Radiation Late-Term Effects under-reported

Great post. Thanks Casey...
I will run this by my RO buddy as well. I am not surprised. To think that "cooking the reported outcomes" is limited only to urologists is about as ignorant as you can get in my opinion. This isn't urologist nature it's human nature and some RO's do it too....

I paid 5.99 to view this article but it was worth it. I don't agree with the article in principle because again it is based on the thought that 10 year retrospective studies define the number of lives that are saved by screening. To think that we find under reporting of radiation outcomes is quite a different statistic when you add years also applies to saying that after ten years we have enough data to draw a conclusion about screening.

I disagree and time will tell...

Tony

Just from some of the problems I have already had, I suspect this article is on target.

Additionally, my RO pointed out that should any problems occur down the road, I should not see him but go to the right specialist (eg: a GI expert). Frankly, it makes sense. The RO knows very little on how to deal with such effects.

But, deep down, the real reason for this suggestion is that it allow the RO to report that he almost never has any SE from his patients.

My RO was extremely personable BEFORE I agreed to the SRT. When I ran into some problems, he was EXCEEDINGLY defensive. Even when my PSA went right back up after the SRT was concluded, I told him that the SRT just didn't work and he got very defensive again, saying "the SRT did work, but your cancer was not in the pelvic bed."

Cripes. By not working, I meant the same thing, but he acted like I was accusing him of incompetence or something. My experience with my local RO was overall less than satisfactory.

Mel

This is one of the many reasons why, even with a PSA reading of 0.38 six and a half years after surgery, I am reluctant to pull the trigger on SRT. I will try Avodart first to positively rule out benign tissue growth.

TB

I pulled the trigger, now I pull on the roll. I buy so much toilet paper I have to look for coupons. Those wet things I thought were for wimps? Great stuff.

My fatigue has never gotten better.

My incontinence is stable, at a level I don't see as acceptible.

My bowels, well, see above.

My RO says none are RT related.

My GP says all are RT caused.

I work at home now. At least that way, I know if the throne is vacant when the five-second clock starts.

142 know how you feel, fortunately my probs are mostly in the morning, some days can't leave the house until 10am, like I said is not every day, but never know when. The rest of the day is ok most of the time, as for the toilet paper, I use heaps!

Ah well, I'm still alive and kicking..lol

Mal.

Thanks, John. But my initial reaction to this survey is that--as is so often the case--it is not yet assessing the "late-term" effects which are uniquely attributable to radiation therapies. Five years is merely standing at the threshold of what one would consider "late-term.". I think it is well established and accepted that in the shorter term RP patients will more frequently experience side effects, and this is another survey which does not address the late-term issues of radiation.

I appreciate the comparisons to RP patients but this isn't a race. Clearly the side effects are going to be clearly understood in time. But we totally lack data beyond 10-12 years on the latest radiation technologies (sometimes even less like the SPIRIT trial which thus far has proven to be a misleading release of trial results).

It was once asked here at this site why there are no radiation patients with problems. We just needed time. There's no trouble identifying them here or in our live support group. I'm in the group of radiation treated patients and I am not happy about that...

Still hopeful, though. Doing well myself...

Tony

of all the guys i know who have had prostate procedures two are fully incontinent.  one from surgery the other from turp x2.  the latter also had IGRT between the two turp procedures and he has a slew of other serious medical problems.  he didn't become incontinent until after the second turp.

i do know quite a few other people who have radiation for various other cancers -- breast , throat, lymph -- but i can't think of any with serious problems from radiation.

maybe SEs are unreported because these guys have mostly beat cancer and they've gladly moved on to other doctors.

i'm not sure what i get from this question besides unwanted fear.

ed

I was told about short term and long term side effects before my SRT.
Amd a UK Cancer charity has a good explanation here about what to expect:
cancerhelp.cancerresearchuk.org/type/prostate-cancer/treatment/radiotherapy/side-effects-of-prostate-cancer-radiotherapy

My docs have not washed their hands of me. Since starting SRT I see uro and RT doc alternately.
It was only when I complained of having cold legs/feet that they said they didnl;t think that was due to SRT.
I reckon my two teams are fully aware of what is likely to go wrong or they wouldn't be including questions in their surveys about ED and bladder and bowel incontinence.
Also the whole way RT is delivered has been changing over time to reduce impact of rays on healthy tissue (ie they have evidence that RT is damaging healthy tissue and are trying to do something about it) I'v eread something about a procedure that inflates a balloon inside you during RT for PCa to move the bowel away from the target area as "damage to the bwoel and anus is a known problem"
RT used to be delivered in one ray, then from three positions so healthy tissue only received a third of the dose, then five positions etc. I had mine from 7 positions, the latest machines deliver a little dose all round 360 degrees, whiuch reaelly minimises how much goes through healty tissue. As the means of delivery has imporved it may thus be hard to compare patients's SE accurately.

And people's bodies clearly react very differently to what is done to them.
My brother-in-law only had RT and I was surprised he had ED and strange bowels straight away, on the other hand he was never tired and had no bladder trouble.

My bowels are definitely weird. I almost feel like I need to go the whole time. Sometimes it feels like having diarhoea and constipation at the same time. Often going 4 times a day, so also using plenty of paper, especially as one of the biggest problems I have is that the last bit of matter doesn't seem to come out properly.
Going for a walk often seems to set my bowels off too, which makes it even harder to take enough exercise now. And while peeing behind a tree is odften fine, I'm not yet ready to impersonate a bear.

Farts can absolutely not be trusted, I'm getting fed up going to bathroom just to fart.

My bladder leakage has been getting worse of late. Wet patches on trousers/pants again for the first time since I tried going pad free after surgery.

And while pads to deal with leaking pee are one thing, I am not keen to deal with faecal leakage (and glad to have learnt that term - now I just have to work out what it's called in Dutch! I think it's "faecale incontinetie" or "ontlastingverlies". "Broekpoepen" is a bit vulgar.)

142, interested to hear you are still tired. I was beginning to think I was imagining I was still tired due to SRT given I finished my SRT in June 2010. (The RT doc said I would feel tired for at least a year, which was in itself a lot longer than I had read about!)

I have been going to the bathroom to pee or S**t so oftgen I was talking to my wife the other day about how much water I am using to flush even though we have dual flush cisterns that don't always have to use a lot of water.

Also I reckon that if you add it all up I must now be spending over an hour a day in the bathroom peeing, sh**ting and farting and wiping/washing myself.

So. Noty happy. I defintely feel I have SEs to deal with and plenty to tell docs about at next appointment.

Alf

If one has not read the article, a reader of this thread might erroneously conclude that the renowned expert who wrote it provided some detail re underreported radiation SE's.  In fact,the 5 page article was primarily aimed (as Casey originally said) at the debate over screening...which we have discussed extensively on this forum.  In fact, the comment about radiation SE"S was brief and contained no supporting data or reference to supporting data.  A brief Google search allows a reader to find the article "for free" and here is the context of the radiation comments (italics added by me):

Each type of treatment comes with its own side effects. Surgery (open radical prostatectomy) often results in urinary leakage because the removal of the prostate requires the lower portion of the bladder to be disconnected from the urinary tube running through the penis. The surgeon later reconnects the bladder and urethra, but damage to the nearby muscle that controls urination may lead to incontinence. Meanwhile the nerves and blood vessels controlling erections may be severed during surgery, causing erectile dysfunction (impotence). Although advertisements typically extol lower complication rates with robot-assisted surgery, large independent studies that rigorously compare the two approaches have not been conducted.

In addition to impotence, radiation therapy of the prostate often ends up damaging the rectum and bladder because it is hard to avoid radiation scatter, which hits the front of the rectum and the base of the bladder. Moreover, rectal bleeding and fecal soiling are frequent but commonly underreported side effects of both radiation therapy (including radioactive seed implants) and surgical approaches. (As an aside, side effects of the medical therapies that are used for advanced cancer that requires treatment—hormonal treatments, immune therapies or chemotherapy—include loss of sexual drive, impotence, weight gain, bone thinning, hot flashes, and heart and liver abnormalities.) Thus, when a decision is made to offer treatment, the true risks must be carefully weighed against potential benefits.

So, in context, the author is actually assigning unrepported rectal problems to both radiation and surgery -- again without providing any supporting data.  Furthermore, the purpose of his discussion of SE's in general was to make the point that treatment is often worse than non-treatment.

Like JT, the studies I have seen indicate that most post-procedure radiation damage shows up within the first few years.  Assuming that is true, then studies comparing QOL between surgery and radiation that are done a few years post procedure are probably valid.  These studies often conclude a better QOL for original procedure radiation patients than original procedure surgery patients.

As always guys, the devil is in the details.  I have no doubt that RO's will cook the books at equal rates to surgeons cooking the books, but this article does nothing to add to the body of data comparing surgical or radiation QOL.

Tudpock (Jim)

John,
Where the rubber meets the lies the truth. I have guys in the live support group that were treated much longer than 5 years ago that had later effects that required intervention such as hypobaric chambers or procedures by gastroenterologists. They are definitely rare but they do occur much longer than 5 years out.

The side effects of all therapies are real and under reported. I'm pretty sure that if the USPSTF felt there were treatments that were performing as well as there sugar coating then they would not have issued their draft of the prostate cancer screening controversy.

Tony

G6,
The occurrences of radiation SE's are far less than surgical SE's. We have had a few guys posting here with residual SE's. I believe it to be possible that many of the SE's may also have to do with doctor's experience. In our UsTOO group two of the men were treated at the VA. One other guy was treated in Los Angeles at reputable radiation oncology center. While he has SE's his issues are more cancer related. He is now on the TAK700 trial.

I think in all that over a five year period there is nothing definitive about radiation oncology. Like myself, most patients will do well. But my RO feels that I will still need to come back and see him for many years just to continue monitoring me.

I guess that's still a valid question to you and the many here treated by radiation. Are you continuing to see your RO years down the road? I can tell you why that is...

Tony