What do you wish you'd asked? + ED after more than 3 years

Mark3plus4

Hi all,

I'm 56. Was diagnosed last year Gleason 3+3 and chose active surveillance. That has progressed this year to Gleason 3+4 in 2 cores with some cribriform patterning. Decipher is 46 with intermediate risk. I have to choose a treatment and hate all options. I find that doctors don't give you the whole picture and I am frustrated that we must figure this out. A doctor recently suggested I go on a forum and ask "What do you wish you'd asked before you had treatment?" So I am. That's Question #1.

Question #2 is: does ED with radiation continue to get worse after 3 years compared to surgery? Do they stay about the same after 3 years? It's difficult to find a source for after 3 years.

Question #3: should any cribriform rule out radiation? The radiation doctors I speak with don't seem to think so but I'm not sure why.

I'm sure I'll have more questions down the road.

Thankyou for being a community. I live alone and find it difficult to reach out and that makes all this hard.

Mark3plus4

LuckyKYGuy

My situation was fairly similar. Diagnosed at 58 with Gleason of 6 (3+3), PSA Of 5.5 and Decipher was low risk 0.37. Active Surveillance was my decision then. Fast forward to 2024 and I'm 59 and it's time for a follow up biopsy. My PSA was 4.57. However, the follow up Biopsy showed everything had bumped up to 7's (3+4) and one sample was an 8 (4+4). Like you I was presented with a set of options and given a few weeks to think it over.

The first thing I did was purchase Dr Patrick Walsh's book "Surviving Prostate Cancer". It's a fairly long book but I read it cover to cover within a week and then read it a second time. I wanted to know as much as I could about what I had and what I was facing. My Dr answered every question I asked but the book has been a fantastic reference guide for me as there'd be times I'd come up with a question and I'd go to the book rather than emailing my Dr in the middle of the night.

At any rate, I chose to have the Robotic Assisted Radical Prostatectomy vs. Radiation and Hormone Deprivation Therapy. For me, I decided that I could deal with surgery side effects and get on with my life much better than dealing with the treatment side effects over the next couple of years. Plus, I just wanted the cancer out of my body and the surgery provided the best and quickest option to make that happen.

My surgery was a month ago today….the Foley catheter for the 7-10 days after surgery is by far the worst part. Of course I'm working on the incontinence which has become more annoying than anything else because I refuse to let it stop me from living and going on with things I normally do. Both my wife and I have had our share of issues with our "parts" over the last five years so we'd already modified our sex life before I was ever diagnosed and I'm not too worried about if the erectile dysfunction is permanent or not. If I can see the incontinence improve by 75-80% in within the next 11 months I'll be very happy with things. Obviously 95% improvement would be my end goal and I still have a long way to go. Plus, the final pathology showed everything was 3+4 (7) with NO 8…and all margins and lymph nodes were negative. To me, that alone was worth the surgery.

Only you can make the decision which way you want to go…but I promise you if you haven't read Dr. Walsh's book pick up a copy. Again, I have no regrets about my choice.

Rob.Ski

I got surgery at Hopkins 2.5 years ago and faired very well as far as side effects. Pretty much continent after catheter and mild ED overcome with viagra, not necessarilly required. My surgeon showed me a published paper of his patient outcomes. Not sure how many docs keep track of this but, makes sense to me to find out your docs outcomes vs. General stats for any treatment you get.

Best of luck in your decision.

Marlon

I too read the Walsh book which explained a lot of things much better than my doctors. I also read the book "After Prostate Cancer: A What-Comes-Next Guide to a Safe and Informed Recovery by Arnold Melman, Rosemary Newnham"

Clevelandguy

Hi,

To answer question #1, go to the American cancer society website and study the various Pca treatment types. That should give you some questions to ask your Urologist and Oncologist.

Question #2, I would think that after 3 yrs. Your ED has plateaued but not having radiation it’s an educated guess.

Question #3, From what I have learned here, with cribriform radiation is not that effective. If it was me and I had cribriform, it would push me towards surgery as long as the cancer was contained within the Prostate.

I had robotic surgery and both my ED and urine leakage gradually improved til about the 1.5-2 yr. mark. In my opinion the best thing you can do is find a great set of doctors plus the best facilities to get the best results. Second opinions are also a good idea.

Dave 3+4

TRWXXA

My situation was almost identical to LuckKYGuy. At 58 yo Gleason (3+3)… monitored for 2 years. Next biopsy showed Gleason (3+4)… opted for the Robotic Prostate removal. Talked to many other docs about radiation, etc. Everything has it's downside, but I wanted it out. Find the best Doc in your area with the option you pick. 1 week with catheter, then about 2 weeks wearing a diaper, then 2 weeks wearing a small pad. After a month I had very few leaks. I keep a large mouth bottle in my vehicle since I still have some issues with holding pee for longer periods, but no leakage. ED was severe, but erections slowly started coming back after about 6 months. Now 27 months post surgery, erections are around 80% pre surgery, but don't last long. Still working on that. Taking cialis (5mg) daily. PSA still undetectable, which when you look at the big picture is what you want. Good luck!!

Steve1961

i have the answers ..6 years ago a i was diagnosed 3+4 decifer 56 it was cribiform ..i chose external beam radiation with booster…radiation messed uo my bowels permanantly..sfter second treatment could not urinate at all ..needed flomax daily in order to urinate ..the brachytherapy booster caused me ..terrible bleeding hemmeroids ..psa dropped to 0.9 then climbed To 1.7 ..mri showed tumor biopsy confirmed 4+4 cribiform ..the tumor was right next to the marker that was put in ..the radiation is pointed directly at the markers..and is precise 2 surgeons were convinced its the same same tumor ..1 surgeon told me there are studies pointing to the fact that cribiform may be radiation resistant ..i chose salvage surgery .the second time .i just had my 6 month follow up and am cancer free.. no problem after radiation and surgery with ED and didnt lose any length ..i do have incontinence but i was warned after radiation oit could be worse .i wish i never did radiation .i onky did it because of my overwhelming fear of surgery..i woudlnt mess with radiation if you have cribiform you may end like me ..probably will.look up gold standard for the PC that is contained to prostate ..90% choose surgery ..there are 3 steps to PC cancer 1 surgery 2 if it comes back radiation and 3 hormone treatment ..i already used up step 2 now if it returns all i can do is hormone treatment ..hopw this helps i am convince that cribiform is radiation resistant ..no one will change my mond

JackWest

A question to all. How much ED and length reduction did you experience after radiation treatment for prostate cancer? Any other?

Rob.Ski

Never heard of radiation causing reduction in length.

Old Salt

https://csn.cancer.org/discussion/comment/1720823#Comment_1720823

As Rob wrote, no reduction in length. I don't have ED statistics in my head, but there is a wonderful world of chemistry out there to help with ED. And if those don't help, there are pumps etc.

A more common side effect is that urinary flow may become more difficult after radiation. The rectal area may also be affected.

TRWXXA

https://csn.cancer.org/discussion/comment/1719088#Comment_1719088

My scenario was almost exactly like luckykyguy. Incontinence lasted for about one month. I wore a diaper at night and pads during the day. For me, there was too many longterm side effects from radiation. I opted for the robotic surgery sep 2022. Fast forward 2.5 years... ED almost gone and continues to improve. Erection is lasting longer. Length is a bit shorter. My docs have said it takes 3 years post surgery. Seems like I'm on track. Good luck. Every person's situation is somewhat different. Talk to many docs.

JackWest

My penis ED has been significant. My penis is smaller and shorter. It takes longer to change from soft to semi. Even then it is not the same. When I ejaculate (****) it is far less volume. I have asked my bi friends to help me as I try. Having them support me increases my arousal, but not my ejaculate volume. Still with their help I am not as hard as before radiation treatment. Will this build up? Increase over time?

Old Salt

Ejaculation volume will be down after radiation because the cells that produce the fluid are destroyed by the radiation. Many have reported dry orgasms.