Cancer support group tonight... is radiation ever appropriate for mid-grade PCa in a younger guy?

So out of 7 of us at tonight's prostate cancer support group, I'm the only radiation guy. I recognize the G9 and whatnot is rather uncommon statistically. But *only* surgery seems to be chosen by everyone with mainstream-type PCa.

One 51 year old guy had 5 of 12 cores positive, one 3+3 the rest 3+4. He was really struggling with his treatment choices, surgery or some kind of radiation. The surgery guys used every cliche there is about surgery. He won't get his MRI study results for a week. But man, the urologists do such a hard sell on surgery that guys don't seem to look beyond it.

I told the guy the good news is he'd probably have a good outcome either way he went, as far as cancer is concerned. It's a matter of what side effect risk profile he could live with. And, the MRI will give him guidance about how contained it is, which could greatly affect his decision.

It's frustrating to sit there as the only voice for radiation, since my case is so far outside the mainstream it seems inapplicable to the G7-ish crowd. They listen politely, but there's nothing but rather glassy looks regarding the utility of radiation. "Ok for you, but I could never..."

What do you guys think? Is radiation ever appropriate for intermediate risk cancer? Is it only relegated to a "hail Mary", a treatment for people too frail for surgery? Older (70-80+) guys only? Only a last-ditch option? Only for very-high-risk types? Or is it a viable choice for mid-grade cancers for people concerned greatly about surgery's incontinence and ED side effects?

Surgery is still a good treatment for mid level PCa. Patients absolutely need to know the potential side effects. Also, they have about a 30% chance of needing radiation and even ADT.

They also need to realize that this is a major surgery.

I believe that in the coming years, proton beam radiation will be the primary treatment option for mid level PCa.

I might have selected this option if I didn't have to travel and be away from my job for 8 weeks. I didn't really spend time studying this in detail.

Al

You're darned right that radiation can be appropriate (said by a G7 who chose rads). I was offered surgery and IMRT, but I did the research and learned about SBRT, HDBT and LDBT as well. The difference was that I WANTED to learn and take an active role in my treatment. But I do that with all of my medical issues. Some people don't. They just want someone (the Doctor) to tell them what to do. That way they don't have to try to learn any technical/medical stuff, and they don't really have to "own" the outcome. If it goes south, the Doctor steered them wrong.

I think that if they do any research, they will learn that for most low and intermediate risk PCa patients, any of the mainstream treatments will have about the same disease control results. But that is if they either research it themselves or have an extraordinary support group facilitator.

I don't want to bash support groups. I have attended several different ones and continue to regularly attend one. The one thing I note about all of them is that they are primarily populated by men who have had surgery some years ago and are now dealing with recurrence, or the advanced/high-risk patients who need to know about all of the newest and best tools in the box. I've only been attending for about 7 months, but in the two groups I've followed, I have only met one other newly diagnosed patient. All other members are long-term high-risk guys, and most have had surgery first. I may be the only current patient who had radiation as primary therapy.

Also, it seems to me that the support group facilitators are themselves advanced/high-risk patients who have little technical knowledge regarding the treatment of low to intermediate-risk disease. In one case, after sharing the details of my favorable intermediate-risk diagnosis (mostly tiny G6's, one very small G7, low total tumor load, etc.) one facilitator asked me why I wasn't considering ADT. Personally, that's the last place I want to go, but didn't he even know that ADT is not standard of care for low or intermediate risk cases? I didn't argue the point, but I haven't been back to that group, either.

I apologize for the rant, but I am seriously considering leaving all support groups. The ones I've been to seem to only address the needs of the advanced, high-risk or recurring cases, with very little to offer the newly diagnosed and/or lower risk patients. We may need help, too, but I've found this forum to be far more beneficial than any of the in-person groups.

Thanks for the thoughts. Maybe a thread like this will be helpful for those considering these options.

This support group frequently has new guys, usually 1 to 3 or so that are in the treatment decision phase. Surprising. The facilitator is a female medical social worker, and definitely there to manage the time and make sure anyone who wants to speak gets a chance. Truly a facilitator.

One other comment I heard repeatedly was that they wanted surgery so they were "sure it was gone" and they'd "never have to deal with it again". Their belief was radiation was a temporary fix at best, recurrence was virtually certain at 10+ years, and thus only appropriate for old guys with less than 10 years left. I'm serious, that was the gist of their positions. One guy said he heard that after radiation, a few years later there was a risk of the bottom of the bladder cracking all around the outlet with internal bleeding due to the radiation. Oh my. I felt like a boulder in the stream of that whole discussion.

I spoke with them individually in a side-bar discussion after the meeting, and made sure they knew they need to follow up with PSA checks. Anyone's PCa can recur, and I have a friend who chose not to do the post-surgery PSA follow up for 4 years. His recurrent PCa was found due to a bone break, with a PSA of over 400 at that time. He's discouraged to this day, and routinely expresses regret about not doing the simple follow up checks. He figured by surgery it was "done and dusted", so no further concern was warranted.

I also made it clear that radiation and surgery have similar cure rates, but different side effect risk profiles. One needs to consider what spectrum of side effects they'd find easier to deal with. We talked a little about that, too.

We sometimes get accused of a "pro radiation" bias on this forum. I'm not so sure it's a bias per se, but rather presenting an option that so many people seem to completely discount up front.

And yes, I'm not sure how helpful those live cancer support sessions really are. There's much better, much more detailed support on this forum. I keep recommending it to people, but few seem interested. Why should they be? Their doctor told them everything they need to know! (Yeah, I'm not comfortable with that...).

JNF:

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Of course it is and the more technologically advanced treatment like HDR brachytherapy and SBRT external ne should lead the way. Better cancer control than surgery and much less in the way of side effects.

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I didn't know radiation was superior to surgery.

I thought the cure rates were similar and it is prudent for the patient to study the SE profiles

Mel

Mel, as risk goes up the surgery effectiveness lags behind radiation. Primarily because radiation covers a larger area than the surgery can. So if a man is locally advanced, surgery will probably fail and need to be salvaged by radiation. If he had the radiation in the first place the areas the surgery couldn't reach were radiated and would provide better cancer control.

If the cancer was low grade and completely confined to the prostate, the two treatments are basically equal for cancer control So then one should choose the least damaging method which would favor radiation, or better yet, AS.

Of course if the man had cancer outside the radiation area, neither surgery nor radiation would have been effective and systemic (drug based) treatment would be needed.

JNF said...
Tennisplayer, for years there have been reliable 10 and 15 year numbers for external beam, HDR and seeds brachytherapy. SBRT now has at least 9 year numbers.

The 15 year numbers for seeds and HDR were available when I was researching after my 2010 dx. So the information is there. It is too bad your doctors didn't help. I assume you didn't find HW in time for us to assist before choosing surgery.

Good to see that your initial result from treatment is favorable.

JNF- You are spot on! I wish I'd got here much earlier. It is nice to know- even now - that there is good data out there on the effectiveness of radiation. Plus, people joining here will be directed to that data. Knowledge is power.

I bet it makes for some exciting shows out in the yard at midnight after a few beers!!! Quite the entertainer you have become.

I participate in three prostate cancer forums, and would agree that this one is somewhat "pro-radiation", while another is decidedly pro-surgery, and a third one is all over the place with many therapies, perhaps over weighted towards FLA, HIFU, cryo, and other less used techniques.

That doesn't mean that everyone on each forum is of the same opinion, but I think that it does mean that you need to visit all three to know what's being discussed.

The local support groups that I have attended had maybe 12-20 participants, and they seemed to be very open-minded. They are always interested in my opinion, and wished that their doctors had offered them (or they were within guidelines for) the option of AS. So, maybe look around for a PCa support group that is community-based, rather than those sponsored by a hospital, and/or moderated solely by a surgeon.

Well done. Your diligence and open mind will serve you well.

trailguy said...
Perhaps it would be more appropriate just to move G7 into "high risk" .

I have G7(4+3), did the trifecta and am now back to watching my PSA go up.

All PCa therapies have serious side effects.

That sux. There are no guarantees. No one can truly predict anyone's disease course but only in the loosest generalities. Every distribution curve has people in the tails, both for good and bad, and no one can tell you if you're one of them or not. Most cases fall in the middle, some do much better, some do much worse. But no one can tell you how yours specifically will go!

All we can do is take the most promising choice at the time, and hope for the best from there.

I was 54 with G7 cancer, 12 of 12 cores positive, probably high risk, and i'm in my 7th year of remission. never been incontinent. can have sex with Cialis.

honestly my feeling is "is surgery ever appropriate?"

sure glad my urologist was against surgery for me.

ed

I hasten not to make this an emotionally based situation. I just observe and have directly experienced, that as technology advances we are finding more non-surgical methods of treatment. And that is a good thing.

We are forever seeking the least invasive method to treat all forms of maladies. Surgery is inherently damaging and often significantly alters the body structure. In my opinion when we don't really need it, we shouldn't use it. Thankfully with prostate cancer it has been proven that non-surgical treatment methods have progressed to the point that most men would be well served even if surgery was unavailable.

In many medical cases surgery is necessary and preferred and I have had two of those in the last three years. So I have no bias against surgery per se.