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Consultation on prostate cancer in the SF Bay Area

rch
Posts: 79
Joined: Nov 2011

Hi
I'm a new member with prostate ca diagnosis Nov 2011. Member Kaiser . Age 66 PSA 3.8, 1 out of 12 core positive, 0.25mm fous on one core 3+3 Gleason, Normal DRE. No family history. I would like to get a second opinion on the path slides and also with a Urologist in the SF bay area? any suggestions? Also, what would be the COST for the second opinions? I have to pay it out of pocket myself. Any suggestions welcome. Thanks

Beau2
Posts: 242
Joined: Sep 2010

I was a member of Kaiser in Denver when I was diagnosed with PCa. That was about three years ago. I asked for a second opinion and they sent the slides to John Hopkins at no cost to me. I uderstand that John Hopkins or Bostwick labs are good places to send your slides to for a second opinion.

rch
Posts: 79
Joined: Nov 2011

Thanks. I just found out that Johns Hopkins charged $225 for second opinion on the slides.

rch
Posts: 79
Joined: Nov 2011

Thanks. I just found out that Johns Hopkins charges $225 for second opinion on the slides.

Swingshiftworker
Posts: 637
Joined: Mar 2010

I was a member of Kaiser when I was diagnosed w/PCa. Switched to UCSF to get the radiation treatment I wanted -- CyberKnife -- for my low risk PCa almost identical in description to yours (Stage T1c, Gleason 6, PSA 4.2, 1 out of 12 cores positive and less than 0.1mm involved).

I got my 2nd opinion from Dr. Jonathan Epstein at Johns Hopkins for around $120. Didn't trust Kaiser to do it but looks like I could have saved the $120 if I let them do it. Dr. Epstein is one of the leading pathologists in the country for the assessment of prostate cancer. You can contact him here: http://prostatecancerblog.org/?page_id=22.

As for a urologist in the SF Bay Area, what exactly are you looking for? I assume you already have a urologist who took your biopsy samples. Are you looking for someone to discuss particular treatment strategies with? If so, you need to decide which treatments you want to investigate and go from there.

FYI, I am opposed to surgery for low risk PCa, which is what you have. There are way too many risks and not enough benefits for resorting to surgery for low risk PCa. This is particularly important if you are paying out of pocket because many men who choose surgery end up with major side effects -- notably infection, incontinence and ED -- which require additional treatment and who also discover that the surgery did not get all of the cancer and require radiation treatment on top of surgery. I spoke to several NorCal Kaiser urologist/surgeons but I would not recommend any of them -- not only because I dislike surgery as a treatment option but also because they did not have enough DaVinci experience to suit me.

If you are wondering "why not choose surgery?" read this: http://www.hifurx.com/prostate-cancer/prostate-cancer-after-effects/.

I chose CyberKnife (CK) because it is the most precise method of treating PCa w/radiation. Several men including me on this forum have chosen CK with no significant side effects -- no ED or incontinence. I had to switch from Kaiser to Blue Shield to get this treatment, even though Kaiser uses CK to treat other types of "inoperable" cancers.

If you want a consultation to discuss CK at UCSF, you can contact Dr. Alexander Gottschalk, who is the Director of CyberKnife Radiosurgery at the Helen Diller Family Comprehensive Cancer Center at UCSF: http://www.ucsfhealth.org/cgi-bin/expertDetail.cgi?doctorid=13932. The uninsured cost of a consultation w/him will be around $700, which is what I had to pay before I made the switch from Kaiser to Blue Shield.

Of course, there are other treatment options - such as brachytherapy, IMRT (intensity modulated radiation therapy), HiFU (high intensity frequency ultrasound), Proton Beam Therapy (PBT), etc. With low risk PCa, you have time and I suggest that you take the time to study and research them all. I think you will find the CK offers you the best possible "cure" with the least potential side effects for a man w/early stage PCa like you.

However, you need to decide which is best for you on your own. None of the treatments is cheap and if you're paying out of pocket you obviously need to shop around and compare treatment costs. CK is billed out at around $75k to insurance companies but out of pocket patients pay "only" around $50k. PBT is similiar but not as convenient as CK because it requires many more treatment sessions but I was quoted a lower cost -- around $35k -- when I looked into it at Loma Linda University Medical Center a couple of years ago.

Good luck!

rch
Posts: 79
Joined: Nov 2011

Thanks a lot.I'm more inclined to go with the 'active surveillance' for the time being,while exploring all the treatment options you outlined. I also heard through a thread from another Prostate cancer group that UCSF is conducting Clinical trials on AS for low risk pts. I am not sure if Kaiser pts are allowed to participate in the Study. Any thoughts??

Thanks

Swingshiftworker
Posts: 637
Joined: Mar 2010

Yes there are apparently clinical studies involving AS going on at UCSF.

Here's UCSF's brochure on the topic: http://urology.ucsf.edu/patientguides/pdf/uroOnc/ActiveSurveillance.pdf.

And, here's contact info at UCSF where you should be able to get info regarding on going clinical trials: http://urology.ucsf.edu/clinicalTrials.html

Also, here's the results of a prior study on AS conducted at UCSF: http://prostatecancerinfolink.net/2008/06/27/active-surveillance-the-ucsf-contemporary-cohort/

Are you Kaiser patient or uninsured? Kaiser's treatment options for PCa are limited to AS, brachytherapy (BT) or surgery (open or robotic). That's it. However, there's no reason why you can't also be a patient at UCSF if you want to participate in their AS program (whether it's part of a clinical trial or not). You just have to be willing to pay for it on your own.

Good luck!

bdhilton
Posts: 759
Joined: Jan 2010

The best to all

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