IMRT Radiation Treatment Warning. Painful side affects. You will be screaming and crying.

Swingshiftworker

davebrooks007 said:

Proactive Pain Management - Calypso & IMRT

I am in the 5th week of my 7 week round of IMRT with Calypso Beacons.  In week 2, I started developing slight pain symptoms in both my penis and my rectum.  I questioned my doctor and he told me that these are common side affects.  Since I had my prostate removed in 2011, and knowing that it was the prostate bed that was being radiated; I asked my doctor if the prostate bed would look essentially like the aftermath of a war zone after week 7.  He said there will be significant inflammation, which I could equate to the "war zone," but the inflammation will begin to heal once the treatments have stopped.  I asked if there were something that could be done to avoid these sensitive areas.  He told me that unfortunately these areas are all in close proximity to the prostate bed, which is why they use the Calypso beacons for targeting.

That evening, I did some research and Googled "IMRT and Inflammation" to try to see if there was something I could do to be more proactive in mitigating these painful side affects.  I discovered this thread and became distraught when I read Kristen123's husband's experience above.  As I was only in week 2, I was concerned that the pain/damage could get a whole lot worse.  The next day, I asked my doctor if it would be ok if I taped my penis  down so as to minimize exposure to the IMRT.  He thought about it and said as long as it doesn't interfere with the technicians getting me aligned, then he saw no harm.  I told him that I had it taped today and there was no problem.  I have done so ever since and happy to report that it has lessened the side effect.  Although at first, I had additional pain from having the medical tape stick to aggressively until I discovered that I could turn a 2" piece of tape upside down and stick it to a 6" long piece that would create a sort of a non-stick bridge.  Then it was a simple matter of shaving where the longer piece needed to stick.  Each week I create a full set of these 6" strips and place them on a plastic bag so they are immediately ready for my daily treatments.

Regarding my rectum, the doctor gave me some Hydrogel and I have be using it daily on my exposed skin and around my rectal area and this has had a cooling effect and so far has made the pain exceedingly more manageable.

Finally, I have had bouts of stomach pains that I minimized by switching to a low fiber non-residual diet that my doctor recommended.  This was challenging at first since my diet was exactly opposite of that, but after suffering with the pain, I decided to heed my doctor's advice and switched my diet.  I still have days where my stomach is upset, but the pain is a lot more manageable.

Start your own thread . . .

Dave:

Welcome to the forum but you are tacking onto the end of a VERY OLD thread.  While it is relevant, it would be better if you start your own.

 

 

GeorgeG

Select good doctors and know the risks and benefits

For anyone who has suffered from their treatments my heart goes out to you and I hope that your doctors can get you better and if not that you are able to find doctors that can give relief.

Every treatment that we consider has the potential for side effects - surgery, radiation of all forms, hormone therapy, brachy, cryo, TURP ... They all invade the body and they all carry risks. These risks are well documented for all forms of treatment and they are thankfully, generally low but they are not zero. That it why we should never go into these things lightly. We need to confirm that our disease is serious enough to require intervention, that the treatment considered has a high enough probability of improving our outcome and then we need to pick talented doctors at good facilities so that we have a shot at an improvement in outcome at these low side effect rates. 

For anyone reading this thread that is facing the threat of prostate cancer, find doctors that you feel comfortable with, do your research/as questions, make sure that treatment is appropriate for you and find the best treatment for your situation. Then get treatment at the best facility that you have access to and don't look back. If treatment is what is right for you please don't let the unfortunate stories of a few people scare you away from getting better. If you are one of the unlucky ones who are having problems, request additional support from your doctor and if that is not working, find a new doctor that can help. Remeber that at the end of the day, we are putting ourselves through this because it beats the alternative and we take some risks to get better. In this case the risks are justified because the stakes are high indeed.

Visualize getting better, be around loved oned that really care about you and live every day to its fullest knowing that even in our tough situation at least we are getting another day and so many will not be as fortunate.

bassoneman

I had pain also during radiation. .

I also had pain during radiation when having a bowel movement and urinating. It was horible

and yes it was making me wish I had never done it. in the last two weeks of treatment they finally prescribed flow max and this stuff that made me pee bright orange. That did wonders.. I finished may 3 now mostly side effects are gone.. thank god. I can feel your husbands pain.  I have been there.. About a week after therapy I got chomped by a tick. Now I am dealing with Lyme disease. Extreem pain in my hips and knees can hardly walk.. thank god I saw the tick i would have thought I was having bone issues from the PC