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Posted 9/15/2017 3:01 PM (GMT 0)
I would like to hear from guys that have had ANY form of radiation therapy done to their prostate, that did NOT have the prostate removed.

1. How are things 1 or more years out? How many years out are you?
2. How are erections?
3. Incontinence issues? Bladder, Bowel?
4. Over ALL how would you rate your experience? Do you regret having it done?

I am Gleason 6, active surveillance, am just thinking ahead about treatment options.
Radiation VS RALP

Thanks
Posted 9/15/2017 3:27 PM (GMT 0)
Thanks for starting this thread. I'd very much like to hear responses. I'm currently a Gleason 6 as well and on AS, so I'm trying to gather as much info as possible (always preparing that my AS might have to end quickly).
Posted 9/15/2017 3:33 PM (GMT 0)
1) 4+ years
2) Fine--no different than before treatment
3) No incontinence. Slight increase in urgency when I have to go. Stream is a little bit weaker, but one Rapaflo every 4-5 days does the trick. Sometimes I skip the Rapaflo and its no big deal.
4) Overall it was fine, but while my SEs were very, very minor--they're still more than you'd have on AS. Also, you didn't ask, but I have no ejaculate anymore. (You'd also be looking at having radiation as a mono therapy, instead of the combo treatment that I had.)
Posted 9/15/2017 4:13 PM (GMT 0)
There are several different kinds of radiation therapy - I had SBRT (5 external beam treatments)

1. No symptoms other than loss of ejaculate 7 years out
2. Erections are excellent - no diminishment whatever
3. No incontinence (that is very rare with radiation - usually only if you had issues before), no bladder or bowel issues. I pee much better than I did before. Never wake up at night to pee.
4. Excellent - no regrets. I probably could have stayed on AS another year or two if I knew in 2010 what I know now.
Posted 9/15/2017 4:16 PM (GMT 0)
1. 5 years out - life is beautiful.
2. Gets the job done just fine.
3. Increase in urgency, made existing hemorrhoids slight worse, had extra treatment.
4. Boring, no drama, no glowing in the dark, no gaining random supper powers, sigh ...

Do I regret? No, I highly recommend it and am glad I did it. And glad I didn't lets a surgeon attack me with a knife.

Andrew
Posted 9/15/2017 5:27 PM (GMT 0)
I am the poster-boy for radiation success.

I had double radiation, HDR Brachytherapy and IMRT. You are low risk and can use a mono-therapy approach.

I am nearly seven years out. Complete cancer control. No bad side effects. Urinary, bowel and sexual are all fine and just as they were before treatment. The only real side effect is reduced ejaculate, which is common.

I am so happy to have had the experience because it has been completely successful. No regrets and I am on a constant soap box to all newly diagnosed men to seriously consider using radiation. We are in a way blessed with this disease and treatment options because surgery is just not required. With so many cancers surgery is all but required. For PCa if surgery were outlawed, we would be just fine with the various effective radiation based treatments that are available to all. Several men on this board are an absolute testament to that including Tall Allen, MichaelT, Paxton, Andrew, myself and numerous others.
Posted 9/15/2017 7:17 PM (GMT 0)
1) 2 1/2 years out from HDR Brachytherapy

2) They still happen! Maybe a little softer than before, or a little bit longer to get there, but I'm getting the job done. Occasional use of cialis.

3) Only thing is when I need to go I often need to go quickly.

4) At this point I rate my experience highly. The most remarkable thing is how unremarkable things are and how very little things have changed. No regrets.
Posted 9/15/2017 7:54 PM (GMT 0)
I'm over 8 years out with high risk PC. Combo low dose brachy and IMRT for a G4+3 with a psa of 40.
psa dropped to .2 immediately and has been <,1 for the last 6 years. At age 72 I have no problems with errections and never leaked. Urgency is greater than before treatment, but not an issue. I don't regret treatment.
Posted 9/15/2017 9:10 PM (GMT 0)
Unfortunately, it's easy for the guys who have been successfully treated with radiation, cured and no major side-effects to post their stories while the men who are not so lucky choose not to post or no longer can post their stories...

But I must ad this...Over the last 10 tears, radiation treatment has made great progress..The equipment (LINACS) used and the techniques employed have advanced tremendously especially in eliminating or greatly reducing side-effects and negative outcomes..So the horror stories that gave radiation a bad reputation 10 or 15 years ago are simply no longer valid....
Posted 9/15/2017 10:56 PM (GMT 0)
Brian,

1. I'm 17 months out from SBRT with Dr King at UCLA. Cancer control is right where it should be. Given that my tumor was "abutting the edge" of the prostate, the RO agreed with a +1-5mm positive margin of treatment. Combined with a PSA of 21.9 I felt this was a better treatment choice than surgery.
2. Erections are no change at all from pre-treatment baseline. I took a breather from any activity during the treatment period plus one week, but I've been back in business ever since under the use it or lose it policy. Lupron knocked out my interest almost completely for six months, kind of forcing myself into action during that time. I feel so much better with the return of my testosterone level.
3. My incontinence and stream were not great before the treatment. I stayed at my pre-treatment baseline for about six months, and then control worsened along with a significant burning sensation. This was described as a radiation "flare" by my RO, and he suggested it would last 2-6 weeks. The burning lasted about 8 weeks, and the incontinence has continued on. It feels like having a water valve with a worn out gasket. Simply can't shut it off or hold. I totally eliminated caffeine which helped, but I'm still in trouble pretty quickly after initial urge.
4. I'm completely satisfied with the cancer control, as well as the treatment procedures and medical services. Improvement of my urinary difficulties was the only area that may have favored surgery in my case, but I decided against it due to the possible reduction in cancer control (see nomograms for unfavorable intermediate risk mortality and recurrence) and the risk of total loss of urinary control.

Here's hoping you stay on AS and never cross the bridge to treatment.

Jim
Posted 9/15/2017 11:44 PM (GMT 0)
4 years out, external beam, 30 sessions, low dose brachy and boost radiation 3 months after seeding, so plenty of radiation exposure

Everything is normal except loss of ejaculate, 90 percent of hard but I was trending that direction anyway and I am on 5 mg of Finastiride, which can cause that. I don't really care about that at this point in my life

Not sure what it means, but I seldom see posts of failed radiation, as in recurrence and permanent side effects, that you typically see with those who opted for surgery as a primary treatment? Especially with the newer delivery technology.
Posted 9/16/2017 12:10 AM (GMT 0)
1. How are things 1 or more years out? How many years out are you?

Four years out, doing great!

2. How are erections?

Erections are, in the words of the great American poet Tom Waits: "Harder than Chinese algebra"

3. Incontinence issues? Bladder, Bowel?

None.

4. Over ALL how would you rate your experience? Do you regret having it done?

I would rate it 10 out of 10. Love it!
Posted 9/16/2017 4:52 AM (GMT 0)
Over 3 years out with diminished ejaculate. Everything else pretty much the same as before BT. Signature tells the rest of the story.
Posted 9/16/2017 11:15 AM (GMT 0)
1. 9 years out from LDR Brachytherapy.

2. Erections are still the same.

3. No incontinence, bladder or bowel issues.

4.. One of the best decisions of my life that I surely do not regret.

Only SE is diminished ejaculate.

Jim
Posted 9/16/2017 12:05 PM (GMT 0)
Almost three months since SBRT. No ED, no urinary issues, no bowel issues, no infection risks and extremely happy so far. Have my first post PSA in about a week.
Posted 9/17/2017 12:19 AM (GMT 0)
Hey Brian .....only 9 mos. out from 81 Gys. and 6 mo. Lupron ....erections-90% with Viagra or Cialis( soft without)...same slow stream as before radiation...Tamulosin daily ....NO other issues at all.....very glad I chose the rads.......David
Posted 9/17/2017 4:08 PM (GMT 0)
1: I am 1.4 months after IMRT, but also had HDRBT. Unlike all the posters so far, I do have some side effects:
A: Dysuria (burning sensation when I urinate) can be significant at times. MO thinks could resolve over time.
B: Chronic Radiation Enteritis. I appear to have some damage to the bowels that can cause constipation and bowel obstructions. So I stay on a doctor order regimen of stool softeners to prevent that. I have had a small bowel obstruction and it was a very bad experience in the hospital. Maybe over time this could resolve, but depends on the damage.
2: Not yet consistent but I just finished ADT and T is still relatively low, but we are working on it! On Levitra.
3: None
4: I don't regret the path, as a G9 I think it was the right one. I do regret not going back to UCLA for the IMRT like I did for the HDRBT. I probably traded convenience for experience. Overall cancer control is good so it worked. When you go to war, some of us come back with battle scars.

Good luck -JR
Posted 9/17/2017 10:27 PM (GMT 0)
wow, thanks for the replies guys, keep em coming. I am seriously thinking about this. My PSA is slowly going up-not in the danger zone yet, but i see the writing on the wall. I figure with a total A radical prostatectomy, the odd's are against you that the nerves will be either sparred, or not damaged, not to mention the ordeal of going through such a surgery.
Posted 9/18/2017 12:29 PM (GMT 0)
I'm now 9 months out from completion of SBRT. I took several months deciding which route to take, and as you can see from my signature, my pathology wasn't that much worse than yours. (e.g. mostly G6, one core 3+4.)

At this point, I'm quite satisfied, overall. PSA is gradually dropping, and from what I've read, that is a good thing.

Erections. . . not that good. Better living through chemistry, though. Had issues before, slightly worse now. At my age, though, less of an issue (almost 70).

I, too, had some side effects from the radiation. I'll write off the early ones that ended within weeks (pain on urination, urgency, radiation proctitis). What remains is some radiation enteritis. Be aware, though, that I had IBS for years prior to radiation and we knew that this could happen. I still had other reasons for choosing radiation over surgery. Even the enteritis resolved, though, but it took about 6 months.

At the present time, I'm a happy camper. Almost everything back to baseline, and PSA is behaving. Live is really good!
Posted 9/21/2017 9:53 PM (GMT 0)
Just had the first of two sessions of HDR BrachyTherapy a couple of days ago. Procedures went well but observing and while trying to cope with the early side effects of frequency, increased urination at night, blood in urine and burning sensation. I understand these will get better with time.
Posted 9/22/2017 12:55 PM (GMT 0)
1. Just completed SBRT Tx in July of this year.
2. No problems
3. No incontinence, but experienced an increase in urgency. Also some pain/discomfort w/bowels, about a week after ending Tx, but that has since subsided.
4. Overall a good experience, especially in light of the side effects reported from other types of Tx. No regrets.
Posted 9/22/2017 3:06 PM (GMT 0)
1. How are things 1 or more years out? How many years out are you?
I'm 33 months since finishing proton treatment. The jury is still out on my case. My PSA has fallen to .75 but from what I understand, radiation guys with PSA nadir of under .5 have lower risk of recurrence. I hope to reach that nadir soon.
2. How are erections?
about the same as before treatment, maybe a little worse. I take 5 mg of Cialis a few hours before and that seems to help most of the time. My ejaculate has diminished considerably, but thankfully still have some.
3. Incontinence issues? Bladder, Bowel?
I had proctitis 6 months after treatment with minor bleeding but that subsided without treatment after 6 months. I have some urinary difficulties such as urgency, frequency and minor dripping. None of these are significant issues for me. I dont need a diaper or pads, nor does any of this cause me difficulties in everyday life.
4. Over ALL how would you rate your experience? Do you regret having it done?
If I have a recurrence I will regret having it done. Otherwise my experience has been a positive one. I will say the prospects of PSA bouncing for the first few years and the ever-present risk of prostatitis is worrisome, and is my biggest negative with the treatment.
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