SF Bay Area provider recommendations

I think that your and my husband are twins separated at birth ; ). Welcome to the board < 3

We have exactly the same findings plus IDC. However I have to say that for us margin is not clearly positive, and EPE also i uni-focal and perhaps just looks like EPE - yes, as if I sleep well anyways and limbo findings are just amazingly comforting : (( *sigh

Maybe you can stay at Kaiser and work with the oncologist that is taking care of Jeff Marchi here - he has an outstanding care.

Other 2 options are Stanford and UCSF of course.

Wishing you the best of luck and keep us posted : ))

I’ve been with Kaiser for about 20 years. I’ve had prostate cancer for 15. I’ve had excellent care for prostate cancer.

I had surgery 15 years ago and 3 1/2 years later it came back and I had salvage radiation. 2 1/2 years later, it came back and I went on Lupron (ADT). I found out five years ago I have BRCA2 and that is why it keeps coming back. At that time, I was assigned an Oncologist named Dr. Andrea Harzstark. She is the only Genito Urinary oncologist in Kaiser’s whole system. That is the only oncologist you want since they specialize in prostate cancer. I’ve had a number of people I’ve worked with, On their difficult cases, switch over to using her as their oncologist. She was trained at UCSF and has had at least a couple of decades of experience. She can answer any questions i’ve put to her, and if you read things I’ve written in this forum you will find out I am very well informed. She is located in San Francisco and I’ve had people as far away as Sacramento switched to her as their primary. The thing is under some condition she will want you to come into San Francisco in order to get treatment. I have actually never met her in person, after 9 years. I’ve always been able to communicate with her by phone or video conference and I am not far from her, It has just never been necessary.

The problem with trying to get other insurance once you have prostate cancer is That supplemental insurance companies will not insure you, Or at least it will be very difficult to find one that will. They pay the difference between what Is paid for By your insurance plan and what you have to pay your provider out-of-pocket. Normally you have to get both supplemental medical and drug insurance. You may find it quite difficult, If you want to switch, you should See if it’s possible to get that type of insurance ahead of time. I’ve been told it’s either difficult or impossible.

If you do decide to switch, I would highly recommend you go to UCSF for treatment. They are really the premium center of excellence in this area. I think UCSF doctors are much better than Sanford’s to handle Advance prostate cancer, which your husband has. UCSF has an online advanced prostate cancer patient conference once a month, I’ve been going to it for about a year. You can get a lot of really great information there, And you don’t have to be a UCSF patient. I also attend a few other Advanced prostate cancer meetings every month, I could help you with finding out more information about them.

Salvage Radiation is definitely in your future. With positive margins it’s just a matter of how long it takes for his PSA to rise. Within seven weeks after surgery, my PSA was undetectable and stayed that way for 3 1/2 years. With what you’re saying has occurred it’s likely that his will not Be undetectable until salvage radiation is done.

Since it has already escaped the prostate and is likely in his bloodstream, over the years it is very likely to come back. The good thing is that the treatments they have today can enable him to live for many years. I have a genetic problem which causes my cancer to keep coming back yet I’m still here after 15 years.

One thing you may be faced with is ADT to prevent this cancer from spreading and growing. This has some real serious side effects, And I’ve had a number of them. That’s something to discuss later, but it will be something they’ll probably discuss with you When you get the next PSA test because they want to give ADT Before having salvage radiation. They gave it to me two months before my salvage radiation. As of now, I’ve been on ADT for nine years because of the BRCA2.

You can send me a private message here if you wanted to discuss this in more detail.

Jeff

Medicare has traditional fee for service [FFS] care. A; Hospitals, (automatic ), B: 'doctors' D; drugs. B & D are optional most get B & D. You do need to register for Medicare before it would be in force.

Supplemental Insurance: coordinates with A, B & C depending on one of the 10 state approved 'Medi-GAP' policies. Jeff mentioned there may be problems getting insured (Health) with diagnosis of Prostate Cancer. I believe he is referring to these supplemental Medi-Gaps.? I do not know how the Affordable Care Act [ACA'] anti-discrimination to prior illness protection applies if at all. Medi-Gaps often pay the annual 'in patient deductible' for 'A' costs., it typically pays for co-pays of 'B' costs. My brother has an AARP (UHC) supplemental Medi-Gap which pays 80% of his 20% B co-pays or 16% leaving a 4% residual responsibility.

NOTE: Medicare is the final payer. If a spouse is younger and still in the workforce with generous group health insurance available to both of you: double
check the added costs of the spouse and review coverages carefully. Group pays first, Medicare A, B, D next. The various plans are stacked in order and after consideration and payment if any the claim is automatically forwarded to the next payer if any.

Medicare Advantage is the managed version. Although cheaper for the time being because of federal subsidies it limits Out of Network care options, e.g., only exclusive providers [EPO] or it cost too much for non-preferred docs.[PPO]. With traditional FFS Medicare plans you could go to Mayo HQ to get a choline PET-CT scan if useful as it is the only place that has it. Forty years ago I knew someone who went there because he had FFS traditional Medicare. At the time they were the only place to use 3D CT fabrication of hips not the modified off the shelf versions. He was young for hip surgery, every advantage was helpful for him to avoid early revision with the unique duplication of his anatomy.

@thmssllvn

At the recent PCRI conference they mentioned that the choline PET scan is not worth getting. Much preferred to get the PSMA pet scan or the FDG pet scan if there is a question about another cancer type or neuroendocrine cancer.

@thmssllvn
Thank you for your reply specifically about Medicare. We just had a meeting this morning about options going forward. Here’s what we found out which may be helpful to others.
We are not on an Advantage Plan as my husband only signed up for Medicare Part A when he was 65 and he just kept his regular Kaiser plan through employment. He will be able to sign up for Supplement (he’s going with plan G) within 6 months of signing up for Part B. We were able to confirm that it would be very, very difficult to go to a Supplement if he were on an Advantage plan because of the preexisting condition of cancer. They can’t refuse him if he takes the Supplement Plan first. We were being pressured to take the Kaiser Advantage plan through insurance brokers that the company works with to manage the health insurance. We were told we could always switch later. I’m very glad we investigated further.

@jeffmarc

Thank you for your reply. We will check out UCSF when my husband switches in January. And since we are literally a few miles from Stanford, I was going to see what their system is like. It will be a learning curve for sure since he’s been with Kaiser about 45 years! We both feel we have had great care and some minimal subpar care. One of the reasons he wants to change is because we plan on being in AZ for extended times and this will allow access to other care no matter where we are.

Just wanted to say - I wish we went to Stanford first.

@jeffmarc

Good to know. The recent. LAX
PCRI.org should be soon available
online.

@surftohealth88
Is this because Dr. Aggarwal would not work with you, but when you went to Stanford, you found a GU Oncologist that would?

Stanford is considered a center of excellence for prostate cancer treatment. The weird thing is I almost never hear anybody saying they’re going there.

@jeffmarc
No, that is not the reason - we do have app (and that was not doctor's fault but their ridiculous protocol and scheduling) , and we never went to Stanford for second opinion. I am trying to per-sway my husband to do so , especially since it is so much closer to us, and wait time is much less for any appointment. They also have better coordinators, even for just getting an info. We once called (at the beginning of our Odyssey ) about information for TULSA procedure and we got all answers in a matter of 3 days without even going there. They pulled our results themselves, did a review of the case and CALLED us to tell us that my husband is not a good candidate since his lesion was toward outside of a gland and close to rectal area. It was all done in a 3 days and with no fee and we are not even their patients.

We also had great experience with Stanford with other health issues. There are some members here that chose Stanford over UCSF. UCSF is overly busy, wait time for any app. is measured in months and doctors are really tiered.

IMHO they are short on stuff in general. We constantly need to call for anything to happen and even than things fall through. Doctors never read the case beforehand, but catch up with info. during an app., I find that annoying. Just the other day we sent question to a nurse about working hours of a lab, never got an answer and so forth and so forth.

There were some cleanliness issues in a hospital room, but that part is notoriously lacking in all USA hospitals.

So yeah ... not impressed .