Rejected by Mayo?
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Hi Jeff,
I am sorry you had to find us, but you will discover a warm, welcoming community here and tons of good information.
It is very important to get good surgical opinions up front. Some surgeons are more willing to operate than others if the cancer is borderline resectable. In my own case, for example, I was initially told by a tumor board I was inoperable but then a surgeon came forward who felt surgery would be feasible.
I posted an article yesterday which I attach again below that describes a list of possible treatments that can be considered when intrahepatic CCA is just in the liver and surgery is not possible. Some of these are used after or in conjunction with chemo. This may suggest questions you can ask the doctors when consulting on your MIL’s case.
http://hbsn.amegroups.com/article/view/13987/14591
It is interesting your oncologist was “surprised” there were no symptoms or affected liver functions. This is one of the insidious features of this cancer – intrahepatic CCA can be symptomless in the initial stages. In my own case, I had had a very thorough physical several months before I was diagnosed and there was not one sign of anything amiss. A large mass in my liver was then found accidentally in a scan related to pain from a pulled shoulder muscle. It is positive that your MIL’s cancer was found before it had started harming her liver functions.
It would be good to ask who in Mayo was consulted by your local doctor – there are very few true experts in this cancer. I agree the reaction from Mayo seems strange.
Wishing your MIL and family all the best as you pursue treatment.
Regards, Mary
What chemo regimen is the oncologist suggesting?
I don’t understand why molecular testing is not okay if the patient is requesting it. Have you asked the oncologist, even if they have to send the sample somewhere else for testing?My experience in one instance was the oncologist suggested his chemo regimen before even looking into clinical trials or genetic testing. If the inquiry is pursued again, I am sure he will be okay with the testing.
Check again. I have not worked with Mayo yet.
Hello. So my mother in law was just diagnosed with CC and I believe it’s the intra kind. My wife has been going to the appts. It’s completely contained within the liver and there is a 3 inch tumor in the right lobe and about three small ones in the left lobe. She’s been going to Karmonas in our small town and has only spoken with one oncologist and of course her family doctor is keeping everything organized. She’s not in any pain and her liver is fully functioning which the oncologist thought was odd. The oncologist is recommending putting in a port and using chemo to shrink down the tumor because he said right now it is in operable and she’s too healthy to get a transplant The family doctor called Mayo to get a second opinion. Mayo called back and basically said they agree with what the oncologist said and they wouldn’t do anything different. She hasn’t spoken to a surgeon and hasn’t had any molecular testing done from the biopsy. We thought that’s what Mayo would recommend and were kind of shocked that they’re basically saying there isn’t anything else they would do? They called university of Chicago because we’re located in Michigan, and they were told the first meeting would be with a surgeon and they are set up to talk with one on Monday morning. Their family doctor also set up an appointment at the University of Michigan here for Wednesday morning. I’m just shocked that Mayo rejected them. Is that common?
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