Hi everyone,
Part of me thinks it's foolish to post on this board since I keep waiting by the phone for the call that says there's been a terrible mistake. This could not be happening to me. After reading many of the posts I'm even more terrified than I was before. Actually, terrified doesn't come close to describing my fears.
I'm a 44 yo woman, never smoked, very athletic, a competitive distance runner and avid equestrian, I lead a remarkably healthy lifestyle and can't possibly imagine the devastating impact this will have on my life.
The background of how I got here: I had a large lump on my neck (which got to be larger than a chicken egg) for several months this Fall that I continued to ignore, thinking it was an enlarged lymph node as a result of possible infection from some dental work. When I finally saw a doctor, three of them simultaneously concurred that it must be an infected salivary gland. I was given an injection of antibiotics plus oral antibiotics and told to put a heating pad on it and massage the lump as firmly as I could stand to try to expel whatever was lodged in the gland. Hah. That was dumb and painful. The next day I saw another doctor took the initiative to take blood and chest x-rays (which showed nothing), suggested I wait a week and then if it hadn't reduced in size we would move forward. One week later it was even more painful and bigger so the dr. ordered a CT scan at which time the lump was diagnosed as a branchial cyst which was surgically removed on November 16th (I have a 4" incision across my neck). Post-op the surgeon repeatedly swore that the mass he removed was a benign cyst and there was no need for concern. Two days later he called and said, "I have some bad news, the pathology report has come back and the mass was actually a lymph node that has largely been replaced by squamous cell carcinoma". Gasp.
That was less than 2 weeks ago and since then I've had a PET scan from which I am still waiting results and have been referred to a head and neck oncologist at Mass General whom has assembled a "team". I've already met with the surgical oncologist (yesterday) and have surgical biopsy scheduled for Tuesday the 29th to try to find the primary tumor. The surgeon enlightened me a little bit about the nightmare I am facing in terms of the treatment and frankly I was completely caught by surprise. I had no idea what horrors I had in store for me.
At this point I'm still facing a large number of unknowns:
- was the lymph node
HPV positive? (apparently this would be good)
- results of the PET scan
- Most importantly, was the originaly pathology reading correct? My ENT surgeon who removed the lump was so surprised by the results that he ordered the specimen be reviewed by the Mayo Clinic. I don't have these results yet which is terribly frustrating.
So I've joined this group to get the straight story. I don't want a feeding tube so will do everything in my power to avoid that (I'm 5'10" and 125 lbs so I also can't afford to lose any weight). I would love to be able to continue working: I am a sales and marketing director for a scholarly publisher and can work from home (although typically my job requires extended business travel) and although the prospect looks fairly grim I would love to be able to continue running.
My "team meeting" will be Friday, Dec 2nd at which time my "plan" will be decided. I'm terrified. Until then all I do is sit and fret. Any advice will be greatly appreciated.
