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Would love to here from 2 or 3 year out IMRT/IGRT patients.

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Prostate Cancer
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Posted 2/4/2014 6:07 PM (GMT 0)
Hi, and thanks for reading.

After being diagnosed with prostate cancer, Gleason score 6, 1 core positive (10% of biopsy), 1 Core PIN, 3 cores suspicious and the rest benign, I have decided on IMRT treatment. After Four gold markers and plenty of reflection I had my first treatment yesterday with another 44 to follow.

I am 50 years old and couldn't believe I was diagnosed with cancer as I feel good. The blessing here is I believe they caught it early. My original feeling was to watch and wait, but have read about too many that have done that and then regretted that they didn't act sooner, so I figure lets just "nip it in the bud".

I have to admit i'm more concerned about the side effects than I am the actual cancer, especially ED. I would love to here from fellow cancer patient brothers who decided to go the IMRT/IGRT route and what their side effects were, especially with regards to ED, two or three years down the road. Will I be having sex at 55 or 60??

I meet someone great recently after a brutal 25 year marriage and nasty divorce 2 years ago and was just getting back on my feet when this cancer thing hit. I just feel like my manhood is going to be lost.

Anyway Thanks again for all the great info, don't know what i would do without this forum.

Sincerely, john

Post Edited (john-pc) : 2/4/2014 12:06:19 PM (GMT-7)

Posted 2/4/2014 7:09 PM (GMT 0)
I had radiation delivered by seeds and am almost one year out: still a sort of burning feeling inside, sex has changed (orgasm can be painful but not bad when compared to not having one at all - "hurts so good" kinda of feel), no erection/ED issues at all, I am still on Rapaflo (went off and the flow slowed so back on for a bit & hoping I can hop off in a month or two - am testing it).

I can totally understand the feeling of the loss of manhood. Hopefully others who have had IMRT will be along to give their input as seeds another kettle of fish.

Good luck and I pray you've beaten the cancer.
Posted 2/4/2014 7:45 PM (GMT 0)
John,
I had IMRT/IGRT with HT in 2008. I have been off and on the HT since. During my last holiday I was regaining erectile function but not enough to make a difference. However, I was not taking any ED drugs as I have no partner. I think if you start with some rehab you may have a good chance of regaining some function. By the way I was told before treatment that I would not regain any function. Also my stats were a lot worse than yours so you have that in your favor.

Good luck,
Don
Posted 2/4/2014 8:18 PM (GMT 0)
John, I had IMRT/IGRT, but that was 3 months following surgery because my PSA never went to zero.

At about 2-2.5 years out I saw a tremendous leap in recovery from ED. For the last year I have had a very satisfactory sex life. 70 percent of the time I need no ED assistance.

I recall conversations here from many who went the radiation route and saw no real drop in the sexual arena. That is always discussed as one of the benefits of approaching treatment via radiation. There has been talk about the fact that there may be some drop off in that area but is usually discussed as being at some point years down the road.

Good luck and best wishes,

Sonny
Posted 2/5/2014 1:25 AM (GMT 0)
Welcome to HW.

I am 2 years out from IMRT. Get a little more bowel trouble than before. I've got some mild ED that showed up about a year out. The occasional pill plus extra touching and taking slower works just fine. ED is very unpredictable so your mileage will vary.
Andrew
Posted 2/5/2014 2:14 AM (GMT 0)
Since I am an adjuvant RT guy, I'll try to separate what I know is surgery vs RT.

Surgery:
All nerves taken, so no discussion of pills doing anything more than helping any possible regrowth, but I'm trying. Trimix is my go-to solution for ED.
Incontinence was severe. I am now at two pads a day, was down to one before RT.

RT:
Damage to my bladder and urethra from radiation scatter. This manifested itself about 18 months out from the end of RT as periodic clots and blood in urine (December 2011). A cystoscope confirmed damage. It continues today unpredictably, sometime significant, others, just a day or two. I wash a lot of sheets.

Fatigue. It used to be extreme, is less so now, but still brings me to a crash if I don't get an afternoon nap.

Immune system crashed after RT, docs say because so much bone marrow in my hips was exposed. It has not returned, so if someone sneezes, I'm out of there. No movies at a theater, no sporting events, rarely a restaurant. It has killed my international travel job, as I can't be exposed to anything, and can't be vaccinated for a lot of things I would have been exposed to. I carry a bottle of high end antibiotics at all times.

Colo-rectal issues. I had major surgery on my colon & rectum in 2005. The RT caused serious irritation/damage to the already damaged tissue. As a result I have 5-8 BMs per day. My lower colon suffers from the irritated tissue, so ...

Mind you I can break anything, and have a special corollary to Murphy's Law - he was an optimist.
Posted 2/5/2014 7:39 AM (GMT 0)
I'm 3.5 years past my last IGRT zap. I did BT before and HT before during and after for a total of nine months. I take 10mg of Cialis daily and I wake up with wood and can function.

ed
Posted 2/5/2014 7:01 PM (GMT 0)
5 years out and never had a problem with ED.
Posted 2/5/2014 10:06 PM (GMT 0)
My husband had the exact same treatment you are having almost two and a half years ago (at age 60). He has pretty much the same slight ED he had before treatment began, and has no urinary difficulties whatever. He actually has a much greater bladder capacity now. He had slightly more active bowels the first six to nine months after treatment, but that has faded away. He never had any fatigue at all, either during treatment or after. His PSA bounced around, but is now right where it is supposed to be and he is, to this day, glad he chose IMRT.

I wish you the best!

Juliet
Posted 2/5/2014 11:39 PM (GMT 0)
5 years out. No ED and no meds.
Posted 2/6/2014 3:37 AM (GMT 0)
Thanks everyone for the great info. There are so many choices, but so much conflicting info on the various PC treatments. Hearing all of you and your personal experiences is very reassuring. It been a tough time since I was diagnosed back in November, but things are getting better and i think i made the right decision. I had my 3rd IMRT treatment today with 42 to go!! Yay. One thing is for sure, I'm in great company and I really appreciate all of you and this forum. Thank-you!!

John
Posted 2/6/2014 3:52 AM (GMT 0)
John,
Hang in there buddy. IMRT is a bit of an endurance test but you'll do fine.

Andrew
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