IMRT success story's

As I draw closer to my starting date of 42 days of treatment with IMRT my mind is running wild about curing this dreadful disease. At the same time I'm worried about side affects during treatment BUT the more I read the more I worry about LONG term side affects that show up a year or longer away. Some of you have traveled down my path of being treated with IMRT only and my questions are did it work for you? what were your side affects during and after treatment? was there anything really bad that happened long after treatment??... I could go on and on but I won't. I would truly like to hear from as many as possible about your experience. I try to not worry and stress over it but it would help to know as much as I can. You all have been great with the info you have and continue to share... Trust me, it helps!!..

Thanks
Jay

JNF, thank you so much for sharing that, I can't tell you how much that helps me control my anxiety.

Jay

Thank you Michael I truly appreciate you sharing your situation with me. Have a great evening.

Jay.

I had IMRT along with LDR Brachy when I was 64. I'm now 72 and have had no side effects what so ever, no ED and no urinary or bowel issues.
I had high risk cancer, G 4+3 with a psa of 40. My psa has been consistently .05 for nearly 8 years.

Sorry I can't reassure you.

I expect that you recall I was not so lucky and got the whole 9 yards of side effects from everything.

The 80Gy over 40 treatments gave me cramps, large gas blisters in my colon lining, the 'radiation craps', mucous leakage, frequent explosive and painful bowel movements. All of that got progressively worse until this past Oct-Nov-Dec when the side effects flared (got much worse than they had been) just past the 3 year mark after treatments ended. In mid-Dec 2016 they backed off quite a lot, not so bad now and continuing to improve.

My major-league Longshoreman's hemorrhoids bled much worse for a while too, also much better now. The 3 year post-treatment nadir was the peak. My colon, however, continues to consider a clean toilet to be a serious challenge.

It would all be worth it if the dam PSA would stop rising though......

My radiation therapy was IGRT, so I had 3 fiducial markers in my prostate. They plan the treatment fields down to the millimeter.

You might ask your RO about the development of your treatment plan. Vanderbilt (in Nashville) had 3 physicists on staff to develop the treatment plans. Mine was based on a fusion of the mpMRI and CT scan, and seems to have worked quite well.

The side effects were minimal. Toward the end of therapy I had to urinate a lot more frequently, the peak being about 8 times a night the last week or two and for a week or two afterward. That cleared up over time, diminishing quickly at first then rather slowly over the next year or two. Today I'm back to baseline. I have no urinary leakage, no bowel issues.

I had blood in urine two times a week apart, two years after treatment. It's never happened since, so I'm thinking it was a burst capillary or something. Kidney ultrasound and a cystoscopy found nothing of concern.

While on 3 years of hormone therapy my PSA was undetectable. Now that I'm off of it, my PSA has come up a little bit to 0.5 while my testosterone has recovered to the normal range (it was 350 in December). If it stays there, we're good. (My case is very high risk, so my enthusiasm always has a little asterisk next to it. I take success day by day).

So, at this point, I'm more than satisfied with my IGRT + HT treatment plan.

There are two "sayings" that guys who have had radiation therapy share amongst themselves which are quite illuminating:

1) Never trust a fart

2) Radiation is the gift that keeps giving


Saying 2) in particular is the basis for the "rule of thumb" that radiation therapy is best suited for older guys.

sheepguy said...
There are two sayings for RP that apply as well as these do to RT.

1) You'll never get an erection without injections and pills..

2) Your definition of "continent" is you only leak when you move fast .

There are exceptions to both just as there are to your "sayings" for RT

Actually, you are sorta close, but not quite right...and I haven't heard of either of these in compact "sayings," but they are indeed discussed amongst men treated (any treatment mode) for PC:

In the first case, the thing to be aware of is that your physician considers erectile function to be a success even if you require the "assistance" of PDE-5 inhibitors...whether you were using them before treatment or not.

In the second case, the thing to be aware of is that your physician considers continence to be a success if you require no more than one absorbency pad per day...whether you were using them before treatment or not.


A lot of guys are caught off-guard by these "definitions" of treatment success...mostly because they become aware of their doctor's definitions after-the-fact.

Jaydubs said...
Thank you John T.

In the shop .... Do you glow?? lol I like your sense of humor

Thanks
Jay

sadly, no.
I've also not developed x-ray vision.

Andrew

Hi JackH,

You get my attention on the late-term side effects of radiation.....bleeding from the butt is going up in 10 years!!!!! Sounds scary. I am 54, and is going to take SBRT few months later. Yes, I agree the late-term effect of radiation may be under-reported. I didn't hear too much here in HW. Any good/detail reports out there on the late-term side effects for all radiation therapies (IMRT, IGRT, SBRT, etc..).

Good link there, Jack.

The adjuvant radiation was scheduled 2 weeks after the surgery. It was scheduled to begin 3 months after I had started Luprolide chemotherapy (assuming I was continent, which I was). My medical team explained the reasoning for the coordinated strategy as I went into therapy. I understand "salvage" radiation therapy to be administered after the primary intercession - usually surgery- has failed. My team recognized my G7(4+3) to be aggressive and dangerous so I got the trifecta right off the bat.

The case is often presented to us in the most optimistic terms, minimizing costs/side effects while maximizing the potential benefit to the patient. That creates a gap between what you expect and what you get. That also presumes that we can't handle all of the facts.

I understand that dying of prostate cancer can be a protracted and painful process. I really want to avoid that if I can so I have done/am doing/will continue to do the treatments. If it were not for the open mention here of the enhanced chance of getting Shingles after you have Luprolide chemo, I would have been much more surprised by this fancy itchy bloody waistline belt of rash and sores. I am also very glad that I got that Shingles shot before I started PCa treatments as I know this new little gift could be much worse.

I had my 14th out of 39 IMRT treatments today. I have noticed a definite increase in trips to the bathroom in the past week as well as moderately swollen/bleeding hemorrhoids. Previous to the start of radiation, my RO suggested preceding it with HT, and I received a 2.5ML shot of Lupron, a 3-month's dose. The Lupron dropped my PSA from 0.3 to undetectable.

So far I haven't noticed any other side affects from IMRT, but I'm not even half done yet other than a bit of fatigue which could be from other things too.

I had double duty radiation therapy. HDR brachytherapy and IMRT. It worked wonderfully ith great cancer control. The gift it keeps on giving me is undetectable PSA, compete continence and sexual function. And I did trust my farts!!!!

IMRT is excellent treatment and I am sure you will do very well.