Looking for people with the same type

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OldsaltGB
OldsaltGB Member Posts: 5
edited April 2015 in Head and Neck Cancer #1

Hi All,

I am new here and I am looking for information and people with the same thing I have. I come from the UK and can find very little info about the type of cancer I have on the sites over here. Was told to have a look at the american ones, and this ones gives lots of good information.

So far I have been told that I have small cell neuroendocrine tumour in the nasopharynx with secondaries in the lymph nodes in the neck.

We have been told this is a rare type of cancer and it's even rarer to have it in the nasopharynx my ENT consultant that he had to get the books out for this.

Had CT, Biopsy and PET CT done, just waiting to see what the way forward, Surgery, Chemotherapy or Radiotherapy will find out next week.

 

Gary

 

Comments

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #2
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    hi, Gary, and welcome to our

    hi, Gary, and welcome to our family, although I wish you didn't need to be here.  I know others have had cancer in the nasal area but not sure exactly what you have.  but, the others will chime in and help if they can.  my cancer was larnyx so i'm no help but i wanted to say hello and welcome.  i will be praying for you.

    God bless you,

    dj

  • phrannie51
    phrannie51 Member Posts: 4,716
    #3
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    Hi there and welcome to the

    club that nobody wants to join!  I have never heard of this type of tumor....tho I did have SCC of the nasopharnyx with mets to the lymph nodes.....so I know part of the story.  Smile  It sounds as tho they treat it the same way as they do SCC.....rads and chemo....when you say "surgery", is that the removal of the lymph nodes? 

    p 

  • OldsaltGB
    OldsaltGB Member Posts: 5
    #4
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    phrannie51 said:

    Hi there and welcome to the

    club that nobody wants to join!  I have never heard of this type of tumor....tho I did have SCC of the nasopharnyx with mets to the lymph nodes.....so I know part of the story.  Smile  It sounds as tho they treat it the same way as they do SCC.....rads and chemo....when you say "surgery", is that the removal of the lymph nodes? 

    p 

    Thanks for your welcome.
    For

    Thanks for your welcome.

    For P, Yes I belevie they some times take out the lymph nodes in the neck.

     

    Gary

  • Guzzle
    Guzzle Member Posts: 710
    #5
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    OldsaltGB said:

    Thanks for your welcome.
    For

    Thanks for your welcome.

    For P, Yes I belevie they some times take out the lymph nodes in the neck.

     

    Gary

    UK

    Hi Gary. I'm Gary from Liverpool but had scc tonsil. Good luck mate.

  • phrannie51
    phrannie51 Member Posts: 4,716
    #6
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    OldsaltGB said:

    Thanks for your welcome.
    For

    Thanks for your welcome.

    For P, Yes I belevie they some times take out the lymph nodes in the neck.

     

    Gary

    Gary....there are many people here

    who have had the neck dissection to remove the lymph nodes.....I wasn't one of them.  My Drs. decided to wait and see if the radiation destroyed the cancer in my lymph nodes before going in and removing them.  As it turned out, the radiation did just that.....and I never did have to have the surgery.  To this day (2 1/2 years out of treatment), my ENT still keeps a close eye/feel of the lymph nodes in my neck.

    p

  • OldsaltGB
    OldsaltGB Member Posts: 5
    #7
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    phrannie51 said:

    Gary....there are many people here

    who have had the neck dissection to remove the lymph nodes.....I wasn't one of them.  My Drs. decided to wait and see if the radiation destroyed the cancer in my lymph nodes before going in and removing them.  As it turned out, the radiation did just that.....and I never did have to have the surgery.  To this day (2 1/2 years out of treatment), my ENT still keeps a close eye/feel of the lymph nodes in my neck.

    p

    Thanks for the info it's good

    Thanks for the info it's good to know that they don't always need to come out. Will find out on Tuesday what they are planing for the treatment.

    Gary

  • HobbsDoggy
    HobbsDoggy Member Posts: 276
    #8
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    Same Area, but Not Quite the Same

    I had cancer in the same area, but it was an unknown primary, so no clear tumor. It had spread to a couple of my lympth nodes which they took out by surgery.  My cancer doc wanted those out to make aure what type of cancer it was and to just gret rid of them for starters.  I then had radiation and chemo.  7 weeks of radiation and chemo.  It was not fun and towards the end I was saying I would not do it if I had know, now that it is over it was totally worth the pain and mess my life was in.  I am well over two years out from my last treatment and doing fine.  Make sure your write down the questions you have and write down the answers you get, I did not do that and it was a mistake.  All in all, it was very difficult, but very doable.  Keep asking questions on here and let us know how you are doing.  

    If there is a local cancer support group I recomend you try it to see if it helps.

  • wmc
    wmc Member Posts: 1,804
    #9
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    Welcome Gary to the H&N group.....

    I had SCC of the larynx, but did have 86 lymph glands remover as a precaution. They took 48 on the left and 38 on the right side. I had sections 2~5 dissection done, they left #1 alone which is under the chin. My right side has all the feeling back but the left is where they did most of the work from including removing my larnyx and all the glands so I won't get much feeling back. I'm numb from the left ear to the center on my chin and the neck. It was not that bad to have done. Your's is more rare and will usually have chemo and radiation, which I never had, only surgery for mine but I fine and doing good. Remember this support group is open 24/7 and very willing to listen. We do under stand the fear and being able to talk to ones that understand what you aer saying.

    Bill   [Cetneral California.]

  • OldsaltGB
    OldsaltGB Member Posts: 5
    #10
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    wmc said:

    Welcome Gary to the H&N group.....

    I had SCC of the larynx, but did have 86 lymph glands remover as a precaution. They took 48 on the left and 38 on the right side. I had sections 2~5 dissection done, they left #1 alone which is under the chin. My right side has all the feeling back but the left is where they did most of the work from including removing my larnyx and all the glands so I won't get much feeling back. I'm numb from the left ear to the center on my chin and the neck. It was not that bad to have done. Your's is more rare and will usually have chemo and radiation, which I never had, only surgery for mine but I fine and doing good. Remember this support group is open 24/7 and very willing to listen. We do under stand the fear and being able to talk to ones that understand what you aer saying.

    Bill   [Cetneral California.]

    Update

    Back from Hospital today and everything looking up will start treatment by end of this week with chemo 2 x 3 week rounds then CT if everything ok then another 2 rounds. RT to follow sometime in july, also seen the dentist today as well so for only 4 back ones to come out but will now be after the chemo.

    At last I now were we are heading and what is come

     

    Gary

  • wmc
    wmc Member Posts: 1,804
    #11
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    OldsaltGB said:

    Update

    Back from Hospital today and everything looking up will start treatment by end of this week with chemo 2 x 3 week rounds then CT if everything ok then another 2 rounds. RT to follow sometime in july, also seen the dentist today as well so for only 4 back ones to come out but will now be after the chemo.

    At last I now were we are heading and what is come

     

    Gary

    Thanks for the update Gary

    It can and usually is a very bumpy road to go down, but many have been down that road and there is light at the end of the tunnel. This is a great support group and great listeners as well when you have a bad day and just need to vent, or just ask questions. We're open 24/7...........

    Bill

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