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Radiation Late-Term Effects under-reported

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Posted 1/27/2012 4:55 PM (GMT 0)
Tony -- i'm okay.  just not into borrowing trouble.  the SEs were explained to me.  were they downplayed a bit?  perhaps.  but i was pretty freaked out at that point and part of the doctor's job was to reassure me.  i talked at all three radiation oncologists at the practice.  all were young and confident in what they do and they all assured me that i was doing absolutely the best thing for my health.  i believed them, and still do.

from what i've seen the guys with the most immediate problems from radiation previously had their prostates removed.  that was a big part of my uro's message when he recommended no surgery for me.  he said i would most likely need radiation and he wanted to leave the "target" in place.

ed

 

Posted 1/27/2012 5:39 PM (GMT 0)
Tony,
I agree with your last 2 posts. We also have to look at the type of radiation. SRT usually has a wider margin than primary radiation and should have a higher reported incidence of bowel issues. Full pelvic radiation would also have a higher incidence of gasrointestinal issues. Bowel issues are just about eliminated in BT, but do cause in increase in strictures. AS Fairwind mentioned the critical issue is in choosing an experienced doctor. An RO at UCLA stated that it takes at least 250 procedures in IMRT to the prostate for one to be experienced enough and any doctor with less than 250 procedures should be avoided.
AS Tud said, this was a general comment in the context of overtreatment and did not have any backup.
Posted 1/27/2012 6:44 PM (GMT 0)
Since I have no radiation SEs at this point (4 months post Adjuvant RT) I quizzed my RO PA last time I was in for follow-up on late side effects in their practice. She said they have seen isolated cases of rectal bleeding at or around 12 months. She told me she sees about 35-40 PCa patients per week and has seen the rectal bleeding maybe 3 or 4 times total. She said I was at increased risk for rectal or bladder cancer around 20 years from now.

My uro told me he sees very few radiation damage cases anymore and when he does, it is mostly older men.

Posted 1/27/2012 7:12 PM (GMT 0)
Southern:

But again let me remind you that the reason they often don't see such cases is because the poor victim goes somewhere else.

If I develop retal problems I will go to a GI guy. My RO guy made it quite clear that he would not be dealing with those SE

Mel

Posted 1/27/2012 7:18 PM (GMT 0)
English Alf - At least I am not alone in the SE of the RT. I finished in July 2010, just after you and my symptoms match yours exactly - wet farts, several bowel movements a day, last bit not coming out in bowel movements, and sometimes the sudden urge to go that would require pulling someone else off the "throne" if in a public bathroom in order to go. I also have increased dampness from dribbles, get up 2-3 times a night to pee. The worse thing is the other night I actually wet the bed, the first time this has happened since RP surgery. But, my PSA is still basicly zero so I can only hope that these losuy side efects will be worth it to be rid of the cancer. Squid.
Posted 1/27/2012 7:25 PM (GMT 0)
Squid, Alf, I guess we have the RT gang together again!
Posted 1/27/2012 8:14 PM (GMT 0)
Squid - I almost had one big leak at night, but i was fortunately lying on my back and the pee that came oput was absorbed by my shorts as I was waking up, and I still have a waterproof undersheet to protect the matress.
Good to know we're not alone with our troubles
Posted 1/27/2012 11:44 PM (GMT 0)
subic, good to hear from you brother, its been a while since ive seen you post.

hope you are still holding your own!

david
Posted 6/6/2015 3:47 PM (GMT 0)
Good posts from the past, just curious if there are other good threads in the radiation/surgery dilemma (I'm sure there probably are, I'll have to continue to look). I realize surgery with radiation to follow can be a difficult( but necessary for many) road. But even radiation alone is a frightening choice for me because of the unknowns down the road. And a few Drs. have told me that many side affects of radiation may not show up until 10+ years down the road (and/or the cancer returning). One Dr. explained that one of the problems is that there are not enough studies out there that show the effects of radiation 10+ years down the road. A lot of the studies are 5 years and under.
I keep thinking my choices have narrowed down to a Sh-t sandwich or a large Sh-t salad or a Sh-t sandwich with Sh-t salad included. Yikes!
Posted 6/6/2015 6:08 PM (GMT 0)

JamesE said...

I keep thinking my choices have narrowed down to a Sh-t sandwich or a large Sh-t salad or a Sh-t sandwich with Sh-t salad included. Yikes!

I don't think i've ever seen the predicament most of us find ourselves in upon diagnosis, expressed so eloquently. Serious post.
Posted 6/6/2015 7:43 PM (GMT 0)

Pratoman said...

JamesE said...

I keep thinking my choices have narrowed down to a Sh-t sandwich or a large Sh-t salad or a Sh-t sandwich with Sh-t salad included. Yikes!

I don't think i've ever seen the predicament most of us find ourselves in upon diagnosis, expressed so eloquently. Serious post.

Indeed. Someone here (who?) once told a panicked noob who was trying to decide among treatments: "I know you feel as though you are being asked what condiments you would like on your s*it sandwich"!
Posted 6/6/2015 10:06 PM (GMT 0)
Would you like fries with that?

To the OP point, I think this unknown about the effects of radiation 10-15-20 years down the road is the basic reason for the common recommendation that younger men (those under about 55) should go for surgery instead of radiation for low and intermediate risk cancers. And, basically, it was a strong indicator for me, at 56. I much preferred to think about the known risk of incontinence and ED than the long term unknown risk of what radiation SE's I'd find myself dealing with at the age of 75.
Posted 6/6/2015 10:54 PM (GMT 0)
Did any of you guys who had RT have the fiducial markers implanted first?
Posted 6/6/2015 11:11 PM (GMT 0)
This was and still is a great discussion..In my opinion, R.O.'s are experts at ducking blame for any side-effects that develop years down the road...Prostate patients can be a real problem because they live so long...Fortunately, the new LINACS coming online do a MUCH better job at limiting exposure to healthy tissue when programmed by R.O.'s who understand how to use them to the fullest advantage....But, if you live long enough that sometime down the road you need to wear a diaper you won't get much sympathy from your R.O. He will view his work as a great success..
Posted 6/6/2015 11:30 PM (GMT 0)
Interesting discussion. I sincerely hope that John T is correct (and I believe that he very often is) that what one has at 2 years is what one has. After I accepted the whole cancer concept, my code became that I'll go as hard as I can (no pun intended) for as long as I can. I'm 5 years out at this point, and still hitting on all cylinders. I like to check this forum frequently, but other than that, I never even think about cancer. If I had to advise any friend or family member, I would not hesitate to suggest the path that I have taken. There are no guarantees in life. You make the best decisions that you can, and live with the results. I once saw a roadside sign with which I totally agree: "My goal is to live every day of my life." Anything less is a crime.
Posted 6/7/2015 3:13 AM (GMT 0)
Interesting Zombie thread.

I see that I promised to report back if I was still here at 5 years out from ART.

Seems that I am. My Uro & GP blame most of my current issues on RT.

1) Multiple serious burns in my urethra just at an below the bladder neck leave me effectively incontinent, as the open wounds scar up, and prevent the urethra from closing as it should.

2) I had a total shutdown due to the conflicting scar tissue (evident in a cystoscope), and could only pass any urine with extreme pain. They did a dilation on me a few weeks back, and I'm due for a re-do in a few weeks.

3) The RT did damage to some scar areas from a previous colo-rectal surgery, so I replace jockey shorts often. There is only so much a Maytag should be called upon to accomplish.

All of this was on the list of "worst case scenarios". But based on my post op path, it made sense to take the risk.

Now I understand why the docs do not suggest RT for young guys if surgery has any chance.
Posted 6/7/2015 10:36 AM (GMT 0)
Well, having read through this thread I'm happy I've stuck to my guns about not having radiation as primary or secondary treatments. I've been against it since day one for many of the reasons stated above. I've been questioned many times as to why I chose surgery and not RT, this thread explains it better than I ever could. I will still consider spot radiation for pain at the appropriate time but long term effects won't be a player at that stage.

Having said that, I still maintain that people's decisions on their treatment are to be respected and supported for what they are, their choice. I wish all the RT people success with their treatment choice!

Thanks for the thread! HW is the best place there is to be on this journey of ours!

Cheers, Doug
Posted 6/7/2015 10:46 AM (GMT 0)
I guess I should have been a bit suspicious last summer when I was undergoing SRT. Started having what I considered some SEs during treatment and my RO dismissed my concerns saying it had to be something else. While I am pleased the treatment appears to have me in remission I am still concerned about SEs in the future. Right now I am trying to pin down the source for some disconcerting GI issues. I can't help think that they are radiation related but so far testing has not revealed anything. I have had blood test, gallbladder ultrasound and CT Scan and nothing was found other than a 9mm kidney stone in my left kidney (that really made my day!). Scheduled for endoscopy June 15 and I guess a colonoscopy after that if needed. Even though I have had digestive issues all my life, they started getting worse after radiation last summer. The past 8 months an issue that has been gradually getting worse (one that I never had before) is burping sulfur (the episodes can be overwhelming not to mention foul smelling) which later turns into a severe bout of diarrhea. Hope the doctor can soon find the source and hopefully a solution.
Posted 6/7/2015 11:12 AM (GMT 0)
The comment about RO's being really good at dodging responsibility rings true for me. In late 2003, my dad was found with mets on his ureters (following several years on HT and an HT vacation), and they went with pinpoint radiation. In February/March of 2004 the RO pronounced him cured. Six months later, he was dead from advanced spinal mets.

This discussion is a great counterbalance to the numerous comments that have a basic construct of, "given the high risk of immediate incontinence and ED, I don't know why anyone would choose surgery over radiation."

Here's why.

Sign me, "A surgical patient who has a drug-free trifecta 3 months later"
Posted 6/7/2015 2:12 PM (GMT 0)
I think one needs to be very careful about painting "radiation" with a broad brush. As TallAllen pointed out on HW in January, radiation as a primary treatment compared to SRT/ART are two different animals. www.healingwell.com/community/default.aspx?f=35&m=3301835

Beyond this, there are various types of "radiation" that are used as a primary treatment for PCa. LDR Brachytherapy, for example, has been used for well over 20 years with scant evidence of long term radiation problems. And, those problems that were reported, were frequently caused by migrating seeds. That issue has been virtually eliminated in the past 10-15 years by the use of stranded seeds that almost never migrate. So, concerns about long term radiation damage from LDR Brachy are generally misplaced or uninformed. Likewise HDR Brachy and SBRT, while they don't have the longevity of LDR Brachy have minimal reports of radiation damage when used as primary therapy. Indeed, the reported long term radiation damage is most frequently from older EBRT methods or when SRT occurs.

That's why it's so important to be data driven in one's decision making rather than what one may "think" happens regarding the various treatment choices.

Jim
Posted 6/7/2015 4:37 PM (GMT 0)
OOPS: WHEN I TRIED OUT LINKS, I ONLY GOT TO THE FIRST SURVIVOR STORIES PAGE. HOWEVER, YOU CAN TRY PLUGGING IN VARIOUS FILTERS ON TREATMENTS TO SEE WHO HAD RADIATION SIDE EFFECTS.

Here's a prostate cancer site that allows the user to input various filters to get a list of survivor stories who post annually on their treatments and experiences. After reading the HW thread, I plugged in survivors who had external beam radiation with ADT and without or surgery. Some of the stories describe short and long-term side effects of their radiation:

EXTERNAL BEAM+ADT AS 1ST TREATMENT 0-4 years ago
0-4 years since diagnosis: http://www.yananow.org/query_stories.php#topoflist

EXTERNAL BEAM ONLY AS 1ST TREATMENT 5-9 years ago
5-9 years since diagnosis w/o ADT added to radiation: http://www.yananow.org/query_stories.php#topoflist

SURGERY AS FIRST TREATMENT 0-4 YEARS AGO (check second column and/or read survivor stories to see who had salvage radiation) http://www.yananow.org/query_stories.php#topoflist

SURGERY AS FIRST TREATMENT 5-9 YEARS AGO (check second column and/or read survivor stories to see who had salvage radiation)
http://www.yananow.org/query_stories.php#topoflist
Posted 6/7/2015 5:43 PM (GMT 0)
You also have to consider that under the broad heading of External Beam lies a myriad set of treatment options. The more modern treatments (proton, cyberknife, imrt/igrt) are a far cry from the previous forms of external beam radiation used. I chose proton for the reason that it deposited less radiation to the healthy parts of my body. That is a scientific fact, regardless of its cost or other arguments against. TA is a big fan of SBRT. It also seems to be effective with few SEs. As for myself, I am now almost 4 years past treatment with no SEs and a nadir of 0.05. And yes, proton therapy does use a rectal balloon to both protect the rectum and secure the prostate.
Posted 6/8/2015 5:54 PM (GMT 0)
A close friend had proton radiation when he was diagnosed in 2009 with Gleason 7  prostate cancer at the age of 68.  After the treatments, his psa went to < 2 and stayed like that up until the day he died. 

In 2012 he was diagnosed with an very agressive form of luekimia and died 9 months later.  Prior to the radiation and prostate cancer, he was perfectly healthy, and never had any signs of luekimia, nothing. 

To the day he died, he kept insisting that his luekemia was a result of the proton radiation treatment he had for his prostate cancer.

Posted 6/8/2015 7:27 PM (GMT 0)

goatts said...
Did any of you guys who had RT have the fiducial markers implanted first?

I had SBRT as a primary treatment and have 3 gold fiducials and 3 small tattoos as reminders. Only been since Oct 20, 2014 but so far no adverse SE's.

Tall Allen reviewed my Dose Volume Histogram and was amazed that the radiation to my rectum was so low thanks to the perfect storm of favorable anatomy and visceral fat, first time a doctor, my RO Dr. Chris King at UCLA, ever told me being obese was advantageous.
Posted 6/8/2015 8:46 PM (GMT 0)

NY-Sooner said...
A close friend had proton radiation when he was diagnosed in 2009 with Gleason 7 prostate cancer at the age of 68. After the treatments, his psa went to < 2 and stayed like that up until the day he died.
In 2012 he was diagnosed with an very agressive form of luekimia and died 9 months later. Prior to the radiation and prostate cancer, he was perfectly healthy, and never had any signs of luekimia, nothing.

To the day he died, he kept insisting that his luekemia was a result of the proton radiation treatment he had for his prostate cancer.



Perhaps another one to mark down to the "slippery slope" one encounters with a diagnosis of low-risk, or favorable intermediate risk, PC...
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