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third thoughts, more thoughts
wallyaussi
Posted: Saturday, December 04, 2010 6:02 AM
Joined: 3/22/2010
Posts: 21


It is 6 months post CK and if you read my past posts you can understand where I come from. And yes, if I did not have the continuing side effects I would not be questioning anything. But I have them !

I believe that the "need" to treat in low grade cancer levels is too aggressive and the "science" of PCa is open to many opinions and interpretations.  From the 5 opinions I got not one doctor suggested that I get retested before I have ANY treatment. Only one CK forum doctor wrote that maybe I could have waited. It makes me think that it was was financial decision to generate income. I question if my radiation oncologist treated me correctly and if I needed 5 fractions when I had such a small amount of cancer. They have done about 90 treatments for PCa. Could I have been given the option of 4 ? I question why the urologist or the RO did not prescribe tramadol for pain when I was in such misery from day one. The naproxen or the ibuprofin did nothing.  I was the one that asked for this med because a German doctor told me about it. I ask why it took 4 months before they prescribed prednisone to reduce the swelling.  I ask why they would not let me try a different alpha blocker ( uraxatral) that the one I take ( doxazosin). Are they really all the same ? I have started HBOT (hyber baric oxygen treatment) and asked why they did not suggest it. I researched this treatment and decided to start it. It is medicare approved for the late effects of radiation. It surely can not hurt my condition. 

All I am told is- "wait, it takes time". WHERE IS DR HOUSE ???

 


 


Dr. J
Posted: Saturday, December 04, 2010 7:47 AM
Joined: 10/11/2008
Posts: 1070


The four treatment fraction scheme has the same equivalent dose as the five currently in use.  More is delivered per day for one less treatment so that there would be no difference.  Giving one treatment less for a lower dose is not acceptable as the control rate would be markedly less.  As far as the various medications, there are several choices for management of each problem and it often depends on the particular treating physician as to which drug is selected.  It sounds like you have not been very satisfied with the communication with the physician and/or the facility and you should probably make them aware ofhow you feel.  I really do not believe that the treatment recommendation was based on financial motives and that CK is an excellent treatment option for early stage prostate cancer patients.  Watchful waiting/active surveillance is OK for some but many if not most patients I encounter are very uncomfortable with that approach and desire definitive treatment.  After all, you never know just exactly how long to wait...

 

Jerome J. Spunberg, M.D., FACR, FACRO
CyberKnife Center of Palm Beach
jspunberg@radiationoncologyinstitute.com
(561) 799-2828

 

Radiation Oncology Institute
10335 N. Military Trail, Suite C
Palm Beach Gardens, FL 33410
(561) 624-1717


radsrus
Posted: Saturday, December 04, 2010 11:06 AM
Joined: 10/10/2008
Posts: 4155


I totally agree with Dr. Spunberg. Few doctors make a decisioin to treat someone with prostate cancer because of financial motives. Many of us, such as myself, lived through an era where 50% of the men we saw with prostate cancer presented with metastatic disease and were dead men walking. We saw many patients with paralysis due to spinal cord compressioin. We saw men presenting with severe bleeding from the rectum or bladder from tumor encroachment with locally advanced disease. And we saw much higher death rates than are seen currently. Therefore, I admit to bias toward treatment, but it is based on an unwillingness to see men suffer the effects of advanced prostate cancer, not on financial motives.

It is unfortunate that you have had side effects. Such things are uncommon, but there is the potential of a bad result with any form of treatment, or with the choice of no treatment.


 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


Allen_E.
Posted: Saturday, December 04, 2010 12:05 PM
Joined: 8/8/2010
Posts: 540


What a nightmare you have been through! I'm so glad you spoke up for yourself and got appropriate treatment, but it's too bad you had to. As patients, we are vulnerable and scared, and it is hard to think quickly and clearly when doctors, who are busy, breeze in, bark a few things at you and breeze out, before you have a chance to think or process what was said. Kudos to you for being your own advocate. Unfortunately, we all have to be. I'm sure it helped having a daughter who is an RN. You had Gleason 7 -- that's intermediate stage disease, and a good indicator that it was time to treat instead of AS. Biopsies are not great at finding all the cancer. It might have been possible to put off treatment for a few years at most with some focal treatment (e.g., HIFU), but PC is truly focal in only 10-40% of cases. Doctors always recommend what they know and are most experienced with and comfortable with, be it drugs or treatments. Also, in a recent study, doctors seem to have a subconscious bias towards drugs sold by drug marketing reps, although they will universally deny it. They will also only recommend established protocols. This is especially true in hospitals -- it covers their and the hospital's asses. To be fair, they are established protocols because they work for most patients most of the time. Dr House is pure fiction -- if Dr. Cuddy didn't love him, he would have been fired long ago.
radsrus
Posted: Saturday, December 04, 2010 12:26 PM
Joined: 10/10/2008
Posts: 4155


 I don't think it is true that doctors pick a drug because of pharmaceutical marketing. They usually pick the things with which they are most familiar. Every drug has side effects and drug-drug interactions and dosing recommendations, and it is simply too much trouble to have to constantly look every drug that comes along and become familiar with it. Another factor is insurance coverage.

That said, it does not sound like the treatment team for wallyaussi extended themselves much in trying to take care of the problems.


 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


Allen_E.
Posted: Saturday, December 04, 2010 12:31 PM
Joined: 8/8/2010
Posts: 540


One more thought -- Get a copy of your treatment plan. I wonder if there were hot spots in the area near your bladder. Also, check the dose volume histogram for your bladder to see how sharply dose dropped off. Perhaps pay another CK doctor to look at them for anything unusual.
Allen_E.
Posted: Saturday, December 04, 2010 12:58 PM
Joined: 8/8/2010
Posts: 540


Doctors are only human. You may be interested to listen to this recent NPR broadcast: Dollars For Docs: How Pharma Money Influences Physician Prescriptions -- How To Win Doctors And Influence Prescriptions
radsrus
Posted: Saturday, December 04, 2010 3:09 PM
Joined: 10/10/2008
Posts: 4155


You can't get a copy of your treatment plan. You would have to look at a whole lot of data to answer that question, and a few printouts won't do it. I would hope that the treating team had looked at it on the computer.


 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


radsrus
Posted: Saturday, December 04, 2010 3:42 PM
Joined: 10/10/2008
Posts: 4155


There are about a million physicians in the United States. If there are 100 of these events per week in the United States, there would be about 5000 per year. That is insufficient to be even a tiny fraction of prescribing physicians.  So while the premise of the NPR report may be true, it is irrelevant in the big scheme of things. A bigger problem in the past may have been the more direct inducements to larger numbers of physicians, but those are gone. Physicians are generally not allowed to accept a free pen or stack of sticky notes. My own feeling is similar to the politician's discussion of lobbyists: "if we can't eat their steaks, drink their whiskey, and go otu with their women and then go up and vote against their bill the next day, we dont have any business being here". I think that pharmaceutical marketing to physicians plays no current role. What is more questionable is the direct marketing to patients in television ads.


 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


Allen_E.
Posted: Saturday, December 04, 2010 5:54 PM
Joined: 8/8/2010
Posts: 540


I got a copy of mine. It's a summary, of course -- not every fractional slice in every dimension. It includes stats like the locations of hot spots. It also shows the dose volume histograms for relevant structures. I can get the full computer record on DVD for a fee of $15. Patients have a right to their records. There may be some cost.
JAV
Posted: Saturday, December 04, 2010 6:42 PM
Joined: 10/29/2010
Posts: 650


I can't resist adding my two-cents about the influence drug companies have on some Dr.'s. I live in a small community in southwest Michigan about an hour north of Grand Rapids. The PLC my Dr. is part of has offices in two nearby towns. In one town there are about 15 doc's; mostly family practice, but also 3 general surgeons, one orthopod and a few ob/gyn's. In the other town there are about 4 family practice - you get the idea. A decent PLC, but not too big. Now, I am NOT exaggerating. EVERY time I am in these offices there is AT LEAST one drug rep (dealer) there. During one visit, there were THREE at one time. They regularly deliver pizza, donuts, and milkshakes to the office staff & nurses. I have personally witnessed this activity. Now why do they do this ?? Is it because they are just nice people that have a desire to be liked by others ? Or because they know their drugs are only the very best for patients ? Duh ? I think I read an article recently where a medical ethicist said these drug companies do these things because they have the desired result for their companies - greater profits. I must say I did see a note on a Dr.'s office door in another city that said "NO DRUG REPS on TUESDAY" . Apparently they must have anticipated a busy day and needed to set some limits. JAV
viperfred
Posted: Saturday, December 04, 2010 7:37 PM
Joined: 10/10/2008
Posts: 792


Hi Wally,

Your original logic was sound in my opinion. 

None of us want he have your side effect experience.  Sorry for your continued urination issues, however the urethra is at risk with all treatment options.  None of us want to suffer through advanced PCa which can be a very painful and otherwise miserable end.   

A Gleason score of 7 is a very good reason to be treated in my non-medical CK patent opinion.  The PSA change reported 1.7 to 2.7, if one year between test is another good reason to be treated.  These two indicators do not suggest low grade PCa.  In my opinion another biopsy would Zero value.  After surgery biopsies are sometimes upgraded but not down graded.  Irregularity of the prostate cells are unlikely to reverse especially with a high (>0.7ng/ml/yr) PSA velocity.

Management of present issues will bare the most fruit.  A Urologist that manages HDR Brachy therapy patient side effects may be a good place for a second opinion.  They may have more experience with Hypo-fractionation toxicity of the urethra.

Your first request to consult with an urologist and issue management seems like a weakness in the CK center and their staff.  Patients need to follow up if their request are not addressed.  Some patients do not like to bother doctors, me included.  If we have issues they need to be addressed.

Did you have a cystoscopy?  If yes what did they report?
               
 Hope your symptoms improve.
Allen_E.
Posted: Saturday, December 04, 2010 11:56 PM
Joined: 8/8/2010
Posts: 540


JAV- Here's a link to another NPR story that's speaks to your point about buying lunches for the office. They can't give out pens and pads or expensive dinners anymore, but they can do that. They also give out lots of samples. Drug Marketing On the one hand, I get that doctors need the info. On the other hand, it's very hard to get unbiased information. The FDA seldom demands that Pharma runs comparison tests to similar drugs, and sometimes there are no enforced comparable measures. For example, I tried to compare ED among the various PC treatments, and I found they all defined ED differently (there are some standard surveys, but not everyone uses them), and oddly, no one corrects for age effects over time. The NPR article states, "Most estimates place the number of physician speakers somewhere in excess of 100,000." They also say that 20% of the doctors write 80% of the prescriptions. Seems like a lot of scrips written due to Pharma influence. - Allen
radsrus
Posted: Sunday, December 05, 2010 4:37 AM
Joined: 10/10/2008
Posts: 4155


You are missing the point. You can't look at a few printed pages and determine the thing you were talking about. You would need to look at the computer and go through things slice by slice etc. I am not saying it can't be done, just that you cannot do it yourself without going to the computer.I woiuld hope that the center would be willing to go over it with the patient.


 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


radsrus
Posted: Sunday, December 05, 2010 4:47 AM
Joined: 10/10/2008
Posts: 4155


Maybe it varies from community to community. I rarely see a drug rep in our department. But it may be that the hospital has better control than a private office exercises.


 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


radsrus
Posted: Sunday, December 05, 2010 4:58 AM
Joined: 10/10/2008
Posts: 4155


We like to avoid cystoscopy if possible since the mere act of performing cystoscopy can cause further damage. Sometimes it is necessary, but usually when there is more obstruction than the irritative symptoms described.


 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


radsrus
Posted: Sunday, December 05, 2010 5:09 AM
Joined: 10/10/2008
Posts: 4155


Drug samples are a blessing for patients. You can try something without purchasing a supply for a month or more and then finding it does not work or is not tolerated. Also, we use them a lot for patients who cannot afford medications.

I am not sure I get the connection between comparing ED risks and the pharma discussion.

I have no way of knowing, but it is hard to believe that 20% of all physicians write 80% of all prescriptions.

If there are 100,000 bogus speakers, then that is still only about 10% of physicians.

I don't want to deny that pharma influences physician choices. I just want to emphasize that when you are talking about cancer medicine the choices are usually rather limited and the decisions are usually made on the basis of other factors. I don't know that I can say the same about the choice of antibiotics in the FP office, for example.

I don't want to minimize a potential or possibly even a real problem, but I don't want people in this forum to lose confidence in the prescribing by their oncologist.


 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


Dr. J
Posted: Sunday, December 05, 2010 8:08 AM
Joined: 10/11/2008
Posts: 1070


I agree.  The role of pharmaceutical reps. these days in influencing decision-making by physicians has been markedly reduced by new regulations.  I rarely getting anything at all these days except for perhaps a cheap pen, and maybe a donut or two.  Bring back the good old days!

 

Jerome J. Spunberg, M.D., FACR, FACRO
CyberKnife Center of Palm Beach
jspunberg@radiationoncologyinstitute.com
(561) 799-2828

 

Radiation Oncology Institute
10335 N. Military Trail, Suite C
Palm Beach Gardens, FL 33410
(561) 624-1717


viperfred
Posted: Sunday, December 05, 2010 10:58 AM
Joined: 10/10/2008
Posts: 792


In Wally's case it seems like optimal management of his side effects was not privided by his CK the treatment center.

Drug marketing is a big kettle of fish to fry on this forum.

Free samples benefit the patients not the doctor.  Not a perfect World, but for now CK for PCA still gets my vote.  There are many other options none without risk.

Dr. C. King has completed an update of his CK study that has been accepted for publication.    Look for it in electronic form in a couple months.  Cohort still doing well. 


JAV
Posted: Sunday, December 05, 2010 12:13 PM
Joined: 10/29/2010
Posts: 650


Dr. Spunberg : I have to compliment your honesty !!!!! (smile). If I'm ever near your facility, I'll drop off a few donuts and a latte. Do you smoke cigars ? . I wasn't meaning to impute any CK Facility or Hospital. I think the drug dealers stay clear of them, in general. I never see them in the hospital. They seem to concentrate on Dr. offices. Probably more bang for the buck there - that's where modt of the scripts are written. It just really bugs me when I see them swagger in like they own the place (without an appt.) and are taken care of immediately (including talking to the Dr. -personal observation) while I am still waiting. And any time my Dr. gives them is less time for me. Of course the Dr. is complicit. I must admit however, the free drug program for low income patients is appreciated. An older friend of ours gets her free Lipitor every month.
Allen_E.
Posted: Sunday, December 05, 2010 12:20 PM
Joined: 8/8/2010
Posts: 540


CK is an FDA approved treatment, just as medications are. Whether it's a device or a medication, the FDA requires evidence of efficacy and safety. They DON'T require comparisons to other similar medications or devices, and efficacy and safety/toxicity measures like ED are not required to be standardized, although organizations, like ASTRO and RTOG, make an attempt. Don't get me wrong -- I actually think marketing on the part of companies like Pfizer and Accuray provides a very important service for doctors and patients (this patient forum is one example), and I love getting free samples. Every time we use a device, prescribe, talk about it, give out a free sample, etc., we are increasing our commitment to it, increasing the likelihood of using it or prescribing again, and decreasing the likelihood of using or prescribing competing products. Brand loyalty arises from a very human need to believe that our actions are right and justified. We all have cognitive biases; the best we can do is be aware that we have them and make an effort to remain open to alternative ideas, beliefs, medications and devices.
viperfred
Posted: Sunday, December 05, 2010 4:39 PM
Joined: 10/10/2008
Posts: 792


Allen E.

Special interest groups like ASTRO, are part of the Good, Bad and Ugly of our dysfunctional health care system.   Objectivity, optimal patient care get lost in large markets like prostate cancer.  CK is the poster child of a dysfunctional system.  Innovation (device, drugs, etc) that lower cost will not be endorsed without major resistance.  Bias is part of human nature.  

Patients and/or their doctor(s) must advocate for optimal care.  In Wally's case the ball was dropped right after treatment (based on his post history).

FredK


wallyaussi
Posted: Monday, December 06, 2010 6:36 AM
Joined: 3/22/2010
Posts: 21


Thank you all for the thoughts and comments. I will ask the doctor at the HBOT center about the medical records they received . If they are sparse I will ask them to request more extensive records. When and if I get them I will look for another opinion. Lahey Clinic does HDR brachy and maybe that doctor will comment on my condition. I have never seen a report of any type . I was verbally informed of the biopsy results by the urologist that did the test. His lab reported a Gleason of 3+4. Dana Farber' s lab said the Gleason was 4+3. So I could be a 6 or an 8 depending on how one reads the numners. I never saw or was told about the MRI or CAT scan results.

The CK was done at Beth Israel Deaconess Hospital in Boston.

Thanks for those that agree that my follow up treatmnent was lacking. I had a 4 week post CK psa test and the RO never told me what the number was until I asked for it. I do not think that the choice of meds or lack of suggestion was financilly motivated becuase they are tier one meds. I still ask why a patient has to come up with suggestions. I kept a log of urination times and pain level and reported this to the RO. He just told me to increase the ibruprofin dose. I had no hospital urologist until I was admitted for clot blockage 5 weeks post CK. I always had painful urination. I do not know what I would have done without finally getting some pain relief.

 I finally had a cystoscopy 4 weeks after the Europe trip. The urologist had to manouver the tube past the enlarged prostate to get to the bladder. It showed no bladder problems. He then put me on an 8 day prednisone treatment. It worked for 10 days. I asked for another treatment 4 weeks later and the urologist said that the RO had to approve this. Why am I shifted between doctors ? I was put on a 4 week therapy and that worked great while I took the pills.

   My wife tells me I should have been more aggressive with my requests for information. I faxed biweekly status reports to both the RO and the urologist with questions that took 2 weeks to answer if they were answered. I would tell myself that they are super busy and that I am not an emergency. Dr House may be fictional but the need for someone like him is not.



 


Dr. J
Posted: Monday, December 06, 2010 6:59 AM
Joined: 10/11/2008
Posts: 1070


Dr. House is certainly brilliant, but he sure ain't too nice.  He wouldn't last too long in private practice around here with that attitude!  I try to emulate him, without the nastiness.  Marcus Welby from old-time TV is more the role model for kindness!



 

Jerome J. Spunberg, M.D., FACR, FACRO
CyberKnife Center of Palm Beach
jspunberg@radiationoncologyinstitute.com
(561) 799-2828

 

Radiation Oncology Institute
10335 N. Military Trail, Suite C
Palm Beach Gardens, FL 33410
(561) 624-1717


viperfred
Posted: Monday, December 06, 2010 8:29 AM
Joined: 10/10/2008
Posts: 792


Hi Wally,

Thanks for sharing you painful experience.   Get a copy of the cystoscopy for the urologist associated with HDR BT.  Very encouraging that all seemed good from this test.

The question of when should a patient get more aggressive when they are suffering is hard to answer.  Your story suggest the pain issues is best addressed immediately and as persistent as needed to be resolved.  Conversations with doctors suggest pain is something that can be managed.

I would expect that most doctors want to provide optimal care.  When patients have your experience it suggest the health care center has serious administration problems.   A letter to the CK center patient relations (copies to treating doctors) outlining you treatment experience is appropriate.

Best Wishes,

Fred


radsrus
Posted: Monday, December 06, 2010 10:09 AM
Joined: 10/10/2008
Posts: 4155


Gleason 4+3 and 3+4 are both 7. THere is some dispute as to whether they are different, with some people thinking 4+3 may be a little worse. One problem in this case is that the center may not have experience with this kind of problem. It is uncommon with CK. It is more common (in my experience) with seeds. I have never seen it with HDR, and we have done quite a bit. IF you will pardon the expression in this context, this should pass. Things that we have used with varying degrees of success are HBO, Trental, Vitamin E, and Elmiron. You are right about FDA not requiring comparison with similar treatments. I suspect that would catch them up in a never-ending war of battling studies, none of which would probably be of much real value.

 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


Allen_E.
Posted: Monday, December 06, 2010 11:06 AM
Joined: 8/8/2010
Posts: 540


Prednisone is problematic. It's great for reducing inflammation. However, it is catabolic-- it destroys healthy tissue at a time when you need healthy tissue. It also shuts down the immune system (they give it to transplant patients). The last thing you need right now is an opportunistic urinary tract infection. Dr King reports that the only two cases of late term urinary problems following CK were related to cytoscopy procedures. I'm glad you're getting a second opinion.
Chico
Posted: Monday, December 06, 2010 12:51 PM
Joined: 10/10/2008
Posts: 382


Allen,

There are some weeks when I don't check on the forum and so I know that I miss a lot of post. I don't look at all the topics in the Prostate Area unless the seem to be of a less technical nature. As such, I probably missed some threads that would have answered the following. Please accept my apology in advance for asking questions that many of the forum member already know.

I think I got a bit confused in reading some of your posts. Did you have CK or some other type of Radiation Procedure ( I am not techincal at all and have done very little research in to Cancer Drugs, Homeopathic medicine) ?. It's just that from some of your post I thought you were a CK patient or considering it, and then noticed a lot of commnents about drugs, supplements and various treatments. I may have missed where you discussed the actual procedure you had or were/are still considering. Did you  have a procedure? Have you ( or would you share your experience in terms that I Might Understand). Your comments, as Viperfreds' seem to come from an extensive knowledge base and I was wondering if it were from personal experience, education, or an interest in doing a lot of research on a condtion ( PCa) that we all share in common ( Pre/Post Treatment Experiences or consideration).

Just to give you my perspective in makeng this post,  I had CK a few years ago and read and joined the forum  when considering what treatment ( if any) I would persue.  Back then, from my viewpoint,  the discussion were a bit more about sharing CK experiences ( shock about initial dianosis, not knowing what a Gleason Score was, concern about insurance coverage, and treatments for some of the pre and post side effects of the tests and CK Procedures etc.).  I was very anxious about my condition and was considering CK ( relatively new at that time for the Medical Group in my area) and was desperate to find a source for personal experiences with the CK Procedure.  Around the time of my first questions, Viperfred and the contributing Drs would get into some of the finer details ( but very important of comparative treatment information and insurance coverage issues) while many of us dealt with many of our emotional concerns. I believe , at that time, it was more like an emotional support group that was also a great source of CK Treament Data and commentary.

I still look at the forum on a weekly basis to see how the procedures are progressing for my education. I still  might be able to contribute to someone who is seeking some type of emotional/experiental comments from a " Postie" (ck patient - post treatment).   I am far removed, however, from the

 

 

Thanks,

Chico


radsrus
Posted: Monday, December 06, 2010 4:58 PM
Joined: 10/10/2008
Posts: 4155


Once again, Chico brings us back to our roots


 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


Allen_E.
Posted: Monday, December 06, 2010 7:52 PM
Joined: 8/8/2010
Posts: 540


Hey Chico - It would be bad manners of me to kidnap this thread and make it all about me -- although what could be more fascinating, right? I'll respond to you in private.
wallyaussi
Posted: Tuesday, December 07, 2010 4:46 AM
Joined: 3/22/2010
Posts: 21


So expanded questions: Were my doctors truthfully concerned about treating the disease but after I was signed up I became a patient number ? Were my doctors too busy afterwards to give me the attention I needed ? Were they unfamiliar with my problem and did not know how to treat me ? Does the hospital need to change their treatment protocol ?

AM I REALLY THE ONLY ONE IN THIS FORUM THAT HAS HAD THESE LONG TERM SIDE EFFECTS ? 



 


Dr. J
Posted: Tuesday, December 07, 2010 4:58 AM
Joined: 10/11/2008
Posts: 1070


I can appreciate your cynicism and I sincerely hope that very few others have had a similar experience with their post-treatment care. No health care provider wants that kind of reputation. Most of us go into medical care to provide care for our patients, and we really do care for and about our patients.

 

Jerome J. Spunberg, M.D., FACR, FACRO
CyberKnife Center of Palm Beach
jspunberg@radiationoncologyinstitute.com
(561) 799-2828

 

Radiation Oncology Institute
10335 N. Military Trail, Suite C
Palm Beach Gardens, FL 33410
(561) 624-1717


radsrus
Posted: Tuesday, December 07, 2010 7:41 AM
Joined: 10/10/2008
Posts: 4155


Only you can answer the question as to the concern of your treatment team. It sounds like you already have answered the question to your own satisfaction. As to whether you are the only one with this sort of problem, the answer is no, but it is quite unusual. We have seen about 3 patients here with similar problems, one treated elsewhere. One of our patients has suffered a urethral stricture with a lot of resultant problems. We have stayed in touch with him and see him regularly (although not frequently). We went over his plan multiple times and could not identify a reason for the problem. Everyone else has eventually had the the symptoms resolve, but it usually takes several months.

 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


viperfred
Posted: Tuesday, December 07, 2010 8:14 AM
Joined: 10/10/2008
Posts: 792


Hi Wally,


Very likely your CK doctor wants to provide the best care possible.  Asking the CK doctor to make an appointment for you with a urologist has many chances to fail depending on the communication path.  CK Dr to CK Admin,  CK Admin. to Urologist Admin, Urologist Admin to Urologist Scheduler.  Communication is a major factor in job performance and satisfaction in medical centers and applies to all organizations.  Most doctors want to help us, the CK doctors I have communicated with provide exceptional patient support.      

Your condition is not common with CK, so there may be a lack of experience factor adding to your poor management.

Going forward make appointments with the urologist (or any Dr.) scheduler and confirm the appointment.  It may help to continue your own research for management of your condition.

Check your PSA every three month for at least the first 2 years post CK. 

Hopefully your issues will resolve soon. 
FredK.      


radsrus
Posted: Tuesday, December 07, 2010 10:29 AM
Joined: 10/10/2008
Posts: 4155


I am not sure I would characterize it is poor management of the symptoms, just as poor management of the relationship. They did not recommend cystoscopy, but neither would we. They did not recommend HBO, but there is no proof that it will be helpful in this situation, although I think it is a reasonable thing to do. I suspect lack of experience with this particular problem is part of what is going on.

 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


wallyaussi
Posted: Wednesday, December 08, 2010 5:43 AM
Joined: 3/22/2010
Posts: 21


thanks again for the input---It appears that my symptoms are rare so treating me was probably a new experience for both the RO and the urologist. Do doctors reach out to their community and ask- "who has experience with these long term side effects ? Any suggestions on how to treat my patient ?". Or are they too proud to ask for assistance. I think that both the relationship and the post treatment were lacking. The day before I was admitted to the ER I had called the urologist who planted the markers to get an apointment and hopefully some help. I was told that the RO had to make the call, not me. I only got a urologist at the hospital because I was admitted. As for the HBO treatment, there is a proceedure number for "late effects of radiation" so I would think that the RO would know it exists and at least tell me about it. Give me choices. I do not know if it is helping but I need to try. There are 4 or 5 other people getting treatment for radiation problems at this wound center ( a small hospital in Rhode Island) and a private chamber I called (near Boston) told me that it is a common treatment for them.

 


radsrus
Posted: Wednesday, December 08, 2010 6:11 AM
Joined: 10/10/2008
Posts: 4155


It is unlikely in most communities that anyone in the community would have experience more than the treating team since there is most commonly only a single CK in a community. Unfortunately, there is not real national way of communicating with others in your specialty. Again, you are angry at the team and it sounds like they may have fallen short in the relationship arena. But I again think that it is incorrect to say that they necessarily should have recommend HBO for this. HBO has been used most commonly for osteoradionecrosis of the jaw, less commonly for soft tissue necrosis. It is moderately effective for the jaw, perhaps less so for soft tissue. We have tried it a couple of times for the brain with mixed results. I am not making excuses for the treatment team. It sounds like they need to work on their post-treatment care relationships a bit. But with your particular problems, I think you would still be pretty unhappy if they had taken you home for dinner every night. That is natural. No one likes being miserable,m and it is natural to want to find someone who is responsible. Maybe they caused this, maybe they did everything right. I don't know. But for you, the result is the same. I am pretty confident this will all pass (pardon the pun). It usually does. But it can take months. Good luck with the HBO.

 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


Chico
Posted: Wednesday, December 08, 2010 9:50 AM
Joined: 10/10/2008
Posts: 382


Dr Medberry,

I have been reading through a number of what I consider "complicated threads" recently. I am grateful that none have applied to my treatment. I try to learn a little more about CK, just in case I am asked about recommending it as a treatment for Prostate Cancer ( I periodically get anonymous emails from  forum  members or  from patients at the  Hospital where I had my CK).

I have learned so much from your (and the other contributing Drs on this Forum) posts. I think that it's a bit ironic, that I learned a heck of a lot more about my condition ( getting explanations of different terms and meanings of differnt type scores) than I have/had from my Urologist or Oncologist. I believe, as has been often said by a number of contributors, that it is, and has been, my responsibility to research and ask quesstions from my medical providers about my condtions. For some reason I was reluctant to ask my own Urologist questions about my specific condition., and that was while I was dealing with high anxiety and making my treatment decisions.    I try to do this now ( ask more questions and attempt to get reports) when I have check ups from various medical practitioner.

 

I want to again give you , and the other contributing doctors, thanks for all the time you have spent with us ( CK FORUM MEMBERS) over the years that I have been a member of this forum. I would hate to have had to pay for the consutling fees that advice of this nature must be being charged in by various doctors and clinics.

Thank you again.

 

Chico


radsrus
Posted: Wednesday, December 08, 2010 9:51 AM
Joined: 10/10/2008
Posts: 4155


What? You did not get my bill? You are very welcome. Our pleasure.

 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


Dr. J
Posted: Thursday, December 09, 2010 4:48 AM
Joined: 10/11/2008
Posts: 1070


Ditto

 

Jerome J. Spunberg, M.D., FACR, FACRO
CyberKnife Center of Palm Beach
jspunberg@radiationoncologyinstitute.com
(561) 799-2828

 

Radiation Oncology Institute
10335 N. Military Trail, Suite C
Palm Beach Gardens, FL 33410
(561) 624-1717


wallyaussi
Posted: Friday, December 10, 2010 5:02 AM
Joined: 3/22/2010
Posts: 21


by community I meant the Cyber Knife community-that is CK centers and doctors that would communicate with each other about patients that have a situation that they are unfamiliar with. Maybe someone out there has had a patient that has suffered like I have and can add a suggestion. Information should be shared. Maybe there should be a study on how many CK patients have unusally long side effects and what they were, how long they lasted, etc. From what Dr. Medbery wrote it appears that there is no professional forum and I think that Accuray should set that up.  I would gladly pay for a consult if it could help me.

 


radsrus
Posted: Friday, December 10, 2010 6:21 AM
Joined: 10/10/2008
Posts: 4155


There is a professional forum for CK users, but not everyone participates and not much of what is there is related to side effects. It is more related to how and when to treat. I was saying there is not really a way of communicating with, for instance, all radiation oncologists. There are several studies going on regarding side effects, and they will publish results when mature.

 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


 

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