My name is Edgar I'm a 42 y/o male living in Miami Florida. I first noticed a small lump in the mid neck area on the left side last November.

I had a fine needle biopsy done on February 2, 2006 which resulted in the diagnosis of squamous cell carcinoma with an unknown primary.
Upon the result of the CT scan my doctor recommended surgery followed by radiation and chemo which I am starting tomorrow at the Sylvester Cancer Center. He evaluated the tumor to be an advanced stage type IVa N1 M0 which means it is metastatic, has spread to one or several lymph nodes and has not spread to any other organs.

My surgery was scheduled three weeks ago but when I woke up the lump was still there. My doctor told me there were to many organs involved and that he decided not to remove the metastizing lymph nodes. He had biopsied the tonsil and back tongue area and found the primary site in the left tonsil. He suggested radiochemotherapy and suggested I start treatment ASAP.

In my first appointment with an oncologist I was given two types of treatment options: a standard consisting of seven weeks of radiation plus chemo in the way of cisplatin once every two weeks and a trial treatment which they also name protocol, which consists of seventeen weeks of treatment starting with chemo (cisplatin + Erbitux) once a week for seven weeks followed by ten weeks of radiation twice a day. I declined the protocol and chose the standard. More or less is has the same percentages with the protocol taken an advantage over recurring cancer.
Was it the right choice? has anyone here gone through the protocol treatment?
I also met with the radiologist who also gave me two option plans: conventional radiation and IMRT. This last one provides more coverage of the submandibular area and thus may spare the salivary glands where as the conventional definately will not spare them. I had to wait two weeks for this treatment option due to the fact you have two simulations before you start treatment.

Anyhow tomorrow is the start of my plan and I have high expectations and an optimistic regard of the outcome.

I wish all of you here (either patients or caregivers) who are going through the same situation to be well and that you are able to withstand the tenacity of these drugs and therapies. My prayers are with you, may God bless you all.
Edgar

Hello Edgar,

Your course of treatment is similar to several others here. It sounds like your medical caregivers are on track with what seems to be the best approach. IMRT is probably the better choice if you can get it. Less lasting side effects especially salivary function. You might search this forum for tips about keeping your weight up and be sure you drink plenty of water. Let us know if you have further questions.

Take care

I have a slightly different understanding about metastasis from Darrell. I always think that T refers to the tumor size at the primary site while N stands for the size of tumors of lymph nodes metastasis while M refers to the distant spread to other organs like lung or liver. In Edgar's case, I think his tumor is not confined to the primary site if it is N1. Just hope that some knowledgeable posters here can clarify this.
Anyway, all the best to your treatment and I'm sure you can go through it just like most of us here, Edgar.

Karen

Karen, What you said is my understanding as well. N refers to how many lymph nodes in th neck the cancer has metastasized to, and M refers to how many sites of distant metastasis. I hope your treatment is both effective and smooth, Edgar. There are lots of people here who have been through your treatment plan, so feel free to ask questions as issues arise.

Nelie

This subject has been recently discussed and Darrell has posted some inaccurate or incomplete information about staging. This link has very good info:

http://www.oralcancerfoundation.org/facts/stages_cancer.htm

The M is "distant" metastasis. Lymph node involvement is not "distant" but is still metastatic. Ipsilateral means on the same side.

Hello Mark, Karen & Nelie . . I am just getting back home after 8 days at the hospital. (Sylvester Cancer Center). I developed an acute infection of the affected lymph nodes and had a high fever for 10 days. The day after I posted I went in. Anyhow I'm recovered now and I started my treatment on May 4.
Just three days later I had already lost taste and I'm finding it difficult to eat. I've lost 20lbs. What did you all do and eat to keep the weight on? This seems to me one of the most difficult of the side effects of radiation.
Thank you for your words of encouragement.

Edgar