Surgery or Radiation + Hormone Therapy

Many of us have told their stories here, rshap1031. Seriously, search and you will find. Oftentimes, Moderator Colleen will help you get on track to the answers you seek. I have never shared my tale, but will now since my history isn't too far off from yours.

In April of 2022, my annual exam showed my PSA jumped two points to 5-point-something. Before that, the increments were only tenths. I got an MRI, had a fusion biopsy, and on July 11 received my diagnosis Unfavorable Intermediate Localized PCa, (4+3) Gleason. My Omaha urologist listed all of the options and I was initially like others on this site - Cut this crap out of me! I don't want it in me.

But I thought I should at least hear about radiation, so I booked a consultation. In the meantime, my mind thought of being treated in Omaha at one office here and another institution across town and I thought of Mayo, six hours from me. Everything I'd need is in one complex and I had a family member who'd been successfully treated for a worse cancer, so I figured I'd be crazy to not contact them.

Video consults were booked out pretty far, so I got my first consultation in August by driving up. That was with a surgeon and he was very confident he could get all the cancer. I was all set to go with him until at the end he told me this, "Given your age, there is a 50-50 chance of incontinence." That blew me away and I asked if I could see a radiology oncologist. I was able to see a doctor for that only two days later because of a cancellation.

After seeing him, I was at your crossroads, but for me it was incontinence vs hormone therapy. I hated the thought of drip-drip-drip, but I loathed the thought of ADT's side effects. At first this doctor thought five proton beam treatments and 18 mos (I think) of ADT. I thought I could live with that and would have gone with it, but he changed to 20 Tx and longer ADT after a Mayo radiologist looked at my MRI. I was back at the rock and a hard place.

I found another doctor (still at Mayo) and got a video consultation with him. He was confident that I would be okay with only the five treatments and - bonus! - he required only four mos. of ADT with a six month PSA follow-up. I was sold and asked immediately to be put into the program.

I was in Rochester October 9 to November 13, 2022 - five weeks. Week 1 was just some basics; Week 2 was all the prep work; Week 3 was the team's planning time; Weeks 4 & 5 were the five treatments.

The side effects of ADT didn't perceptibly start until two months after the shot. Initially, it was a sporadic hot flash. Now, 3½ months later, I'm running the gauntlet of effects - more frequent but not irritating flashes, muscle loss that pees me off, and, maybe, some lethargy and depression. ("Maybe," for the latter two, because there could be other contributors.) Libido is nonexistent, but I can still muster an erection. I'm single, so I can't testify honestly to the success of my arousal. On the plus side, I'm not incontinent, in fact have better control than before, and I can pee freely, woohoo!

So far, rshap1031, I am okay with my choice. I'm waiting to see how long after four months these side effects persist. Also, ONLY four months is not in stone. Depending on PSAs, I could well be put on it again. What I wonder, though, is where your four years of ADT is coming from. There are guys on this site who've been on it a long time, but usually that is after they get detectable PSA readings. I can't recall anyone saying they had to do four years right after treatment. Maybe it is Second Opinion time.

Finis. I hope you find some help here, rshap. As I said, there are many stories like mine on this site. My first read was @dandl48 and I ended up following his path. Last I read, he is still doing well. I've been working on this for hours now, so I'm probably the 10th reply by now. Oh well.

David D

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@davinik David D, after 2 years and 4 months, my PSA is still <.01, next blood draw will be in April. Downside is an incredable shrinking penis and zero sexual drive. But given that I'm 75 and considering the alternative I'm fine with it. The original reason for picking radiation over an operation is the fear of incontinence like you. If I had to choose it again, I would go with the 5 treatments over 10 days again. Good luck!
Dave

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I’m 70, PCa diagnosis this past August, Gleason 4+3. MRI with contrast showed cancer contained in the prostate. After consultations with surgeons and a radiation oncologist, I opted for RALP.

Two factors influenced my decision: radiation treatment post-surgery was an option if I needed it (the reverse order isn’t always possible), a skilled surgeon could remove all the cancer and preserve nerve bundles…minimal incontinence and ED issues.

Surgery was 19 days ago, and I’m recovering very well. 95% or better continence and jury is still out on ED - which was a pre-existing condition anyway.

I’ve been active with walking and bicycling with a group, and have been religious with Kegel exercises and yoga, and believe this has helped a lot with quickly regaining continence. I’m wearing a pad, but it will last for 12 hours unless I drink a lot of fluid. It’s more of a nuisance and I can live with it. I expect to gain 100% continence in a few more weeks.

I will have a followup appointment with my urologist, as well as another PSA test - we’ll see what the results are. One step at a time…..

In hindsight, I’m happy with the decision my wife and I made. My surgeon is an active researcher and skilled with the DaVinci robotic researcher. My understanding from all I have read and been told is that the skill of the surgeon is probably the single most important factor in the success of RALP.

Right now, life is good. I feel good and have additional treatment options if I need them in the future.

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I was diagnosed with 9 Gleason score aggressive prostate cancer at 74. My doctor team at UCLA were all professors at the medical school and they recommended Divinci robotic surgery because that kept the option of radiation later if I needed it. I had 6 months of ADT + Erleada, then surgery, then 6 more months of ADT and Erleada. The surgery cut out the prostate, infected seminal vessels and some heathy tissue surrounding the prostate and seminal vessels . I thinks that I made a good decision. I had minor leakage problems for about 3 months and wore pads, but I am over that. I had very low energy and sleep disorder, ED and no desire. I have been off of the drugs for 1.5 months, ED and no sex drive continue but all other side effects are gone. My PSA is .01, testoserom is 6. My side effects were livable and manageable. If I had to do this again, I would follow the same procedure and I am hopeful for a cure or a long period of remission.
Keeping as many options available for when and if the cancer returns was important to me. I was very apprehensive but the surgery and recovery from the surgery, was actually no big deal. Robotic surgery with a surgeon who performs many such surgeries each week at an excellent facility is very important.

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Thank you so much for your comments. Hope your recovery goes well!

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Many of us have told their stories here, rshap1031. Seriously, search and you will find. Oftentimes, Moderator Colleen will help you get on track to the answers you seek. I have never shared my tale, but will now since my history isn't too far off from yours.

In April of 2022, my annual exam showed my PSA jumped two points to 5-point-something. Before that, the increments were only tenths. I got an MRI, had a fusion biopsy, and on July 11 received my diagnosis Unfavorable Intermediate Localized PCa, (4+3) Gleason. My Omaha urologist listed all of the options and I was initially like others on this site - Cut this crap out of me! I don't want it in me.

But I thought I should at least hear about radiation, so I booked a consultation. In the meantime, my mind thought of being treated in Omaha at one office here and another institution across town and I thought of Mayo, six hours from me. Everything I'd need is in one complex and I had a family member who'd been successfully treated for a worse cancer, so I figured I'd be crazy to not contact them.

Video consults were booked out pretty far, so I got my first consultation in August by driving up. That was with a surgeon and he was very confident he could get all the cancer. I was all set to go with him until at the end he told me this, "Given your age, there is a 50-50 chance of incontinence." That blew me away and I asked if I could see a radiology oncologist. I was able to see a doctor for that only two days later because of a cancellation.

After seeing him, I was at your crossroads, but for me it was incontinence vs hormone therapy. I hated the thought of drip-drip-drip, but I loathed the thought of ADT's side effects. At first this doctor thought five proton beam treatments and 18 mos (I think) of ADT. I thought I could live with that and would have gone with it, but he changed to 20 Tx and longer ADT after a Mayo radiologist looked at my MRI. I was back at the rock and a hard place.

I found another doctor (still at Mayo) and got a video consultation with him. He was confident that I would be okay with only the five treatments and - bonus! - he required only four mos. of ADT with a six month PSA follow-up. I was sold and asked immediately to be put into the program.

I was in Rochester October 9 to November 13, 2022 - five weeks. Week 1 was just some basics; Week 2 was all the prep work; Week 3 was the team's planning time; Weeks 4 & 5 were the five treatments.

The side effects of ADT didn't perceptibly start until two months after the shot. Initially, it was a sporadic hot flash. Now, 3½ months later, I'm running the gauntlet of effects - more frequent but not irritating flashes, muscle loss that pees me off, and, maybe, some lethargy and depression. ("Maybe," for the latter two, because there could be other contributors.) Libido is nonexistent, but I can still muster an erection. I'm single, so I can't testify honestly to the success of my arousal. On the plus side, I'm not incontinent, in fact have better control than before, and I can pee freely, woohoo!

So far, rshap1031, I am okay with my choice. I'm waiting to see how long after four months these side effects persist. Also, ONLY four months is not in stone. Depending on PSAs, I could well be put on it again. What I wonder, though, is where your four years of ADT is coming from. There are guys on this site who've been on it a long time, but usually that is after they get detectable PSA readings. I can't recall anyone saying they had to do four years right after treatment. Maybe it is Second Opinion time.

Finis. I hope you find some help here, rshap. As I said, there are many stories like mine on this site. My first read was @dandl48 and I ended up following his path. Last I read, he is still doing well. I've been working on this for hours now, so I'm probably the 10th reply by now. Oh well.

David D

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Do a search Lupron ruined my life men. I had six months of treatment and it took 2 years and testorone replacement therapy to get over it.
Now I have to inject myself every 2 weeks or after a couple months get really screwed up.
Research it, I find that most doctors are treating on what they learned 20 years ago.
Did you know that high doses of testorone killed Lupron resistant cancer.

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