OMG! Stupid Cancer Summit 2014 Brain Cancer Patient Panel and Focus Group

“Benign tumors are tumors that cannot spread by invasion or metastasis; hence, they only grow locally. Malignant tumors are tumors that are capable of spreading by invasion and metastasis.” – NIH

By definition, the term “cancer” applies only to malignant tumors. Chemotherapy, craniotomies, radiation, and ports placed for both types of tumors are however the same. The biggest takeaway from this afternoon’s session is that we need to remove the words “benign” and “malignant” from our vocabularies, and step back to look at the patients, not the one word that differentiates them because of a pathology report. Both types of tumors so often have the exact same treatments and effects because of tumor location, not tumor grade. Yet, one word typed in a patient file can shut patients out from any type of potential follow-up care at a cancer center or support group, and leave them ineligible financial aid.

Several non-profit travel aid and health insurance resources were thrown out during the panel as well, and I will post the names with links to all of the resources that I learn about this weekend once the conference wraps up.

A few key quotes from the discussion worth sharing:

  • “If you find something [treatment wise] that your doctors aren’t offering, go for it”
  • “We need multidisciplinary, comprehensive plans that involve neurosurgeons, radiation oncologists, fertility specialists, etc. working together on behalf of the patient”
  • “Finding someone to talk to about your diagnosis is so much better than doing nothing”
  • “Patients have the right to know about and have the option to talk to a fertility specialist within 24 hours of their brain tumor diagnosis”

Essentially, be the decider in your care.

panel

We came. We talked. We conquered.

Tomorrow includes three main breakout sessions, and I will be attending a total of six meetings set up throughout the day. You can follow the conference online by searching #OMG2014 on Twitter.

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