Ssc now lung cancer?

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Reillypp
Reillypp Member Posts: 20
in Head and Neck Cancer #1

i finished 40 rads for squamous cell carcinoma base of tongue metastasized to lymph.  At a pet scan 1/2 through treatment, original cancer nearly gone, there was some lighting up in the upper lung region but the radiologist and dr weren't worried.  It has been 7 weeks since treatment ended.  During treatment I was doing well other than minor complaints, the last month has been hell but I continued to exercise, the last 10 or so days I can't breathe well enough to do cardio exercise.  I am scared to death it has spread.  I have another pet scheduled for Tuesday.  I can't handle it if they tell me it's spread.  I was told I had a highly metastatic cancer and got a lifetimes worth of radiation.  Do you think this could be spread or any other thoughts? Help please

 

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  • JC F
    JC F Member Posts: 74
    #2
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    It's difficult...

    ...to not let the mind wander off on every single thing that happens to our bodies and to think in negative terms after coming through what we have had to deal with. It could be a myriad of things related to the initial treatments and not a spread of cancer. It's not cancer until they say it's cancer and that's the thought process you have to hold on to. If the doctors were not initially concerned at the halfway mark then it's very feasible that it is not a spread and something else causing the problem at the moment. You could be putting your body through too much if you are exercising and doing cardio that soon after treatments. You need rest and recuperation. Hang tough and let them sort it out first before thinking the worst. 

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #3
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    i think once we've had cancer

    i think once we've had cancer anything new is "cancer" before we really know anything.  i think you should call your doc and express your concerns and she what he wants to do.  I doubt its a recurrence already but its always better to be safe than sorry.  praying its nothing more than your mind running away with you.  call the doc.

    God bless you,

    dj

  • Laralyn
    Laralyn Member Posts: 532
    #4
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    I had SCC of the left tonsil

    I had SCC of the left tonsil and lymph nodes (Stg. IV) a couple years ago and went through chemo and radiation. I had a similar fear about a year and a half after treatments ended. I would find myself at my desk and suddenly feel unable to breathe. It was what I imagined asthma must feel like. I was overall short of breath just walking around but the periodic attacks were scary. I hoped it would go away and finally went to a doctor while traveling overseas because it had gotten so bad. It turns out I had bad acid reflux, which can tighten your esophagus and cause breathing problems and even asthma-like attacks. 

    Part of what made me delay getting it checked out for a week or so was fear of lung cancer. So I've been in similar shoes. It's normal to have that voice in the back of your head. Meditation really helps--it lets you control your own thoughts and shut down that little voice. Try to focus on the things that matter to you in your life, on the moments you've stayed alive to cherish. That will help you get through the waiting time to see the doctor and get results.

    Hang in there! I'll be thinking of you. :-)

  • Reillypp
    Reillypp Member Posts: 20
    #5
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    Laralyn said:

    I had SCC of the left tonsil

    I had SCC of the left tonsil and lymph nodes (Stg. IV) a couple years ago and went through chemo and radiation. I had a similar fear about a year and a half after treatments ended. I would find myself at my desk and suddenly feel unable to breathe. It was what I imagined asthma must feel like. I was overall short of breath just walking around but the periodic attacks were scary. I hoped it would go away and finally went to a doctor while traveling overseas because it had gotten so bad. It turns out I had bad acid reflux, which can tighten your esophagus and cause breathing problems and even asthma-like attacks. 

    Part of what made me delay getting it checked out for a week or so was fear of lung cancer. So I've been in similar shoes. It's normal to have that voice in the back of your head. Meditation really helps--it lets you control your own thoughts and shut down that little voice. Try to focus on the things that matter to you in your life, on the moments you've stayed alive to cherish. That will help you get through the waiting time to see the doctor and get results.

    Hang in there! I'll be thinking of you. :-)

    Thank you all, if it hadn't been for that pet scan 1/2 through

    treatment I wouldn't be so freaked out.  And after having insomnia for 8 years and now being awake less time than I am asleep.  I'm sorry, trying to be strong, thought I was winning the war, it's just hard when you don't have friends or family, just an 8 year old who needs you and am afraid I'll leave this world before he's grown up

     

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #6
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    Reillypp said:

    Thank you all, if it hadn't been for that pet scan 1/2 through

    treatment I wouldn't be so freaked out.  And after having insomnia for 8 years and now being awake less time than I am asleep.  I'm sorry, trying to be strong, thought I was winning the war, it's just hard when you don't have friends or family, just an 8 year old who needs you and am afraid I'll leave this world before he's grown up

     

    wow, Reillypp, that has to be

    wow, Reillypp, that has to be really rough.  Being 8 sure won't help them understand.  You never have to be sorry for you post here, that is why we are here, to help each other through our hard times, celebrate our good times, laugh when we can and cry if we need to.  We all freak out when something new comes up so don't feel alone.  I think all, if not most of us have been there.  I hope you are able to get some good sleep and not worry so much.  I know that's easier said than done.  Always know that we are here for you.

    God bless you,

    dj

  • wmc
    wmc Member Posts: 1,804
    #7
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    Reillypp said:

    Thank you all, if it hadn't been for that pet scan 1/2 through

    treatment I wouldn't be so freaked out.  And after having insomnia for 8 years and now being awake less time than I am asleep.  I'm sorry, trying to be strong, thought I was winning the war, it's just hard when you don't have friends or family, just an 8 year old who needs you and am afraid I'll leave this world before he's grown up

     

    Try not to worry..........I know it's hard.

    Haveing the PET scan was ONLY to check on the known tumors. You can light up with false areas being so early. You are still too hot and still in treatment. When you are done and several months go by you get a better reading. 

    My lungs look like a hand grenade went off in them so they can never rule it out. I have so much scarring. Remember "It's not cancer until the Doctor says it is". I do understand your worry. I'm stage 3 emphysema and the "good news" it I'm a good candidate for lung reduction. [ remove the top 3rd of each lung] Thats there "good" news. My scare tisue will light up a little but, It's not Cancer, just some small scarring. Try not to worry. [Yes we know how hard that is.] I just have this feeling you will be just fine. Will add you to my prayer list.

    Bill

  • jcortney
    jcortney Member Posts: 503
    #8
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    Almost the same

    You and I are in similar situation, except that the Scan I have on Tuesday is a CT and not a PET.  One thing you might want to remember, it is VERY common to have infectious nodules in the lungs after the treatment we've been through.  It's very easy to aspirate during (and for the weeks after) the RADs which will cause infections.  My case is a bit different in that my SCC came back after a year and a half in my thyroid and lymph nodes and had surgery to clean it all out.  So, what I'm saying is that I'm probably more likely than you to have it moved to the lungs.

    I know it's easy to say, but if you worry too much, you just stress your body out more.  Either way, there's nothing you can do to change the outcome so try and just focus on the things that make you smile.

    Good Luck to both of us :)

    Joe

  • Jeff2159
    Jeff2159 Member Posts: 108
    #9
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    Could it Spread

    The honest truth is yes but right now there is nothing you can do and worrying about it will just drive you nuts. Its tough waiting for your scan and even worse waiting for the results but speculation of what if is the worst. I have battled SCC of my tongue for 17 years this week and it went haywire almost 3 years ago. I had my 35 rads and 3 doses of carbo platin 5-fu Dec 2012-Jan2013. Prior to that I had renal cell in March 2012 and had my left kidney removed and then in april  2012 had mets to lung. Took sutent for 2 months but had to stop as it melted the grafts in my mouth and the pain was unbearable but 2 months after that the mets disappeared which was a miracle for how quickly they went away. Then in Oct2013 the mets showed up up again in my lung so I went on avastin. Jan 1 2014 I blew a hole in my lung from coughing, short story they took out two nodules to repair lung and surprise the mets to my lung were SCC not RCC. Off avastin and onto erbitux and have been on it since. In July they added the carbo platin 5-fu every 3 weeks as my mets have gone to my 6th left rib but the carbo has decreased all areas that have cancer. Will it go away? No but I can at least keep it stable or have it shrink somewhat. Are there miracles out there? yes I have had one for the RCC mets to lung. For the SCC?I hope but only the guy upstairs knows but I don't worry about it now as much as I use to. I can't do anything about it. Enjoy your life and enjoy your family. I'm getting this month off of no erbitux and carboplatin 5-fu so its off to England and Scotland for 2 weeks to play golf and see Manchester City play soccer. Good luck on your next scan and there are miracles

    Jeff

  • jim and i
    jim and i Member Posts: 1,788 Member
    #10
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    So sorry you are facing this

    So sorry you are facing this fear. Yes it is true, it aint cancer until they say it is cancer, but we still worry. After the battle you fought you can't help but worry. Saying don't worry is easier said than done so try to enjoy some things with your child that will distract you, even if only a short time. And as my Jim said, live your dream while you can. Praying a special prayer for you.

    Debbie

  • edbravo
    edbravo Member Posts: 63
    #11
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    I am also facing the alike

    I am also facing the alike issue, however i had NPC and now i am really worried that it might have spread. Frown Yesterday, when I was told that I need an operation to remove a growth under my tongue, i freezed, started trembling and shaking all over. I am still worried sick and I don't think I can go through any chemo or rad if eventually the cancer have spread. Wonder if I am still brave to be a fighter?

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #12
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    BOT only

    Reillypp,

    Like Laralyn mentioned, it may be something else causing these issues. 

    Learning to deal with fear is another “new normal” for many of us.

    Peace,

    Matt

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