for the that time frame, thus allowing for further medical research and development to bring new treatments into clinical practice.
Kevin
Kevin I like your concept of the 3-5 years window.
At almost 80 years of age, 5 years could actually be a life time for me. When I had my radiation done they also did the pelvic area. Kind of a two for one deal. I have always enjoyed a bargain. LOL.
I limited my ADT to 6 months. Enjoying life and still doing the things I enjoy without limitations.
We all need to set our priorities. The issue I see is that many people are uncomfortable doing just that. You may not be able to “Have your cake and eat it too.”
Wrong expression:
You may not be able to "Have your cake and eat it too". You can always have your cake and eat it too!!!
Correction expression:
But "You can't eat your cake and have it too!!!"
Good Luck, Good Health and Good Humor.
j-o-h-n
Well you learn something new everyday. Who ever said “you can not teach old tricks to a new dog” was very wrong.
FYI: Apparently that was one of the ways that they identified the "UNIBOMBER" by his using the expression correctly "You can't eat your cake and have it too!!!" in his Manifesto. I think his sister-in-law noticed it and mentioned it to her husband, Ted Kaczynski's brother.
Good Luck, Good Health and Good Humor.
j-o-h-n
Starting my prostate cancer journey after radical prostatectomy. Looking for info, suggestions or recommendations on future treatments. 
Is it useful to get a PSMA-PET scan with low volume cancer, newly castration resistant and PSA below 1?
New Member. Thank you. I cured lung cancer and now need help with husbsnd's Prostate PSA 25 and cancer.
Risks of RT for bowel/bladder damage
Well..latest (03/22) PSA is up to 1.67 from 1.5(O2/22)...on the high test(concentrated) BIRM for 2 months now. Lupron & Xtandi.
