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

Kristen123
Posts: 6
Joined: Jun 2012

Hi. I feel the need to warn people about IMRT radiation treatment. My husband had this done with Calypso technology. He had 45 doses of radiation. He is also Stage 1 so his treatments were not agressive. About halfway through, he started experiencing a lot of pain when he had to go the bathroom. It burns to pee and hurts really bad to have a bowel movement because your insides becomes raw from the radiation. He finished his last treatment 2 months ago. The first month after treatment was a 9 or 10 on most days for his pain levels when he had to use the bathroom and he had cramping during the day. This morning (2 months later), I heard him screaming and then crying on the bathroom floor. My husband is only 60 and he is strong man. I've never seen him cry like this and it is heart-breaking. The doctors totally minimized the pain factor when they originally talked us into doing IMRT (which is more expensive) instead of Brachytherapy. We now wish we went with Brachy. If you have not chosen your treatment yet, please consider this carefully. I'm also scared to think how much longer this will be until his pain goes away and he can resume a normal life. The doctors are telling us that 3 months to recover is not unreasonable. I guess we have another month to go. If we knew upfront, we would have NEVER chosen IMRT. The good news is that it has a high success rate but so does Brachy.

Peace be with all of you!

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Kristen,

Sorry that your husband is having such a rough time with the effects of his treatment. The overwhelming majority of men undergo IMRT or other forms of radiation to treat prostate cancer without any immediate side effects at all. In fact, I've never heard of a case as extreme as what your husband is experiencing. I am sure your medical team didn't emphasize this too much because it just never happens but of course in your case when it DID happen I understand why you are so upset. But most men will not be screaming and crying afterward. And if you go back and look at all the literature they gave you to read and the disclosures he signed before treatment, I'm pretty sure there is something in there that says what might happen in rare circumstances.

I'm wondering if your husband had any urinary issues before treatment such as reduced stream, painful urination, frequent urination, getting up several times in the night to visit the toilet, and so forth? Radiation alone will usually not fix these issues and, for example, if your husband was suffering from the effects of a very large prostate radiation can exacerbate the problems because of swelling immediately after treatment.

Radiation does cause some inflammation which can take a few weeks to subside but two months seems too long. Since the urethra passes through the center of the prostate, when the entire gland is radiated (as occurs with IMRT) the urethra is going to absorb some of the radiation and become inflamed. Usually the cells making up the urethra tube are tougher and more resilient than the prostate cells that surround it and they endure the radiation process with little or no effect. I have no idea whether the radiation plan in your husband's case was poorly planned or he has an unusually sensitive urethra or other condition around the bladder lining that connects to the urethra which could be contributing to this problem.

Advil, or generic ibuprofen acts to reduce swelling of inflamed tissue and if your husband is not doing it already, these might help alleviate these symptoms.

Since your husband's treatment occurred over two months ago and the pain is still at this very high level you ought to ask about other causes related to the treatment which may have occurred and can be addressed because what you described is not normal. Perhaps there was scarring that is blocking urine flow from the bladder and causing the pain. A stricture can be addressed with surgery via the urethral tube to open the passage so that urine flows more easily.

It would also be helpful to know more details about your husband's initial diagnosis such as Gleason score, PSA levels, size of the prostate, and biopsy results.

I do hope your husband sees relief in the very near future.

Best,

K

Kristen123
Posts: 6
Joined: Jun 2012

Kongo- thank you for your comments. He no longer has burning with urination. That was a temporary side effect that went away. The side effect that has not going away yet is the intense burning when we has to have a bowel movement. He tells me that insides are still raw and he finished treatments 2 months ago. I'm begining to wonder if there was excessive tissue damage from the radiation. We are going to investigate this. Thank you again for taking time to email me. Oh, and since you asked. He was Gleason 6 with PSA of 8. He was just tested and his PSA is 3 and expected to keep dropping. The docs believe they were sucessful in getting rid of the cancer. Now, we have to get rid of this horrible side effect.

Jonkny's picture
Jonkny
Posts: 8
Joined: Apr 2012

I am 64, Gleason 6, and finished IMRT on 7/18/12.

I am so sorry your husband has had such rough side effects.

I could be wrong, but from reading the discussion boards I believe Calypso is used with older linear accelerators.

My radiologists used a newer Varian accelerator. Perhaps this is the difference in my results along with being in a clinical trial for a gel spacer placed between the rectum and prostate to increase accuracy of aiming the radiation.

As of today, my only side effect has been light-headedness that lasts about an hour and goes away. I have read that you may experience side effects coming on up to 6 months after completing treatments and it takes up to one year for them to go away.

Apparently, like many other things, treatments appear to be an art not a science. Side effects vary from person to person. Also, it can be the result of good tissue that has been irradiated in error.

Talk to your husband's doctors. My urologist and radiation oncologist both told me before I started that there are treatments that can minimize side effects (i.e., Flomax; hemorrhoid cream). I've been using Flomax for about 4 years to help me with urinary problems. I added using hemorrhoid cream to mitigate rectal problems but anything I've had has been annecdotal.

Also, I've read that there can be radiation burns between the scrotum and anus. Perhaps lotion can help your husband if this is another side effect.

Other than that, I recall taking pyridine for urination pain from infections. It helped me but turned my urine pink.

Lastly, keep the faith. We can only put one foot in front of the other and pray that side effects go away quickly.

Everyone keep your eyes on the prize! My wife hates the uncertainty now that I've finished treatments. I told her there's no certainty in life.

You need to do the best you can every day. My prayers are with you.

God Bless.

mrspjd
Posts: 694
Joined: Apr 2010

@ Jon
Well said. The only two certainties in life that I’m pretty sure about are Death and Taxes.

@ Kristen
Your husband may have suffered collateral tissue damage from RT or he may have some other medical issue causing his symptoms. Severe injury from IMRT is a rare occurrence especially with modern up to date RT technology, well trained RT equipment technicians and dosing plans designed by an experienced dosimetrist. But, as your post indicates, mistakes can and do happen for a number of different reasons, including human and/or equipment error.

If collateral tissue damage is confirmed as the source of the symptoms, you may wish to ask your RO and PCa onc about Hyperbaric Oxygen Therapy (HBOT). According to the American Cancer Society, there is “some evidence suggesting Hyperbaric Oxygen Therapy may be helpful as an extra tx for soft tissue injury caused by radiation.” You may wish to research “Hyperbaric Oxygen Therapy” to learn more and to determine if it might be an appropriate therapy to mitigate your husband’s symptoms now or in the future.

Hope things improve soon. Best of luck.

Kristen123
Posts: 6
Joined: Jun 2012

Mrs PJD - thank you for the advice. We also have been starting to wonder if the tissue was damaged during treatment. I will look into this. The doctors are still trying to tell us that some people take longer to recover but his pain levels are still very high. Everytime he has a bowel movement, the pain is excrutiating and his stool is soft. This has to get fixed. No one should have to scream in pain 2 months after treatments have ended.

ralph.townsend1's picture
ralph.townsend1
Posts: 359
Joined: Feb 2012

I had the protron treatment, with side effect up to a years. It takes time to heal and heart is out to your husband and you to have to see him go thru this. The morning away seem to be the worst for me! I found comfort in take cool bath, it was probably only in my mine, but seem to help

God bless!!

Kristen123
Posts: 6
Joined: Jun 2012

Ralph -
Hi. Thank you for sharing that you also had a lot of pain from your proton treatment. It's been almost 3 months since my husband had his last treatment and he's still screaming in pain when he has a bowel movement. Some times the pain and cramping is so bad that it brings him to tears. Today, he is going to meet with another doctor to see if there was any tissue damage that occurred from the radiation. He's also tried every medicine on the market and nothing seems to work.

What did you do to finally resolve your issue? He seems almost as bad today as he did 3 months ago. I'm not seeing much improvement. If you want to email me offline, my email address is kristenkap@yahoo.com. I know this is a very personal issue. Thank you!

mrspjd
Posts: 694
Joined: Apr 2010

Kristen,

I hope the suggestions lead to answers & your husband makes a full and complete recovery.  

You indicate that he had 45 RT sessions/fractions.  You may want to verify that the total Gy was 81 at 1.8 Gy per fraction.  According to several published studies, 81 Gy IMRT dosing "results in significant improvement in freedom from biochemical failure and disease-free survival."  I wonder what type of medical center (i.e. small clinic or large institution) your husband was treated at using Calypso & IMRT, although it may or may not have made any difference in outcome, all things being equal.   Like you, Kongo also contacted me via email.  If you should have any questions, PLMK. My husband had two forms of RT (HDRB & IG/IMRT) with ADT3 as primary txs for T3 stage. Very minor side effects (urgency, fatigue) resolved a few weeks after tx was completed and he has not experienced any latent tx side effects.

It's an unsettling & helpless feeling when someone you love is suffering and you want to take away their pain to make them feel better, but can't.  Take a deep breath--you deserve credit for all that you're doing to find some answers and help him. All the best to you both in hopes that the pain and symptoms resolve soon and he is cancer free.

BRONX52
Posts: 156
Joined: Apr 2010

Hi Kristen,
I am very sorry to hear of your husbands painful side effects following IMRT. From all that I've read and heard from different doctors, these type of side effects are possible but are definitely rare. Most side effects can be treated and I certainly hope your husband finds one that alleviates his pain !! FYI- I had 38 IMRT sessions following RP back in 2010 and didn't experience any significant side effects other than some fatigue during my last 3 weeks of treatments, which quickly subsided once the treatments were completed. Wishing your husband the best, and hoping his pain will soon be a thing of the past. Dan

ericgoodman
Posts: 2
Joined: Aug 2012

I'm sorry to hear about this, but glad you posted it. I am faced with having to do radiation soon. I had my prostate out and they did find cancer just outside of the prostate. They did remove it but are reccomending radiation as soon as I heal. I'm not familiar with Brachy, can you tell me about it? Thank you, Eric Goodman

crhoads
Posts: 7
Joined: Dec 2010

Kristen, where in Ralph Townsend post did he exactly say he had a lot of pain?

Secondly, starting a thread with this type of a subject is flat out irresponsible. Men die from prostate surgery every year. The chance is small, but they do and you don't see their spouses starting threads titled, "Don't get prostate surgery you will die!"

I understand you are frustrated and mad about what your husband is going through. If it is that bad go back to your doctors and see what they can do to help. If they don't give you an answer you like then find another doctor.

But making statements like this serves no purpose to help anyone.

starr15
Posts: 31
Joined: Oct 2011

Sorry to hear of this uncommon apparent side effect. Hopefully, this will resolve soon and your husband will ultimately have a good outcome. We should all be aware of the risks and benefits of prostate cancer treatment.

fightn9er
Posts: 13
Joined: Aug 2012

I agree that this is not a whinning post site. HOWEVER!! Life experiences,Trearment oportunities as well as side effects help SOME of us make life saving and permenant decisions. I was Dx 4 days ago and I have been reading testimonials for 3 days without much sleep. Information and knowledge is the only thing that settles my nausea. I am a Gleason 9 psa 26 and my treatment options are radical and boarderline insane. So what it all comes down to is "quality of life" vs "time" for me. This board has been more informative, understanding, and knowledgable that most of the Physicans I have seen of late.

Kristen do not be discourged. I need this information.

Mike

hopeful and opt...
Posts: 1853
Joined: Apr 2009

eric

basically brachy is a treatment that uses permanent or temporary seeds that are placed in the prostate to treat prostate cancer....since your prostate has been surgically removed this is not applicable to you.

wish you well

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Eric,

I'm sorry that you are facing more treatment after your recent surgery. As Hopeful & Optimistic points out, brachytherapy is not appropriate for someone who has had his prostate removed. There are other forms of external beam radiation that are used in these instances and you should research adjuvant radiation. The link below can help you get started. Good luck.

http://prostatecancerinfolink.net/2010/10/31/evaluating-the-need-for-immediate-adjuvant-radiation-therapy-after-surgery/

krcrfs
Posts: 1
Joined: Feb 2013

Don't feel that you are alone.  I too am 60 years old, I go to the gym 5 days a week, which includes a daily 4 mile run.  I'm also a retired engineer who just had to drop out of my 42 session IMRT because of severe radiation sickness.  I lasted exactly 5 weeks (or 25 sessions).  I can no longer run or walk normally.  I have a severe limp and can not climb or decend stairs without assistance.  What was my Ocnologists answer to this?  It shouldn't happen, but it did.  So now I'm in personal rehab trying to get my hips and pelvis to work again.

I wouldn't recommend any form of radiation to anyone, if there is a surgical alternative.  IMRT is based on technology first developed in the 1930's and the first medical implementations showed up in the 1950's.  It's essentially 50 years out-of-date, and now we get accelerated Proton radiation, generated by a 3 story tall LINAC???

I hope you and your husband are doing better now.  I hope to have some level of movement back by summer.  Mean while I still have prostate cancer....

tonybuxton
Posts: 80
Joined: May 2012

I am sorry for your husbands pain. I am nearly 82 and had IMRT with absolutely no side effects. I did choose the hospital with the best technology (Novalis shaped beam)and the best oncologists even though  it cost a lot more. But unlike others I suffered terribly when i got a hormone injection. In addition it destroyed all my muscles and some of the side effects are irreversable.

I feel like telling others not to have hormone treatment. But I am prepared to concede that for most others the effects of hormone therapy are not as bad. People react differently to different treatments.

A friend of mine had radiation treatment at a government hospital because he could not afford a private one. The hospital did not have the latest equipment and he did suffer from bad side effects.

Tony

califvader's picture
califvader
Posts: 108
Joined: Aug 2010

 

i had imrt treatment in April 2011.  during the treatment i formed a couple of red spots just above my penis.  i used aquaphor on them and it cleared right up.  now, the only thing that bothers me occasionally is my rectum is a little itchy.  other than that everything was smooth sailing. 

Samsungtech1
Posts: 351
Joined: Jan 2011

Unfortunately each individual reacts differently to treatment.  Choices have to be made, and an understanding of what might happen is in the back of your mind because you want to live.

davebrooks007
Posts: 1
Joined: Jun 2017

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.

Swingshiftworker
Posts: 971
Joined: Mar 2010

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
Posts: 24
Joined: May 2017

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 do***ented 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's picture
bassoneman
Posts: 26
Joined: Apr 2017

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

 

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