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IMRT radiation long term effects

gkoper's picture
gkoper
Posts: 174
Joined: Apr 2009

I had Davinci surgery a year ago & finished 37 IMRT treatments in late Dec. During the treatments & up till the present, I've experienced little in the way of side effects. But I have heard it could take up to 2 years before side effects kick in.

Has anyone out there experienced long term IMRT side effects.

Thanks for any replys,
George

mrspjd
Posts: 688
Joined: Apr 2010

george, can't answer your question as we are still in the "decision" mode for first line treatment (tx), however, curious to learn more on your stats & if they might be similar to pjd's. guessing you must have posted them prevously, but wondering if you'd mind answering some questions as they might be helpful in our decision process. What was your clincical staging prior to the surgery, as well as your pre and post op gleason, pre and post op psa? what did your post surgery path report say regarding your margins, and did it indicate your post op pathology stage? how long after the surgery did you start radiation? if you had clear margins, did you do the IMRT to be proactive or because your psa went up? did you take hormones prior to or with radiation and if so, what hormones and hormone scheduling were you on? what was your psa after radiation and now? if you'd rather not post the info here, let me know and we can email via the discussion board link. thanks.
mrs pjd

RRMCJIM's picture
RRMCJIM
Posts: 149
Joined: Mar 2009

Hopefully you will continue without any side effects....this cancer seems to leave enough **** in our lives....Mrspjd....I also went thru divinci surgery, the day after George....wow one year this month...my PSA went from 2.8 to 3.85 in a year....no nodules detected with DRE at time of physical...had some trouble with nighttime urination.. Dr had a biopsy done...1 in 12 positive....Gleason 3+3=6.. 15% involvement T1c.. no invasion detected ... post surgery..still 3+3=6... margins clear, capsule contained.. in my case Doc said the big "C " stood for cure....but still tested every 3 months....regrets...sometimes....do it again....Absolutely...I know these facts to be true, because I had it removed and checked, lymph nodes clear....side effects...when I compare it with spending the rest of my life cancer free, with my wife and kids..side effects are nothing We can't deal with..
Jim ( Big Ugly Biker )

gkoper's picture
gkoper
Posts: 174
Joined: Apr 2009

I don't have the comprehensive path report of some at this site, but I'll try to answer your ?s

I was clinical stage T1, PSA 5.7, Gleason score 7. 4 of 12 samples were 38% affected.
Post op; gleason 7, psa .3 at 6 weeks, clear margins & no extraprostatic extensions.

Davinci was on May 21, 2010, PSA went from .3 in late June to .7 in Oct. With that doubling, I started IMRT in Late Oct. finishing just before Christmas. No Hormones.

1st PSA after IMRT: 0.3, 2nd: 0.1. Was told it takes up to 6 months for all cancer sells to die off after IMRT.

Hope this helps.
George

mrspjd
Posts: 688
Joined: Apr 2010

thanks for the info, george. great news that your psa is declining and the RT side effects have been minimal! please keep us posted on your journey after RP & RT.
Best,
mrs pjd

BRONX52
Posts: 156
Joined: Apr 2010

I HAD DAVINCI FEB-2010. WAS CLINICALLY T1C BEFORE SURGERY BUT AFTER SURGERY THE PATHOLOGIC STAGE WAS T3A. GLEASON WAS (3+4) BOTH BEFORE AND AFTER SURGERY. I HAD 1 POSITIVE MARGIN AND EXTRACAPSULAR EXTENSION. MY PSA PRIOR TO SURGERY WAS 5.1. SIX WEEKS AFTER IT WAS 0-NON DETECTABLE. HOWEVER, SINCE I HAD THE 1 POSITIVE MARGIN I WAS SCHEDULED FOR IMRT. THIS STARTED IN APRIL ABOUT 2 MONTHS AFTER THE SURGERY. CURRENTLY HALF WAY THROUGH THE TREATMENTS AND HAVE HAD NO SIDE EFFECTS! I WILL LET YOU KNOW HOW IT IS WHEN I'M DONE. HOPE THIS HELPS

gkoper's picture
gkoper
Posts: 174
Joined: Apr 2009

Sounds like your zapping it all early. I had minor side effects during IMRT: increase in urgency& frequency of urination. Really was much easier then expected. I am only 5 months past, don't know the long term effects. I'll seize the day while I can.

Best of luck on your treatments & keep us posted;-)

George

Kentr
Posts: 111
Joined: May 2009

I didn't have IMRT but I did go the radiation route via brachytherapy. After two years I started experiencing a recurrence of side effects - urgency and frequency. My oncologist said it's not common but it does happen on occasion in or around year number two. I started taking terazosin again (2mg per day) in February of this year and everything has settled down again. I will begin tapering off the med in another month and see what happens.

For what it's worth.

Kent

mssa58
Posts: 21
Joined: May 2010

Hi, I had a Gleason score of 8 prior to my surgery. After surgery they bumped it up to a 9 with a T4 rating since the cancer had invaded the bladder neck. Two months after surgery I had two PSA test with the first one being .013. A week later it had jumped to 0.52 and at that time I was scheduled to meet with a Radiation Oncologist at the VA hospital in Milwaukee, WI. After discussing it with them, plus reading all the research my wife (an RN) had done, we decided I would take the female hormone shots plus radiation. I am now a little better than half way with both my hormone shots and radiation, 22 out of 37 done, and I am suffering from several side effects. The hormone shots have caused me to suffer from hot flashes ranging in mild to somewhat severe. The radiation makes me so tired that most of my time is spent sitting in a chair to tired to do anything. I am also back to wearing pads due to a problem with incontinence along with bowel problems. One good thing is that I temporarily can not eat fresh veggies. At least there is some good news. They use a big needle for the hormone shot but they deaden the area in your stomach first so you don't feel anything. I have felt sick since I got the first of two hormone shots back at the beggining of March. It wears on you a bit after a while and I think part of my depression is due to not feeling well because of the radiation and hormone. They say that some people have no side effects from treatment and I am glad for them. If I had known that I would suffer like this I would have had to seriously consider forgoing treatment and taking my chances with the cancer.

Hopefully you will have better success with it than I do. Good luck.

Terry

2ndBase's picture
2ndBase
Posts: 220
Joined: Mar 2004

I am over 6 six out from 40 such treatments and have no side effects of any concern. The radiation killed all the cancer in my prostate. Bad news is it had already spread and now there is no cure. I choose to beat it without any further treatment therfore I will have no more side effects from now on.

gkoper's picture
gkoper
Posts: 174
Joined: Apr 2009

Forgive me if I posted this before......I'm getting old. BUT...
Cancer is SO limited.....

It cannot cripple love
It cannot kill friendship
It cannot shutout memories
It cannot silence courage
It cannot invade the soul
It cannot reduce eternal life
It cannot quench the spirit
It cannot lessen the power of the resurrection.

Live large 2nd base.

George

BRONX52
Posts: 156
Joined: Apr 2010

FINISHED WITH THE RADIATION!!!---38 TREATMENTS. LIKE YOU, NO REAL SIDE EFFECTS OTHER THAN FREQUENCY AND URGENCY. I GUESS WE HAVE TO WAIT A FEW YEARS TO SEE IF WE GET ANY OF THOSE DELAYED SIDE EFFECTS. I SPOKE TO MY RADIATION ONCOLOGIST AND HE SAID THAT HE HAS SEEN SERIOUS DELAYED SIDE EFFECTS IN ONLY 2% OF PATIENTS HE HAS TREATED IN 25 YEARS. HAD A ZERO PSA GOING INTO RADIATION AND WILL BE TAKING ANOTHER ONE IN AUGUST. LETS HOPE IT STAYS THAT WAY.---DAN

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

Very Nice, I like that. Got an email today from CSN stating that June 6th is National Cancer survivors day! Three cheers for all of us survivors!

larry

BRONX52
Posts: 156
Joined: Apr 2010

I SECOND THAT !!!! IT'S GREAT TO BE A SURVIVIOR AND BEING ABLE TO SHARE AND COMMUNICATE WITH EACH OTHER HAS BEEN MOST HELPFUL. GOOD LUCK TO ALL AS YOU CONTINUE TO BATTLE THIS BEAST !! WE WON'T LET IT DEFEAT US !!!

tdorman
Posts: 21
Joined: Jun 2010

I had IMRT radiation for recurrence of prostate cancer in 2003. At that time only 1 place in Tampa offered IMRT. I had 43 hits. No side effects and PSAs still zero. Had no effect on erections and incontinence.

gkoper's picture
gkoper
Posts: 174
Joined: Apr 2009

Thanks for the reply........thats encouraging news.

Hope your zero's continue.
George

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

Wondered what your stats were before you had your IMRT?

Randy in Indy

tdorman
Posts: 21
Joined: Jun 2010

Can't remember exactly. I had the surgery in 1996 and had zero psa readings until late 2002. My psa was still very low but had moved up over one year to maybe .4. My uro suggested I get radiation. The thing I did not know about radition until recently it it never stops working. I recently had a minor bladder issue that came from the radiation I had seven years ago. I learned that some of the treatments for incontinence are not as effective or long lasting if you have had radiation. The radiation will deterate the rubber in the AUS implant. Collagen and other injections are not as effective if you have had radiation. Radiation is nasty but it works and keeps on working.

tdorman
Posts: 21
Joined: Jun 2010

Can't remember exactly. I had the surgery in 1996 and had zero psa readings until late 2002. My psa was still very low but had moved up over one year to maybe .4. My uro suggested I get radiation. The thing I did not know about radition until recently it it never stops working. I recently had a minor bladder issue that came from the radiation I had seven years ago. I learned that some of the treatments for incontinence are not as effective or long lasting if you have had radiation. The radiation will deterate the rubber in the AUS implant. Collagen and other injections are not as effective if you have had radiation. Radiation is nasty but it works and keeps on working.

tdorman
Posts: 21
Joined: Jun 2010

Can't remember exactly. I had the surgery in 1996 and had zero psa readings until late 2002. My psa was still very low but had moved up over one year to maybe .4. My uro suggested I get radiation. The thing I did not know about radition until recently it it never stops working. I recently had a minor bladder issue that came from the radiation I had seven years ago. I learned that some of the treatments for incontinence are not as effective or long lasting if you have had radiation. The radiation will deterate the rubber in the AUS implant. Collagen and other injections are not as effective if you have had radiation. Radiation is nasty but it works and keeps on working.

Brad1
Posts: 4
Joined: Sep 2011

I had 43 treatments and no side effects for first six months. ED has set in gradualy but Cialis and Viagra used to take care of it. Now a Year later and the little blue pill is has quit me. Doctor said my testorone is low but will not treat me, for he says it would be like pouring gas on a fire if I have any cancer cells still living. I was a gleason 7 (4+3) with 5 of 14 cores showing positive. PSA was 5.8 before radiation, .95 after six months and curently waiting 1 year results. Can anyone help me. I am glad to be here, but would like my love life back.

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

Brad1,
Welcome to the forum. You might want to start a new thread and tell us a little more about your case. How long ago was your radiation? HOw old are you.

Wanting your love life back may require a new plan of attack on your part. Depending where you live there are options for you to research. Have you tried the injections yet? I Know sticking a needle you know where can freak out guys. I've not had to try yet but from what I read its a very small needle and when done properly almost like a diabetic shot. Of course worst case you can have a 'implant device' that is pumped up to simulate an erection.

A Dr. John P Mulhall out of NYC has written a great book called Saving your sex life. He is an expert on issues following Prostate cancer. If a trip to see him is out of the question then ask your local urologist about what he/she would suggest.

There are others that focus on as you have stated wanting your love life back. Your love can be more then just intercourse. I know that is the 'icing on the cake' so to say but I've read their are other ways to bring satisfaction with ED.

Lewvino age 57
Gleason 7 (3 + 4)
Davinci sugery Aug 2009
Having great success with Levitra and/or Viagra

Beau2
Posts: 228
Joined: Sep 2010

Hey Brad,

Lewvino gave some good advice. I found Dr. Mulhall's book interesting and very helpful.

Apparently ED is a strong possibility with radiation. On page 81 of Dr Muhall's book, he states, "Interestingly, radiation causes erectile dysfunction in an identical way to that of surgery". On page 83 Dr. Mulhall's states, "... in the current literature, the incidence of erectile dysfunction three years after radiation versus the incidence of erectile dysfunction three years after surgery appears to be exactly the same."

If you have trouble getting Dr. Mulhall's book (or if you want some immediate input from the good doctor) you may want to look at the following link. It's an excellent video presentation titled "Sexual Problems in the Male Cancer Patient", concerning Erectile Dysfunction by Dr. John Mulhall. Consisting of 4 parts, total time of about an hour and a half, it contains an address to a PCa Cancer Patient group and contains some of the most through and up to date information available.

www.mskcc.org/mskcc/html/94910.cfm

I do the pills (now Levitra) and find them about 90% effective; but sometimes I do get a runny nose, or a headache or back pain; therefore, I prefer the injections (Trimix). Once I got by the fear of giving myself the injection, I found that there were some really positive points in having a two hour erection.

I've only known a couple of guys who have had implants. Both had ED problems for a couple of years and neither was having good luck with pills or injections; therefore, they went to implants. Both men felt it was the best thing they had done and swore by their implants ... they wondered why they had not done it earlier.

All the best wishes in your fight against PCa and getting your love life back!

mrspjd
Posts: 688
Joined: Apr 2010

Source: Dr. John P. Mulhall’s book, SYSL, ©2008 by Hilton Publishing Co, pages 80-81

“Further research has also shown that the dose delivered to the penis is reduced by 40% when IMRT is used. While there is no data at this time comparing erectile function recovery with 3D-CRT and IMRT, I believe IT IS LIKELY THAT WE WILL SEE IN THE FUTURE THAT IMRT RESULTS IN LOWER ERECTILE DYSFUNCTION RATES THAN 3D-CRT.”

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