UCSF Urology

mrspjd said:

No Cal RP

Hi Jerry,

 

Welcome here. Two of the most well known & highly regarded MDs in No Cal for RP are Dr Peter Carroll @ UCSF:

http://cancer.ucsf.edu/people/profiles/carroll_peter.3595

and Dr James Brooks @ Stanford:

http://med.stanford.edu/profiles/James_Brooks/

 

If you haven't already done so, it's critical that you obtain an expert 2nd opinion pathology analysis on your biopsy specimens. This should be from a path lab that specializes in analyzing prostate Bx core samples, such as Johns Hopkins. The path lab reports, your PCa dx stats & medical history, along with the results of any medically indicated imaging tests (i.e. CT, bone scan, MRI, EMRI, etc), will be important to bring with you to any consult re PCa tx, no matter if seeing an RO for RT, a Urologist/Surgeon for RP, or an oncologist who specializes in PCa. We found this was the best way to get the maximum benefit from a medical consult. 

 

Good luck as you go forward. 

Thanks very much for your thoughtful reply. I'm hoping that UCSF has a top-notch pathologist that can look at my results. I appreciate your advice.

mrspjd said:

Marin County

You're welcome, Jerry. If Marin is anywhere within a reasonable commute for you, there is an excellent established PCa networking group that meets there. The group's facilitator is a very knowledgeable and compassionate person, a PCa Survivor himself.  He is well versed in all things "UCSF Urology/PCa."

 

I highly recommend attending a meeting. If interested, please LMK and I'll get the info to you. If not, no worries. 

I live in Reno, so Marin is not convenient.   I'm hoping now for an appointment  with Dr. Peter Carroll at UCSF for a 2nd opinion.

BTW ...  anyone have an opinion about Dr. Angelo Kanellos? ... he does robotic prostate surgery in Reno.

Thanks again.

mrspjd said:

Local PCa info & resources

Jerry,

 

I hope someone responds to your inquiry about Kanellos. While online forums may be helpful, IMHO, a good way to obtain the best local (& national) PCa info/resources (names of highly regarded PCa MDs, tx options appropriate for your PCa tumor stage, etc) is by attending a PCa networking group in your area. The PCa organization "US TOO" offers PCa meetings in hundreds of locations. Group leaders/members can be quite knowledgeable in assisting you with the local MD info you're seeking. To find a grp near Reno, check out:

http://www.ustoo.org/Chapter_NearYou.asp?country1=United States

 

In addition, you may want to consider posting the details of your PCa dx as that may elicit some responses.

 

All the best. 

No support group in Reno, but one listed in Carson City. No reply to my email to their contact so far.

thanks again to you.

J.

Double Whammy said:

Why not UC Davis?

Just askin' . .  It's closer you know.   I live in the valley and know 2 men (one in his late 40's and one in his early 60's) who had robotic surgery at UCD and suffered no nerve damage.  My dentist is one of them.  He'll tell anyone and everyone how happy he is that he is still able to "function".  TMI for me when he told me, but now that my husband has been diagnosed, that's different.  The other man is the husband of my primary care physician and a stem cell researcher.   These folks are probably better equipped to make treatment choices than someone like me.  UCD is an NCI accredited cancer center.  They also have a really strong team of prostate cancer peer navigators that you can hook up with regardless of where you receive your treatment.  These guys are dedicated and knowledgeable and I hope to convince my husband that his journey will be much easier with one of them, but he is being resistant for some reason.  Men!  Sounds like you're looking for some knowledgeable support and maybe resources and tools and that's what they do.  They're also survivors.

If you're interested in speaking with a peer navigator, PM me and I'll get you the phone numbers.  (I'm a peer navigator for breast and uterine cancer patients so I'm biased). 

 

Thanks for your message. I get so much anecdotal evidence. I've been told that my urologist here in Reno is excellent. Others have told me that I should go to some of the premier centers like UCSF or Johns Hopkins. I'm still trying to figure out what to do. 

Thanks again.

mrspjd said:

Newly diagnosed

Jerry,

 

I'm not at all surprised about the plethora of different PCa info you're trying to sort through. In the months following my husband's PCa dx in Feb 2010, we were overwhelmed and confused by all the options and sometimes conflicting info. For many of us on this journey as patients or family, the good news is that we begin to understand & make sense of the info. Decisions become more clear as your research & education progresses. 

 

Because of the complex anatomical position of the prostate & its proximity to the rectum, prostate neurovascular bundle, urethra, & bladder, there's a lot more potential for serious complications & long term (permanent) side effects from PCa tx--any tx, including the all the various forms of RP, RT, etc. PCa tx is as much an art as it is a science. Therefore, not only do you need to choose a tx appropriate for your Tumor Stage & risk level (T 1-4), but more importantly, you must select a physician who is the best of the best, world class, and a true "artist" at his/her medical "craft." There are lots of good doctors who can tx PCa. But there are only a limited number of highly skilled, experienced & knowledgeable medical "artisans" who tx PCa. Many are at NCI Centers of Excellence & teaching hospitals, although some are not. You may have to travel a distance to find them (or they may be located in your own backyard). IMHO, these are MDs that you need to seek out, the best you can afford, for consults and/or tx. 

 

While the NCI has tx guidelines for various stages of PCa, they are just that--guidelines. In the PCa community, medical professionals and non professionals alike share a wide range of opinions about how, when, & even, if, PCa should be tx'd. To learn more, read: Invasion of the Prostate Snatchers by Mark Scholz, M.D.

and also:

The Big Scare: The Business of Prostate Cancer by Anthony Horan, MD

 

It's most important that your clinical staging & risk is determined as accurately as possible prior to a tx decision. This info contributes to your understanding of the risk vs benefit of different tx options and aids in your tx decision process. 

 

My husband, PJD, was dx'd almost 4 yrs ago. At age 67 he was otherwise healthy, fit, & active. A nodule/firmness was found on annual DRE, PSA Hx <2.8 (no rapid doubling). Local lab Bx report: Gleason 6, 9/12 cores positive (most with 50-100% PCa), PNI identified. Even though we live on the west coast, PJD made arrangements to have his biopsy core slides sent for 2nd opinion to the JH path lab (Dr Epstein) for analysis. Expert 2nd opinion Bx path report downgraded (worse) the initial G6 to G7, confirmed PNI, and further identified total PCa tumor volume to be 75%. Local lab pathologists analyze all types of cancerous specimens, but only a handful of path labs specialize in reviewing PCa tissue. Epstein @ JH has one of those path labs. 

 

For PJD, conventional pelvic CT w/contrast and bone scan were both negative for mets. Add'l testing with CDU and 3Tesla EMRI found ECE (extra capsular extension). Initial PCa staging changed from low/int risk T2 to high risk T3 stage, locally advanced, high volume. Regrouped, took some deep breaths (mindful meditation helps) and moved on...

 

After almost 3 months of DD, researching, diagnostic tests, dozens (literally) of expert medical consults with uro's, surgeons, RO's & PCa oncologists, talking with survivors in established face2face PCa networking groups that welcome men & women, PJD decided on an aggressive 3 part (multi-modal) primary tx plan. He completed all txs Jan 2011, is healthy & doing well, with low PSAs to date. Given his T3 high risk dx and the very nature of this insidious disease, we remain hopeful & cautiously optimistic for the future. 

 

Jerry, based on the limited initial stats you shared privately, you appear to have an indolent slow growing PCa. Please take sufficient time & action to gather as much staging info & data as possible, do the homework/research, seek multiple consults & opinions from skilled/experienced medical experts at several different medical centers of excellence, if at all possible. Put together a long list of questions to ask each specialist. Carefully evaluate and reevaluate which tx option(s) have the greatest potential for long term PCa-free survival with the least short/long term side effects. If appropriate, consider an Active Surveillance/Monitoring protocol. Then, take some deep breaths, make an educated/informed PCa tx decision that's right for you, and don't look back. 

 

mrs pjd

Wow ... Thank you for the thoughtful, detailed message.  It is very kind of you.

i am hoping to use Johns Hopkins' remote second opinion program (you do not have to go there.) It includes a pathology analysis. 

i recently learned of Cyberknife which I want to explore further. Here in Reno we have a guy who does it.

thanks again!

Swingshiftworker said:

CK at UCSF

Haven't been here for awhile and am late to this thread, but if you're going to UCSF and haven't met w/Dr. Carroll about RP (surgery) yet, you should make an appointment to meet w/Dr. Alexander Gottschalk about CyberKnife (CK) treatment as well.

They have offices in the same building -- the old Mt. Zion Hospital -- which is now called the Helen Diller Comprehensive Family Cancer Center located at 1600 Divisadero St at Post -- and may even have offices on the same floor of that building.

Dr. Gottschalk is the head of the CK program at UCSF and supervised my CK treatment in Sep 2010.  I had no side effects after treatment (no ED or incontinence) and, although it took almost 3 years for my PSA level to finally drop below 1 (as it did this past June), a MRI/MRSI scan (using a Tesla coil) done in Oct 2012 determined that there was no evidence of any cancer remaining in my prostate at that time.

So, if you're eligible for CK, I highly recommend you consider it.  The data has shown that CK is as effective as surgery and other radiation treatments in eliminating prostate cancer without all of the very serious risks of surgery and without the long post surgical recovery time period and with even less risk than experienced with other radiation therapies, such as IMRT or brachytherapy.

Here's a link to Dr. Gottschalk's profile at UCSF w/all of his contact info: http://www.ucsfhealth.org/alexander.gottschalk. 

Good luck!

BTW, Dr. Shinohara implanted the gold markers in my prostate prior to CK treatment but did not do anything else to/for me.

Thanks to everyone for the responses!  After taking some time to think and research, I saw Dr. Shinohara for an an ultrasound and Dr. Carroll  at UCSF.  Carroll recommended an "oncotype" analysis of my biopsy (Gleason 6, 3+3 in 3 cores) by a company called Genomics. Following all this, he said I was a good candidate for active surveillence.

I am planning to folow that course for now.