Interesting information on radiation gone bad - not necessarily prostate radiation

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Gleason 6
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   Posted 5/16/2011 12:31 PM (GMT -6)   
With surgery or radiation (in this case) it's not only the the skill of radiologist or surgeon that needs to be considered. You must also consider the staff and facility. I guess it pays to get the best you can.

www.npr.org/2011/05/16/136249810/reporting-on-hidden-dangers-of-medical-radiation

topics.nytimes.com/top/news/us/series/radiation_boom/index.html

added html so links are clickable

Post Edited By Moderator (James C.) : 5/16/2011 12:20:13 PM (GMT-6)


John T
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   Posted 5/16/2011 4:44 PM (GMT -6)   
Just as in surgery experience is critical in radiation. Patients considering radiation should find a radiologist that has at least 250 procedures with prostate cancer patients as it takes time and skill to get it right.
JT

142
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Date Joined Jan 2010
Total Posts : 7084
   Posted 5/16/2011 4:53 PM (GMT -6)   
That is why I responded rather unpleasantly to someone who complained that his techs were "anal" about the rules. I wanted that, and was happy to see it. It is, after all, my anus they were protecting.
 
The way clinics are set up, the Radiologist might be the last one to worry about, since the techs are the ones "delivering". I was glad to see the same ones every day, and happier that there was a checklist, and no matter how friendly the environment was, nothing started until the boxes were checked and the system was ok.
 
If the plan was wrong, that's an issue, but the delivery is a daily challenge.
DaVinci 10/2009
My adjuvant IGRT journey (2010) -
www.healingwell.com/community/default.aspx?f=35&m=1756808

Tony Crispino
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Date Joined Dec 2006
Total Posts : 8128
   Posted 5/16/2011 5:33 PM (GMT -6)   
I concur with John, here.

We had this discussion a few months back about how much control the RT therapists have after the RO and physiologist design the therapy. It led to me contacting an and asking who decides to re-aim the beam when a shift is detected using beacons or gold markers. He said the technician is an important player in the role of radiation therapy but the steps can be traced.

I think it's a good question to ask. How long has your staff that will be working with me been doing prostate cancer specific cases?

I never asked that question. But my therapy started four years ago.

Tony
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
Da Vinci Surgery ~ 2/16/2007
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.
Undetectable PSA.

Blog: www.caringbridge.org/visit/tonycrispino

compiler
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Date Joined Nov 2009
Total Posts : 7270
   Posted 5/16/2011 5:57 PM (GMT -6)   
Wow. This is chilling, especially the fact that some of these disastrous symptoms come on months or a year later.
 
Mel

Tony Crispino
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Date Joined Dec 2006
Total Posts : 8128
   Posted 5/16/2011 6:15 PM (GMT -6)   
Mel,
Even years. Some SE's of radiation won't show for over a decade. While the good clearly outweighs the bad, I believe that at least some patients seeing an RO get a sugar coated message. For example IMRT has no long term studies (10-15 years) on these things. IMRT is one of the newer techniques ~ but not the newest. Thus there are many others that are newer and have even less data on long term efficacy and morbidity. We know that this therapy is relatively safe in the windows we have data. But if you are a younger man considering treating prostate cancer with radiation, do your homework. Get multiple opinions from more than one RO.

When it comes to the staff that actually points and fires the radiation ~ we have little to no data when our treatment begins.

Tony
Advanced Prostate Cancer at age 44 (I am 48 now)
pT3b,N0,Mx (original PSA was 19.8) EPE, PM, SVI. Gleason 4+3=7

Treatments:
Da Vinci Surgery ~ 2/16/2007
Adjuvant Radiation Therapy ~ IMRT Completed 8/07
Adjuvant Hormone Therapy ~ 28 months on Casodex and Lupron.
Undetectable PSA.

Blog: www.caringbridge.org/visit/tonycrispino

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 5/16/2011 6:47 PM (GMT -6)   
Glad to see someone at last paying attention to the potential dangers of any major radiation treatment. I've been talking about this for years, and of course, my most recent radiation disaster. RT as a primary or secondary treatment should not be taken lightly in my opinion. There are more radiation horror stories than you would ever care to know about.

David in SC
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

TaurusBull
Regular Member


Date Joined Jan 2010
Total Posts : 91
   Posted 5/16/2011 6:49 PM (GMT -6)   
This is exactly the kind of nerve-wracking information that shakes my confidence in making a decision about SRT. But, nonetheless, it is vital information that must be considered along with other factors.

Thanks for the links.

TB
Dx: in 6/2005, 49 yrs old (55 now) Reside in CT
daVinci RRP 8/2005
Post-surgery pathology G7 (3+4), pT2c, NX,MX, neg. margins, PNI present, tumor focally invades capsule wall, but not entirely through it.
PSA All <0.1 until... 7/2009 0.1, 10/2009 0.2, 1/2010 0.2, 2/2010 0.14, 4/2010 0.16, 8/2010 0.25, 9/2010 0.23, 12/2010 0.22, 4/2011 0.32

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 5/16/2011 7:01 PM (GMT -6)   
I would like to further add, that in SC, can't speak for other states, that you can get certified in as little as 18 months to be a radiation tech.

Also, this is my observation from reading what other men write here about the RT or SRT experience, is that they get way too caught up on the technology that is being used, the latest, bestest in IMRT hardware, etc. None of that matters if your RT plan is flawed. The techs go by the book, to the letter of the law (at least they are suppose to), based on the "plan" that the RO and others develop for the individual patient.

In my case, the RO was highly experienced, with the bulk of all her experience with PC, many years in the field, great references, great education background, etc.....yet, she screwed up big time with my plan and made a critical mistake that caused burning in me from the 4th of 39 treatments all the way to the end.
 
This mistake, and the fact that both the RO and the techs totally blew away my complaints about pain, added to the disaster.  It was only after my uro  (that some of you have repeatedly cast dispersions on) intervened by phone twice to the RO on my behalf, did the RO even remotely admit that despite their high tech IMRT, that perhaps scattering after all was taking place.
 
This led to my terrible story of being with suprapubic catheter for 51 weeks in a row post SRT, living off of pain pills  (only as legally prescribed) until it was decided that my bladder and bladder neck were effectively destroyed, thus leading to my last major surgery,  the bladder by-pass op, which has left me with a perm. stoma and urine collecting device.   And there is no chance it is ever going to be able to be fix or replaced.
 
The entire affair, has left me with perm. severe chronic fatigue, which is why I am still in PT after all this time, I still need pain meds at night, still getting bladder spasms even with the bladder being by-passed, and struggling to live life with a stoma.
All because of a "mistake" by an expert in her field.  Yes I know, "it" happens.


It also made me nervous when on many of the days, they were having constant alignment problems, subjecting me to as many as 8 "Snap X-rays" for re-alignment purposes, subjecting me to even more radiation.

I even asked the techs if the IMRT machine I was on was up to current re-fits and specs. I might as well asked them if the moon were made of cheese. I thought it was a good question, they thought it was none of my business.

Guys, don't get hooked on just the technology side, that can be the least of your troubles if something goes very wrong. And there is only so much you can check out in advance with your RO. It's not like buying a car with a checklist of available options.
And I went to a nationally known chain of radiation centers.

Just some food for thought. I am not even remotely opposed to RT for either primary or seconardy treatments if it is the best fit for one's case, but just don't go flying into expecting it to be a "walk in the park". It may be, or it may not. Just like with surgery, the side effects from RT don't always go by the book, and every living person's body reacts very differently to radiation posioning. No people are the same, lot of factors there as well.

David in SC

Post Edited (Purgatory) : 5/16/2011 6:09:32 PM (GMT-6)


142
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Date Joined Jan 2010
Total Posts : 7084
   Posted 5/16/2011 8:20 PM (GMT -6)   
I don't admit it often, but I read several articles from the NY papers about a guy whose techs set up according to the wrong set of filters, and basically executed him.
 
That weighed heavily on my decision against RT as a primary treatment. It didn't much matter once it was clear I needed it as adjuvant. But I will say that the precision and obvious dedication to their jobs gave me a sense of comfort with my RT staff.
 
I was down to the point where I'll go for one reason or go for another, so I tried it.
DaVinci 10/2009
My adjuvant IGRT journey (2010) -
www.healingwell.com/community/default.aspx?f=35&m=1756808

Postop
Regular Member


Date Joined Feb 2010
Total Posts : 385
   Posted 5/16/2011 8:35 PM (GMT -6)   
Every medical procedure has risks. People died during surgery, too. Somehow radiation is more scary. Maybe because it's so commonplace, and it's invisible. Technicians do most of the procedure. The New York Times story about the patient that was having radiation from a linear accelerator to treat her trigeminal nerve pain, and the field incorrectly included part of her brain, and she's now in a long term coma, that's really scary.

No matter what treatment you get, though, ultimately you have to give up control, and place your trust in others, and count on their skill and carefulness.

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7270
   Posted 5/16/2011 9:55 PM (GMT -6)   
I'm sure you can find equally ghastly stories about a surgery screwup.
 
Still, the scarey part is that we can get SE well after the deed is done.
 
Unfortunately, SRT by definition is our last curative bullet.
 
I didn't want to do this, but the walls were closing in -- no choice whatsoever unless you want to concede (in terms of a cure).
 
Also, it was easy to check out and confirm that the equipment was the latest and greatest, with certain advantages. That was nice. But it is almost impossible to really check out the RO and the techs. I had to go on gut feelings, check out the reputation, talk to others (via my local support group), ask some doctor friends of mine, etc. I did see my RO twice before agreeing to stay local. It was much easier to investigate surgeons.
 
I am still not sure that my RO was top-notch and that the techs were top-notch. I THINK they were all good. But how do I know? Remember, the damage they might have done might not show up for a year.
 
One can only hope for the best.
 
Mel 

Fairwind
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Date Joined Jul 2010
Total Posts : 3892
   Posted 5/16/2011 9:55 PM (GMT -6)   
It made me feel better to know that when there was any question about my daily treatment, anything "different", they did not start the machine until a Radiation Oncologist was in the control room..Sometimes this delayed things for 20 minutes..Fine with me...This only happened two or three times..When I asked what the problem was, the answer I got was "The machine settings and your position don't seem quite right to us..It's above our pay grade to continue without a R.O. present...
Age 68.
PSA age 55: 3.5, DRE normal.
age 58: 4.5
61: 5.2
64: 7.5, DRE "Abnormal"
65: 8.5, " normal", biopsy, 12 core, negative...
66 9.0 "normal", 2ed biopsy, negative, BPH, Proscar
67 4.5 DRE "normal"
68 7.0 3rd biopsy positive, 4 out of 12, G-6,7, 9
RALP Sept 3 2010, pos margin, one pos vesicle nodes neg. Post Op PSA 0.9 SRT, HT. 2-15-'11 PSA 0.0

Gleason 6
Veteran Member


Date Joined Mar 2011
Total Posts : 876
   Posted 5/17/2011 8:57 AM (GMT -6)   
DavidS explained yesterday how to make links active so you can click on them, but I still don't understand it. Maybe it's the way it was explained (no offense meant). Is it " [link I want active]/ " ???
Age 61 Active. No other problems (except small hernia)
PSA 4.3 9/10
PSA 5.5 2/11
PSA 7.1 3/11
Template Biopsy 6 pos out of 40 3/25/11 GS 6 (3+3)
CT bone scan neg
6/18 areas positive - 2 in left base, 4 left apex. 6/40 cores pos. 33cc.
Stage T1C
Met with Dr. Wehle @ Mayo 5/4/11
Appointment scheduled with RO Dr. Buskirk at Mayo 5/17/11

Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4849
   Posted 5/17/2011 9:13 AM (GMT -6)   

I simply copy and paste them after I click the POST REPLY button. Don't use the quick reply box.

http://www.healingwell.com/community/default.aspx?f=35&m=2111591

If they look pink'ish while you're typing you should be good to go.


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7270
   Posted 5/17/2011 9:25 AM (GMT -6)   
Well, how do you do some thing like this.
 
Say I want to direct you to:
 
 
But I want the word to read TRY THIS.
 
I think Casey does that.
 
How do I do it?
 
Mel

Gleason 6
Veteran Member


Date Joined Mar 2011
Total Posts : 876
   Posted 5/17/2011 9:27 AM (GMT -6)   
...or why didn't it create the link in my original post?
Age 61 Active. No other problems (except small hernia)
PSA 4.3 9/10
PSA 5.5 2/11
PSA 7.1 3/11
Template Biopsy 6 pos out of 40 3/25/11 GS 6 (3+3)
CT bone scan neg
6/18 areas positive - 2 in left base, 4 left apex. 6/40 cores pos. 33cc.
Stage T1C
Met with Dr. Wehle @ Mayo 5/4/11
Appointment scheduled with RO Dr. Buskirk at Mayo 5/17/11

Gleason 6
Veteran Member


Date Joined Mar 2011
Total Posts : 876
   Posted 5/17/2011 9:45 AM (GMT -6)   
Searched and found a couple of things:

Click here for article

This is what I typed (between the quotes) - Lets see if it works:

"Click here for article"

The source link can be copy and pasted into the body of the post, and those who wish and know how can make it clickable by using the URL feature just above the post box. To use it, first click the URL button, then type or paste the link, then click the URL button again. This will add the coding for a clickable link. Manually you can type in the same thing. Just type the square bracket to the right og the P key, then URL then the other square bracket - second key to the right of the P key, then type or paste you link, then another square bracket (next to the P key, then the backslash on the question key, next to the right shift, then the letters URL, and the square bracket, second key on the right from the P key. there, simple, huh? There are no spaces between any of this. smilewinkgrin For demo purpose, I am gonna add spaces, other siw they won't show the coding that I want you to see. [ url ] www.healingwell.com [ / url ]. Remove spacing and you have a clickable link to Healing Well.[url]

Gleason 6
Veteran Member


Date Joined Mar 2011
Total Posts : 876
   Posted 5/17/2011 9:49 AM (GMT -6)   
I thought putting what I typed between quotes would show what I typed, but it just shows it as a link.

If you go to "Post reply" and not "quick reply", hover over "URL", underneath "URL" it will display an example of both how to put in a standard link or a link with your our wording.

reachout
Veteran Member


Date Joined May 2009
Total Posts : 739
   Posted 5/17/2011 11:49 AM (GMT -6)   
The radiation guys I spoke with acknowledged potential SEs but they downplayed the serious ones as being pretty rare. I think they were being truthful with me, but who knows? Face it, we get the best info then lay our bets on the best odds and roll the dice.
Age: 66
PSA: 7 tests over 2 years bounced around from 2.6 to 5.6
Biopsy 8 of 12 positive, Gleason 3+4, T2a
DaVinci August 2009, pathology Gleason 4+3, neg margins, T2c
Continent right away, ED
Viagra, Cialis did't work, Trimix works well
Post-surgery PSA:
3, month: undetectable <.1; 6 month: undetectable <.014 (ultrasensitive); 9, 12, 15 month: undetectable <.1; 18 and 19 month detectable .05.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 5/17/2011 12:18 PM (GMT -6)   
reachout,

the serious side effects are rare, granted. but as my surgeon said, surgical problems can be fixed with additional surgery often, but the kind of damage from radiation when it goes wrong, can put corrective surgeries right out of the game. this is why i was not a candidate to have advanced bladder neck reconstructive surgery at the point where it might have helped me avoid the urosotmy i undewent. there was too much damage done to the area by the radiation. we have to be talking apples to apples on this subject.

david
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

reachout
Veteran Member


Date Joined May 2009
Total Posts : 739
   Posted 5/17/2011 2:26 PM (GMT -6)   
David, from what you said about your urologist having to intervene with the RO I think you're one of the few patients I would say has a legitimate malpractice case. We all know that crap happens but when the medical team doesn't listen to what the patient is telling them that's crap that should not happen.
Age: 66
PSA: 7 tests over 2 years bounced around from 2.6 to 5.6
Biopsy 8 of 12 positive, Gleason 3+4, T2a
DaVinci August 2009, pathology Gleason 4+3, neg margins, T2c
Continent right away, ED
Viagra, Cialis did't work, Trimix works well
Post-surgery PSA:
3, month: undetectable <.1; 6 month: undetectable <.014 (ultrasensitive); 9, 12, 15 month: undetectable <.1; 18 and 19 month detectable .05.
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