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From Roxanne, what I've learned...
I'm not an expert but I've learned a lot since my husband's diagnosis. Please read below and please discuss this information with your own doctor and surgeon as early as possible - ideally before initial surgery. The decisions, choices and inactions or actions you make from the very start - from the time a tumor is detected - can sometimes affect the long-term prognosis.
If a brain tumor has been detected, please read important information below, developed and offered by the End Brain Cancer Initiative, a tremendously valuable resource for newly diagnosed patients.
Please visit the The Musella Foundation and read through their incredibly informative free guide for new patients - there is info you need to know and discuss with your doctor from the start.
Musella Foundation's Patient Guide (make sure this links to the latest, most updated edition as the link may change as it's updated: Link to the guide
Major brain tumors typically have the most experienced surgeons and the most advance equipment, in addition to access to the latest clinical trials. You can view a partial list of comprehensive brain tumor centers here.
Another important question we did not ask but I strongly believe we should have - is for a bit of fresh extracted tumor from surgery to be kept frozen without preservatives. This might be needed for certain vaccines or clinical trials and without it, additional surgery might be necessary to obtain it. Please discuss this with your doctor and surgeon prior to surgery, if possible.
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