Advice Needed: Drs Recommend Whipple But Are Unsure If I Have CC
- This topic has 36 replies, 6 voices, and was last updated 8 years, 7 months ago by
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Thanks Catherine and Lainy. That clarifies things a lot. Going to politely bug UCSF for an appt today. Wish me luck!
Victor, when Teddy had an aborted Whipple first it was because when the Surgeon got in he discovered that the dye from Teddy’s ERCP leaked and destroyed the Pancreas. He needed a healthy Pancreas as he planned on cutting it off at the head to make sure the CC had not spread in to the Pancreas. After 4 hours he came out and came up to me and said, ” I have good news and not so good news”. My first reaction was. I did NOT hear BAD! He said the CC had not spread but we have to wait until the Pancreas heals as I can’t cut it this unhealthy. 3 weeks later T developed a double e coli infection and was in the hospital 9 days after which the Surgeon did the real deal Whipple. All turned out fine. But I think it is a good example of how they just don’t know what they will find until they can actually see it.
Gambit-
My Mom had an aborted resection- it’s when they plan on going in and removing the tumor, but once in surgery and opened up, they see that the tumor has spread or is impacting areas that make removal not feasible. We are fortunate that with great doctors t and a lot of luck, she is still with us today and feeling great, but we much prefer to hear about successful resections with clean margins.
Take care,
CatherineVictor,
We live in the east Bay Area and were with kaiser when my husband developed itching, jaundice etc. it took kaiser more than a month and 6 re ps, spyglass, ca 19-9, all of which were negative or inconclusive, to finally diagnose cc. And it was only diagnosed through an aborted resection. In our opinion, kaiser is very good at routine medicine, but is absolutely not equipped to treat cc aggressively. They would not even pay for a second opinion outside of kaiser. We found Dr. R. Kate Kelley, GI Oncologist and she has been outstanding. We are thrilled with our doctors at ucsf nd my husband’s prognosis under their care. I would highly suggest you contact Dr. Kelley immediately. You may want to read through my posts detailing my husband’s journey. Feel free to message me with any questions. Wishing you all the best.
Debbie
A lot of my online research pointed to UCSF. I wonder why my Kaiser surgeon recommended Stanford over UCSF, especially when he trained there for 9 years?
Victor, I will bow to Marion on the last post as I feel she can give you a better answer. Unfortunately this is a terrible time of year because of Holidays and not sure how long it may take. Again if you are open and available you might get in quicker if put on a cancellation list. Sit tight for her answer, should not be too long. The thing is, there are some ONCs at UCSF that are outstanding in our field.
Thanks for your input Marions and Lainy. I’ll follow up with the scheduling department tomorrow. I was trying to go with Dr Nakakura there, but is there anyone else there that would be a great go-to?
Also, I know this may be a tough question, but how long would be a reasonable time to wait for UCSF?
Victor, I second Marion’s comment! Perhaps you can find out how soon you could get in to UCSF and if not soon enough perhaps there is a waiting list.
Gambit…..I would check into availability at UCSF. Are we looking at weeks or months? This cancer demands professional opinions from a high volume center “very” familiar with cholangiocarcinoma.
Hugs,
MarionThanks Marions and Lainy. The records have been ordered and I should have them by the end of week at the latest. Even if Kaiser doesn’t cover the surgery my wife’s PPO plan (Blue Shueld I think) should cover it minus any deductible. The only problem with UCSF is it may take longer to get in so I have to decide how much time I can lose. Thank you both for your help!
Now, to be honest, you did what I would do but I do want to comment that your Kaiser DOC said the right thing. That is a good DOC but I would still see what Stanford says. Good for you! You are learning fast little grasshopper! Don’t 4get to order your records. Thats the Mom in me!
Gambit……. I live in the San Francisco area as well. For this cancer, I highly advise you to connect with UCSF, as their physicians treat a significant volume of CCA patients. Prior to your initial visit, UCSF will request your records from Kaiser. Out of pocket charge may include initial consultation, but other costs may very well be covered by Kaiser. This may include surgery by UCSF.
Hugs,
Marion
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