Hello everyone. I'm new to the forum. Glad to have found you all!
I'm 53. I've been diagnosed with Metastatic Squamous Cell Carcinoma of the Head and Neck with an unknown primary.
The current diagnosis/classification is Tx N2b, MO stage IV. The cancer is in the lymph nodes on the left side of my neck and has spread to lymph nodes in the anterior part of my neck. The tumors are under 6cm but they've been growing over the last month or so as I've been going through the process of diagnosis and preparing for treatment. Originally, the CAT scan done in November showed the tumor at 3.1cm. It's now at about 5cm just prior to treatment. I had a tonsillectomy the 21st of December and have pretty much recovered. They biopsied my tonsils, back of the tongue and nasopharynx and all the results were negative. The laryngoscopy showed no abnormalities. Other than some minor fatigue and my left ear feeling clogged I have no symptoms. No pain, no trouble swallowing, no sore throat (other than from the surgery) and no headaches.
This does not bode well in everything I've read. I just completed my visits to the radiation and chemo oncologists who feel that they can eradicate the cancer. I'm being scheduled to begin treatment as I write this. I'm thinking it will begin on the 21st. 7 weeks of radiation, 5 days a week and chemo 1 day a week. Having had a tonsillectomy, I'm well aware of the discomfort and pain I'm about to experience. In fact, the doctors have said this will be worse.... Ohhh Joy!
My situation is complicated by the fact I have cardio vascular disease and have had two heart attacks and bypass surgery in the last 5 years. The first was in 2007 (triple bypass) and the last was in October of 2012 (stents). Both heart attacks were mild with minimal damage to my heart. Due to that, I'll be getting cisplatin only as opposed to the "cocktail" as the other chemo drugs are a bit hard on the heart.
I'm getting a 2nd opinion at Johns Hopkins but based on my discussions with them thus far, the treatment plan being prescribed is concurrent with the latest data and standards. I will get my treatment locally so I can try to continue to work at my job through this. If surgery is required afterwards, it will most likely be done at Johns Hopkins.
I'm trying to remain positive but the reality is much different.
The chances of getting this initially are quite good but the long term prognosis gives me a 50-50 chance of being cancer free in three years. There is a good chance the cancer will return in another part of my body and at that point it doesn't bode well from what I've read.
Overall, in spite of everything, I'm in good health. I have no real symptoms. Just a bit of fatigue and a stuffy feeling in my left ear (most likely the tumor is pressing against my eustachian tube). I was a natural body builder for many years and up until recently was a regular gym goer. I have quite a bit of muscle mass which bodes well for the upcoming treatment. The doctors feel I won't need a port or a feeding tube prior to treatment. They'll play it by ear depending on how I tolerate things.
Just wanted to say hello. Anyone who has gone through this and is doing well a few years, please let me know. Any helpful hints are appreciated. Best to all facing the same path...