SOCIAL: kaiser sf

[Jessica Tanzer Conroy]

I had the same problem with Kaiser, they misread my mammogram and missed the 3 centimeter tumor that I had been asking about.  It took 7 months for me to get in to see someone else at Kaiser who immediately sent me to a surgeon who removed a five centimeter tumor which had spread to my nodes.
  I learned from my experience, that if you can't get a test from one doctor (my sister and I literally had a two hour screaming fight with my first oncologist because he wouldn't oreder an MRI), then change doctors.  I ended up jusyt moving everything to San Rafael Kaiser where they are much less stressed out and have more time for their patients.  I learned things change once you use these two terms "standard of care" i.e., "I do not feel I am getting the standard of care", and the term "medmal", i.e., "I am not necessarily suggesting medmal, but....".  Both of those terms make people jump to attention (my dad's a lawyer).

  Also, do your own research, know what you are asking for and be aggressive, very aggressive.  My experience started to turn for the better once I developed a relationship with the cancer case manager, otherwise known as social worker.
 Now, I never thought I would defend Kaiser but in the last year of my treatment, I got almost everything I asked for, most of it from doing my own research.  At the same time I had a very close friend fighting cancer throough the LA County health system and they didn't give him the amount of chemo he needded to fight his disease.  I put his obituary in yesterday's Chronicle.  I also had another friend who had a rare form of cancer (of the appendix) who had Blue Cross insurance, because it was a rare form, any therapy was really considered experimental for her form of cancer.  When she learned that it had spread to her pancreas and lungs, her doctors decided to try her on a kind of chemo used for colon cancer.  The first day at the hospital, she sat, hooked up to the IV waiting for them to bring it in, instead, they came in and unhooked her from the IV drip and said Blue Cross wasn't going to pay for it because it was experimental.  We spread her ashes
 in the Ocean in Bolinas on Saturday.
  So, before completely giving up on Kaiser, my advice is to learn how to work their system, find a caseworker to be your conduit, do your own research and be aggressive, know what you want and don't take no for an answer.  I found the Oncologists and Surgeons in San Francisco to be useless and burned out and had a much, much better experience in San Rafael.  One patient described it as "the Nordstrom's of Kaisers".  My Oncolgist there is Dr. Krista Muirhead and when she wasn't sick or on vacation, she listened, was smart, treated me like I was smart and changed my opinion of Kaiser.

There, enough said.

Good luck,
Jessica
Oh, one more suggestion or two.  Get all of your records and pathology and keep them, they are yours, you may need them one day.  Also, a binder because so much information will be thrown at you at once, get a sleeve for business cards and lot's of notepaper and a three hole punch, the first month after diagnosis is very hard and your brain fills up fast, orginization is hard to think about but very helpful.  And, yes, marijuana is the wonder drug for chemotherapy, no joke!!!!

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--- On Mon, 9/22/08, Erin Milnes <erin.milnes at comcast.net> wrote:

> From: Erin Milnes <erin.milnes at comcast.net>
> Subject: SOCIAL: kaiser sf
> To: social at deeptrouble.com
> Date: Monday, September 22, 2008, 4:38 PM
> I don't mean to be a huge downer, but I wanted to let
> the group know about a
> bad experience my friend had with kaiser sf. my friend was
> diagnosed with
> pancreatic cancer last year, and kaiser was very slow to
> perform necessary
> tests, prescribe appropriate medications, and develop a
> treatment plan. I am
> afraid that those couple of months might have made the
> difference. I know
> pancreatic cancer has a very low survival rate, but that
> doesn't mean they
> should have thrown up their hands.
> 
>  
> 
> kaiser can be very good for health maintenance and simple
> injuries, but if
> you have a catastrophic illness and are a patient there,
> please seek a
> second opinion at ucsf or cal pacific. and push kaiser hard
> to move as fast
> as possible. they are a big bureaucracy and you have to be
> demanding and
> loud to get service.
> 
>  
> 
>  
> 
> Erin
> 
>  
> 
>  
> 
>  
> 
> -------------------------------------------------
> 
> Erin Milnes
> 
> Editorial Services
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> 
> 2308 Ivy Drive
> 
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> erin.milnes at comcast.net
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