Squamous

mrapp
mrapp Member Posts: 30
edited September 2011 in Head and Neck Cancer #1
Hi everyone
This message board has really been a blessing to me. I have sat in front of my lap top for hours reading and learning a lot about what I can expect.
I am 48 yr old married male I am 5' 9" and weigh 165 lbs. I was diagnosed with squamous cell on 6/20/11. The cancer was on my left lymph-node. The doc said it was metastatic but the pet didn't show a primary. This concerns me .. if I have a cancer they are calling a secondary shouldn't they be able to find the primary? (Should this concern me?) The doc decides I need only 40 radiation treatments on both lymph-nodes and tonsils. Again I am concerned why not surgery or kemo ?(Should I be concerned?) Started radiation on July 06, 2011. August 11, 2011 I get a feeding tube, I have lost 20 lbs. A week later I have to get hydrated two days in a row at the hospital. Then doc says my neck is too cooked inside and out and I must take a 5 day break. I finish my radiation on Sept. 02, 2011 with only 39 treatments.
Today is Friday Sept. 30, 2011 and I am able to eat salad and steak chopped up very small. I still sometimes get sick (usually at night) and I usually have lots of mucous.
I guess I am getting through this ok considering all I have read I am blessed. I have a great care giver that has lived this with me.
Hondo put a message out there about being alpha male. Well being an officer of the law , and living as alpha male for many years, then your wife and kids seeing you brought to your knees is a way to humble anyone. My GOD, my wife and family .. the most important things in my life.
God Bless everyone and every night I pray for everyone on this message board.



Mitch

Comments

  • Greend
    Greend Member Posts: 678
    #2
    Life's events
    Isn't it amazing how single events in our lives can and do shuffle our priorities in such a drastic manner and change the way we see ourselves and life in general?

    Hang in there brother.
  • osmotar
    osmotar Member Posts: 1,006
    #3
    Welcome
    Hi Mitch,

    Welcome to the discussion board. June 2011 I was diagnosed with SCC also. Found a small lump on the right side of my neck, my internist sent me to an ENT, did a needle biopsy , which was inconclusive, then a PET scan at which time he said he was removing my tonsils. had that done on June 27th, only took the right tonsil that was cancerous. He then sent me to an oncologist.. she scheduled me for 3 infusions over a 9 week period, had my first infusion on Aug 8th, all day treatment of fluids,anti nausea meds, Cisplatin, Toxtore, and a 5FU pump that I wear from monday thru friday, the following mondays I get an injection of neualasta to maintain my white blood cell count, 2nd infusion was Sept 12, and the 3rd was scheduled for Oct 3rd, but because of a low platelet count that may be delayed for 1 week. All in all the chemo treatments have been relatively easy for me. The next step will be radiation which will be everyday for any where from 5 to 7 weeks, with a chemo treatment 1 time per each week. I may not be an alpha male, but certainly an type A personality, and with this treatment I have learned that I don't have any control, except to do what the doctor says and and that my journey is to take it one day at a time. I have a wonderful support group with my family and friends, plus I keep a positive attitude. As far as your question about treatment, like you I've read that some people have neck surgery and radiation, or chemo and radiation, or any other combination , I asked my onco about surgery and she said she didn't think I would need it. I will say after 2 infusions the lump that I found and grew to the size of a lemon, is no longer there. So I guess treatment for the most part is the judgement of your doctor as to what they determine will help us the best.

    Any way, welcome, as you have already found out by reading posts on this site, there are great people here and a wealth of knowledge....don't be afraid to ask because there is always someone who went thru or is going thru something similar.

    Take care, blessings and light.

    Linda
  • mrapp
    mrapp Member Posts: 30
    #4
    osmotar said:

    Welcome
    Hi Mitch,

    Welcome to the discussion board. June 2011 I was diagnosed with SCC also. Found a small lump on the right side of my neck, my internist sent me to an ENT, did a needle biopsy , which was inconclusive, then a PET scan at which time he said he was removing my tonsils. had that done on June 27th, only took the right tonsil that was cancerous. He then sent me to an oncologist.. she scheduled me for 3 infusions over a 9 week period, had my first infusion on Aug 8th, all day treatment of fluids,anti nausea meds, Cisplatin, Toxtore, and a 5FU pump that I wear from monday thru friday, the following mondays I get an injection of neualasta to maintain my white blood cell count, 2nd infusion was Sept 12, and the 3rd was scheduled for Oct 3rd, but because of a low platelet count that may be delayed for 1 week. All in all the chemo treatments have been relatively easy for me. The next step will be radiation which will be everyday for any where from 5 to 7 weeks, with a chemo treatment 1 time per each week. I may not be an alpha male, but certainly an type A personality, and with this treatment I have learned that I don't have any control, except to do what the doctor says and and that my journey is to take it one day at a time. I have a wonderful support group with my family and friends, plus I keep a positive attitude. As far as your question about treatment, like you I've read that some people have neck surgery and radiation, or chemo and radiation, or any other combination , I asked my onco about surgery and she said she didn't think I would need it. I will say after 2 infusions the lump that I found and grew to the size of a lemon, is no longer there. So I guess treatment for the most part is the judgement of your doctor as to what they determine will help us the best.

    Any way, welcome, as you have already found out by reading posts on this site, there are great people here and a wealth of knowledge....don't be afraid to ask because there is always someone who went thru or is going thru something similar.

    Take care, blessings and light.

    Linda

    Linda and Greend


    Thanks for reading and posting. It feels good to be with a family that is going thru what I am. Honestly it is the scariest situation I have ever been in. I will be praying for you and please keep me posted on what goes on.

    Mitch
  • osmotar
    osmotar Member Posts: 1,006
    #5
    mrapp said:

    Linda and Greend


    Thanks for reading and posting. It feels good to be with a family that is going thru what I am. Honestly it is the scariest situation I have ever been in. I will be praying for you and please keep me posted on what goes on.

    Mitch

    Will Do
    This came completly out of left field for me, not a smoker or a drinker, so that was not the root cause.

    Ditto on the prayers and good thoughts.

    Linda
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #6
    Mitch
    I had SCC stage 4 unknown primary also. I had a neck dissection with 30 rads and no chemo. I finished treatment on 5/15/09. I was concerned that they never found my primary. There have been quite a few of us where they never found the primary.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #7
    Welcome Mitch
    Welcome to the forum Mitch....

    STGIII SCC HPV+ Tonsils and Lymphnode - Jan 2009.

    Great people here and tons of experience and Information.

    Thoughts & Prayers,
    John

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