Help me get a diagnosis!

Hi everyone. As many of you know, I have been struggling to get proper medical care for some time. In March 2022, I was diagnosed with Indolent Systemic Mastocytosis, after 8 years of symptoms and misdiagnosis. After months of doing my own research, I asked my oncologist about starting Imatinib, a targeted cancer therapy. I was able to start the treatment at the end of October 2022. On December 29 2022, during a follow-up with my oncologist, she told me that she “had looked at my file properly and was no longer certain about the degree and accuracy of my diagnosis.” She advised me to continue treatment for another few weeks, and by the end of the appointment she changed her mind and told me to just stop it right away. Since then, I have had to undergo many of the diagnostic tests that I had done in 2022 for a second time to no avail.

We are now 8 months later, and I am still in limbo for an official diagnosis, and therefore unable to pursue additional/better treatment options. My oncologist has flat out told me that she does not know what to do with me nor what to say to me. As you can imagine, this is very difficult to hear. She has also begun to neglect proper and simple care.

Unfortunately, due to the rarity of this cancer, there is no other oncologist that I can see who would be able to better assist and take proper care of my case. I did see someone in Toronto in June, but it was also a bit of a dead-end.

From the very beginning, I have had to take matters in my own hands, and this now means searching for an opportunity outside of Canada. I have been in contact with many hospitals and centres in the U.S. including MD Anderson, Mayo Clinic, Columbia and Sloan and Kettering.

They have all offered to review my file and take me in for an evaluation, but being the U.S. it comes at a hefty cost. My search is ongoing, but I will likely end up going to Mayo, who has offered the most cost effective option.

I am grateful for any assistance that can be provided and thank you all for your support.

Best,

Liv