Secondary Cancer Risks post SRT

I bring this subject up, as it is going to be a major topic with my April meeting with my oncologist.  I have already sent him a lengthy letter on a number of topics concerning me.  So I throw this one out to the crowd here, all opinions are welcomed, and among others, would love a take from JohnT, Tony, Ralf, and others.

In my own research, I had read several good articles about the risk of developing secondary cancers just from having salvage radiation in particular.  The percentages weren't real high, but the risk was there.  I read a very disturbing, and new study, and I wished I had been clever enough to bookmark it, but I didn't.  Perhaps one of you have read it as well.

In this study, and it was written in the context of doctor to doctor, not doctor to patient, it talked about how one could develop a secondary cancer with as little as 1 gy of radiation hitting something unprotected.  Where it concerns me, is how I feel I am still deteriorating a piece at the time.  To summarize, I was hit with 72 gys of IMRT to a totally unprotected bladder.  We know the rest of the story, it physically burned me from treatments 4 through 39, and basically burned my bladder and bladder neck, bad enough to require the by-pass surgery which left me with the urostomy.

Since then, all this severe pain has developed, that is still getting worse over time, not better.  Oncologist still believes its mostly the result of severe nerve damage in the core area due to the faulty radiation.

However, what concerns me, is that with bladder cancer, its normally detected first by blood discharges, etc.  Or, they can scope you, and look with a camera and even take samples of suspicous areas.  For me, after the urostomy surgery, nothing can enter or exit my bladder.  So if there were bleeding, how would I know?  There is no way to scope me without surgery, as the bladder neck was sealed off after the urostomy surgery.  I still get numerous painful bladder spasms daily, even though my bladder is non-functional.  Not saying I have or will get bladder cancer, but how would I know?

Also, in the same area where the radiation did so much damage, is the rectal and colon areas.  Been developing for several months now, more and more serious crampin pains in those areas, and starting to have issues with rectal or fecal (?) urgency.  No, I don't have "roids", lol.  All my doctors have agreed, that it is too risky for me to have a colonoscopy because of the radiation damage.  So am I asking, how would I know if there was or wasn't a secondary cancer going on in those areas.

These worrisome thoughts could also extend to concerns about the lower ends of my kidneys and pancreas as well.

Not wanting anything new to worry about, but after reading that study, if 1 gy of unprotected radiation can directly cause a secondary cancer, just think of what 72 gys could do.  Not sitting around worrying sick about this, but feel its a legitimate concern to discuss, obviously first with my doctor, but also with my fellow sufferers.

David in SC

Hi David,
You just voiced one of my biggest fears. Although I can't really complain about my present situation, I'm always wondering about the long term outcome of my SRT. They burned my butt pretty good and I still have a bit of burning in that area periodically. Nothing even close to your unfortunate situation, but still............always wondering. We're just so fortunate to have this 'good' cancer
Wishing you all best.
Mag

I have to say that this was one of my main concerns about getting any radiation treatment in that part of the body. about 12 years ago I had a three colon polyps removed. They were all benign but I've been worried about from time to time. I had a conversation with my RO about it and he did admit that it could increase the chances of me getting colon cancer. I never really researched beyond that.

I'll admit that I just decided to let the dice roll and hope that I would be one of the ones that had one treatment and be done. I've got enough other minor health issues - gout, high BP, family history of stroke, cancer, etc that I've gotten to the point where I just don't know anymore.

What I've been rolling over in my mind is what happens if the IGBT treatment doesn't get all the cancer? The only thing I know for sure is the stuff I worried about 10 years are aren't the things I am worried about today. At one time I was convinced I was going to die of a massive heart attack at 49 - really, even told friends. That didn't happen and I would never have guessed that PC would bite my.

Sorry, must be rambling now. Interesting questions that seems to lead to more questions. Still interesting subject.
Andrew

Purgatory said...
Andrew,

Prior to my dreadful PC venture, my worse fear in life was living to be 100 years old, and getting shot by a jealous husband. I no longer think that is in the cards and don't worry about it. lol.

david

One of my father's goals in life was to live longer than his father. Grandpa died at 73. Dad made to 77. If I am to keep up the trend I have to live another 25 years and 9 months.

and it won't be a jealous husband for me - more likely my wife, she is scary when riled up. ;)

Hi, David

Sorry to hear of your continuing difficulties. Your courage and your openness about every aspect of your journey are an inspiration to me.

Some of your questions may have a relatively easy answer. Routine urinalysis always includes a check for red blood cells and hemoglobin, and often an early warning sign of bladder cancer is a bit of blood in the urine. The tests nowadays are quite sensitive and can pick up trace amounts of blood in the urine long before you would see anything visibly red. So if you had this done regularly you'd pick up any trace blood, or an increase in the baseline if there is some already due to the ostomy procedure. If something seems amiss it may be possible to do an MRI to get a closer look.

Similarly, for checking your colon health there is something called the fecal occult blood test; basically they take a small smear of stool and analyze it chemically for signs of blood. Both of these tests are cheap and painless.

There is also a procedure known as a virtual colonoscopy. Basically this is a trick of software that takes MRI data or something similar as an input, and then instead of reading it out as "slices" the way it's usually done, it renders it in a 3D model so the radiologist can do a virtual "fly through" of your colon. I have read that this is not as accurate and sensitive as the conventional colonoscopy but if you can't the usual kind, this could well be a lot better than nothing. en.wikipedia.org/wiki/Virtual_colonoscopy

I hope some of this might be helpful to address your concern.

pro - much of your advice was great and worth thinking about. however, with my urostomy in place, no urine passes through the bladder. the ureters were cut loose of the bladder and join in the ileal conduit which terminates into the stoma. so how would urine straight from my kidneys, bypassing the bladder, show any evidence of Bladder Cancer. Or else I misunderstood.

mel - same answer to you, nothing can enter or exit my bladder, my urine comes straight from the kidneys to the stoma

squirm - thanks

andrew - when i was in my 30's, use to joke about how i would live to be 65 and die, and my mother would outlast me in spite, lol. not so funny now. i am 59 and in rough shape, and my mother is 85 and kicking strong. hoping i wasn't prophetic.

no jealous husband for me, a certain redhead i have been married to for almost 38 years would take care of me on her own, lol

David/Squirm:

Yep, my error regarding the urine blood test.

I guess maybe they can't and you just have to hope your bladder stays benign?

I wonder if there are any blood tests/markers that might be helpful.

Mel

 

David - sorry, I didn't realize that your bladder was entirely bypassed, I thought the bypass was downstream of the bladder. I guess the only thing that could be done that's not hugely invasive would be imaging like an MRI or CAT scan. I have not heard of any chemical marker, but research moves pretty fast these days so maybe there is something under development that will be useable soon.

it may still be worth checking for blood in the urine periodically because that is also an early warning sign of problems in the kidneys.

Sorry you find yourself worrying about this David.

I was under the impression that there is not much risk of SRT induced cancers until about 20 years after the SRT. (That said my dad lived till he was 95 so I'd like to think I be around for quite a lot longer than 70 - and my wifes hair only looks reddish in certain light conditions. So, don't put off till tomorrow what you can do today unless your wife will object.)

I know they left your bladder in situ, but wasn't everything pretty damaged, so I'd guess that removing it might have lead to problems with the area healing up.

Bladder cancer diagnosis is difficult if the bladder has been bypassed, but I guess they woukld do a scan to see if there was anything the wrong shape in the area. And I assume you still have a urethra, so it might be possible to get a scope up it to have a look and take biopsy samples if something suspicious showed up on a scan. I'd also guess that you'd want the scope inserted under general anaesthetic. failing that a normal keyhole investigation might be possible to have a look.
See:
www.mayoclinic.com/health/bladder-cancer/DS00177/DSECTION=tests-and-diagnosis

Yes colon cancer can be tested for without having to look inside you by just testing your poop.
eg info at this website:
coloncancer.about.com/od/screening/a/ColonCancerTest.htm

I too have been having strange BMs and am now coing up for 2 years since SRT, my concern is that this is going to end up being proctitis rather than cancer of colon. (I think a mini colonoscopy ought to be possible as going just as far as the rectum is one way they detect and treat proctitis and radiation damage to the rectum). I also read that being careful about what you eat can avoid irritating the bowel and aggravating the situation.

I have read studies about colorectal cancer due to RT eg:
www.prostate-cancer-institute.com/radiation/radiation-and-secondary-tumors
But this study started over 30 years ago. So The question has to be asked if this risk is now deceasing due to RT now being directed from more angles than a few years ago so that tissue surrounding the prostate bed now receives a lower dose. SRT also involves a lower dose than guys having RT as primary treatment. So I hope I'm not being over optimistic to feel that the risk of getting cancer due to SRT is not that high.

Finally, if your pain might be due to damaged nerves can they try testing that idea by doing anything related to your spinal column to switch off certain nerves, or would that also switch off useful nerves too?

Alf

David:

Bottom line: you have some excellent questions to ask your medical experts

Mel

This is where John and I differ. We have no such evidence that can prove that secondary cancers have been eliminated by more recent technologies and in fact it's extremely unlikely that is true.

We have no evidence to use to measure the occurrences of secondary cancers for multiple reasons. Here's a couple as I understand things...

#1 We have not had long enough history and follow up in determining the more recent technologies effect on secondary cancer occurrences.
#2 Many individual cases of second cancers seldom get connected to the original treatment as the cause. All we know is there is a higher rate of additional cancers in patients that had previous radiation therapy. Tying them together is seldom done by the original treating RO. For example there is a higher incidence of colon cancer in prostate cancer patients than society. Is it radiation? We don't know. It could very well be lifestyle or social economic reasons but we are left guessing.

Generally speaking, the positive results of the use of radiation in cancer outweigh the risks of secondary cancers. That is unless you happen to be someone who have had to fight a secondary cancer. It was a risk I was willing to take on only after I was able to prove my case would indeed more likely benefit with adjuvant radiation than not.

Tony

Tony,
I think there is more and longer data out there than you care to believe. I had this discussion with Newporter a few months ago and he was of your belief until he researched the issue. There is without a doubt that the older ERBT did cause a significant amount of secondary cancers and a lot of data backs this up. There is no evidence that the newer forms of radiation have the same effect. I agree that we do not have 20 year data, but the older ERBT showed risk at 5 and 10 years which the newer technologies don't. The study I referenced took surgery patients as the control group for comparison, as you correctly identified that just having PC may increase the risks of secondary cancers by itself, so you have to look at both groups and not just radiation patients,or radiation patients compared to the general population. There is a widely held belief that radiation does cause secondary cancers but there is no data to support this at this point in time.
Make no mistake that secondary cancers never occurr, they do and are very rare, the highest number I have seen is .5% which is equal to the 30 day mortality following radical surgery as published by the NIH. Neither should be a cause for concern when considering treatments.
Once a belief is established it is very hard to give it up. Some patients have a fear of surgery and others a fear of radiation. Once this gets established the brain does an excellent job of filtering all evidence not supporting the belief and using other evidence to support it. Every belief we hold follows the same pattern. Only 45% of the population believes in the theory of evolution where there are mountains of scientific data to support it, and conversely 42% believe in ghosts where there is absolutely no scientific data to support it. Data means very little once a belief has been established.

Hi there! It's been awhile, but after the last weekend, I wanted to pop in and say hello!

Purgatory-

I actually thought of you, because while my parents were up visiting, I had to take my father to the ER to have a cath, because he couldn't urinate.  about six months (almost 4 years post IMRT) he started having a little blood in the urine.  He went to the ER, had a bunch of tests, scopes etc and they determined it is damage to his bladder from the radiation.  He also has visible damage to his colon that was evident on his colonoscopy, but has thankfully no problems in that area.  The bladder is a different story. 

I took him to the ER, because he couldn't urinate whatsoever.  They put a cath in after determining he had over 1L of fluid in his bladder and his bag filled with blood. It was horrifying.  All his tests came back normal and again.  We went home and three hours later had to return to the ER because the cath was plugged. They put in a 20 and sent him home.  Three days later he returned home and had the cath removed.  His urologist is going to do a procedure to try and stop the bleeding next week.  He hasn't had any problems since, but it is alarming nonetheless. I know you are a pro on catheters and I have a whole new respect for you and everything you have had to go through. 

In regards to the colonoscopy, they have camera's that are pill size that you can swallow or you can do a virtual.  All kinds of fun options :)

Wishing you all well and a lifetime of undetectables!

DD