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suggestions for 2nd opinion LA area

traci43's picture
traci43
Posts: 381
Joined: Jul 2007

Hi - My Dad has prostate cancer and he's looking for a good second opinion in the Los Angeles area, thinking about City of Hope or Loma Linda. He's got Kaiser and is really starting to vascilate between implant radiation seeds and external radiation. His PSA has been as high as 13, but that was fairly soon after the second biopsy. Most recent PSA 8.5. Any recommendations/suggestions would be appreciated. Thanks, Traci

hopeful and opt...
Posts: 1266
Joined: Apr 2009

please post information about the results of the biopsies; when taken, number of cores taken, number positive, gleason score of each positive core, the percent of cancer involvement of each core. hat were the results of the digital rectal exam. What were the dates of all of his PSA's. How old is your father. How is his general health.

Also it is critical that you get a second opinion of the biopsy slides from an independent(not Kaiser) expert pathologist that specializes in prostate cancer. There are only about a dozen in this country.

PS. Asking for more information since this can help in sending you to the right prostate cancer specialist for a second opinion.

Dr_Jeff
Posts: 10
Joined: Jan 2010

I can't say enough about the City of Hope and Tim Wilson. You would be in good hands there.

traci43's picture
traci43
Posts: 381
Joined: Jul 2007

I'll pass the info along.

mrspjd
Posts: 687
Joined: Apr 2010

Hi Traci, and Welcome.

I see you are a Survivor. I hope you are doing well. While PCa differs somewhat from other types of cancers, no doubt some of your experience in navigating all the various aspects & issues related to “cancer,” in general, will be helpful to your father. I applaud your efforts to be supportive of him.

My husband, PJD, was a So Cal Kaiser member at the time of his dx in Feb 2010. After the dx and, after a ton of research, one of the best things we did early on was to attend an established face to face PCa networking group mtg comprised of knowledgeable men and women and lead by a trained professional. The initial PCa info, resources (local & national) and education we received from the group proved to be invaluable in our PCa education process. There are several excellent PCa networking and support groups in and around the L.A. area. If you’d like specific recommendations or more info, please feel free to send me a CSN email with your/his general geographic location (L.A. is a big place).

In order to make the most of 2nd opinion consults (suggestions for L.A. area follow below) and BEFORE considering/evaluating any specific PCa tx modality, Dad’s PCa must be staged as accurately as is clinically possible. The staging may be a factor in his treatment choice(s) and may also influence tx outcome. There is not always a consensus in the PCa medical community on prescribed tx courses for various PCa risk levels and often the tx decision is left to the patient. So it is incumbent upon each patient (and his patient advocate, if he has one), to be as well educated as possible about all aspects of PCa. A daunting task but, knowledge is empowering.

First, Dad will need to prepare for the appts by obtaining written copies of all his Kaiser PCa records/reports/results related to PSA history, dx, diagnostic tests, doctor’s visit notes and Kaiser’s path lab bx results. Next, it is extremely important to obtain a 2nd opinion pathology analysis of his biopsy specimens. This is done by sending the bx slides to a path lab that specializes in analyzing PCa bx samples, such as Johns-Hopkins or Bostwick. PJD easily arranged this himself but your doctor may do it for you if you ask. The 2nd path report will either confirm, downgrade or upgrade Dad’s T (tumor) staging risk. In PJD’s case, after receiving the 2nd opinion path lab bx report from J-H, we learned that Kaiser’s path lab had under staged PJD’s PCa. His PCa tumor/risk level was greater than Kaiser had initially determined. We sought out further diagnostic testing both in and out of Kaiser (as Kaiser didn't offer certain tests). Then we consulted with multiple experienced and skilled uro-surgeons and RO’s in Kaiser (at different major hub locations) as well as out of Kaiser's network, from So Cal all the way to No Cal (Stanford and UCSF). Not surprisingly, many physicians tend to favor their own specialty for tx…uro-surgeons often recommend RP and, RO’s, RT.

Your dad's most important consult, however, should be with an oncologist who specializes in PCa. An experienced and knowledgeable PCa onc can provide an independent assessment of your dad’s case and suggest tx modalities that might be appropriate for his PCa risk level, taking into consideration his overall health, lifestyle, and QofL priorities. You have one of the best known & highly regarded PCa oncology practices in your backyard--Drs Scholz and Lam of Prostate Oncology Specialists in Marina del Rey. UCLA and USC are also known to have respected oncologists on staff, for instance, Dr. Tanya Dorf @ USC. UCLA is known to have a state of the art RT tx center.

You mentioned LL and CoH: Both medical centers are highly regarded by many and offer a full range of PCa tx options; however, most PCa patients consult w/ LL because the center is known for their Proton RT, just as CoH is best known for its Da Vinci Robotic RP program.

It’s a good idea for you or another family member/trusted friend to go with dad to the consults as an extra set of ears. We took along a small hand held audio recorder to tape the session (with the Dr’s permission) and played it back later to hear info we missed the first time—all the info can be overwhelming. Take a list of questions to ask the doctor. If you look back through previous threads, you’ll find suggested questions as well as must-read PCa book recommendations.

I invite you and/or your father to share his PSA & PCa history & dx/bx stats here so that others may contribute their thoughts and experiences as it relates to your dad’s case. Depending on his PCa stats and other factors, Active Surveilance (AS) may be a very viable and appropriate plan of action to follow vs RT or RP. If you need more info, please LMK.

Wishing you and your dad all the best.

M (mrs pjd)

PS: Great pix!

traci43's picture
traci43
Posts: 381
Joined: Jul 2007

Thanks Mrs. PJD - that's a lot of information! I will pass it along to my parents and see what he has to say about posting his test results. For the first few months Dad was comfortable with his Drs. but now he's hearing conflicting information hence a desire to get an outside opinion. It sounds like the second opinion on the pathology is really the next step before seeing another Dr. It appears he has lots of options for other doctors both within Kaiser and without.

I so totally agree with you about having someone go with him to these appts. Throughout my cancer journey I've had someone go with me to all the important visits when I get test results or discuss treatment options.

My Dad has at one time or another favored active surveillance, brachytherapy and radiation. He's really resistant to removal, even though he has the "get it the $#!! out of me" feeling that we all get when we're told we have cancer. He's heard to many horror stories about incontenience. :-( Not quite sure where this journey will take him but whatever he chooses, I believe he'll be okay as they found it soon enough.

bdhilton
Posts: 752
Joined: Jan 2010

I would recommend that you go to UCSF for your second opinion http://www.ucsfhealth.org/clinics/prostate_cancer_center/index.html

Best of luck

traci43's picture
traci43
Posts: 381
Joined: Jul 2007

UCSF seems to be a common referral. Thanks1

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Hi, Traci.

Sorry that your father has been faced with this diagnosis and I certainly do hope you seek second or third opinions giving the information you posted about his diagnosis. The UCLA Medical Center is a world renowned cancer treatment facility and there are many excellent prostate cancer doctors on staff there.

Although you didn't mention details of his biopsy or staging, the PSA results you wrote about could suggest that something besides prostate cancer is going on. PSA by itself is difficult to initially gauge prostate cancer. The fact that it was has high as 13 and then went back to 8.5 could be a result of other conditions besides prostate cancer such as BPH, an undiagnosed UTI or some other common condition that causes PSA to fluctuate.

A critical piece of information your father needs to understand is the Gleason score from his biopsy and the staging he was given. Other relevant information is the number of positive cores in the biopsy and the percent involvement in each positive core.

Good luck to you.

K

traci43's picture
traci43
Posts: 381
Joined: Jul 2007

I'm goiNg to try to get the details of his biopsies and PSAs and post them. Dr. says the drop in PSA was that it was too soon after biopsy which causes a rise in PSA.

bdhilton
Posts: 752
Joined: Jan 2010

I personally know folks treated at UCLA, City of Hope and “other” top rated LA facilities with many interesting comments but from the personal feedback that I have heard, UCSF is worth a look being so close to LA. I went to Chicago for my treatment and I live in the South East…Do not let distance be an issue or factor in your treatment choices. UCSF are also big on diet and diet changes in treatment…All the best with your father selecting the best treatment for him

traci43's picture
traci43
Posts: 381
Joined: Jul 2007

Thanks!

blessed4747
Posts: 2
Joined: Apr 2012

hi Traci
my husband has gone through a soft tissue sarcoma and then when we were just getting to some normalcy he was diagnosed with prostate cancer if you can believe it. He ended up doing bracheytherapy and was treated at the loma linda va from there he went up to seattle for the treatment. he is doing very well and his psa is back to around 1 it is less evasive than regular radiation and hardly any down time , but as you know there are risks in all procedures. Loma linda is a great hospital they network with the va and saved his life

I wish you luck

traci43's picture
traci43
Posts: 381
Joined: Jul 2007

That's a lot for your husband to go through. I hope he's doing well. Dad was really leaning towards brachytherapy but is not leaning more towards radiation. Not sure why. Is the anyone at Loma Linda you would recommend he see? Traci

shipjim's picture
shipjim
Posts: 130
Joined: Apr 2006

How old is he, has he been diagnosed with any particular strain of cancer e.g. slow growth aggressive etc? Much of this will depend on treatment anywhere from surgery to watch and wait. Get all the info you can and question your doctors at length. They may want to move on but don't let them until you all are satisfied with what you learn.
Also use this site and google to gather info.jj

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