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

@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

Thank you for your comments. Much appreciated.

Well, there is the conundrum. And why prostate cancer is insidious and challenging.

I posted on "PSMA Test" link the "opposition " position and that RP was my choice, and one that I would make again.

Very personal opinion.

Hey @davinik
I have a question about this...
"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."

Did the other doctor say why he felt 4 mos was enough for the ADT? My Dr's disagree (surgeon says two years, RO says 6 mos was enough) I'm on month 8 . My belief is the RO is up on the most recent studies. Just curious if you looked past the difference for the "why" of it?

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.

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.

rshap1031 :
In Sept of last year my PSA had jumped to 10.2. I had a Prostate MRI and then a biopsy (next time I would do fusion guided), 3+4 and 3+3. My urologist said radiation or RP. At first I thought RP with Dr. Patel in Celebration, Fl, as he has done 18,000 of them robotically. As I researched the radiation side and its multiple choices of machines better choices then RP, for me and side effects, made sense. I narrowed it done to two, the MRIdian made by Viewray or the Proton Therapy machine from Mevian. I picked the MRIdian because of its narrow margins, its dual functionality as a radiation and MRI device (if you can see it, you can treat it or treat it less in the case of healthy tissue) and the machine automatically shuts off if it detects the radiation is about to go outside the area mapped. Here are the results of a recent randomized trial on the MRIdian vs other forms of radiation : https://www.prnewswire.com/news-releases/mirage-phase-iii-randomized-controlled-trial-demonstrates-superiority-of-mridian-mri-guidance-in-stereotactic-body-radiotherapy-sbrt-for-localized-prostate-cancer-301660815.html. 5 treatments the first of which I start tomorrow (By the way, they are doing a trial in NYC for one treatment with the MRIdian). I had them put in Spaceoar to give an extra 1/2 inch between the prostate and rectum. The margins between the cancer and healthy tissue become really important and the Spaceoar gel doesn't protect the bladder and urethra. We will see what happens in terms of side effects but I had the same concerns as you. I will come back on and report the experience.

In his book Dr Peter Welch says men should avoid hormones if possible. My primary doctor recommended surgery. My ENT had the surgery. My urologist's father had the surgery. Because of my high blood pressure I was advised to not have surgery and instead received 20 sessions of radiation and so far 3 doses of Lupron. 4th, and hopefully final dose is scheduled for June. Good news is my PSA is undetectable. Bed news is I'm suffering many of the usual side effects - severe joint pain, weight gain, fatigue, shrinking penis to the point it's hard to use the toilet, and of course no sex drive at all. Yet I'm alive and the cancer seems to be under control. There was a thread title, "Lupron Yeah or Nay. You may want to read it.

Good question, @web265 , and one to which I have no answer. But I'll go on anyway 😉 ...

My first thought was "Really? That's all? Oh, good. Let's do it." My long-afterward second thought was "What does he know that the others don't?" I even wondered if I was part of a trial or study, but I was pretty sure I'd have been told about that. Still, I asked no questions.

I learned that this doctor is among the most requested, so I just went on Blind Faith that he is good and knows what he is doing.

Still, I will admit that the two month gap btwn "end date" of the injection and the first PSA test made me a little nervous. I never saw this mentioned in any other CONNECT posting I read. I don't let it bother me though. I made my choice and will live with it. No sense beating myself up over something I can't change. The ADT is doing that well enough, heh heh.

Since I'm here and should have had this in my posting, I was 71 & 3/4 yo when I got The Results. As for the injection, because some guys wonder, I got a leuprolide injection 30 mg (ELIGARD 4 MONTH). That's straight from my chart.

As for an RO being more up to date than a surgeon, it's possible, but I would hate to think that is the case. It could be that the RO is a bit more avant garde and willing to do things before they become "tried and true."

If I get an explanation re the 4 mos., I'll let you know, web. - David @ @davinik