told 2 weeks ago

victor53 Member Posts: 97
edited March 2014 in Head and Neck Cancer #1
2 weeks ago fri. told scamous cell carcinoma.
I was being treated for TB lympendentis for the large neck mass, for 4 months.
I moved from the jungle in costa rica back to maine last year.
I went to doctor in maine for just a check up told him about lump in neck he said keep and eye on it.
I moved down to rhode island in december lump swelled up big days before xmas.
Went to emergency room day after new years.
They did ctscan chest xray blood tests and a TB test. 72 hours later the TB test was positive so i was sent to TB clinic doctors told me it was classic TB lymphendentis 99% sure. After 4 months and it getting bigger they told me it was supposed to get bigger.
They finaly got me biopsy FNA and it was positive squamos cell carcinoma 2 weeks ago.
Surgical oncolist met with me for 15 minutes looked in my mouth with light and said tonsil cancer then clipped out a couple pieces.
Yesterday i finaly got to talk to the radiation oncologist for 15 minutes she looked in my mouth with a scope flashlight and said 3cm tonsil cancer and felt or saw a spot on my tongue also.
My neck mass she said in 9x6 cm but she said it was encapsulated?
She said they are still trying to get me a medical oncologist and a pet scan.
2 weeks of knowing nothing and not sleeping is tought. I have a 2 year old and a costarican wife who is overwelmed just being here in the states without anybody. So im hanging on because i have too.
I was caught just moving changing carrers so no insurance. I am only being covered by ritecare with i guess is rhode isalnd medicaid.
So i guess i am just getting whatever treatment whenevr they can get around to it.
They said they would try and get me a medical ongolgist and a pet scan next week.
That will be 3 weeks then i guess they all decide what to do how long?
Then i wonder if i can even get a second opinion.
and how long that will take?
Any way i got a computer and started trying to figure things out myself.
Thank you all


  • ljoy
    ljoy Member Posts: 94
    I was diagnosed with tonsil cancer in March 2005. I did not start treatment until July. I'm now two and a half years cancer free.

    It is important two get a complete identification of your cancer including where the primary is located (tonsil). The lump in your neck is more than likely a lymph node. That is how I found mine. A small growth under my right ear while shaving.

    I first had the growth removed in day surgery. The biopsy returned the squamous cell finding. We then had to find the primary. I had my tonsils out three weeks later and found the primary in my right tonsil.

    I then met with radiation and chemo oncologists to determine my treatment. I had three rounds of chemo and 39 radiation treatments.

    I did get a second opinion from the M.D. Anderson cancer center in Houston, TX. My local ENT doctor could not find my primary. The tonsil surgery and finding of the primary was at M. D. Anderson.

    A PET scan should help them determine the status of your cancer and how they will proceed with treatment. This is a great site to get a lot of information and support from fellow cancer patients.

    I hope this helps and wish you the very best for a successful outcome in the near future.
  • jkinobay
    jkinobay Member Posts: 298 Member
    First off, very sorry to hear of your situation but please don't panic just yet. I know that is easier said than done. In addition to ljoy's comments I would offer that my situation was nearly identical to yours except for the TB issue. I had a growth pop up to golf ball size in April-07, it was removed in May-07 and originally diagnosed as a brancial cleft cyst. In June-07 a second opinion from MD Anderson indicated it was squamous cell carcinoma in a lymph node. DNA analysis also found positive for HPV 16 that I probably got from my mother in the birth canal(long story but plenty of evidence). Due to the presence of HPV16 Dr. Mario Luna at MD Anderson said he was certain the primary was in a tonsil and suggested a check of my tonsils. July 25-07 an ENT ran a laryngoscopy of my throat and sure enough the left tonsil was in bad shape. He removed it and the adenoids. Tonsil came back positive for SCC, adenoids were clear. Had my first Oncologist appointment early Aug-07. They said if I had to have a cancer this one was the one to have. SCC is not the most aggressive, it responds well to chemo and rad treatments, and it is one of the more common therefore better understood cancers. In Sept-Oct-07 I had 35 rads and 7 Cisplatin chemos. I just had my 6 mo. full body PET/CT scan which was cancer free.

    So hang on to the hope that yours has been caught early enough and should respond well to treatments such that you can beat it. Based on the experience of many others who supported me through my ordeal I am confident that you will do well. It will not be easy but it will be doable. Keep coming back to the boards because there is a mountain of information and experience here. God Bless and you are in my thoughts and prayers. Feel free to email me directly at anytime. JK
  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    please take a look at this: