Anyone here gone through sarcoma care at Kaiser Santa Clara or second opinions at Stanford/UCSF?

[u/Canimarrybrett]

My husband was recently diagnosed with sarcoma. We just went through the first scary week with almost nothing happening because Kaiser scheduled everything two weeks out. Next week we should know more as we’ll be meeting with Stanford for a second opinion and also seeing our Kaiser oncologist for the first time.

I’d love to hear from anyone with similar experiences.

Kaiser Santa Clara:
Has anyone received sarcoma care through Kaiser Santa Clara? How was your experience with their oncology team? Has anyone specifically seen Dr. Jeffrey Bien?

Stanford second opinion:
We set up a second opinion with Stanford, but the first appointment we were given is with a doctor who doesn’t appear on Stanford’s website under the Sarcoma Program (although her focus is sarcoma, she’s just not listed as one of the program specialists online). Is this normal? Do they usually start with an intake oncologist and then transition patients into the sarcoma team?

Other questions:

• How quickly were you able to get treatment started at either Kaiser or Stanford/UCSF?
• If Kaiser is moving too slowly, is it worth moving treatment to Stanford or UCSF?
• We are also initiating a second opinion with UCSF, but they seem stuck trying to pull our medical records. Has anyone gone through a sarcoma second opinion with UCSF and can share how the process went?

Any insights or shared experiences would be greatly appreciated.

[u/Dremscap]

I’m east coast based so I can’t comment on a lot of this.

It feels like everything is moving at a snails pace & your doctors aren’t doing anything to help you. This isn’t the case - given the doctor’s choice, you would be on treatment the literal second they are certain what your disease is.

Every single delay is the insurance company trying to find a way to fuck you.

In general - a sarcoma specialist knows what they’re doing. There are MANY other types of oncology to specialize in that are more studied and lucrative. Someone who chooses sarcoma is… a masochist and loves complicated diseases. Get a second opinion, but keep that in mind.

[u/jay-aay-ess-ohh-enn]

I would prioritize treatment from a sarcoma center that is on this list if you can afford it.

https://sarcomaalliance.org/wp-content/uploads/2022/01/Sarcoma-Centers-List-by-state.pdf

[u/disco-bloodbath]

Yes I did treatment through Kaiser east bay (one sarcoma surgeon named Chakedis) and it was largely successful but took several months to get the right diagnosis and treatment, including a false negative biopsy that came five weeks after my first surgery, requiring them to redo the surgery. We paid for UCSF second opinion and it took far longer than they estimated to get the records and specimen, to the point that we had to pay for several appts because they simply didn't have tests completely done by the time our appointment happened. Ucsf did put me right on the sarcoma track though as soon as I sent my diagnosis from Kaiser. Ucsfs ultimate treatment plan almost exactly mirrored Kaisers, which was encouraging.

I am happy to talk about this further if you have more questions. Good luck. Overall we're very lucky to have access to so many actual sarcoma facilities nearby.

[u/Canimarrybrett → u/disco-bloodbath]

Thanks! How did UCSF get your medical records and specimens? Other redditors told me that UCSF should be able to pull things directly from Epic since Kaiser uses that system too, but UCSF insisted the best way was for Kaiser to mail them the imaging disk. I don’t have that, and Kaiser just gave me a link for UCSF to request records.

How do you feel about Kaiser’s sarcoma care? Did you catch your sarcoma fairly early so that surgery was enough and then you could just recover? We haven’t met with our Kaiser oncologist yet, so we don’t have details. we don’t know the subtype or stage yet, but we’re very nervous about what’s coming next.