Wanted to post this.   I have a new patient who attended our Zoom meeting and read my website.  She compiled this list of things she learned.  I liked her list a lot!

These are some key messages running through the materials on your website, and they surfaced quite naturally in the Zoom meeting. For example…

  1.  the importance of self-advocacy – practitioners can’t be experts in all rare diseases and probably won’t have time to research yours, and it’s your life in the balance
  2.  appendix cancer is not just another form of colon cancer – it requires different treatment
  3.  the need to get advice from a recognised expert in appendix cancer as soon possible – before starting a treatment plan
  4.  that extent of tumours does not mean that your cancer is untreatable
  5.  cytoreduction and HIPEC is the treatment of choice, but you need someone who is an expert in cytoreduction to get the best possible outcome
  6.  some specialists are much better than others, it’s ok (and maybe even vital) to shop around,and you may need to travel to access the care you need.
  7.  if specialist expertise isn’t accessible to you, perhaps due to Covid travel restrictions, you may need to engage, educate, and connect your physicians to expert advice.