Tag Archives: adenoid cystic carcinoma

here. in my head.

1 Dec

Its been awhile since I’ve written and with good reason.  I’ve been battling for years and lets say for the two last years in and out of doctor’s offices with suspected TMJ, fibromyalgia and chronic fatigue.  I have to say I had grown comfortable with all these diagnosis, though I was not improving, they were a label and they were not truly bad.

After a bad impacted ear my girlfriend urge me to go to the ENT and show her the painful lump in my jaw.  It’s been felt up so much by dentists, oral surgeons, doctors it could be called a slut…and was often mistaken for a tight muscle associated with TMJ.  The ENT doc immediately thought it to be a tumor on my parotid gland and scheduled a CT scan.  No biggie, I read 80% are not cancerous.  I had the CT scan and then we followed with a needle biopsy (which was incredibly painful) and days later we had our diagnosis.  Cancer indeed.  And not any old cancer…a very rare cancer called Adenoid Cystic Carcinoma.

Yesterday, I went for a PET Scan and will have the results soon to know the extent of the disease.  Knowing how I feel (how I’ve been feeling for years),  I’m not entirely thrilled with all being revealed.  I am actively taking responsibility for my care and I’m in the process of self referring myself to MD Anderson for consultation and hopefully acceptance.  They are the closest to me doing the most advanced work with this type of cancer.

Again, my girlfriend is urging me to write about this to help others.  Though I’m not sure how much help I could be…if you found this, you may already be diagnosed and as I’m learning every case is completely different.  I will tell you the following:

  • I’m 35
  • no one in five generations of my family ever had cancer
  • i never asked my doctors enough questions or the right ones
  • i was satisfied with diagnoses that were not congruent with what I was feeling
  • i want to fight