Dec 29, 2009 - 3:23 am
I've been diagnosed with NPC and just had the PET/CT scan today so I've not been staged yet. The only symptom I had was a swollen lymph gland which I first noticed in March '09 and told my PCP Dr about it. He gave me a course of antibiotics (contra indicated by at least one study I found - I've photocopied the paper for him) which seemed to work but by June the gland was getting bigger.
By November it was about 3cmx2cm. The ENT referral was where I had the first FNA which was a "sampling error" but the Dr said he thought it was either lymphoma or infection. He did a core biopsy which also was dubbed a sampling error. He sent me to UCSF and the pathologist there did another FNA gave me her impression that is was NPC, keratinizing, poorly differentiated. I had an MRI shortly after that as well as another exam with fiber optic and they cannot find the primary. The PET had already been ordered and that was today.
Early this morning I noticed the gland was much smaller (no treatment yet). Right now the gland is <2cm. The ENT Dr says "this sometimes happens" and it is not necessarily and indicator of a good prognosis. The occult primary and the shrinking lymph "could be" because of my strong immune system. Once I felt I was dealing with a malignancy (about 2 weeks ago) I cut out all sugars (even fruits - only in very small quantities) and began exercising. I read a great deal about how cancers love sugar and hate oxygen.
Now I'm just waiting and like most of you, the panic and fear is overwhelming. Mostly the fear is about the uncertainty of the future, which I think is quite ironic. Anyway, I thought I would give my story and say hello to this community of survivors, of which I am now a member, and ask for any tips for how to deal with/think about treatment options.