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ChrisCQ, Jabberwocky
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Original Post (Thread Starter)
by muddyb00ts
I have terminal cancer of the tongue (SCC, spread in nerves throughout jaw). I started my treatment at UCSF with a Head/Neck Oncologist with no communication skills whatsoever. It was also a long way from home to get treatment there, so I made an arrangement where the UCSF doctor would still be involved (I assumed that because he worked at UCSF he was better) and got a local oncologist to do treatments with closer to home.

The UCSF oncologist says you can only do cisplatin/taxol 8 times and then you have to switch. His next choice -I forgot the name, but it is an anti-epithelial cell drug that, in my research, doesn't work well on it's own. The local oncologist says he's never heard of a ceiling for cisplatin/taxol as long as bloodwork and side effects are not an issue and it seems to be working (my tumor is growing very slowly).

The local oncologist is an older guy, and not head/neck specific, so I'm just wondering how to make sure I'm getting the best care I can so I can live an active life for as long as possible. I'm about to be 46. I'm not ready to surrender to this stupid disease. Will bringing in a 3rd opinion just muddy the waters more? Once you get the opinion do you continue with that doctor or can that guide your current doctor? (Family wants me to go to University of Chicago, but I don't want to move back to IL.)

Any help is appreciated, TIA.
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by ConnieT
my husband was given the news that not much could be done. He went to Mayo clinic and they had said they lost only 1 person with his cancer. He is 1.5 yrs out with his second bout and just got another clean bill of health. you never know. best wishes to you
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by Brian Hill
Brian Hill
It is always a sad day when we lose someone that we have come to know and care about.

Not knowing the medical specifics about this situation this comment may or may not apply. There is a wide quality bell curve of treatment facilities and individual practioners knowledge and skills. There is also a fair amount of peer reviewed published work on the impact of the choices made in treatment institutions looking at small regional hospitals vs larger teaching university hospitals and NCI designation comprehensive cancer centers. The better funded and staffed institutions have better long term outcomes for a variety of reasons. When talking to patients I understand the insurance coverage and choices they force upon us, as well as the financial constraints of any person or family. But I alway urge people not to let geography dictate their treatment choices, nor convenience. For the most part we get one chance to deal with our disease. It is imperative that patients make an informed choice when deciding on where their treatment take place, and not let the continence of a facility dictate that choice.

In the resources section of the OCF website, there is a link that says best hospitals. It takes people to an unbiased listing and rating of cancer hospitals in the US, done by US News every year. They have a very thorough means of rating the hospitals based on everything from end results, to modernness of equipment, education of clinical staff and much more. You can sort by rating, or by zip code. Understanding that not everyone can leave their insurance service area, it allows them to search locally, and for those that can afford to travel, nationally.

We do not get to make a lot of choices about our treatments. But choosing our team is the one thing that has significant impact that we can do.
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by Paan
Prayers rip
1 member likes this
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