Where is some of the best possible cancer treatment available?

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Casey59
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Date Joined Sep 2009
Total Posts : 3172
   Posted 9/25/2010 11:16 PM (GMT -6)   

Where is some of the best possible cancer treatment available?  At the National Cancer Institute (NCI) designated Comprehensive Cancer Centers (CCC).  Today there are 41 medical centers with the CCC designation—the highest honor bestowed by the NCI.  You will undoubtedly recognize the names of the centers nearest to you, and also probably a number of others on this list. 

The CCCs network & collaborate together on many fronts, including the National Comprehensive Cancer Network Clinician’s Guidelines.  The NCCN Clinican's Guidelines for Prostate Cancer is a tool/reference that all PC patients should have access to, and can be found free online here:

http://www.jnccn.org/content/8/2/162.full.pdf

 

Here's the NCI web site:  http://cancercenters.cancer.gov/

-------------------------------------------------------------------------- 

 

Here’s the list of Comprehensive Cancer Centers in the US:

  • Maryland: Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins (Baltimore, MD)
  • North Carolina:
    • Comprehensive Cancer Center of Wake Forest University (Winston-Salem, NC)
    • Duke Comprehensive Cancer Center (Durham, NC)
    • UNC Lineberger Comprehensive Cancer Center (Chapel Hill, NC)
  • Ohio:
    • Case Comprehensive Cancer Center (Taussig Cancer Institute, Cleveland Clinic & Ireland Cancer Center, University Hospitals, Case Medical Center) (Cleveland, OH)
    • The Ohio State University Comprehensive Cancer Center (The Arthur G. James Cancer Hospital & Richard J. Solove Research Institute) (Columbus, OH)

 

 

Is very good care also found elsewhere?  Absolutely.  Will there people who feel that they had unfavorable experiences at these centers?  Absolutely.  But taking the broad view, these centers would absolutely be considered the cream of the crop.

 

 I hope that this list is useful to visitors of this thread in the future...

 

edit:  typo

Post Edited (Casey59) : 9/26/2010 8:47:26 AM (GMT-6)


Red Nighthawk
Regular Member


Date Joined Oct 2009
Total Posts : 289
   Posted 9/26/2010 3:56 AM (GMT -6)   
That is a very useful list. I forwarded it to a man I know who is just starting the journey.

Thanks

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4229
   Posted 9/26/2010 10:26 AM (GMT -6)   
Casey,
Very good list and should be made into a "sticky". For prostate cancer one shouldn't exclude some of the private practice centers in oncology and radiation, such as Myers, Scholz and Dattoli who use evidence based protocols that may be more advanced than one would get in a major cancer center which must follow older established protocols.
JT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


James C.
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Date Joined Aug 2007
Total Posts : 4462
   Posted 9/26/2010 10:34 AM (GMT -6)   
Good list. Since sticky's are rare and hard to get approved, I put this list in Alf's list of things people should know before treatment. The active links failed to transfer, but most poeple will know how to reach those centers.

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3748
   Posted 9/26/2010 11:06 AM (GMT -6)   
"Where is some of the best possible cancer treatment available? "

How do they judge that?? Like JohnT says, many smaller, more focused clinics and treatment centers achieve the same or better RESULTS..

Who sits in judgment and declares "These are the best cancer treatment centers in the U.S.??? What criteria do they use??
Age 68.
PSA at age 55: 3.5, DRE negative. Advice, "Keep an eye on it".
PSA at age 58: 4.5
PSA at age 61: 5.2
PSA at age 64: 7.5, DRE "Abnormal"
PSA at age 65: 8.5, DRE " normal", biopsy, 12 core, negative...
PSA age 66 9.0 DRE "normal", 2ed biopsy, negative, BPH, Proscar
PSA at age 67 4.5 DRE "normal"
PSA at age 68 7.0 third biopsy positive, 4 out of 12, G-6,7, 9
RRP performed Sept 3 2010

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 9/26/2010 11:18 AM (GMT -6)   
Fairwind, your use of the term 'sits in judgement and declares' is provocative and another in a series of words and phrases used by you in your posting history here when a more tactful approach might apply. As to your question, the list is made up by the National Cancer Institute, probably the most well known, established and recognized organization for Cancer research and information. Centers listed are certified only after a long, exhaustive, and detailed application and examination process. Thse centers are the 'cream of the crop', so to speak and are the basis of a list that should be considered by any cancer patient, new or survivor.

Is the purpose of your question one of confrontation or one of seeking valid answers to a question? If seeking valid answers, you might want to consider your use of some of the words you use when interacting with others here.
James C. Age 63
Gonna Make Myself A Better Man tinyurl.com/28e8qcg
4/07: PSA 7.6, 7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS6
9/07: Nerve Sparing open RRP, Path: pT2c, 110 gms., all clear except:
Probable microscopic involvement of the left apical margin -GS6
3 Years: PSA's .04 each test until 04/10-.06, 09/10-.09- Uh-Oh
ED continues: Bimix .30cc & Trimix .15cc PRN

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3748
   Posted 9/26/2010 12:15 PM (GMT -6)   
Let me put it this way...Do the patients who are treated by these "centers of excellence" fare any better than those who are treated by smaller, more focused treatment facilities? Most cities of any size have cancer treatment centers that treat the majority of cancer patients..Are these unfortunate people receiving inferior treatment??? Will they live longer if they travel to MD Anderson, Sloan-Kettering, Dana Farber??

I'm not trolling this board looking for arguments..Sometimes people need to question accepted practice and my choice of words is designed to spark this questioning, not anger, belittle or insult..

English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2215
   Posted 9/26/2010 1:44 PM (GMT -6)   
Casey & James

What a good idea of James's to add this list to my sticky thread at the top of the page
I was interested that when James added it, that the active links did not copy, perhaps a solution could be that you (Casey) might be willing to add your original post to the sticky thread as well, so that the active links were indeed available there. (And if that did happen successfully, then James's post on the sticky thread could be edited to avoid duplication.)

Alf

Post Edited (English Alf) : 9/26/2010 1:47:40 PM (GMT-6)


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 9/26/2010 2:42 PM (GMT -6)   
Alf, if Casey doesn't have the time to do it, I will work on it as I get time...
James C. Age 63
Gonna Make Myself A Better Man tinyurl.com/28e8qcg
4/07: PSA 7.6, 7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS6
9/07: Nerve Sparing open RRP, Path: pT2c, 110 gms., all clear except:
Probable microscopic involvement of the left apical margin -GS6
3 Years: PSA's .04 each test until 04/10-.06, 09/10-.09- Uh-Oh
ED continues: Bimix .30cc & Trimix .15cc PRN

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4229
   Posted 9/26/2010 6:10 PM (GMT -6)   
Fairwind,
There was a study published a few years ago that pointed out that patients with a low grade pc had equal results if treated in a community setting as opposed to a major cancer center. When a patient had a high grade gleason the results from a major center significantly exceeded that of the community centers. It was a study posted on The New Prostate Cancer Info link about a year ago.
I believe that for advanced PC a handful of private practice oncologists are more effective than the large centers because they can use different protocols that may not yet be approved or even know of at the major centers. Many knowledgeble long term survivors with advanced PC have posted to this after experience with both.
JT

64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 9/26/2010 6:13 PM (GMT -6)   
great post thanks for sharing.

peace to you
Dale
My PSA at diagnosis was 16.3
age 47 (current)

http://www.caringbridge.org/visit/dalechildress

My gleason score from prostate was 4+5=9 and from the lymph nodes (3 positive) was 4+4=8
I had 44 IMRT's
I was on Lupron, Casodex, and Avodart for two years with my last shot March 2009. I am currently (7-22-2010) not on any medication.
My Oncology hospital is The Cancer Treatment Center of America in Zion IL
PSA July of 2007 was 16.4
PSA May of 2008 was.11
PSA July 24th, 2008 is 0.04
PSA Dec 16th, 2008 is .016
PSA Mar 30th, 2009 is .02
PSA July 28th 2009 is .01
PSA OCt 15th 2009 is .11
PSA Jan 15th 2010 is .13
PSA April 16th of 2010 is .16
PSA July 22nd of 2010 is .71
Testosterone keeps rising, the current number is 156, up from 57 in May

T level dropped to 37 Mar 30th, 2009
cancer in 4 of 6 cores
92%
80%
37%
28%

Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 9/27/2010 12:06 PM (GMT -6)   

What added value is there is choosing a Comprehensive Cancer Center (CCC), or an expert dedicated to prostate cancer (in our case, for example) treatments in private practice? 

 

While the US indeed has some of the best cancer care in the world, there are clear disparities in cancer diagnosis and treatments documented in a report last year between the top cancer centers and the community settings (local hospitals and generalists in private practice).  [Note that this report was not prostate cancer-specific; it addressed all cancers, but some prostate cancer examples were given.]  First, in order to tee-up the heart of the comparison, consider the two opposite ends of the spectrum:

 

On the one end of the spectrum, some tumors are so non-threatening and their treatment so standard, that it shouldn’t (and doesn’t) matter where you go…your chances are pretty good either way.  For common cancers such as prostate, breast, and colon, the surgery can be very well done in non-CCC settings and the survival rates are comparable to those at the elite cancer centers.  Five years after the nine most common cancer surgeries, the study reported 62% of the patients treated at the CCC centers were alive, compared to 58% at the community hospitals…a difference, but not a huge difference. 

 

On the other end, against some cancers, even the top medical wizards are helpless.  Ted Kennedy’s case of glioblastoma was referenced; he lived 15 months after his diagnosis despite treatment at the Duke University CCC, just slightly over the median survival period.

 

 

What about the millions of cancers cases in the middle—those that are neither hopeless nor straightforward (or as straightforward as cancer can be)?  Here is where differences in outcomes based on where you are treated were most noteworthy.  Fox Chase Cancer Center (in Philadelphia, a CCC facility) provided this data, for example, on the five-year survival of stage-4 prostate cancer patients which highlights the differences:  71% at Fox Chase versus 38% nationwide average.

 

The quality-of-care differences found in the study were, interestingly, not related to who has the newest, coolest multi-million dollar machine, in which case one could forgive small community hospitals for lagging behind.  Instead, it comes down to such basics as experience; to getting the correct diagnosis; to whether doctors address holistic aspects of diet, exercise, and psychological health; to whether doctors routinely test tumors for molecular markers that can guide therapy; to whether multi-disciplinary care is coordinated or haphazard; to how well doctors monitor patients (after surgery, radiation, or chemical treatment) in order to minimize the chance that the cancer will recur.  Examples were provided in the report, three of which I will bullet here:

 

·         Prostate cancer patients already know the importance of expert biopsy pathology readings.  The physician-in-chief at MD Anderson (CCC site) estimated that patients traveling to Anderson have an incorrect diagnosis from a community pathologist about 5 to 10 percent of the time.  Clinically important diagnostic errors can lead to improper or incomplete treatment.  From my personal experience, although I had an initial biopsy reading from Bostwick (known expertise in prostate pathology), when I moved from my local urology generalist who diagnosed me to a CCC my slides were re-read for confirmation at the CCC pathology lab.

·         Another rule that we prostate patients also already know about surgery is to select experienced surgeons.  Outcomes for complex surgeries have significantly disparities between top cancer centers and community hospital settings.  For tough surgeries, you want the doctor who’s been around the block, so to speak; surgeons at the top centers have generally sharpened their teeth elsewhere first.  Furthermore, length of stay and rate of surgical complications are lower at the top centers versus community settings.

·         It was interesting (to me, this was one of the most interesting aspects) how the report characterized a general difference between the approaches of oncologists in the two settings.  Doctors in the community setting (generally) report that there is a lot of art in the treatment of cancer, whereas oncologists at top centers say it’s a science.  “Art” might sound desirable and even personal—my oncologist isn’t blindly following a recipe in treating me!—but it covers a lot of sins, notably the tendency of some doctors to pick treatments that worked for other patients, even though those results might have been statistical flukes.  The “recipes” are well established (see the link to the NCCN Clinican's Guidelines for Prostate Cancer in the original posting) by the National Comprehensive Cancer Network (NCCN). 

 

The third bullet (above) notwithstanding, the top cancer centers were also found to have a much stronger ethic of trying anything and everything when cases turn desperate.  The report highlights that this aspect does not show up in five-year survival data, but can make a huge difference to a patient who gets to celebrate one more wedding anniversary or the birth of a grandchild.

 

 

After this report was published last year, the National Cancer Institute (NCI) launched a quality improvement program to help raise the bar at the community cancer center programs.  Here’s a link outlining the program:  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2764567/

 

The Association of Community Cancer Centers (ACCC) has also responded (following “encouragement” by the federal government, insurance providers, and medical specialty societies) with a training & education program directed at improving adherence to Clinical Practice Guidelines.  See here:  http://accc-cancer.org/education/education-guidelines.asp

 

 

Now, when your friend tells you they have been newly diagnosed with cancer, you can now point out that while the local community hospital might go a great job of making them feel welcomed and well “cared for”, and they will probably have good results, you now understand why they should consider one of the NCI-designated Comprehensive Cancer Centers for the best possible results.

 

Once again, I should repeat my closing note from the original post in this thread; I’ll simply copy/paste:

Is very good care also found elsewhere [i.e., in community hospital settings or at private generalists]?  Absolutely.  Will there be people who feel that they had unfavorable experiences at these centers [the CCCs]?  Absolutely.  But taking the broad view, these centers [the CCCs and the private expert specialists] would absolutely be considered the cream of the crop.

 

 

Post Edited (Casey59) : 9/27/2010 2:18:18 PM (GMT-6)


Casey59
Veteran Member


Date Joined Sep 2009
Total Posts : 3172
   Posted 9/28/2010 4:43 PM (GMT -6)   
Fairwind said...
Let me put it this way...Do the patients who are treated by these "centers of excellence" fare any better than those who are treated by smaller, more focused treatment facilities? Most cities of any size have cancer treatment centers that treat the majority of cancer patients..Are these unfortunate people receiving inferior treatment??? Will they live longer if they travel to MD Anderson, Sloan-Kettering, Dana Farber??

Since you phrased it that way, basically "yes", "yes" and "yes" when taken in aggregate.  See my last post for details...
 
 
 
 
 

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3748
   Posted 9/28/2010 5:11 PM (GMT -6)   
"Centers Of Excellence"????

Here is just a small excerpt from the fall-out when Provenge was first rejected by the FDA..the link at the bottom will bring up the entire sordid mess..

"The lengthily trail of conflicts of interest that lead to the gang who succeeded in stopping the approval of Provenge is easy to track on the internet. The top recipients of cancer research funding in the US include Dr Pazdur's previous employer of 11 years, the MD Anderson Cancer Center at the University of Texas, along with Dr Scher's employer, the Memorial Sloan-Kettering Cancer Center, and Dr Hussain's Cancer Center at the University of Michigan.

Prior to his appointment as leader of the National Cancer Institute in 2001, the current FDA Commissioner, Dr von Eschenbach, was executive vice president and director of prostate cancer research at the MD Anderson Cancer Center.

Before Dr Pazdur and Dr von Eschenbach left MD Anderson, Dr John Mendelsohn was their boss as President of the Center Dr Mendelsohn in fact, is said to be the guy who recommended Dr von Eschenbach to Bush for the top position at the National Cancer Institute.

At the same time, Dr Mendelsohn was also a member of ImClone's board of directors and a board member at Enron, another infamous firm that was busted for insider trading around the same time as ImClone.

Congress held hearings on the ImClone debacle in June and October of 2002, and during testimony, it came out that Dr Mendelsohn had made over $6 million in 2001 by selling ImClone stock without informing cancer patients enrolled in clinical trials at MD Anderson that he was a major stockholder in the company that would benefit from the trials."

www.lawyersandsettlements.com/articles/01644/provenge-appeal.html
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