Recently Diagnosed - Surgery or Radiation?

Welcome to the club no one wants to join. I was diagnosed with PCa last year when I was 70, 3+4=7, Grade group 2, contained to the prostate. I'm reasonably fit but not excessively so. I'm not a medical professional and I have no idea which treatment option is best for you. That said, I'm happy to share my decision and how it's worked out for me. My wife and I chose surgery. I had NS RARP by a very experienced surgeon June 2024. I did start Kegals about a month before surgery and resumed them after surgery when the care team approved it. I don't know if the Kegals helped or not, but I was never incontinent (although it did take me about 5 months to figure out the new normal and get all my confidence back regarding urination). Recovery from the surgery was easy for me and exceeded my expectations. I did have ED at first, but it's been slowly getting better and I am able to now have intercourse with my wife (although I still have a way to go to get back to normal). At 9 months after surgery I'm fully recovered in all other ways. I can go to the gym, hike, etc. Other than the diminished sexual performance, my quality of life is as good as before surgery (and my urination is actually better as my flow is much improved). For me, my worst day was right after surgery and every week has been a bit better. I am happy with my decision to have surgery, but during the first couple months I did have some doubts occasionally. But at about 4 to 5 months I crossed a turning point and now I'm really glad I had the surgery. I do have a recommendation: Buy Dr. Patrick Walsh's Guide to Surviving Prostate Cancer Paperback – October 3, 2023. It's on Amazon and it's the best $20 I ever spent. It really helped educate me on some key points in my decision making and it's organized so you can easily dive into the sections most relevant to your situation. For me, when considering surgery I was very interested in the experience and results of my surgeon. I also specifically asked him if he thought he could spare my nerves and what my odds of incontinence and ED were. Well, that's my story. But as I said, I have no idea what's the best treatment for you. Best wishes.

I can give you mine for what its worth. I am far from educated on the subject. I found out through the biopsy that I had 1 out of 12 samples with cancer. Recommendation was to monitor. I opted for surgery. I felt it gave me the best chance of getting rid of it completely. I had NS RARP. It was my opinion with radiation , removal , particularly Nerve Sparing, would be impossible. I could always have radiation later. Post Op revealed it was contained to the prostate. Its been 5 years with zero PSA. I am not the best of patients. I just started doing Kegels. I am incontinent during the day. I also have ED issues but I have not had any stimulation in the last 5 years. I have partials during the night. I was 67 at the time of diagnosis.

You really need to see your biopsy results before you can make some definite decisions. You are pretty young, if your cancer is really a Grade Group 4 or 5 then you need to get a PSMA PET scan To make sure there has been no spread. If there has then surgery may be too late..

If you are at high risk and have a Gleason eight or higher, then it might make sense to get that surgery and leave radiation readily available if you have a reoccurrence. If you only have a Gleason seven, then radiation might be the answer since they are slow growing normally.

I don’t know about this cystitis. I had salvage radiation 11 years ago. Have some incontinence, but nothing else. I run into many people in the webinars I attend that have had radiation and do not mention cystitis. My brother had his prostate radiated with SBRT two years ago no problems at all after 6 months. 23-80% Doesn’t sound like a number you can rely on.

I had SBRT radiation and six months of androgen deprivation therapy (ADT). I'm nine months post radiation and have no lingering side effects from radiation. For about a month afterwards I needed naps during the day and needed Flowmax for two months due to a weak urine stream.

ADT has been more problematic. It sent me into a severe depression, gave me terrible insomnia and considerable joint pain. I never lost the ability to have erections, but did become anorgasmic at four months. After I finished, I recovered fairly quickly (about two months). However, my testosterone recovery has stalled and has actually declined and I have some osteopenia/osteoporosis issues as a result of ADT.

In terms of cancer control my PSA was 7 before radiation, .5 immediately after, .08 two months after that and .04 now (if you still have a prostate you will have some PSA). I was transitioned from quarterly followups to six month followups.

I never had any urinary incontinence and was able to prevent ED with Viagra--100 mg for the first two months, 50 mg for the duration of ADT and then 20 mg, though I've had to bump it back up to 50 due to the t issues.

@jeffmarc commented that "If you only have a Gleason 7, then radiation might be the answer..."

I am Gleason 7, and I chose SBRT before I read Jeff's comment, and after which, I felt more comfortable with my choice. My first (initial) choice was RARP, but my family is more worried about it because of my age (68). You are younger, so your family may be less worried in case you choose surgery.

My gold seeds (fiducial markers) will be implanted this March 26. Radiation planning (with MRI and CT scan) is March 28. My radiation oncologist indicated that actual treatment may be after two weeks, I anticipate my SBRT to be completed around the 3rd week of April.

Because of our age difference, you may choose differently. Choose what you think is best for you & your family. Do update us with your journey. I myself will be updating our support group, hoping to help others as many others have helped me.

@scottbeammeup Based on your problematic ADT experience after SBRT, would you have been able to join & enjoy a one week cruise with walking tours at different ports?

I ask because my SBRT is going to be around the third week of April and our cruise (reserved/booked several months before my PCa diagnosis) is happening on the third week of May. I am worried that I cannot handle it, and I asked my spouse if we cancel the cruise. I believe we can get a partial refund, she thinks no, the full payment is gone whether we go or not.

My side-effects may not be the same as yours, nobody can predict. But with the probability, however small, that my ADT experience might be problematic, what will be your personal opinion. (Opinion. Not advice. I think we are not allowed to give advice here.)

Thanks.

You're going to get lots of replies but no definitive answer. 🙂

The thing is, they both work. Radiation and prostatectomy have effectively identical overall-survival statistics. And neither is a slam dunk for getting rid of the cancer. Radiation leaves some prostate tissue alive, so cancer can (at least theoretically) recur, while prostatectomy doesn't address any localised cancer cells that may have escaped just outside the prostate, so — you guessed it — cancer can (at least theoretically) recur.

You're young and (I assume) strong enough to tolerate either procedure, so your best bet is to research the potential side-effects of each and decide which you'd rather risk.

To your original question, I had a high dose of SBRT radiation after my diagnosis at age 56, but also, my cancer had already metastasised, and it's very rare to do a prostatectomy in that situation.

I ended up with long-term mild radiation cystitis (bladder irritation) and radiation proctitis (rectal irritation). That's actually very rare: it normally clears up in a few months. But I'd still pick radiation over surgery again if I could go back in time. My body didn't respond well the last time surgeons cut me open, and whenever there's a safe alternative, I'll choose it.

If you do go for a prostatectomy, try to find a surgeon who's experienced in performing the "nerve-sparing" type of operation, so that you have a reasonable chance of keeping sexual function.

Best of luck!

As for ADT and your cruise, I don't think you necessarily need to cancel. I've been on ADT for over 3 1/2 years, and it hasn't prevented me from travelling to Europe and other activities. It was a bit harder at first because I was also recovering from spinal-cord damage. If you take the cruise, build an afternoon siesta into your daily routine, and that might be all the adjustment you need.

A bigger challenge might be incontinence, either from a recent prostatectomy or (less common) from radiation cystitis. Both will clear up in time for most people, and it's actually not the end of the world wearing pads or a brief (probably lots of other people on the cruise will be too, without your knowing it). And the nice thing about a cruise is that you're never far from a washroom, unlike (say) a walking tour.

I'd go for it! I was nervous doing a 5-day 4-night train trip a year after my radiation, when I still needed a cane to walk because of the spinal damage caused by the metastasis, but I'm very glad I did. The important thing with cancer is to keep living.

@northoftheborder Thank you very much. I will tell my spouse, "Our vacation is the cruise, not the walking tours/ bus trips at the ports of call." I read couple days ago that up to 30 percent of people in the cruise don't join the excursions at the ports of call. Great time to enjoy the ship's (floating resort) facilities when there are fewer people on board.

@pctm
Doing the right thing to consider all your options.
Just remember what another person might feel is best for them may not be best for you. And what another person experiences with surgery or radiation will not be the same for you.

Surgery is called RP for a reason. It is a major surgery and thus with all surgeries much more chance for side affects and issues.

I am not sure where you got the information on radiation caused cystitis. I have never been told this or read it, nor the statistics of it being so high. Side affects of radiation are (and again everyone is different) are normal and to be expected. Most statistics and what my R/Os at Mayo and UFHPTI all said the norm is mild and if not can be treated with things like flomac, etc. For me I had some minor fatique, increased urination, increased need ot void, and some dribbling. I did not need any medications and learn to drink water and go to bathroom when I could versus wait until the urgency came.

All those minor side affects starting going away months after treatment have ended. I am 1.5 years later I have no side affects from radiation. It takes time for body and prostate to recover from radiation including any radiation side affects to surronding organs like your bladder and colon. The usage of radiation treatments over the years has become very advanced.

I think I read another poster say something about radiation missing part of prostate that may have cancer. I would like to comment on that for what both my R/Os at Mayo and UFHPTI were going to do with my radiation treatment. They were going to treat the entire prostate and margins. Why? Because just like poster said a biopsy might miss an area than has cancer and not get treated. The same goes why margins are raditaed also to address the areas right outside prostate.

Thus my entire prostate and margins were radiated. My side affects were mild, no medications needed, and went away slowly after treatments ended. I think on MCC we should stay with our personal experience and not say what this or that study shows, or had read this or that, or say what you will experienced if you have not had that experience. When you read one study it will contradict another study.

I would like to recommend a great information hand out with tons of information on prostate cancer, treatments, research, along with two great books (one is the Walsh Book) is available free from UFHPTI. It will be send to you via Fed Ex with no pressure to go to UFHPTI. They are State employees salaried. How experienced are they? They started proton radiation treatments in 2006. Have uprgraded their 5 gantries to latest technology for proton radiation.

They were give a 25 million dollar federal grant to do long term study of prostate cancer and treatments. I am part of that long term study.

Again speaking for my experience with proton radiation treatment. I had low dose 30 rounds of proton. My R/Os explained to me (and you can read research also) that the radiation treatments I was receiving does not kill the cancer cells NOR the normal cells. It damages them. With cancer cells are damaged they cannot reproduce and eventually die. It is also why you see a lot of information on hormone treatments as they restrict testostorone which feeds prostate cancer cells.

Normal prostate cells when damaged by radiation can heal and reproduce themselves. So you can see by treating all prostate (like I was) these is how Mayo Jacksonvilled and UFHPTI were using radiation treatments. I had the Decipher test and PSMA. My Decipher test came back low risk from the original biopsie risk of intermediate. Thus my R/Os removed the original treatment plan of radiation and hormone treatments to radiation only.

Some new radiation treatments actually are at a level targeted to destroy the cells all together. But I did not have that nor can I comment on that type radiation treatments as did not have it and no experience with it.