Cancer Timeline

  • October 2020: First ever symptoms - I am woken in the middle of the night by some pain in my upper right leg. I do a tele consult (thanks, Covid!), and am told it's probably tendonitis from trying to learn how to run.
  • Mid-November 2020: The night pain becomes more common. Second tele consult, Doctor advises that I go get an Xray and Ultrasound. During the Ultrasound, the technician (the first ever healthcare worker to actually lay eyes on my leg), notices the swelling on my upper right thigh, and says "Ca c'est une bosse", in French (I'm in French Canada). I somehow do not equate the word "Bosse", with "lump". Also, aren't lumps mainly for breasts??
  • 2 days later: Doctor calls me urgently. Tells me lump is not tendonitis, but probably cancer. I don't believe her - it doesn't matter. She sends me to a Sarcoma specialist.
  • End of November 2020 - January 2021: Several scans (PET scans, MRIs, CT scans) and biopsies conducted. Final verdict of second biopsy- malignant lump. But not Sarcoma, probably Neuroendocrine Tumor.
  • February 2021: After a third ER visit due to nerve pain from the lump pressing against my nerves and femoral artery, the oncologist surgeon decides surgery would be best.
  • March 2021: Tumor resection, with removal of tumor as well as 2.5 of 4 quad muscles in order to ensure clear margins. I will lose my knee extension. No more running for a while.
  • April 2021: Margins are clear. Pathology reveals I have a Paraganglioma, a rare form of Neuroendocrine tumor. I am told no further chemotherapy is needed. I am officially NED - No evidence of disease. I begin physiotherapy to relearn how to use my right leg.
  • May 2021: The doctors can't explain why a Paraganglioma would show up in a limb rather than the head, neck or trunk where it usually occurs. By sheer luck, I am linked up to the Paraganglioma research department at the NIH. They begin analyzing my tumor to ensure I am eligible to join their research program.
  • May 2021: I do a belated PET Dotatate scan, the best to find Neuroendocrine tumors. It comes back clear.
  • June 2021: Clear 3 month scans. Next scans in November 2021
  • August 2021: Meet with an Endocrinologist. He is also stumped as to why a Paraganglioma showed up in my leg. He has me do a colonoscopy and a CT scan, searching for a primary tumor. Both come back clear. He is not convinced it is a Paraganglioma, but says it was the right call not to do chemo, since no evidence of disease.
  • End of October 2021: Begin to feel some on and off pain when walking. Too much physiotherapy maybe? Reach out to Doctor mid- November. My 6 month scans are coming up anyway.
  • November 2021:  The NIH inform me that after several months of research, they are certain I did not have a Paraganglioma, although they don't know for sure what I do have - but likely a "low grade malignant epithelioid neoplasm, possibly an ectopic adrenal cortical neoplasm". 
  • November 24: I do my 6 month monitoring PET scan.
  • December 6: I am informed I have mets in my abdomen (9cm tumor), right lung, right femur and right thigh. 
    • Oncologist in Canada upgrades diagnosis to a High grade Neuroendocrine carcinoma of unknown primary.
    • I'm switched to the NIH Rare Cancer team for research and genetic testing
  • December 8: I begin looking into second opinion from MSK, Mayo clinic and conduct Foundation One genetic testing
  • December 15: I have surgery to have a prophylactic nail inserted in my right femur, to stabilize the micro-fracture caused by bone mets, which were causing the pain I'd been feeling since late October.
  • December 30: I begin chemotherapy - Carboplatin and Etoposide. 3 days on, 3 weeks off, scheduled  for 4-6 cycles.
  • January 20, 2022: NIH provide research findings - they believe I have a Cancer of Unknown Primary. Genetic testing of tumor shows VHL loss and BAP1 loss. Oncologist in Canada elects to continue treating it as a Neuroendocrine carcinoma of unknown primary.
Status as of January 22, 2022:
  • Currently about to begin Round 2 of chemo
  • Stuck in limbo, waiting for pathology slides to be sent to MSK and Mayo clinic, and referrals to Sunnybrooke Research Institute.

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Hi! Thanks for checking this space! I'm not very good at the blogging thing, so I'll go straight to the point. In October 2020 at 31 years old, I was diagnosed with cancer. Five months later, after surgery I was NED - No evidence of disease. Eight months after that, the cancer was found to have metastasized to my bones, thigh, lungs and abdomen. I am a bit hesitant specifying what cancer I am battling, because the diagnosis process has been quite convoluted. The egg-sized lump in my right thigh was at first thought to be Sarcoma. Then a Neuroendocrine tumor (NET). Then a Paraganglioma, a rare form of NET. Then definitely not a Paraganglioma, but not clear of what it actually was. Then, when it metastasized, it was called a High Grade Neuroendocrine carcinoma. Now, over 15 months since it was first identified, word is that it is at best a Cancer of Unknown Primary. And the search continues. For sanity's sake, I will go with it being a High Grade Neuroendocrine carcinoma, whi...
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