Decision time SBRT, IMRT or surgery

@harvey33 I was retired when I had my treatments. Still, the time to and from treatments only took a couple of hours out of my day. (The drive was only 40 minutes from home.) My treatments were always at 2:00PM or 2:40PM each day, so I was able to work that into my regular day.

When my urologist showed me (using an anatomically-correct model of a pelvis) what went on during a prostatectomy, what recovery would be like, and the possible and likely side- and after-effects, I politely said “no, thank you”.

One thing I found is that when it comes to medicine and treatments is that the patient and doctor have to click. Otherwise, like finding another mechanic or dentist, you just have to look elsewhere.

My decision was based on side-effects & quality of life.

At 65y, With a localized, 7(4+3) and PSA of 7.976, I put together a spreadsheet and listed across all treatment options. Then I listed down all possible & possibilities (%) of side-effects from each type of treatment, and gave each one a score. The one with the lowest total “score” ranked highest. We then took that list, and narrowed it down based on the preventions available related to each individual type of treatment.

I then “scored” the quality of life priorities that came out of my personal introspection, and compared that final score result with the treatment options score result. The score that was closest matching was my 1st choice: Proton ranked 1st —> then IMRT —> then SBRT —> and last was surgery. (I was not a candidate for focal therapy.)

I also considered that should there be a recurrence following primary radiation, that with radiation I would have more salvage options.

@harvey33 You're struggling because it's impossible to have enough information in advance to make the optimal choice. It's only afterwards that you discover whether surgery or radiation caused difficult side-effects (and even then, the other might have been worse).

There's just too much variation post-surgery/radiation from person to person to select one logically; otherwise, they wouldn't be offering both of them to you. Everyone who shares their experiences with you here is working from a sample size of 1.

@harvey33 I was "lucky" that I didn't have to choose: my cancer had already escaped to my spine, and they don't offer prostatectomy as an option for metastatic cancer.

In fact, they didn't used to offer radiation either — the assumption was that we'd be dead in a very few years, so there was no point putting us through that — but then new research showed that together with doublet therapy and MDT (metastasis-directed therapy), PDRT (prostate-directed radiotherapy) was highly effective at stalling oligometastatic prostated cancer, sometimes indefinitely, so standard of care is starting to change.

Can't help with surgery because I, like @northoftheborder, was diagnosed after the cancer had already metastasized to my spine and lymph system. Surgery was never an option. I remember being grateful for that because incontinence was my greatest fear. I did have 20 sessions of IMRT to prostate and SBRT to spine. I have also been on ADT/ARSI for the last 14 months and was recently told that I would be on it for life (or until it stopped working). Radiation was pretty uneventful with minimal side effects. Some fatigue following treatments but certainly not debilitating. There was and is some mild bowel urgency but not to the point of incontinence. The other thing that I came out of IMRT with was that what little urine flow I had was turned off. Flomax and drugs of that type work well for most but I can't take them because of the rapid decrease in blood pressure they cause due to heart failure meds I'm already taking. So, I use a catheter 5-6 times a day. I'll take that over incontinence any day and it's just part of life now.

ADT comes with another list of side effects as you are aware. Some, such as hot flashes, seem to diminish with time. I still get them on occasion but certainly not as often or as severe as the first 6 months or so. I am battling some weight gain and some weight redistribution to belly and boobs (think Buddha). The hardest part of ADT for me is the fatigue. The only way I've found to get through it is exercise (walking a mile or 2) and resistance training (I use resistance bands). I have to admit though, that there are days I just say, "I'm tired" and sit down. My wife passed years ago so the lack of libido associated with ADT is really not an issue for me.

Helpful or not, that's my story. Best of luck with your decision making and your treatment.

@tattodice thanks for letting us know. Glad things are going well.

Who was your surgeon?

@tattodice
It sounds like some good news.

I have gotten myself so confused I am not sure which way is up at this point. I had pretty much decided on SBRT and then started researching Focal Therapy and asked the surgeon at Duke (which is where I went for 2nd opinion) and was told well you might be a candidate but would need a second biopsy and would I be interested. I asked why this wasn't brought up in our original meeting and if my insurance would cover this. He went radio silent with no response from that, I asked again about insurance and finally got a response from a nurse. The surgeon is away for a week or so and was told he should get back to me in a few days. It amazes me that a question like would this be covered under my insurance is something they should basically know.

I really don't like the sound of the side effects from any of the procedures and I have some other issues that I feel will cause a issue with surgery and since I own my own business its going to be hard to be away for that long.

@harvey33
I know a few people that have had SBRT to treat their prostate cancer and they want to work right after.

I had 40 sessions of IMRT, went in every morning for it. I went to work right after for a full day.

Focal therapy isn’t going to Take that much time. What have you been told? What kind of focal therapy are you looking at? There are a number of different types Cyberknife , HIFU , NanoKnife , Cryotherapy and TULSA-PRO and more.

@jeffmarc

That is part of my frustration they have not said which Focal Therapy but best I can tell the only one my insurance would maybe go with would be the NanoKnife for primary treatment and that may be a hard fight. This surgeon that I met with at Duke, lets just say my first opinion was not optimal and it appears as though he is on vacation so not response from him just a nurse and was told he should be in touch in the next few days.

If you want to get a really great doctor at Duke, try to see Dr George, He is really good and you would be really pleased with him.

Duke North Carolina Durham
Dr Daniel James George GU Oncologist
Dr. Andrew Armstrong genetic issues