Disturbing and conflicting radiation information

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Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 2/3/2011 5:37 PM (GMT -6)   

Yesterday, I went and picked up all my medical records from the Radiation Clinic where I underwent SRT.  It was all on a CD and cost me ten bucks.  It was suppose to have everything on it including all the doctor’s notes and doctor visits notes.  I was shocked at how much wasn’t on the CD.  The real shocker, I was told I was receiving a total of 72 gys of rad, which is a bit on the high side for SRT, but according to the paperwork, I received 76.8 gys.  That’s a huge difference in the number.  More evidence that something terrible went wrong with my entire SRT experience.

And mysteriously, none of the doctor's visits notes were on the CD, nor the planning session notes, nor the one and only followup visit I had.  Even though I sat there and watched her typing in notes of these sessions into her laptop as we spoke.

 

Post Edited (Purgatory) : 2/3/2011 4:40:31 PM (GMT-7)


MrsGFM
Regular Member


Date Joined Feb 2010
Total Posts : 115
   Posted 2/3/2011 5:59 PM (GMT -6)   
You have the right to that information. Go back and ask for it again. Ask for the supervisor if you have to. Tell them exactly what papers or forms you want copies of. YOU own the information. They only own the paper.

I am a former medical record professional
Mr GFM's statistics:
Age 50 at diagnosis
PSA History: 10-05 1.3, 01-07 2.09
8-07 - PSA at Biopsy: 2.26
2 of 12 positive
Gleason Score 3+3 6
11-07 - Robotic surgery hospitalized overnight.
Path Report:
Prostatic adenocardinoma, Gleasons 3+3+6, moderately differentiated
Percent of Prostate involved by tumor 5%
Staging pT2c pNx pMx
Margins free of tumor - no further invasion or extension
Catheter out in about 9 days. No incontinence.
Back to work in 2 weeks
ED - resolved. No meds needed at this time.
Post Op PSA: 03-08 0.01, 10-08 0.02, 7-09 0.04, 1-10 0.04, 7-10 0.04

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3741
   Posted 2/3/2011 6:09 PM (GMT -6)   
When the smell of litigation is in the air, the only way you will get that kind of information is by obtaining a court order...

Neither doctors or hospitals are required to incriminate themselves nor are they required to maintain evidence of their wrongdoing or negligence.

Notes? What notes? Laptops? Oh, those laptops. They were all sold after we removed and destroyed their hard-drives...

compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7203
   Posted 2/3/2011 6:46 PM (GMT -6)   
Fairwind:
 
But they are also not allowed to tamper, and it sounds like that's what's happening here.
 
David-- the question still remains whether or not the 76.8 gys is still within the normal range in terms of standard of care. It may be. Remember when you asked that question? It seems there was quite a range. I remember your conjecture that one would think with the newer equipment that is capable of sparing more healthy tissue that they would use a higher dosage of radiation. But I don't think they do.
 
Still, 76.8 seems high for SRT. Isn't SRT dosage supposed to be less than adjuvent radiation?
 
Mel

Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 310
   Posted 2/3/2011 6:48 PM (GMT -6)   
Purg,

Not that I think for a minute that you will take advice from me, but ...

I have been a plaintiff in litigation (albeit a while ago). Your post is naive. Defendants are not going to "play fair." Settle in for a very long, very bitter fight in which they deny everything, delay at every opportunity, and try to take advantage of every weakness, including your health.

I assume you have hired good lawyers. Tell them everything and then let them work.

Zen9

BobCape
Regular Member


Date Joined Jun 2010
Total Posts : 416
   Posted 2/3/2011 7:08 PM (GMT -6)   
Purg.

I would suggest that you write a certified letter to the administrator for this clinic.

I wouldn't mention anything about potential litigation, anything about your dipleasure with the results, your theory about too much gys, or what standards may or may not be.

I would explain EXCLUSIVELY in this letter that you have received SOME of your presonal medical treatment records that they hold, but not all. I would remind them that you need ALL records and notes so that your doctors may have all relevant information on your care to date, so they might better consider ALL information in determining your next step for you ongoing treatment of pca.

You might add "and Dr XXXX notes that she recorded suring each section could be of utmost importance, but were not included in what I assumed was a complete copy of my treament records with you.

If it gets to that point you WILL unltimately get all your records.. any attempt to hide stuff will only serve to show their guilt.

I'd ask nice as if you are just going someplace else for treatment.
And Lawyer stuff is always the last resort... Of course, if you were already paying a laWyer, it would the the LAWYER who would be sedning a "litigation hold" notice to these people, putting them (and their lawyers) on notice that they MUST SAVE EVERYTHING REMOTELY HAVING TO DO WITH YOU.

I'd try the nice route 1st, to perhaps see if a lawyer is worth getting involved in. Cancer, doctors, insurance companies, lawyers and courts.. Having to deal with all of that is ALREADY a big price to pay.

Best to you.

tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2842
   Posted 2/3/2011 7:24 PM (GMT -6)   
David - my initial response is to let your lawyers get the information for you- that is what you are paying them for
... and (personal experience) in other cases, information given out is often just the tip of the iceberg - "..oops! we forgot to include that? "
all the best.
non-litigating hugs,
BRONSON
Age: 55 - gay with spouse of 14 years, Steve
location: Peterborough, Ontario, Canada
PSA: 10/06/09 - 3.86
Biopsy: 10/16/09- 6 of 12 cancerous samples, Gleason 7 (4+3)
Radical Prostatectomy: 11/18/09
Pathology: pT3a -Gleason 7 -extraprostatic extension -perineural invasion -prostate weight -34.1 gm
PSA: 04/08/10 -0.05 -Zero Club
PSA: 09/23/10 -0.05 -Zero Club
PSA: 03/12/11 - TBA

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 2/3/2011 7:51 PM (GMT -6)   
For starters, it was my attorney that asked me to obtain the records for them.

And zen, nothing naive in my post, don't get that one at all. Been handling business and contract law matters all my working life. this litigation is new ground for me, and that is what lawyers are for.

bob cape, i actually did what you suggested as far back as july of 2010, and the radiation center's response? was not to respond at all, wouldn't even have me come back in, not a word. sure my letter tipped off their legal department and the doctor was told not to answer.

mrsgfm: yours was good advice, and i did ask for all records and doctors notes to be included, but obviously, outside of a subpeno, that might not happen on its own.

mel: on the amount of gys, it was not a subjective discussion. the "plan" stated 72.0 gys administered over 39 treatments, the records show 76.8 gys being administered over 39 treatments. I agreed to the 72, which was stated to be on the high side for SRT, and I never was told or agreed to the 76.8.
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 marg
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 11/10 Not taking it
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 9/23/10

mikey1955
Veteran Member


Date Joined Dec 2008
Total Posts : 673
   Posted 2/3/2011 8:12 PM (GMT -6)   

David,

Hope you get the info you need one way or another. Good luck, this could be a long road and I think you're justified in following it.

 

Mike


JNF
Veteran Member


Date Joined Dec 2010
Total Posts : 3745
   Posted 2/3/2011 9:00 PM (GMT -6)   
I have been reading several studies and protocal descriptions for SRT and I see a range from 36Gy in 6 fractions for HDR brachytherapy to as high as 80Gy for IMRT. A large study showed considrable improvement when using more than 72Gy rather than the older standard of 66Gy.

From what I have read the 76.8Gy doesn't appearto be too high unless it is missdirected. That they used more dose than you agreed to is a problem for them. If they dosed the wrong place with even fewer Gy it is malpractice in my opinion.

From what we read coming from the machine manufacturers and the practioners that deliver the rads, they never get it wrong so we can rest assured that we won't be significanty harmed. Obviously in your case, something went horribly wrong. We all wish you the best in your action and recovery. Your story is one many of us use to atttempt to keep our professionals diligent and caring.

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 2/3/2011 9:07 PM (GMT -6)   
thank you mike, and jnf.
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 marg
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 11/10 Not taking it
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 9/23/10

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 2/3/2011 9:31 PM (GMT -6)   
question: truly amazing story, but sure more typical than we want to believe could be possible. feel bad about your dad.
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 marg
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 11/10 Not taking it
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 9/23/10

pasayten
Regular Member


Date Joined Mar 2007
Total Posts : 437
   Posted 2/3/2011 11:30 PM (GMT -6)   
David,
 
I am sure the SRT radiation dose must also consider the post op patholgy, gleason statge, doctors notes on surgery, time for reccurence,  psa velocity,  maybe even physical weight and body configurations....  etc...
 
For me it was 64 gys,  32 trtmts x 2 gys each...  I was a G6 with two focal point margins,  T2c.  assumed BCR at 32 months when psa rose to 0.14.   I am also about 162lbs...
 
I imagine higher dose would be appropiate for higher gleason, margins, etc...
 
Bottom line though is that you should never get more than they originally told you.  Also it sounded like they never told you anything about keeping bladder full...   etc
 
Interesting is that I have usually seen each dose at 1.8 or 2 gys...  If yours was 39 x 1.8, that would be 70.2 gys...   39 x 2 gys would be 78.0...   I will have to go back thru my records,  but I thought I had a sheet with the exact figures of radiation I recieved given to me.
 
Take care my friend...   pasayten
3/2007 - Dx 59 y/o - 12 point biopsy - Left 0/6 Right 1/6 Gleason 3+3 T1c
4/2007 - DaVinci RRP performed - Gleason 6 T2c Nx Mx
PSA 7/07 0.01, 6/08 0.02, 12/08 0.03, 10/09 0.13
11/09 Consult BCR and rec for SRT
1/2010 IMRT SRT - 32 sessions 2 gys for 64 gys total.
6/2010 3 mth PSA post SRT 0.02
1/2011 10 mth PSA 0.01
My Extended Signature

Sephie
Veteran Member


Date Joined Jun 2008
Total Posts : 1804
   Posted 2/4/2011 5:53 AM (GMT -6)   
David, when we thought John would need SRT (almost 2 years) between 66 to 68 gys. I remember when you began the SRT journey and your posting that dosage would be around 72 gys...closer to primary treatment dosage than to secondary. It's a darn shame that you are going through this nightmare. And to find out that this is not the first time that a patient is seeking legal action against this doctor just puts salt into the proverbial wound.

I hope you and Peg are doing well in spite of all this. John and I are great...next PSA is in March (the third anniversary of his surgery). While I'm not as nervous as I used to be, I still get somewhat anxious when I think too long about it so I try not to. I know you put off your next PSA test and will continue to send good thoughts your way that the news will be good.

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 2/4/2011 6:13 AM (GMT -6)   
And people wonder why zufus, says question everything and all the time????  What you said so far doesn't pass the righteousness smell test (my dog even says the same thing and he has a nose for that).  Hey  take two sheriffs and call me in the morning!  (LOL)

Trust but verify is a decent mantra in dealing with medical situations.
 
Best to you Purg- they don't want negative publicity of course, your trump card in discussion?
 
If you get the truthful stuff, let us know and how much effort it is to do so....may be a clue for others going forward. Now everybodies likely wondering on their case.

Post Edited (zufus) : 2/4/2011 11:02:47 AM (GMT-7)


English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2215
   Posted 2/4/2011 7:36 AM (GMT -6)   
David.
I hope you don't mind me interpretting the "mood" of your intial post to clarify things.
It did not seem the least naive to me. I think you were just explaining as succinctly as possible and without using any emotional adjectives what the latest blow below the belt was that you have been hit with. A sort of "Guys, You'll never guess what they've gone and done now." remark

And, personally, I would prefer paper records to digital ones in such a situation. Handwritten notes unlike typed-up ones are a bit more tamper proof. (I have in the past deliberately prepared tampered digital records to show someone that they should not be telling people to send them scanned copies of documents via email etc.)
My PCa-related medical notes are all written up by hand and not put on latops etc, but our GP has just started doing only digital notes, so I hope that is OK long term.
(I am all to aware of errors creeping in, as my wife is just trying to sort out something non-medical where an important word relating to her identity was omitted when some paper records were digitalised!)

I hope you can get the records you need in a non-confrontational way all the same, as right now I think your QOL will be better for not having too big a fight.

Alf

daveshan
Regular Member


Date Joined Jan 2010
Total Posts : 363
   Posted 2/4/2011 9:24 AM (GMT -6)   
David,
Really sorry to hear the records were "Doctored" not surprised though. The omission will look bad to a jury if that's the direction you're going. If it is I wish you the best of luck in your endeavor.

BTW I also have considered action. The day after I found out about my Dr's lapse in informing me of my '08 rise I was in the office getting a copy of my records, also on CD but free. I worried about the grapevine carrying news about how pissed I was back to my PCP and wanted to get everything in its original state before confronting her about the issue.

Best of luck whichever direction you choose to go.
Dave in Durango CO

Julietinthewoods
Regular Member


Date Joined Sep 2010
Total Posts : 309
   Posted 2/4/2011 10:32 AM (GMT -6)   
David,

When I had my botched surgery, I realized something was wrong while still laying in the hospital post-op day four and noticing for the first time that the urine in the bag was maroon. I asked a nurse, who said "That's because Dr. W accidentally cut your bladder". At that point I managed to get the phone over to the bed, call his office (across the street) and ask the clerk for copies of my records to be prepared for pickup. He was standing at my bedside fifteen minutes later, flustered, pale and sweaty. I remember staring at him in amazement as he told me the records didn't belong to me and I "wouldn't understand them anyway". A phone call to my father, an attorney, straightened that issue out.

To make a long story short I didn't pursue legal action because it was a mistake, and accidents happen during abdominal surgery. However, if I had known then that I would have bladder problems the rest of my life as a result, I would have at least considered it. I agree with Mike...you have every reason to pursue this if you want to. I hope you get the answers you deserve.

Juliet

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 2/4/2011 11:06 AM (GMT -6)   
Thank you, got some good answers and input so far. My original post wasnt really intended to be about any legal front, it was the fact that I was given 76.8 gys of radiation, not the 72 that the radiation oncologist planned and told me about, and what I agreed to. The 72 was even higher than their normal range for SRT, but she thought with my velocity issues, a bit more would be better.

Also saw in my records, that when I had old school radiation for my neck/throat in 2000, was given 90 gys total, which was more than I remembered. I do remember that they said they were giving twice the radiation to the side of my throat that had the cancer, and half on the side that tested benign to be on the safe side.

Surely I have reached some kind of lifetime limit you would think.
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 marg
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 11/10 Not taking it
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 9/23/10

wigged-out
Regular Member


Date Joined Dec 2009
Total Posts : 130
   Posted 2/4/2011 11:54 AM (GMT -6)   
David,

Sorry to here about this mystery.

As far as medical records go, it is my understanding that you CAN get all medical reports, lab results, notes etc. from hospital/doctors, but they legally have a right to charge you per page of info. May not be much, like a dollar or two a page, but still rather annoying since the information is about YOU. But somebody must physically run the stuff through a copy machine.

But the key thing is that the place with the records is not obligated to give out these records.

I believe you can avoid charges or fees IF you have the place that has the records that you want send them directly to your primary care provider.

I sincerely hope this works out. You need a break.

Best wishes.

W-O
Age: 55- good health. Exercise regularly.
DRE 11/08- no lumps, just enlarged prostate
1st PSA, total- 11/08= 6.1
2nd PSA, total- 8/09= 6.6
Needle Biopsy 11/09- 12 samples. 11 OK. Right Lateral Mid- Adenocarcinoma Gleason score 3+3=6 9 involving 5% of specimen.
PSA rising from 7.0 to 8.0 thru 2010.
2nd biopsy- 2 positive cores, one a 3+3=6, 3% and the other a 3+4=7, 20%
Treatment needed.
Feb. 2011

mjluke
Regular Member


Date Joined Jan 2009
Total Posts : 189
   Posted 2/4/2011 1:38 PM (GMT -6)   
Purgatory:
 
Not trying to pry, but I hope your attorney is working on a contingency fee basis as opposed to an hourly rate.
 
These cases can be long, drawn-out and tangly and the doctors( or other health care professionals) insurers generally will fight it to the bitter end.
 
The fact that things did not work out as planned or an individual is not happy with the treatment or care provided is not really the issue. In these medical malpractice cases the test is- did the doctor act, as any other doctor acting reasonably, would have acted? The burden of proof is with the plaintiff and it is generally a difficult one in these situations.
 
I  doubt that any of this is news to you.
 
Good luck with it.
 
 
 
63 years old-tumor discovered on digital exam- biopsy December 2008-
4 of 12 samples positive-all on right side
Gleason 3+3=6
PSA-3
Otherwise excellent health.
Brachytherapy- May 19, 2009 -so far, so good.
 
  "There may come a day when the courage of men will fail, but it will not be this day."

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 2/4/2011 3:15 PM (GMT -6)   
contingency only. really has nothing to do with the results, it has to do with perm. body damage that could have been easily avoided.
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 marg
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 11/10 Not taking it
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 9/23/10

Zen9
Regular Member


Date Joined Oct 2009
Total Posts : 310
   Posted 2/4/2011 3:48 PM (GMT -6)   
Purg,

I'm homebound today due to icing conditions on the roads (rare for down here!). I thought I'd spend some time this afternoon cutting and pasting from some of your posts while you were getting your radiation treatments. In the absence of full and accurate doctor records, I hope this will be helpful to you and your attorneys in the fight ahead - jog your memory about things to ask and issues to raise.

Zen9


October 5, 2009: "With the suprapubic catheter in place, there was no drinking or trying to hold in vast quanities of water ahead of time, that is a blessing in itself. They were able to work around my new catheter without any problems, and were quite careful not to hurt me where it exits my body, as it is still very sore 4 days after surgery.... I talked to my radiation oncologist when finished. She said she did increase the length of the treatments and the total greys higher, about to the point of a primary treatment. She determined that the PC in me was very agressive right from the start, both pre-surgery and post surgery, and that anything less than this dosage might prove to be entirely ineffective. I have to trust her judgement on that point. You only get once chance with this salvage treatment, so I guess the more the merrier."

October 8, 2009: "When I asked my current radiation oncologist about why she increased the number of treatments from 35 to 39 and the greys to 72, her answer pretty well echoed that thought without her actually saying it. She did indicate that my pre-surgery and post-surgery psa velocity were something to be deeply concerned about.... Was reading an article about radiation sickness, that even at 1 - 2 greys daily, a person can get nausea and vomiting, so I am in the range for the nausea attacks I have been feeling this week. The one tech on the machine said there was no way I could be feeling nausea. Told her there was no reason I would be lying, as I rarely if ever experience nausea normally. Should have printed off the article and had her read it tommorow."

October 9, 2009: "For the record, have felt nausea on all 5 days. Not severe, but reminds me of the miserable feelings I felt 10 years ago getting radiation."

October 12, 2009: "Today began 2nd week of my 8 weeks of salvage radiation treatment. Zap #6 went a bit smoother, one new operator, and not all the alignment problems like last week. But then there was only one other person in the waiting room this time. Met with my Radiation Oncologist today, and discussed all my current concerns with her. When I feel I need it, she will give me a script for some anti nausea med. Told her it is mild now, rather wait until it really gets bad.... She did say that the 72 grys of projected radiation is a whole lot considering its being concentrated in a very narrow area, but she said with my psa velocity issues, both pre and post surgery, its my best shot to nip what is left in the bud. So she said the side effects will be tough because its not being spread out.... It really helps when you trust your medical team. I am fortunate, as I have a great long term GP, great uro/surgeon, and now a great and compasionate radiation oncologist."

October 14, 2009: "Today was number 8 of 39. Lots of alignment problems, sure makes me nervous, hoping they really have it right when I get zapped."

October 16, 2009: "Today completed my 2nd full week of SRT. Hardly anyone there today, so I was in and out in about 30 minutes, they had different operators this time, and they didn't have all the alignment problems that went on all week."

October 19, 2009: "Today was #11, it was delayed for 2 hours because of an "emergency", though no one would ever say what it was. I was already sore from the stopped up catheter episode this morning (see thread below) and it took 55 minutes to get the treatment done with the radiation. It was the original crew that seems to endless trouble with alignments. Twice, they said good to go, and position the machine to do the first zap, and they had to abort and bring the machine back to the top. No explanations are ever giving, in the position I am in, I can hear them talking barely, but they are out of my line of sight being on my back.
Was going to gripe to the Radiaiton Oncologist, my day to see her, but by the time that got screwing around with the treatment ,the doctor had left the building with a message that I could talk to her after Wednesday's treatment."

October 21, 2009: "I asked if there was anything in particular she monitors once a treatment has began ,and she not really, and even if she did, she said it wouldn't change the plan or the schedule."

October 22, 2009: "Actually she said with IMRT, the alignments are so very critical, despite having the tattoos and the little adhisive dots they put all over you each time. She said as I suspected, as a safety precaution, the machine won't fire radiation unless a great number of parameters that are in patient's program specific to them. Since the machine is used all day on a number of patients and procedures, she said it can take time, but its to assure that I get exactly the gys where and how she wants them distributed. Sounded like a reasonable answer to me, but hey, what would I know? lol. They are the experts. I know from talking to the techs, they have physical alignments, mutiple laser alignments, I see the red lines all over the place in the treatment room, and they even use GPS on some of the fixed points. Quite a machine, that part impresses me."

October 23, 2009: "I am a homebody by nature, unless it was a life or death situation, I would not be interested in going far off for treatment and staying in a hotel for weeks. But thats just me....
Made another Friday, 3 weeks down out of 8, still a ways to go. Lot of pain around the SP tube when they zapped me today. After, they inspected my lower navel area, and admitted what I had been saying for days, that I am getting radiation burns on the skin already. So much for the "there's no way you can be getting that so soon" attitutude I heard a week ago. They are going to have the radiation dr. look at it Monday when I meet with her.... Part of the reason she switched her plan for me to IMRT was to lessen the side effects, and know what a troublesome bladder neck connection I have. She was the one to push for the SP cath for the same reason."

October 26, 2009: "Today's treatment was annoying, no one's fault I guess, was laid on my back for 50 full minutes why they had the usual alignment battle. By the time they were done, had to be helped into the sitting position and my back was throbbing. Since treatment 14, every one now makes the exit of my SP catheter hurt and burn. I hate the thought of going through that 23 more times. Still get nausea, but its not strong, doesnt last long. Have lost 7 lbs in the first 3 weeks of treatment, so it is having some effect on my eating. Saw the Rad Oncologist today, but I really didnt have much to ask this time, was too sore. She said I was doing fine, but to expect the fatigue wall to keep increasing."

October 27, 2009: "Was in and out in 35 minutes. But when the zaps were over, took both of the operators to help me up, because of the burning pain where the SP cath exits my body. This problem is getting worse, they are going to talk to my dr. When I talked to her yesterday, she seemed clueless about why I would feel anything at all, and said to mention it to my Uro. When I mentioned it to him a week or so ago, he blamed it on the radiation and what he called "scattering". All I know its hurts when the treatment session ends, and it can hurt for hours after. Also, and I had mentioned this to the dr too, been getting a lot of penile pain in the hours after being zapped, almost like if my "friend" were bruised, but obviously not a mark on me. No explanation was giving to me for that either. The main operator still stressed that in 8 years, they had never treated anyone with a catheter in place, let alone a SP cath. Hope its not causing or will be causing a problem.
Pain or no pain, I am totally convinced that without the cath, I would be in a total retention situation already, so I am not second guessing the push to have the SP installed."

October 28 2009: "The IMRT machine indexes and zaps 7 times with me as it circles my body. Interestingly, position 6 shoots right where my SP cath exits below my navel. Immediately it started hurting there as soon as the zap in that position ended. Again, a burning, searing pain right at the spot where the cath tube comes out. Not my imagination like one of the operators insinuated. Will bring it up again to the Rad. Oncl. next Monday when I meet her."

October 29, 2009: "At position six, once again, felt a mild burning pain at the SP exit, and told the operators that I wanted a full answer and that I would be reporting it to the dr, again, on Monday. I asked if it were possible if it was like some kind of weird microwave effect, heating up the tube in my. THey said no, unless there was some metal in it, which there isn't. So once again, left sore at that spot and had to be helped up again. My only fear is that something may get damaged out of this deal."

October 30, 2009: "Same as before, when the machine zaps in the 6th pos, immediately felt heat and pain at the SP exit. Also in the 4th position, which is right directly over me, the last two days zap has produced penis pain at that point. Again, my operators claim innocence and act as if it were my imagination. Going to get my URO to speak to the Rad Oncolog after I meet with both of them Monday. I just want to make sure I am safe. If it is a question of sensitivity and pain, I can deal with that for 4 more weeks, just want to be positive that I am not in any danger. One of those times you have to be pro-active."

November 2, 2009: "Did get to have my weekly meeting with my rad. oncologisit. She finally admits (after a month) that some of the pain I have described in my penile shaft, testicles, and lower bladder region are related to the radiation. Duh, told them that after the 1st week. She also thinks the big increase in bleeding over the weekend in my cath bag is probably radiation related. She's concerned about the uro wanting to do a hard dialation of my bladder neck today, concerned it might even make things worse from her side since she is treating that area as well. I told her, before someone ends up putting me into more un needed pain and trauma, why don't you call him up on the phone before I go there this afternoon, and decide if it is really needed today, and is it worth the risk, if any? You wouldn't think I would have to suggest that. Told her that her tech crews are pretty decent, but instead of questioning the validity of a patient's pain reports, just to simply report to her directly what the patients are saying. Told her I have no motivation or reason to make up stories of things hurting for the fun of it. She agreed."

November 6, 2009: "The most experienced operator is being moved to another location, so there will be someone new on the team for the remaining 3 weeks. Not sure how I feel about that."

November 9, 2009: "Talked to my radiation oncologist, she was thrilled that the uro didnt dialate me last week, she felt it would have been a big mistake."

November 10, 2009: "Everyone knows that RT in any form plays havoc on one's immune system, that's a given. The catheter part is a bit unusual, but the alternative is to be blocked up again, involving emergency procedures in the middle of radiation, not a good combination.... I am very compliant with my medical team, and I communicate openly and at depth with all the players. We talk in great detail about a lot of issues."

November 11, 2009: "After giving me a day yesterday of lesser pains and discomforts, the pain gods struck me with vengence today. Been a day of extreme soreness, tiredness (despite sleeping fine last night), many bloody catheter bags, and several dozen spasms. The treatment was about a 30 minute affair today, but it took both women to help this old man back upright, it was so sore at the SP catheter site."

November 12, 2009: "Yes, I am nearing the end, but it will still be a long 10 treatments in my book. When I left there, took both women to help me up again, felt kind of stunned and dazed to be honest. Searing pain in my penis and rectum, entire abdomen was sore and swollen feeling, very sensitive to the touch, and of course ,the SP catheter tube exit felt like it was on fire. By the time I changed back into my street clothes and started walking away, was so nasueated that for the first time, thought I was going to hurl."

November 13, 2009: "Trust me, I am not afraid of vitamins nor trying to prove some Martyr's path here, but my own radiation oncologist is so adamant against vitamins in general and the D-3 in particular, what should I think as her patient? And when her view echos my long term GP on the same subject, pretty convincing to me that they aren't going to help me if I took them. All in all, I believe in being a compliant patient, unless there is something really, really, obviously wrong with the picture."

November 17, 2009: "Today the pain gods were fairly decent until about an hour before I went to the clinic. This session drug on for about 35 minutes. And boy, when that 7th position was done, I felt a strong searing burning right at the exit of the SP catheter. Not a mild hurt, felt like someone stuck a hot nail the size of pencil where it comes out. Took both operators to help me back up on my feet. They had the nurse look at it, but of course, there is nothing to be seen on the outside. I am sure that it is just the aftermath of another good dose of radiation in a sensitive area."

November 18, 2009: "Todays was a 45 minute affair. Back to alignment issues. I went in very sore from the burning at my SP exit hole from yesterday, so I didn't expect todays to be easy. And it wasn't. If you like my fractions, today made 11/13th completion, 6 more to go. Met with my rad. onclogist today. She is already planning my post radiation time. She is reccomending to leave the SP catheter in place until early January. She said that even when the radiation stops the end of next week, it will continue to burn and cause swelling for 3 to 5 weeks after. She will talk to my urologist and suggest that he waits for any attempt at dialtion of my bladder neck till mabe mid-January.... She examined me closely, and still puzzled why I have so much burning pain with both my penis and the SP catheter site. She thinks it isnt the result of "scattering" but the result of hyper-sensitivity to radiation. She said she has some patients that have to abort radiation because of side effects, but they are the rare ones."

November 20, 2009: "Today's session was a 35 minute one. When they pulled the little self-adhesive sticker things off of me (used on top of the tattoos for alignment) they burned and hurt, my skin was that tender to the touch. And the usual burning pain at the SP exit. Had trouble walking without pain while I was dressing, and then had a huge painful spasm attack in the men's room before leaving."

November 23, 2009: "Saw my radiation oncologist after .... She still wants me to keep the SP catheter in at least through the end of December, as she is anticipating additional swelling even after the SRT ends. Even being a Monday, there was considerable burning where the tube exits, doesn't feel real good. She is still really puzzled why I am having so much penis pain associated with the SRT. She said she can't figure out that part, and knows its complicates my situation. Her only guess, is that my body is just that sensitive to radiation in general, and other areas are getting a "scattering" effect that most people wouldn't feel."

November 24, 2009: "My complications were not entirely unexpected. Like my dr. said. she had never radiated anyone with an SP catheter in place. And she planned my treatments based on past performance of my hyper sensitivity to radiation in general. I feel she did a great job, the staff there has been very sincerly caring. You can probably tell from my posts, I am not into the blame game like some folks are. The complications I have encountered in my PC journey, definitely been a few, lol, I dont blame on my uro/surgeon, my gp, or the radiation doctor. Its because I am David Riley, and must be an odd duck and my body has its own quirks. No one to blame, just thankful my current medical staff is in tune with me, my feelings and my pain. And none of them ever rush me when we meet."

November 25, 2009: "Today was my 38th, one more to go. Experienced the most pain yet, in all 7 zapping positions, the SP tube and area, as well as my penis and rectal areas burned with pain. I almost signaled them to abort in mid-stream, but decided to eat the hurt and get through with it. Was a 25 minute session today. Couldn't even get my feet raised out of the body mould by myself. Took both techs to get me out of it, and seated up right again. I swear, had enough."

November 27, 2009: "Friday 1000 - completed the final and 39th radiation treatment. Took 25 minutes. Severe burning again at SP site, had to be helped up again."

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 2/4/2011 8:35 PM (GMT -6)   
thanks, zen

i had copied and pasted some of this myself, but this is in a much neater format to use. i will put it to good use

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 marg
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 11/10 Not taking it
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 9/23/10

English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2215
   Posted 2/5/2011 3:20 AM (GMT -6)   
Not icy here, but at home sitting at the laptop anyway and found this article that raises more questions:

www.nytimes.com/2010/01/24/health/24radiation.html?_r=1

Alf
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