Best care: local, national specialist or cancer institute?

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tarhoosier
Regular Member


Date Joined Mar 2010
Total Posts : 486
   Posted 8/14/2010 8:20 AM (GMT -6)   
This is a take from the ploidy conversation below. I base my beliefs on my experience, that of other men I have learned from in my support group, a few visits with fellow brothers at local and national centers and much research and reading online. The best care for men with prostate cancer depends on the stage of the disease. For primary treatment with curative intent and low risk to medium risk disease, a local person, well recommended, supported by second opinion may be all that is needed. A cancer center may certainly be as good or better, if one is convenient and the assigned surgeon/radiologist is considerate and generous in consultation time.
The treatment choices at this stage overlap frequently. The best choice in a single facility for all of the options is likely to be a cancer center/institution.
For those with high risk disease the local urologist is less helpful. Radiology consultations will (should) be involved, the risks become greater for surgery at this point and a unified hospital/teaching center/research institute/treatment specialist may be the better choice. National Cancer Centers, internationally recognized centers, specialists of international renown all fit here.
For men with recurrent disease the situation shifts. They will be seen in a local urologist's office with kidney stone patients, vasectomies, ED, weak bladder and all the rest. Focus and attention to the patient and his issues and concerns will undoubtedly be diverted by the daily need to be widely competent rather than responding to specific patient needs. Local uros will be the least likely to consider anything outside the most historic path of treatment. Here is where the well known prostate cancer specialist, in private practice can work his best. He should treat the whole patient, consider individual needs, tailor treatment, respond to concerns outside of office visits by email and phone, and generally meet physical and emotional needs. Evidence, though not necessarily proof, is sufficient for private specialists to recommend a treatment. The national centers will regard treatment options limited to those supported by proof, a narrow target. Despite their best intentions, research centers will be tempted to see men as research subjects and data points rather than people.
Once the patient progresses to the stage that will require experimental treatment then the national centers come into play. The rigid treatment guidelines, strict entry requirements and low cost of treatment on trials clearly show that the patient is serving the institution.

Post Edited (tarhoosier) : 8/14/2010 8:23:46 AM (GMT-6)


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 8/14/2010 8:30 AM (GMT -6)   
I can agree with your synopsis.

I would just make the the point that they are not mutually exclusive. I use my local guy for routine support, medication scripts, testing, etc. I use Cleveland Clinic for the heavy lifting, like surgery, etc. They just have a lot more experience than my local guy.

I know some local guys are put off by that approach, but I have found a local group that has no problem with it.
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10,  9 month PSA < .01
1 year psa (364 days) .01
15 month PSA <.01

Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3741
   Posted 8/14/2010 9:08 AM (GMT -6)   
I have often wondered how insurance company reimbursement policies for different types of treatment effect the recommendations of doctors who perform those treatments....
Age today: 68. Married, 6', 215 pounds, active, no health issues.
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 at age 66 9.0 DRE "normal", BPH, Finesteride. (Proscar)
PSA at age 67 4.5 DRE "normal" second biopsy, negative.
PSA at age 67.5 5.6, DRE "normal" U-doc worried..
PSA at age 68, 7.0, third 12 core biopsy positive for cancer in 4 cores, 3 cores Gleason 6, one core Gleason 9. Finesteride discontinued, still no urinary symptoms, never had any..From age 55 to 65 I had no health insurance.

I have a date with the robo surgeon on Sept 3 but I'm keeping my options open. I'm also looking at seeds combined with IGRT which seems to be having good results with high-risk patients..

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4223
   Posted 8/14/2010 10:27 AM (GMT -6)   
Here is how I would rank it:
Low risk primary treatment: Local and national are equal. 2nd opinion from Private Specialist.
High Risk Primary Treatment: National Center; 2nd opinion by Private Specialist
Reoccurrance: Private Specialists, National Centers
Advanced PC: Private Specialists, National Centers.

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


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4223
   Posted 8/14/2010 10:50 AM (GMT -6)   
Guys,
Referring the the discussion we were carrying on about HT and centers of excellence: Please don't misread what I was saying. I was not implying that there are no excellent oncologists at the major centers or that if you go there you will not get good care. Treatment with HT is very doctor dependent and if you go to a center of excellence you can get a wide range of doctors with varying knowledge and skill. I think your best chance of getting a good doctor is going to a private practice oncologist who has an excellent reputation in treating advanced PC. Many patients go to a center of excellence automatically thinking that this is the best option available and it probably is for surgery and for other types of cancers, but may not hold true for advanced PC.
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


BB_Fan
Veteran Member


Date Joined Jan 2010
Total Posts : 1011
   Posted 8/14/2010 10:55 AM (GMT -6)   
I guess that I agree with John T's ranking, except that I don't think that a low risk individual needs to see a private specialist. If they want to they may have trouble getting an appointment.
Dx with PC Dec 2008 at 56, PSA 3.4


Biopsy: T1c, Geason 7 (3+4) - 8 cores taken with 4 positive for PCa, 30% of all 4 cores.

Robotic Surgery March 2009 Hartford Hospital, Dr Wagner
Pathology Report: T2c, Geason 8, organ confined, negitive margins, lymph nodes negitive - tumor volume 9%
nerves spared, no negitive side effects of surgery

One night in hospital, back to work in 3 weeks

psa Jun 09 <.01
psa Oct 09 <.01
psa Jan 10 .07 re-test one week later .05
psa Mar 10 .28 re-test two weeks later .31
psa May 10 .50

April 10 MRI and Bone Scan show lesion on lower spine, false positive.

Started HT 5/25/10 with 3 month shot of Trelstar. SRT scheduled for late July

psa July 10 <.01 HT at work

Postop
Regular Member


Date Joined Feb 2010
Total Posts : 385
   Posted 8/14/2010 12:08 PM (GMT -6)   
I don't think you can rank these. It always depends on the individual. There are advantages of individual practitioners, large clinics, and Universities:

Individual practitioners:
Advantages:
The best can be well organized, and very patient oriented. Can be a more pleasant experience. There are some great doctors in private practice.
Disadvantages:
May not take your insurance
Working alone with less daily interaction with other doctors means less opportunities to learn from other people in the field. If a doctor has weakness in his/her knowledge, may make the same errors over and over for their entire career
The are running a business; they make much more money from procedures than from office visits.

Large clinics (e.g. Mayo, Cleveland Clinic, Barrow):
Advantages:
The best are well organized and patient oriented
Interaction and support on a daily basis with other doctors encourages life long learning and continuous improvement
If the doctors are on salary, their decisions are less likely to be influenced by the profit motive.
Disadvantages:
May not take your insurance
Larger, may be more intimidating for patient
Just because your doctor works at a famous place doesn't mean he/she is good, but famous places are more likely to have the opportunity to hire the best doctors.

University
Advantages:
Developing new treatments is their business
Take most insurance, including Medicare/Medicaid. Medicare helps pay for the salary of the residents, so universities have to take Medicare.
Interaction and support from other doctors fosters continuous learning and improvement in the doctor's knowledge
The doctors are usually on salary, so their decisions are less likely to be influenced by the profit motive.
Doctors join university faculty because they are more interested in the work than the money. They chose to make less money than they could in private practice, because they have other motives in life.
You could be asked to participate in research. If you don't like that, you just say no, and they are required to treat you just the same.
Disadvantages:
Larger, less user friendly environment
Some doctors are not patient oriented, don't spend as much time talking to patients
Just because your doctor works at a famous place doesn't mean he/she is good, but presumably Universities only ask their best residents to stay and join the faculty instead of going into practice.
There are residents around, and they will be involved in your treatment.

Arno
Regular Member


Date Joined Apr 2010
Total Posts : 54
   Posted 8/14/2010 1:16 PM (GMT -6)   
Postop said...


Individual practitioners:
Advantages:
The best can be well organized, and very patient oriented. Can be a more pleasant experience. There are some great doctors in private practice.
Disadvantages:
May not take your insurance
Working alone with less daily interaction with other doctors means less opportunities to learn from other people in the field. If a doctor has weakness in his/her knowledge, may make the same errors over and over for their entire career
The are running a business; they make much more money from procedures than from office visits.


So how costly would this be ? I know they charge $750 per hour. But a 4 months treatment by dr Leibowitz, how much would that amount to ?
March'06: PSA 3.6
Diagnosed at age 63 Sep'09: PSA 575, GS 7 (4+3)
3 positive cores in 6
Bone scan: as a fully lit christmas tree
With Zoladex+150mg Casodex PSA <0.1
Additionally 4-weekly Zometa (zoledronin acid)
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