Selecting an Oncologist

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TryingToStayCalm
Regular Member


Date Joined Aug 2010
Total Posts : 53
   Posted 9/13/2010 10:49 AM (GMT -6)   
Ok, so I apologize in advance if this question sounds simple but ...
 
We are at the point now in our recovery where we are looking to choose a medical oncologist for follow up treatment for a very aggressive PC based on the path reports after Robotic Surgery.
 
My gut tells me to go to Sloan Kettering to someoone I have heard will "tell it like it is" and "save his life". My gut tells me to get Sloan to re-read the slides to be sure we are dealing with what we think we are. Sloan is a good hour and a half from our home. This is not where we would want to do our treatment. Not when Robert Wood Johnson in New Brunswick, NJ is nearby and has a Cancer center of excellence. We also have a recommendation from the local Uro there.
 
Based on your experience or thoughts should we go to Sloan to get advice and will they understand if we do not want to come into NYC to get the treatment done? Will they have someone to recommend more locally? Or, do we go directly to RWJ in NJ to start?
 
We are at odds about this because this is his life we are talking about. And, we want to work within the medical community and the protocol they are used to.
 
Any ideas? Thoughts? Experiences? Thanks in advance.
Judy
Husband DX on 6/30. Age 56. PSA b/fore surg. 7.9. Biopsy 6/12 positive 5=50%/90%, 1/10%. PNI present. Gleason 7 (3+4). Robotic RP Mt Sinai. NYC. 8/26. POST SURGERY PATH: Extensive bilateral involvement. Gleason 7 (4+3) w/ some 5 patterns. 70% of slides contain tumor. 42g. Extends beyond capsule into tissue and left seminole vesicle. Extensive Intra & Extra prostatic PNI w/tumor. Lymphs neg. pT3b

Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 9/13/2010 11:27 AM (GMT -6)   
Are you aware that MSK has a facility in Basking Ridge?

BobCape
Regular Member


Date Joined Jun 2010
Total Posts : 416
   Posted 9/13/2010 11:44 AM (GMT -6)   
My pathology is similar to your husband's. I was diagnosed in March by a capable urologist here on Cape Cod. Cape Cod Hospital does not have Robotic, so I went to a well experienced uro in using robotic in Boston to have the operation. I had Robotic RP in May.. Post operation meeting with uro it was HE who suggested that the 1.5+- hour drive from Cape Cod to Boston every day for Radiation didn't make sense. He referred me to HIS Uro Oncologist for a chat, and they ALSO agreed I would be better served havign the radiation closer to home. I went back to CC Hospital and am dealing with a very good radiation oncologist who actually agreed with me about holding off for more time before (or even if) I shoud have radiation, so I could better hear. During EVERY step of the food chain, Everyone involved fully understood that I was making difficult decisions that werent not to be construed as insults to anyone along the one. The bottom line, in my case, since the machinery was state of the art and my radiation oncologists is known to be very good here on Cape, why put myself through 3 hours a day, 21 hours a week of driving, when it wasn't needed. The urologist who did my robotic surgery wasn't going to administer the radiation anyway,, and it was HE who suggested that I check out the Cape before agreeing to use the rad onc from his own hospital. Hope that makes sense. Best of luck to you!
First ever PSA test Jan 2010 @ 51 years old. 4.0.
Digital exam in March 2010 showed 1 side hard, other soft.
Biopsy, positive in 3 of 12.
Davinci @ Boston Medical Center, May 17, 2010.
Was suggested prior to it was likely contained.
June 1 advised 3+-4 was really 4+3 per pathology. Pos margins.
Listed on patholgy as PT3, but with extraprostatic extension,
microscopic invasion of the bladder neck, PT3A is perhaps the case.
Catheter removed June 1.. 1 pad/day, doing ok. ED, but not in rush.
Sore as heck down there, but doing much walking with my wife.
To meet with my Uri (1st meeting since) June 17 - 1 mo point, to discuss.
BMC already has me setup to meet with radiology.
Felling a little better each day. Cant tell if my expectancy just went from 10-15 down to 5-7, the information out there appears to be all over the place. I WILL NOT radiate my insides to the point of being a veg for the sake of a few years. QOL is primary to me. Selfish I guess. I pray for all of you as I do for myself, but must remember that i've had a pretty good 50+ years, and know others who have lost their children to disease.. so I dont have the nerve to complain! Update 7/14/2010: When I tried changing this sig a few days after creating it, system was broken. My new rad oncologist are discussing IMRT.. though he says he can see why waiting a bit and watching the PSA on super sensitive basis might make sense. I am leaning towards IMRT.. thinking is my body is pretty strong now, i'm 51, and if I can rid my body of this while trying to minimize the side effects.. I dunno. No really Good answers. When I said I didnt want radiation to the point of being a veg.. I really meant there is a limit as to where I wish to go in order to realize only a small increase in life expectancy.. and not that I am an unreasonable person. I do, after all, have an obligation to my wife and kids.

Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4274
   Posted 9/13/2010 12:20 PM (GMT -6)   

Judy, if it was me or my brother I would be seeking out not just a medical onlcologist but one who specialized in prostate cancer.  There is a list of some of these guys in the back of Scholz' recent book.  In any case maybe there is such a doc in New Brunswick, maybe not.  My trip would probably be to one at Sloan-Kettering at least at this stage.

Tudpock (Jim)


Age 62 (64 now), G 3 + 4 = 7, T1C, PSA 4.2, 2/16 cancerous, 27cc. Brachytherapy 12/9/08. 73 Iodine-125 seeds. Procedure went great, catheter out before I went home, only minor discomfort. Everything continues to function normally as of 9/10/10. 6 month PSA 1.4, 1 year PSA at 1.0. My docs are "delighted"! My journey:
http://www.healingwell.com/community/default.aspx?f=35&m=1305643

John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4268
   Posted 9/13/2010 12:23 PM (GMT -6)   
There is a list of medical oncologists that specialize in prostate cancer in the appendix of "Invasion of the Prostate Snatchers" by Dr Mark Scholz. All medical oncologists are not alike, and getting one who specializes in PC and not other cancers is what you should be looking at.
JohnT

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


TryingToStayCalm
Regular Member


Date Joined Aug 2010
Total Posts : 53
   Posted 9/13/2010 12:48 PM (GMT -6)   
Thanks much, all! I didn't mention but both people at both Sloan and Robert Wood are medical oncologists who specialize in prostate/genitourinary cancers.

Gordy, We will look at Basking Ridge but that is also over an hour and fifteen.

Jim and John, We will absolutely take a look at Dr. Scholz's book.

Bob I guess I had a feeling they wouldn't take it personally and would understand the best course of action for a patient is the one they can do most comfortably.

We are shooting for making the decision tomorrow and calling to get an appt. Thanks.
Judy
Husband DX on 6/30. Age 56. PSA b/fore surg. 7.9. Biopsy 6/12 positive 5=50%/90%, 1/10%. PNI present. Gleason 7 (3+4). Robotic RP Mt Sinai. NYC. 8/26. POST SURGERY PATH: Extensive bilateral involvement. Gleason 7 (4+3) w/ some 5 patterns. 70% of slides contain tumor. 42g. Extends beyond capsule into tissue and left seminole vesicle. Extensive Intra & Extra prostatic PNI w/tumor. Lymphs neg. pT3b

F8
Veteran Member


Date Joined Feb 2010
Total Posts : 3989
   Posted 9/13/2010 1:02 PM (GMT -6)   

john and bob --  how are you guys getting away with the war and peace signatures?  i thought the limit was 400 characters cool ?

F8


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 9/13/2010 1:23 PM (GMT -6)   
F8,
You can blame me as a moderator. When the change came down to limit the signature sizes, it was not forced on those who had already long signatures. Instead it was preventing any new long signatures. We were asked as moderators to help get these limits in place, but their is still consideration to reconsider the lengths. Please stand by while this consideration is still ongoing.

I would like to see John update his signature. He has had the same signature for nearly two years. But he best wait as well. I'm not certain that if he did make a change, he could keep the length...

Tony

F8
Veteran Member


Date Joined Feb 2010
Total Posts : 3989
   Posted 9/13/2010 3:53 PM (GMT -6)   

Tony -- i'm not complaining.  i just thought signatures longer than 400 character would not post.  i like the signatures and if you recall i'm for them automatically attaching or at least a link attaching.  i do believe some  could be shorter, tho there are some signatures that appear to be written in some sort of shorthand or code that i have to re-read and i'm still not sure what i'm reading  cool  .

F8 

Post Edited (F8) : 9/13/2010 4:49:58 PM (GMT-6)


NEIrish
Regular Member


Date Joined Aug 2010
Total Posts : 245
   Posted 9/13/2010 8:34 PM (GMT -6)   
Judy:  First, so sorry to hear that you're still having to find your own guide posts for your loved one's treatment.  Again, you're having to live in that confusing whirl of questions, doubts, emotions that is one of the lousiest aspects of the disease.  Truly sorry you're still going through this...
My belief with serious medical issues is  to seek out the best, period.  If you have the coverage or the ability, get the second opinions, or even the third if two are opposed.  If you believe the best is Sloan Kettering (from my reading here, many would agree with you), and right now you need more information, where is the harm in speaking with the experts there?  One or two long drives or train rides is so little in the long haul.  If your husband is the one who is balking ("we are at odds"), that's tougher, and between you and him.  But you're posting here because you need information, and the people who can give you the best medical answers are at the  best medical centers.  We left our state (a bit more than an hour's drive for us, so no big deal) to get answers and had appointments with Catalona and Walsh if my husband decided that was the route he wanted to take.  Our own surgeon admitted, after good natured prodding by me, that he would see them if his age, stats etc. were the same as my husbands.  The posters here are wonderful, and they never stop looking for their own answers.  Great good luck with finding yours...     

BB_Fan
Veteran Member


Date Joined Jan 2010
Total Posts : 1011
   Posted 9/13/2010 9:41 PM (GMT -6)   
Judy, I struggled with the same issues that you are dealing with right now. I ultimately decied that I wanted the best care reasonably possible, and I wanted to see a top medical oncologist. In am in CT and I looked at MSK, Dana Faber and Yale. I would have chosen MSK but I am in Northern CT, and it would be a 2.5-3 hour trip. I chose DF, about 1,5 hours away. I am going there daily now for SRT. Will I get a better result? Who knows? But I wanted to establish myself as a patient there. I see a medical oncologist at DF as well as a radiation oncologist. I also see DR Myer annually. I don't want to get to some point down the road and question whether I had done enough. My view, go all out now.
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
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