Movement of head & neck cancers

LeoS2323
LeoS2323 Member Posts: 160
edited April 2012 in Head and Neck Cancer #1
Hi All

Have a question about our particular type of cancer hoping all you experts can answer!

Is it right to say head and neck in general doesn't tend to move around the body all that easily (mine is low to intermediate grade but officially the latter)? I know obviously every case is different but generally? Lots of things I've read seem to suggest this to be the case. I read for example on the ACS site that advanced salivary gland cancer is so rare they dont know much about the effects of chemo on it.

I have the fairly unusual salivary gland cancer MEC which my oncologist described as fairly 'indolent' in general but the waiting is killing me! The metastatic node hardly lit at all on a PET scan 3 months ago, and my primary was too small to show, so they thought I had a cyst in my neck. This meant it took another couple of months for it be be removed.

My next step is an MRI of head and neck then surgery on the 23rd April. I've felt really positive about things and I'm ready for the fight against something we can beat, my one fear is that something has changed dramatically in the couple of months which were wasted on an incorrect diagnosis. Is 2.5 months a long time in the context of this type of cancer? It hadn't done enough in 4 months from when the met turned up in my neck to alert a PET scan but can they change their nature and go on the attack?

What I had when I had my PET was what seemed to be a manageable situation, but what if it travelled somewhere else in the wasted time? I'm kind of hypersensitive worrying about this now - had some lower back pain and slightly painful urination the last few days so worrying it's got into my kidney etc.

I think I'm young at 34 to get this, but can deal with the situation I've been handed as it seems to be; but would just be awful if it had changed because of bad luck and mistakes. I just want things to start happening now - worrying about it having spread somewhere is going to be my biggest problem I think, until I get some firm answers from my doctor. I'm sure many of you must have had the same feelings!

Hope you can set my mind at ease a little....:-)

All the best

Leo

Comments

  • KTeacher
    KTeacher Member Posts: 1,103 Member
    #2
    Happy Birthday
    to me! I love this number getting bigger (58). I wish that I had some words of wisdom for you, after all I am old enough to be your mother (!), but it is always on the back burner. I went to have a lump removed from my lip in 2009 but the doctor removed something close to the lump that was of more concern to him. After the swelling went down the original lump was still there. Took one more year to have it removed, no sign of cancer! One week later, scc perineural invasion--MRI in the afternoon, PET scan the next day and Stanford--surgery the next week. I guess that I didn't have much time to wait and think once it got diagnosed. I can't live with the what if's. Fight, fight, fight, recover and then enjoy life. It might be a bit different but it is still good. Yes, every bump we think the worst, but we get through it. Good luck to you. Get your support team ready. Stay on this site for support.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #3
    LEO
    From what I have read and MD conversations...yes, it usually tends to not move...but that's not an absolute.

    More than likely you have nothing going on as for cancer movement. But if it makes you feel better and as a sanity check, you can always have your MD's check you out.

    Best,
    John
  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #4
    Skiffin16 said:

    LEO
    From what I have read and MD conversations...yes, it usually tends to not move...but that's not an absolute.

    More than likely you have nothing going on as for cancer movement. But if it makes you feel better and as a sanity check, you can always have your MD's check you out.

    Best,
    John

    Salivary Gland MEC
    Leo,

    The same thought went through my head in the beginning but my Dr. assured me that this kind of cancer is very slow growing and it is highly doubtful it spread. He said he thought my tongue tumor(primary)had been there for years and finally had spread to my lymph nodes which is normally what happens. It is just not an aggressive type of cancer.

    Once I went in for RT they took a CT scan to know where to point the beam. My Onc told me later that he also checked other gland sites like my breast and lungs and found nothing. So they will most likely do the same. Other than the lymph nodes, it is a salivary gland cancer and tends to stick with those. Usually the minor ones but it also shows up in the major parotid gland. My surgeon removed my right one as a precaution so all I have left is my one major salivary gland. It will have to work twice as hard now. But so far so good.

    Please try to stop worrying. Put some trust into your doctors advice and if you want, get a second opinion if it makes you feel better.

    I am going to add you as a friend so if you ever need to chat about your condition feel free to e-mail me.

    Tommy
  • LeoS2323
    LeoS2323 Member Posts: 160
    #5
    Skiffin16 said:

    LEO
    From what I have read and MD conversations...yes, it usually tends to not move...but that's not an absolute.

    More than likely you have nothing going on as for cancer movement. But if it makes you feel better and as a sanity check, you can always have your MD's check you out.

    Best,
    John

    John and Tommy
    Thanks for the reassurances guys. Have found you two to be very reassuring, positive and calm posters on here which is perfect for me at my early stage. I seem to be asking all the questions at the moment, having just been diagnosed a week ago and not really started with the process yet I am a bit of a novice! When I get through this I am determined I will come back regularly and help those who are just starting out by sharing my experiences.

    I took your advice and went to see my GP today to set my mind at rest, and he checked me out and said no problems. It was the first time I had met him since my diagnosis and he also said 'if you are going to have cancer this is one of the 'better' ones'! I know its relative but it was nice to hear. He went through the pathology report again too and said it all looked positive for me so it was all good stuff. Just want to get on with the scan and surgery now!

    Never thought I would be so eager to be sliced and diced but I want him to cut this little b*stard out and get it done!

    Thanks again for your kind words, you guys make me so glad I registered on here!

    All the best

    Leo
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #6
    LeoS2323 said:

    John and Tommy
    Thanks for the reassurances guys. Have found you two to be very reassuring, positive and calm posters on here which is perfect for me at my early stage. I seem to be asking all the questions at the moment, having just been diagnosed a week ago and not really started with the process yet I am a bit of a novice! When I get through this I am determined I will come back regularly and help those who are just starting out by sharing my experiences.

    I took your advice and went to see my GP today to set my mind at rest, and he checked me out and said no problems. It was the first time I had met him since my diagnosis and he also said 'if you are going to have cancer this is one of the 'better' ones'! I know its relative but it was nice to hear. He went through the pathology report again too and said it all looked positive for me so it was all good stuff. Just want to get on with the scan and surgery now!

    Never thought I would be so eager to be sliced and diced but I want him to cut this little b*stard out and get it done!

    Thanks again for your kind words, you guys make me so glad I registered on here!

    All the best

    Leo

    Easier...
    It's easier to help and reassure once you've been kicking around for a few years post treatment.

    I'm sure you'll be a great asset to the forum for many years to come.

    Best,
    John
  • LeoS2323
    LeoS2323 Member Posts: 160
    #7
    Skiffin16 said:

    Easier...
    It's easier to help and reassure once you've been kicking around for a few years post treatment.

    I'm sure you'll be a great asset to the forum for many years to come.

    Best,
    John

    Stats
    Thought this would be worth posting as it being one of the things that had worried me intensely since diagnosis, it may be of some comfort to others recently joining. My oncologist is a professor and is involved 50/50 in treatment and research (he has been fantastic with me).

    He said that they recently did a study of head & neck cancer metastasis, and of 1800 patients across the whole spectrum of HNC the rate of distant metastasis to other organs etc. was just 4%. I know every case is very different and there are no guarantees, but I think this kind of stat can be comforting to the newly diagnosed especially - that the ache you have somewhere else is statistically very unlikely to be movement of your cancer.

    We are far from lucky any of us, but I suppose this further goes to prove that ours is one of the more manageable ones in general terms.

    All the best

    Leo
  • Pam M
    Pam M Member Posts: 2,196
    #8
    LeoS2323 said:

    Stats
    Thought this would be worth posting as it being one of the things that had worried me intensely since diagnosis, it may be of some comfort to others recently joining. My oncologist is a professor and is involved 50/50 in treatment and research (he has been fantastic with me).

    He said that they recently did a study of head & neck cancer metastasis, and of 1800 patients across the whole spectrum of HNC the rate of distant metastasis to other organs etc. was just 4%. I know every case is very different and there are no guarantees, but I think this kind of stat can be comforting to the newly diagnosed especially - that the ache you have somewhere else is statistically very unlikely to be movement of your cancer.

    We are far from lucky any of us, but I suppose this further goes to prove that ours is one of the more manageable ones in general terms.

    All the best

    Leo

    Wow, Leo
    THESE stats I'll pay attention to! Thanks
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #9
    Pam M said:

    Wow, Leo
    THESE stats I'll pay attention to! Thanks

    Ditto...
    Where's ditto when you need him, LOL...
  • osmotar
    osmotar Member Posts: 1,006
    #10
    LeoS2323 said:

    Stats
    Thought this would be worth posting as it being one of the things that had worried me intensely since diagnosis, it may be of some comfort to others recently joining. My oncologist is a professor and is involved 50/50 in treatment and research (he has been fantastic with me).

    He said that they recently did a study of head & neck cancer metastasis, and of 1800 patients across the whole spectrum of HNC the rate of distant metastasis to other organs etc. was just 4%. I know every case is very different and there are no guarantees, but I think this kind of stat can be comforting to the newly diagnosed especially - that the ache you have somewhere else is statistically very unlikely to be movement of your cancer.

    We are far from lucky any of us, but I suppose this further goes to prove that ours is one of the more manageable ones in general terms.

    All the best

    Leo

    %'s
    When I spoke with my rad onco, he told me the same percentages, but another thing he said that I found interesting was that H&NC should have the stages reclassified, because even though mine was diagnosed as stage 4a based soley on the the size (and just barely) of the nodule on my neck never meant it that it wasn't cureable and in fact is/was very treatable.

    Blessing to all


    Linda
  • LeoS2323
    LeoS2323 Member Posts: 160
    #11
    osmotar said:

    %'s
    When I spoke with my rad onco, he told me the same percentages, but another thing he said that I found interesting was that H&NC should have the stages reclassified, because even though mine was diagnosed as stage 4a based soley on the the size (and just barely) of the nodule on my neck never meant it that it wasn't cureable and in fact is/was very treatable.

    Blessing to all


    Linda

    Stages
    Yeah I wondered about this - seems to me that stage IV in our form is rarely as dramatic as it is in most other forms of cancer. In fact it seems HNC very often first shows in a node as it hides in the mouth, but still has one of the highest cure rates.

    Perhaps it does need a different classification, but then I guess perhaps others would too and where do you stop? I think it's important for people to come to a site like this and understand our specific cancer - there must be some people get the stage IV diagnosis, look it up and fly into a panic! Of course the lower the stage the better in general, but it's important people arriving here know even if it's in local nodes HNC is very beatable.

    All the best

    Leo
  • Elfloridita
    Elfloridita Member Posts: 5
    edited August 2016 #12
    Hi Tommy

    Ggggg

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