Squamous Cell Carcinoma as Secondary Cacer. Unknown Primary

Warren07
Warren07 Member Posts: 4
edited September 2016 in Head and Neck Cancer #1

Hi , I'm a 62y/o Aussie male .Retired Hotel Publican & Head chef. Married for 35 years. Retired for 8 years . Spent 6 travelling around OZ in our 28' caravan.  

I have been diagnosed, with SCC. of the Lymph Nodes on the left side of my neck.Ultrasound FNA was done.

CT with contrast of head and neck . To conferm the SCC. But couldnt show Primary

 I have seen a ENT specialist who performed a  proceedure with a camera down my nose to my neck. Again no primary found. The ENT specialist, has now ordered a PET scan for this Friday. I'ts the unknown that scares me

Part of me wants to know what the primary cancer is. The other half doent want to know .

I suppose this journey is just beginning. And having cancer just has'nt hit me yet. And untill treatment starts  It probably wont really hit me. I'm really just trying to process all of this

 I have a great wife to support me. we have both had a cry. Told our 3 children & our grand children

 But untill tests are done & treatment starts . I really dont know what to think

Warren07

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    edited September 2016 #2
    welcome

    Warren07,

    Welcome to the H&N forum, sorry that you are here, but thank goodness for those little lymph nodes, which are the warning signs to danger.

    I guess your FNA  was positive and your upcoming PET will show ALL areas of activity (good and bad).  It provides a road map for your team to develop a treatment scenario.

    You may have to slow down on the OZ tour, to get your bearings once parameters are set.  Then a few months of treatment and back to OZ.

    Best of luck.

    Matt

  • Warren07
    Warren07 Member Posts: 4
    #3
    CivilMatt said:

    welcome

    Warren07,

    Welcome to the H&N forum, sorry that you are here, but thank goodness for those little lymph nodes, which are the warning signs to danger.

    I guess your FNA  was positive and your upcoming PET will show ALL areas of activity (good and bad).  It provides a road map for your team to develop a treatment scenario.

    You may have to slow down on the OZ tour, to get your bearings once parameters are set.  Then a few months of treatment and back to OZ.

    Best of luck.

    Matt

    Thanks matt

    Yes test was positive for cancer in the lymph nodes. Dr's have told me that's the secondary cancer. I suppose it will become real . Once the PET scan results are in 

    Warren07

  • behindthepen
    behindthepen Member Posts: 11
    edited September 2016 #4
    very similar story

    Back in June/July, found some slightly inflamed nodes, assumed it was some weird infection.  They found the SCC with the FNA, but there was no obvious primary site.  Couldn't find with PET scan.  ENT did surgery, thought it might be in tonsils, instead found in base of tongue.  it was nuts to get the "you have cancer that spread but we don't know where it came from" diagnosis, but feeling a little better that we know the source now.  Of course, that means in 2 weeks I start 7 weeks of daily radiation and weekly chemo, with all the side effects that were listed off to me this morning.    Everyone assures me this will be a blip in the long term, but the next 3 months are not oging to be fun.  I am looking foward to Christmas when I should be bouncing back.

    Good luck my man.

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #5
    behindthepen said:

    very similar story

    Back in June/July, found some slightly inflamed nodes, assumed it was some weird infection.  They found the SCC with the FNA, but there was no obvious primary site.  Couldn't find with PET scan.  ENT did surgery, thought it might be in tonsils, instead found in base of tongue.  it was nuts to get the "you have cancer that spread but we don't know where it came from" diagnosis, but feeling a little better that we know the source now.  Of course, that means in 2 weeks I start 7 weeks of daily radiation and weekly chemo, with all the side effects that were listed off to me this morning.    Everyone assures me this will be a blip in the long term, but the next 3 months are not oging to be fun.  I am looking foward to Christmas when I should be bouncing back.

    Good luck my man.

    welcome

    behindthepen,

    Welcome to the H&N forum, sorry that you are here, but you might as well know what may be coming.  You are correct, the primary can be tough to find, if at all, but the scans and experience give the doctors a very good idea on treatment.

    My journey started on 11/11/11 and I heard those fateful words on December 23, 2011 (Merry Christmas).  It definatly was a “blip”.  For some a big blip or BLIP, BLIP and for some a small blip or blip, blip.  I hope you have the small version.

    You are welcome to start anew thread and introduce yourself and you may want to check out the superthread.

    Matt

  • Warren07
    Warren07 Member Posts: 4
    edited October 2016 #6
    CivilMatt said:

    welcome

    behindthepen,

    Welcome to the H&N forum, sorry that you are here, but you might as well know what may be coming.  You are correct, the primary can be tough to find, if at all, but the scans and experience give the doctors a very good idea on treatment.

    My journey started on 11/11/11 and I heard those fateful words on December 23, 2011 (Merry Christmas).  It definatly was a “blip”.  For some a big blip or BLIP, BLIP and for some a small blip or blip, blip.  I hope you have the small version.

    You are welcome to start anew thread and introduce yourself and you may want to check out the superthread.

    Matt

    The PET scan showed only the

    The PET scan showed only the Lymph glands in my neck , is cancer . The nodes are so swollen and painfull . I'm on 200mg of morpheme twice a day. Plus antibiotics. I'm down for exploratory surgery Friday the 7th  October.

    lymph clods are the size of a lemon at the moment. I just want to know where the primary is so we can fight it 

    Warren

  • megangray333
    megangray333 Member Posts: 2
    edited October 2016 #7
    Be Careful

    Hello! I am very sorry to hear about your diagnosis. I am a survivor of salivary gland cancer, and I am 17 years old. I recently had the opportunity to job shadow my surgeon, and he specializes in SCC. There are a lot of misconceptions about SCC so make sure that you are getting the correct facts when you are researching your cancer. Best of luck to you, you will be in my prayers!!

    Megan Gray

  • phrannie51
    phrannie51 Member Posts: 4,716
    #8
    Warren....there are folks on here

    who never found the primary, and they're still here to talk about it.  The exploratory may find the primary tumor or it may not.  Sometimes our bodies fight off the primary just not before it gets into the lymph nodes.  Don't panic about it.

    Welcome to behindthepen, too!!  Hi!

    p

  • dvr99174
    dvr99174 Member Posts: 19
    edited October 2016 #9
    Welcome to the club that nobody wants to join

    i too had squamous cell carcinoma I the perotid gland. That was behind and below my left ear. I understand your fear, the doctor just told me after the byops. I am 2 months from my last surgery (not as bad as you think) I will start radiation on Tuesday 25 October 2016. 

    Accepthing that you have cancer is very hard but, once you do that it gets a little easie. Thankfully you have family as a support system, you'll need that. You have us here to help you on your journey too. 

    When you (both) feel like crying do it, do not hold your emotions or fears in  when you need to talk come to the chat room there are people that can help you. As a caregiver your wife is welcome to join too.

    Again, sorry to hear about your diagnosis.

    you can beat this

    Arthur

     

     

  • Dtanman
    Dtanman Member Posts: 11
    #10
    SCC unknown primary

    Warren07 welcome sorry your here, I to HAD scc unknown primary, and they never did find the primary. But don't worry yourself about it.Once surgery is over with it's gone. You need to prepare for what comes next. The chemo and radiation treatments that follow. Tomorrow 10/23/15 was the day I learned of my new adventure. The best thing to do is listen to the doctors advice, if he says feeding tube get it, this can be a saver in the long run, drink lots of water just to keep swallowing. You can actually lose the ability to swallow if you don't. I didn't know this but you can. I could go on and on but I have to stop , wishing you luck and take care. Dan

       

  • Bill_Litchfield
    Bill_Litchfield Member Posts: 19
    #11
    G'day Mate

    Another aussie here. Living in the US. Diagnosed Feb 4, 16 - T2N1-2aM0 Stage IVa Primary squamous cell carcinoma of oropharynx. I am now almost six months out of treatment. I was not a candidate for surgery and my treatment was chemo/rads. Expecting to have my first post treatment scan next month and looking forward to my first official No Evidence of Disease (NED). I can only agree with all that has been said above. This site and all the people who are here, are a god send and I think membership on this site should be prescribed along with chemo and radiation prescriptions. Everybody has a different experience with this enemy but you can bet that someonelse is likely to have experienced what you are experiencing and can give you advice on how to deal with it. In the rare case when it is 'new' you get the best advice always, which is 'tell your team about it, now'.  Be positive in your attitude, let your family and friends help, listen to your medical team and come here. You will get the help you need and will likely be able to help someonelse in their fight. I wish you all the best. Bill 

  • LeoS2323
    LeoS2323 Member Posts: 160
    #12
    Unknown Primary

    Hi Warren

    Welcome to the unknown primary club - odd bunch of misfits that we are...:-) I'm British, from Liverpool.

    I was diagnosed with mucoepidermoid carcinoma (salivary gland cancer) in my neck with unknown primary back in March 2012.

    It is a bit of a strange situation to be in and mentally challenging because of the uncertainty - but I do think there are positives to it from my time researching that weird place to be in. The first one being if your primary is so small its not showing up on all the sophisticated scans they have these days then its pretty small! And small is definitely good for prognosis. I had a neck dissection removing over 30 lymph nodes along with a tonsil and part of the base of my tongue and no further cancer was found. The second positive is you never know - it may never appear...

    I'm 5 years out in March and will be officially 'cured' - just one more clear MRI scan and I'm home. My primary has never shown itself, which is definitely a bit odd. At first like you I wanted to find it so we could attack it, but as time has gone by and the prospect of it never appearing increased I've been more and more happy for it to stay away! The doctors can't seem to explain this phenomenon although the two theories mentioned were: firstly are either the body's immune system kills the primary but not before it releases some cells elsewhere, or secondly a piece of cancerous salivary gland tissue has become detached and drifted into the lymphatic system, so that in effect was the primary.

    Either way here I am - well as can be and closing in on five years clear. Technically still unknown primary until March! My kids were 10 months and 3 years old when I was diagnosed and I wondered how much of them I would see. But I celebrated my little boy's 6th birthday on Tuesday and my daughter is 8 now and goodness me were they worth fighting for! I'll be around to see them grow up and nothing is going to stop me.

    Really hope that you have a similarly positive outcome - best of luck cobber!

    Cheers - Leo

    PS Hi Phrannie - hope you are keeping well my old 'bus mate'! :-)

Discussion Boards