Anybody used Kaiser in DC or Johns Hopkins in Baltimore?

Hi, I am a newbie too, sort of. I had LARP surgery at Sloan Kettering in NYC on October 26th.
Initially, I was going to be treated at another institution and just went to SK for a consult. Once there, I realized they were the best alternative because they have an entire building dedicated to research and treatment of this disease. If I lived in MD-DC-NOV area, I would definitely opt for Hopkins. You may not need a second MRI. You can just have all of your records sent to Hopkins and they will read the results for themselves.

The thing about Hopkins and Sloan is they are on the cutting edge of studying and treating CaP. One of the things I learned is that many of the leading docs treating this disease studied at those institutions, or studied under someone that studied there.

Hope that helps.
Fred

I use Kaiser in California. It's a strange beast. If they've got a computer code for what ails you - well they're just fine and will take good care of you. But they aren't best at diagnosis or treating things they don't understand very well or using cutting edge medicine. I felt they treated my PC in a professional and well informed manner but then I have a simple case and the choice of treatment was left largely up to me. They did offer advice and I felt the doctors I spoke with knew enough. They also offered all the standard treatments, surgery, seeds, IGRT, etc. While I feel I receive good care I do wish I'd taken the extra time, effort and money to seek a second opinion.

Getting a second opinion is a good idea no matter who your primary insurance is so by all means go get one. Kaiser won't help with that as they will not pay for anything outside their system (there are exceptions but it would require a lot of effort).

You need to be your own health care advocate. Don't be afraid to stand up an demand what you need.

All the best,
Andrew

Brian,

First, sorry to hear about your diagnosis.

I'm a patient at Johns Hopkins and can only say great things about it.

I've been a patient in the Oncology Department for over a year now (because my primary [radiation] treatment failed). Since you have just been diagnosed, you'll probably see the Urology folks. I don't have firsthand experience with Urology, but they have historically been rated #1 or #2 nationally: http://health.usnews.com/best-hospitals/rankings/urology

Best of health in your "journey",
...Jerry

1. I needed an MRI for a liver mass at Cleveland Clinic. The wait was 5 weeks. (Turned out benign.)

2. (Obamacare from Wiki.)Effective June 21, 2010: Adults with existing conditions became eligible to join a temporary high-risk pool, which will be superseded by the health care exchange in 2014. To qualify for coverage, applicants must have a pre-existing health condition and have been uninsured for at least the past six months.There is no age requirement.The new program sets premiums as if for a standard population and not for a population with a higher health risk. Allows premiums to vary by age (3:1), geographic area, family composition and tobacco use (1.5:1). Limit out-of-pocket spending to $5,950 for individuals and $11,900 for families, excluding premiums.

I have been with Kaiser through my diagnosis, surgery, recovery, etc. and I'm happy to give you the benefit of my experience with them, which has been mixed. I'll start by saying how very happy I am to belong to Kaiser, starting two years ago when I became eligible for Medicare and signed up for their Medicare Plus plan. Compared to being "out there" on my own as a self-employed entrepreneur, it was like coming in from the cold. Overall, I love belonging to Kaiser. Their facilities are first-class, their employees seem to love working there, and as far as I can tell from their resumes, their doctors are well-educated and capable. I've never had any problems with delays for appointments or tests, or any unresponsiveness in general. When I've called them for something, things start moving. Check out Kaiser's ratings, especially the Mid-Atlantic group, from Consumers Reports. They're at the very top of the charts, #1 among all HMOs and insurance groups by a good margin.

Having said all this, my experience through PC had it's ups and downs, and I would give Kaiser a "C" for the part they played in it. My original Virginia urologists didn't seem very engaged in my case, so I "fired" them and moved over to the DC unit. I was much happier with the docs there, and ended up having them do my surgery. As you can see from my signature, my road to recovery was hardly a smooth one, with lots of suffering that might have been unnecessary. I can't say that my surgeon botched it, but I ended up back in the hospital with a bladder/urethra stitch tear and putting up with a catheter for another five weeks. Perhaps I caused the problem myself by being too active too soon, don't know. But he didn't give me a cystogram to check for healing before the catheter came out the first time, and that seems like a big mistake. However, I'm not sure this is standard procedure in general. If not, I don't know why it isn't. Since then I have healed well and there's a very good chance that I'm done with it. There's been no follow-up at all from my docs, but then I haven't contacted them either, other than the quarterly PSA tests. I really must start to do something about dealing with my ED, the only real legacy of my cancer. I wish I had been eligible for brachytherapy, but my prostate was too large and my PSA too high for that. That seems to be the way to go nowadays for lesser side effects. So I swing from one day feeling extremely grateful for my "cure," as it looks to be so far, to the next day wondering if I hadn't done anything would I still be fine and living out a normal life and not having to deal with ED. The only reason I got a PSA test in the first place is that it is (was?) standard Kaiser procedure for new members. If I had followed the recent recommendations and never had a PSA, would I have saved myself all of this trouble? Was it all for nothing? I'll never know, but it's a disturbing thought.

So that's my experience. Feel free to contact me if you have any specific questions about Kaiser. Based on their reputations, I would think you'd likely be in better hands at Johns Hopkins or the other top PC facilities, but not everyone can get the best care. Like anything else in America, you get what you pay for. I'd like to have a Lexus, but I'm fine with my Highlander. For what I pay them, I'm very happy to let Kaiser deal with my medical issues, but I'd never imagine for a minute that I couldn't get better care elsewhere if I was willing to pay for it out of pocket.

I wish you the best in your journey with PC and everything else.
Henry

Robert:

Thank you.

My logistics problem is that I only live in DC part time, so any time I need care I will have to return to DC or pay out of pocket elsewhere.

In retrospect when shopping for health care coverage years ago I should have chosen a national provider. But I guess I foolishly assumed Kaiser would partner up with facilities in other areas. But that option is not available for the self-employed like me.

My own fault. I didn't do the research.

Brian,
I'm sure you know that Kaiser is in other parts of the country, not just Mid-Atlantic, but perhaps not where you live when not in DC. And with your age and stats, I would definitely look into brachytherapy. Relatively easy treatment, apparently much lesser side effects, no real downsides that I'm aware of. My prostate was too big for it, I was told, so I didn't look into it much, but from what I've heard from the brachy guys here and their good experiences with it I wish I had at least investigated the possibility more thoroughly. Good luck to you.
Henry

I also asked my uro about the number of positives in samples and he sad the percentage of the positive core is more important than the number of cores. All of the samples taken, I think a total of 16 if memory serves me, all 8 on the left were positive, while all 8 on the right were negative. When I asked about it, he said that there was probably some on the right too but that he aimed to the specific area of interest, where he felt the nodule, on 4 of the attempts to the left. He also said that he was good at what he does, so he expected at least those 4 near the nodule to be positive. When asked to clarify, he said that uro's don't go into the biopsy blindly if they know what they are doing and shoot the needle willy-nilly thru-out the prostate. He said there's a sort of game plan to the targeting of more likely areas. He specifically mentioned that prostate cancer tumors "like the edges."

There are a number of guys on here who have gone the bracy route. And a couple more, at least, that went thru Hopkins that could chime in. The onc that I spoke with briefly at Hopkins was very nice, but my being 42, he agreed with the uro that surgery was probably my best route.