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Experience with Radiation Therapy side effects?

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Posted 2/24/2011 10:42 AM (GMT 0)
I am now on day 6 of 39 days of Radiation Therapy.  I am presently experiencing a problem with bladder control (I was about 97% continent before starting), which is not real bad yet. At least 2 to 3 trips to the bathroom during the night, excessive gas, the feeling that I have to move my bowels, and mucus in my stool.  I may be wrong, but after reading other posts a lot of folks have very little problem with RT, and most of those problems do not start until around 4 to 5 weeks. At first I attributed it to starting the therapy and the change in my schedule, etc.  Now it seems more like the radiation itself. Anyone have any thoughts on this?

I guess I am glad I listened to onc. surgeon when he told me no HT with RT.  On January 20, 2011, my PSA was undetectable. However, radiation onc. recommended HT with RT.  Onc. surgeon said no HT at this time. Then another med. onc. said no HT as we have no indication it is necessary.  The onc. surgeon told me he really had nothing to back up his recommendation I have RT, and was going with his gut feeling. He is one of the top in the U.S.    My worry is the damage it may be doing.

 

Posted 2/24/2011 12:24 PM (GMT 0)
Seems questionable to me, you might not want to hear this it is possible to have machines with calibration or similar concepts of impreciseness or a maintenance issue (might be rare but not exempt).  Do you know precisely what type of radiation machinery and methods are being used?

I don't think you should be experiencing all that, maybe a call to another non-related (no buddy network needed) radiologist for his take on what is happening is worth your efforts. Myself did primary radiations and most powerful protocol version in existence (2-machines/neutron and then photon rays in different sessions). Didn't experience any real issues, later had fatigue that went away.

I hope in your experience it goes better from here.

Post Edited (zufus) : 2/24/2011 7:18:07 AM (GMT-7)

Posted 2/24/2011 1:27 PM (GMT 0)
Bill:

As one who might be starting that part of the journey very soon, it is disturbing to read this.

Weren't you going to be using the Varian Trilogy RapidArc machine?

That is supposed to have even fewer SE and I was definitely told that the SEs don't show up for the first 3-4 weeks.

Mel

Posted 2/24/2011 2:28 PM (GMT 0)
I had all that, a little later, but not as late as 5 weeks.

Two things contributed for me that might be common - if you were not ready for the water torture (I started trying to drink the liter of water every morning when I went for the pre-checks  just to get accustomed), and second if you have any history of intestinal issues. I have a lifetime of spastic colon and 'roids, which accelerated the arrival of bowel issues. I was sent to the colo-rectal guy just before I started IGRT to get 'cleared'.

My RT therapists also insisted that I not change diet or sleep schedule so that I didn't add any new stress.

Urinary frequency picked up real quick.

I would speculate that the G 9 and SV+ are the reason they pushed RT. I did adjuvant as well.

Posted 2/24/2011 2:53 PM (GMT 0)
Mr. Bill,

I had similar issues.

- My bladder control oddly seemed to get better at first and then it went back and forth. And when I say bladder control, I mean pads, etc... Only until a month or so after radiation was I padfree. When I was getting radiation, I only wished that bladder control meant getting up at night a few times.

- Loose stools all the time and I remember mucus...

- I continued to exercise throughout, but I recall getting tired quicker.

Overall it wasn't a horrible experience, but I remember similar experiences.

Hang in there...
Jerry L.
Posted 2/24/2011 4:11 PM (GMT 0)
Met with a Dr. at the treatment center today. She said all my symptoms are normal, even though they are early. I can't wait to see what happens at 4 weeks.  I should be a basket case by then...

Mel,

I have been treated on Varian Trilogy without rapidarc feature. It was explained that the only difference is time on the table, and some sunburn issues.

 

Posted 2/24/2011 4:18 PM (GMT 0)
Mr Bill

I am the one that had lots of problems with Salvage Radiation. I began getting burned on the 4th of 39 treatments, and it only got worse over time. To make a long story short, in the end, the radiation burned my bladder and bladder neck so bad, that I had to have bladder bypass surgery and have a full time Urostomy in place. Also, my radiation ended in November of 2009, and I still have strong daily bouts of radiation related fatigue.

If you feel you are having issues, make sure your doctor knows this strongly. If you have any doubts as you continue, you make them listen to you, in case they need to change your radiation delivery or anything else.

Hopefully you will get through the rest of it fine.

David
Posted 2/24/2011 4:58 PM (GMT 0)
mr bill -- your early symptoms could be from stress, which you seem to have plenty of.  i was getting up 7-8 times a night about halfway through my 28 treatments but i also had seeds implanted six or seven weeks before IGRT and i was on lupron.  a couple of the guys i talked to had catheters because they couldn't handle the frequency and lack of sleep but most of the guys did fine.  try to relax a bit.  it'll be over before you know it.

ed

 

Posted 2/24/2011 5:51 PM (GMT 0)
Bill,

David's story is something to keep in mind anytime you start to dismiss something as not important. Mention everything, no matter how trival, in your weekly Oncologist appointment. This is not the time to "man up". I kept a written list/diary to use.

David was my "mentor" during IGRT, as you can see if you looked at my thread. I will say that most of my problems were summarily dismissed by the Oncologist as "stress" or related to my previous colo-rectal issues, but I was also checking in with my GP every couple of weeks (there was no reason not to once my deductible and co-pay were clearly going to be blown out).

Because he has a lot of "average folks" who have had the normal batch of cancers and radiation, his view of the impact of radiation is completely different. He suggested a free booklet from the American Cancer Society about radiation in general (I think you can download it from their site), and went over each of my "complaints" at each appointment. He was very convinced, and in a sense reassuring, that the symptoms were real (and painfully normal)side-effects of RT, and we talked about what to do. Now mind you that I did make sure both docs were aware of any meds, and I had the Rad oncologist prescribe everything to keep some sanity in it all. Now that has all passed back to my GP, and he is following the progress.

I think the stress, if there was any (except the water torture), died off quickly, as I developed a good routine, except driving through a construction zone with "enhanced enforcement" every day. Because the techs were all very pleasant, and the folks before and after me were sociable, it became a good part of the day. Beat spending the morning in the office.

Posted 2/24/2011 6:08 PM (GMT 0)
I had IMRT that included the prostate, a good margin around the gland, and the lymph nodes.   After about 10 sessions I experienced more urinary and bowel frequency and urgency.  I couldn't go more than about 1&1/2 hours without urinating and when I felt the urge I had to run...no waiting.   At night I would not drink anything after 7 pm and still needed to get up twice.   As for the bowel, I went from once a day to usually three times and with more urgency.   I also got a little looser and gassy, but never wet.

My rad onc told me all this would happen and he was spot on.   Within two weeks of stopping the radiation all returned to normal.   I did not suffer any fatique nor did I burn.   My linac stopped 9 times in the rotation and my rad-onc explained that this prevented the burn.   He said that men that had the five stops usually had some burn as more time was spent on each stop.   My wife was also undergoing radiation for breast cancer and her machine had two focal points and she burned considerably and then cleared up in about three weeks.

I did not have surgery, but had two High Dose Radiation procedures midway through the IMRT.   I was also started on Eligard and Jalyn one month before the radiation began.   The docs ordered a colonoscopy before the radiation so they knew if there were any issues.

In all I think my side effects were what I expected and weren't an inconvenience.   I was extra careful to have a full bladder and empty bowel before I got on the table.   That was continuously stressed by my doc and the therapists.   One even asked me the question each day to make sure I was following protocol.   There was a large water cooler in the waiting room for hydration.   I had a 15 minute drive to the center and usually a 10-20 minute wait at the center.   My routine was to use the restroom as I was leaving my office and then drink 12 ounces of water on the drive.   By the time I was off the table I was ready to go!

I met with the rad-onc every Thursday for a checkup and review.   The therapists ran a new ct scan at least once a week and the physicist reviewed the plan with me at least once a week.   I felt they were all on top of things constantly.

Posted 2/25/2011 1:56 AM (GMT 0)
David can you tell me what you experienced in the way of sensation/symptoms of the radiation burns?

F8, yes I am sort of stressed out. Wife had back surgery  year before my RP, her surgery was a long recovery. Usually by now we have been to her home state of Mississippi several times. This yuck weather becomes intolerable.
However, my stress level is a little better than when I started. The treatment I am receiving sounds pretty much like JNF’s.  Keeping a diary, with questions for the weekly meeting, is certainly a big help. Especially if your short term memory is shot to h__l.

 Gotta stop whining. Thanks for sharing so much of your experiences, it really is a major help.
 

Posted 2/26/2011 1:47 AM (GMT 0)
I42:

I also have a similar GI history to yours.

The radiation guy was thinking of sending me to a GI guy to get the hemmie issues checked out. However, when I indicated that the hemmies are there but rarely bother me (I get a bleed about once every 6-7 years and have general hemmie problems such as swelling/pain/irritation less than once a year) he decided not to send me.

When you got checked out, what did they do? Say "yes it's there" and that's it?

Mel

Posted 2/26/2011 4:25 AM (GMT 0)
Mr. Bill,

On my 4th of 39 sessions, when the machine hit the 6th of 7 positions, I felt a deep seering burning sensation. Not at the skin or on the outside, but deep inside, about where my bladder would be located. It hurt getting off the table that day, but I managed. The remnant of the pain lasted a good hour afterward.

I told the operators, who dismissed as not being possible, and told me to report it to the Radiation Oncologist when I met her the following Monday.

The Friday treatment, #5, the pain began again as the machine hit that same positon. It hurt worse the 2nd time, and I had a harder time getting back to a seated position on the table before I got off of it. It hurt as I walked back to my car, again, a very deep, seering burning pain, almost like a very long and deep paper cut, that kind of sensation.

When I told the doctor the following Monday, she too said it really wasn't possible to feel anything and to keep her posted.

Long story short, the doctor would not stop the treatments, or investigate the source of the pain, and
as each session went by, week by week, the pains were more intense, and lasted longer. From about the 3rd week on, it would hurt so bad when the zapping ended, it took both operators sometimes to have me seated upright when it was over, and to help me off the table. It was agony somedays to walk back to the parking garage, and some times, the pain would stay with me for hours after.

At first the doctor kept saying no way possible, then later, after my uro called her complaining on my behalf, she finally acknowldge that perhaps some "scattering" of radiation was taking place, despite being done as IMRT. My uro was not convinced.

I should add, that no one should avoid radiation if needed to attempt to stop your cancer if needed. Mine is a bad example of how radiation can be administered wrong. For starters, I never was asked or required to drink water ahead of time, like the majority of men are. I asked the rad. dr. about that before we started, and her words, "I got that covered."

Then end result, I suffered daily severe pain in my bladder and bladder neck for nearly a year after the radiation ended, and ultimately, required the ilieal conduit surgery I had in September, in order to by pass my bladder for good, and urinate through a stoma. It is not reversible.

David in SC
Posted 2/26/2011 10:51 AM (GMT 0)
David,

Thanks for sharing your experience. And folks wonder why some of us are very skeptical when it comes to the medical community? I have been told by the therapist that because this is radiation of the entire pelvic area that I need not have a full bladder. However, when, after treatment 25, they begin a more focused, or "cone shaped" radiation, he told me  I will need a full bladder.  I was told by others that one hour before treatment I should drink this humungous bottle of water. Somewhat conflicting advise. Kind of like asking for directions (which us guys never do) and being told to turn right or left, doesn't matter. Thus, each morning, I have been going to my early treatments with a full bladder, and what I consider an empty bowel.  I tell the therapist each morning "my bladder is full" and usually get no comment.  Maybe he is not a morning person?

Again, thank you for the information.  I am sure your experience will help others who are experiencing or anticipating RT.

Posted 2/26/2011 3:36 PM (GMT 0)
Bill,

The important thing (according to my therapists) is that your bladder be in the same position and form for each of the specific treatments.
So because I had a full bladder when the planning CT scans were run, I was to have a full bladder during treatment. They are trying to maintain a stable, constant target.

I did not have a two-part treatment, and was not told to do anything differently.

I would talk to the Radiation Oncologist and get a confirmation of what they want. The therapist is just following the plan, and should know, but the RO is the one responsible.

And yes, that 500ml of water is quite a balance between time and immediate access to the toilet afterwards.

Posted 2/26/2011 3:46 PM (GMT 0)

Bill

I had the two part treatment, I think 25 and 11,  but for all I was told that  I had to have a full bladder to maintain consistency in placement of the organs prior to treatment and during.  Every day I was asked "Is your bladder full?" Each day I would drink two bottles of water at least a half hour to an hour in advance to assure that the bladder was full.

Jack

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