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…
- 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
- appendix cancer is not just another form of colon cancer – it requires different treatment
- the need to get advice from a recognised expert in appendix cancer as soon possible – before starting a treatment plan
- that extent of tumours does not mean that your cancer is untreatable
- cytoreduction and HIPEC is the treatment of choice, but you need someone who is an expert in cytoreduction to get the best possible outcome
- 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.
- 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.