Where are the specialists?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Jim B
Regular Member


Date Joined Mar 2009
Total Posts : 45
   Posted 7/7/2010 9:17 AM (GMT -6)   
Does anyone know how you can find an actual prostate cancer specialist? Although happy with the treatment of my urologist and radiation oncologist, they seem to be at the extent of being able to "do" anything. It just doesn't feel right to me that I should be sitting here doing nothing when the cancer is now in my bones (although not causing any pain whatsoever). I'm hoping a specialist will "do" something besides just saying "we just aren't sure what is the best way to treat your cancer."

Thanks,

Jim B
Dx age 48 PSA 11.58
Biopsy Nov 04
4 of 6 specimens positive
gleason 4+5=9
Perineural invasion at two locations
40 radiation treatments Jan-Mar 05
PSA May 05 0.07
Aug 05 - 0.15; Feb 06- 0.92; Oct 06- 0.55; Sep 07-0.42; Mar 08-1.13 Aug 08-2.26
Nov 08-3.98; Jan 09-5.81; Apr 09-9.97; (start HT again) May 09 1.84; Aug 09 0.37; Oct 09 0.32; Dec 09 0.37
Bone scan in Nov 08- one spot in pelvic region 1.9cm with SUV of 11
Bone scan in Mar 09-two spots. Original now 2.5cm with SUV of 22 and 2nd spot less than 1cm with SUV of 7.8
Bone scan in Nov 09 - NO CHANGE WOO HOO!
PSA Dec 09 0.37: PSA April 10 1.60: PSA Jun 10 4.93


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4463
   Posted 7/7/2010 9:33 AM (GMT -6)   
Here's a starting point- a definition of what determines one:

prostatecancerinfolink.net/tips-tools/pick-prostate-cancer-specialist/

unsurprisingly, here's a good article from PCRI, with plenty of link to sources of experts:

www.prostate-cancer.org/pcricms/node/38

It's a start, anyway.
James C. Age 63
Gonna Make Myself A Better Man www.youtube.com/watch?v=a6cX61oNsRQ&feature=channel
4/07: PSA 7.6, Recheck after 4 weeks Cipro-6.7
7/07 Biopsy: 3 of 16 PCa, 5% invloved, left lobe, GS3+3=6
9/07: Nerve Sparing open RRP, 110gms, Path Report- Stg. pT2c, 110 gms., margins clear
3 Years: PSA's .04 each test since surgery, ED continues: Bimix- .3ml PRN, Trimix- .15ml PRN


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 7/7/2010 9:37 AM (GMT -6)   
I feel your pain and despair on this. You might have to travel, might as well do so. Look at and join group at www.hrpca.org (check links to join it)
Youth is wasted on the Young-(W.C. Fields)


compiler
Veteran Member


Date Joined Nov 2009
Total Posts : 7269
   Posted 7/7/2010 10:38 AM (GMT -6)   
Where are you located, Jim?
 
Isn't there a major teaching hospital or a major cancer center nearby?
 
You are correct: you need a MEDICAL ONCOLOGIST WHO SPECIALIZES IN PC.
 
Mel

63 years old . PSA-- 3/08--2.90; 8/09--4.01; 11/09--4.19 (Free PSA 24%),  after 45 days on cipro! DREs have always been normal. PCA-3 was about 75 (way above the 35 threshold). That led to:

Biopsy on 11/30/09. 5 out of 12 cores positive. Gleason 4+3. 2 cores were 3+3 (one 5% and the other 30%) on one side. On  other side:2 cores are 4+3 (5%)--1 core 3+4 (30%) no peri-neural invasion. prostate is 45 grams. Stage: T1C.  

Surgery with Dr. Menon at Ford Hospital, 1/26/10. He says all looked good. Spared nerves. Unfortunately: Pathology Report: G 4+3 (65%-35%). Cancer in 15% of gland. Lymph Nodes: Clear.  Perineural Invasion: yes. Seminal Vessical Involvement: No.  Extraprostatic Extension: yes.  Positive Margin: Yes-- focal-- 1 spot .5mm. Final Weight is 52.7 gms.  (Second opinion from Jon Epstein at Hopkins confirmed these results)

 Incontinence: joined that club-- definite leaks—1 pad/day. Night is dry, was  using 1 pad at night for security, but pretty much dispensed with that most nights. Update: no pads at night. No pads while at home, but still very uncomfortable. Use 1 pad for out-of-house activities. Suddenly got MUCH better on 3/10/10, almost overnight. Still some urgency but no pads about 90% of the time.  As of 3/12/10--completely continent! Uh...OH. As of about 3/16/10 problems with constant urgency although no pads needed--feels like an infection but none showing in urine.

Update: since late March all is well in that area. I would say 99.9% continent (a spurt here and there, maybe 5 spurts per week). As of 6/22/10, I would say I am 100% continent, but I do have (controllable) significant urgency.

First post-op PSA on 3/10/10--DRUM ROLL: 0.01 Next PSA in mid-June.

Second post-op PSA on 6/21/10--0.02--Not too bad!


don826
Veteran Member


Date Joined May 2008
Total Posts : 1010
   Posted 7/7/2010 10:55 AM (GMT -6)   
Jim, I have the same question as you. I have been looking for a medical oncologist but no luck so far. They sort of leave the PCa to the urologists. Then, to complicate matters, I am looking at moving out of the area so not likely to be a long term thing for them.

Don
Diagnosed 04/10/08 Age 58 at the time
Gleason 4 + 3
DRE palpable tumor on left side
100% of 12 cores positive for PCa range 35% to 85%
Bone scan clear and chest x ray clear
CT scan shows potential lymph node involvement in pelvic region
Started Casodex on May 2 and stopped on June 1, 2008
Two years on Lupron completed 01/2010.
Started IMRT/IGRT on July 10, 2008. 45 treatments scheduled
First 25 were full pelvic for a total dose of 45 Gray to lymph nodes.
Last 20 to prostate only. Total dose to prostate 81 Gray.
Completed IMRT/IGRT 09/11/08.
PSA 02/08 21.5 at diagnosis
PSA 07/08 .82 after 8 wks of hormones
PSA 10/08 .642 one month after completion of IMRT, 6 months hormone
PSA 03/09 .38 six months post radiation and nine months into hormones
PSA 06/09 .36 or .30 depending on who did the test
PSA 09/09 .33 one year after IMRT and 16 months into hormone
PSA 03/10 .32 18 months after IMRT Still on hormones
PSA 05/10 .42 Rising a little as the lupron wears off. Last lupron shot 01/10.
PSA 06/10 .322 Maybe the .42 reported in May was in error?


Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3887
   Posted 7/7/2010 11:05 AM (GMT -6)   
Jim, it would indeed be worth your effort to travel to one of the "Centers Of Excellence" and get a state of the art diagnosis and treatment plan..With careful planning, the cost of this is manageable. Then you will know EXACTLY where you stand and much of the uncertainty about your future will be removed.

Johns-Hopkins
MD Anderson
Dana-Farber

There are 3 or four more...It all starts with a phone call...
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 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. A "top" radiation oncologist here in Denver, equipped with the latest IMRT/IGRT/RapidArc machine says he can do better by me..

Post Edited (Fairwind) : 7/7/2010 10:11:18 AM (GMT-6)


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4271
   Posted 7/7/2010 11:13 AM (GMT -6)   

Jim:

Here is a post from earlier this year (or late last year) that I saved.  It was written by JohnT who had looked into this question in some detail.  Perhaps JT will drop in on this thread with some comments or additions.

It is extremely difficult to find a Prostate Oncologist. The PCRI website had a list and discontinued it because of of complaints from drs that were not on the list.
The only other list I found was on US TOO.
On The East Coast:
Charles Meyrs, Earlysvill Va 434 964 0212
Maria Mallarino, Sarosota Fla 941 3777 9993
Daniel Petrylak, New Yorl City. 212 305 1731
Dan Costin, white Plains NY 914 684 2779
Robert Dipaola, New Brunswick NJ 732 235 2465
William Berry, Raleigh NC. 919 781 7070.

The only Dr I have heard of that has an excellent reputation is Charles Meyrs; I don't know anything about the others.
We need a better way to find Prostate Oncologists

I guess it's just by word of mouth.
On the West Coast there is Stephen Strum in ORE, Mark Scholz, Richard Lam, and Bob Liebowitz in Los Angeles, all highly regarded.
JohnT

 
Regards,
 
Tudpock (Jim)
Age 62, Gleason 3 + 4 = 7, T1C, PSA 4.2, 2 of 16 cores cancerous, 27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 4/10/10.  6 month PSA 1.4 and now 1 year PSA at 1.0.  My docs are "delighted"!

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4268
   Posted 7/7/2010 11:54 AM (GMT -6)   
www.is-canceralliance.com, This is an organization that connects patients to top oncologists around the world. You may want to check out thier website; they do complete evaluation and testing and connect you to a doctor that specializes in you condition. Dr Strum is associated with this organization.
Also on the westcoast> Mark Scholz 310 827 7707.
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


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 7/7/2010 12:04 PM (GMT -6)   
Although the article is pretty basic, still thought it had some good info and starters on the subject:

http://prostatecancerinfolink.net/tips-tools/finding-the-medical-oncologist-who-is-right-for-you-one-specialists-opinion/
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
Latest:  7/9 cath #6 - 41 days, 8/9 2nd corr surgery, 8/9 cath #7 - 38 days, mapped  9/9, 10/1 - 3rd corr. surgery - SP cath, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12 ,Cath #11 - 21 days,  Cath #12 - 41 days, 3/2- Corr Surgery #5, Cath #13 - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, Cath #17 - 39 days, 7/2 - Corr Surgery #6, 7/2 - Caths #18 & #19


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 7/7/2010 12:13 PM (GMT -6)   
It is highly recommended that if a patient fails primary treatment (surgery, cryo, etc.) even before jumping into salvage therapie(s), you should consult a prostate oncologist, many people don't and some because they didn't think it was necessary and gee there doc never mentioned it. A second opinion on any major treatment is always wise, also good to assess from someone else, the causes for the primary gig that failed anyway.

Good weblink John.
Youth is wasted on the Young-(W.C. Fields)


BB_Fan
Veteran Member


Date Joined Jan 2010
Total Posts : 1011
   Posted 7/8/2010 1:16 PM (GMT -6)   
Jim, I agree with Zufus. After my surgery failed by Uro referred me to a radiation oncologist without even mentioning seeing a medical oncologist. I had to seek out two of my own. Called Dana Farber to schedule an appointment and made an appointment with Dr Myer based upon the recommedation that I saw here and on other sights. Calling a Center of Excellance makes a lot of sense.
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

Aril 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


Piy
Regular Member


Date Joined Mar 2010
Total Posts : 145
   Posted 7/8/2010 4:34 PM (GMT -6)   

Hi Jim B -  My husband was also diagnosed at age 48 and post-surgical pathology was Gleason 9.  You've received great advice so far, of course.  I just want to reiterate that you should do your research and find a Prostate Cancer Oncologist.  It took us a while to get our surgeon, (who performed the Robotic Prostatectomy), to refer us to an Oncologist when my husband's PSA began to rise at a fairly alarming rate post-surgery.  We live in Atlanta and were referred to an Oncologist here who "specializes in PC", which ended up being, um, less than optimal.  Although this Dr. apparently had numerous PC patients, and probably is one of best oncologists to deal with PC in our area, we found his approach to my husband's situation to be very cookie-cutter.  We did our research and my husband is currently being treated by one of the top PC oncologists in the country.   And he/we travel from Atlanta to Los Angeles to do so... it's worth it.

You will continue to get great information and support on this forum.  Don't hesitate to reach out.


Dx June 2007 - age 48
davinci RRP October 2007
75% of prostate involved
Gleason 9
Positive margin
Scans clear
No detectable mets
SRT - February 2008
PSA:
Mar '09-0.4
Jun '09-0.7
Aug '09-1.7
Feb '10-.008
Apr '10 - .007
Commenced Dr. Robt Leibowitz "Three Pronged Approach" protocol in August 2009
Completed chemo Dec 28 2009

New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, September 19, 2018 3:55 AM (GMT -6)
There are a total of 3,004,538 posts in 329,153 threads.
View Active Threads


Who's Online
This forum has 161744 registered members. Please welcome our newest member, csorthofeet.
242 Guest(s), 2 Registered Member(s) are currently online.  Details
alltheway, Subdenis