I am beginning to wonder if access to the internet has a big effect on prognosis. I do not just mean reading studies and browsing medical pages, but also "talking" with others going through the same things.
I had a strange feeling that the communication between the neuro-oncologist and radiotion-oncologist was not happening. This was in spite of both departments telling me that combined therapy was what they recommended.
So I called neuro-oncology and got through to the nurse there. She said "you are just down for radiation". It wasn't until I insisted that this was not true and that both departments had advised combined therapy that she agreed to talk with the Dr. and to call me back.
Within 30 minutes she called me back and said "you definitely need to come and see the Dr. before that starts to decide on dosage etc." and gave me an appointment for the same day as my simulation appointment.
This does not inspire me with confidence and makes me feel very sad for those people not so used to the internet, or those used to just trusting that the Drs. are doing the best. I am sure that there are doctors and centers with better communication, but right now I am furious.
On a good note, the tremendous amount of support both practical help and love from friends and family near and far is keeping me sane. Thank you.
Oh my goodness, Katy, I am furious right along with you. What a travesty for professionals to miscommunicate about something so #*$#@% important. I'm sorry you have to cope with this along with the stress of your chemo. Big *hugs* to you, friend.
ReplyDeleteThank goodness for the internet. It is a way to cross reference the information that doctors give and ask questions. I am fairly sure that the dose of temodar is 150 mg while doing the radiation. Makes no sense to take more than is the recommended dose.
ReplyDeleteKaty - I get the same treatment from my doctors, and I really wanted to switch hospitals. Then my sister told me it is like this everywhere. Don't pay any attention to the TV commercials about how 'teams' of doctors take care of you - that's BS. Your family and friends are your team :), and we don't even have a copay!
ReplyDeleteI too feel bad for the many out there who do not have support and blindly follow doctors. When I get through this I will volunteer as a patient advocate or something or the like.
We found Virginia Stark-Vance, MD's book "100 Questions and Answers About Brain Tumors" 2nd edition to be helpful. She was the person who first gave Avastin for recurrent malignant gliomas and now it is used routinely.
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