Fixated on possible Recurrance

jthornsbury
jthornsbury Member Posts: 62
edited September 2013 in Head and Neck Cancer #1

Friends,

 

If we cant be honest here I figure that there are very few places we can be.  Found a small white lesion on the right side of my tongue and it would apprear that my primary site (right tonsil) is getting bigger.  i feel the bump and "just know" what that means.  I had a CT on 6/12 NED but concern with right node.  Had a Ultrasound and FNB on 7/12 with no viable cancers cells found. I was scheduled to have a Pet Scan on 8/26 but was rescheduled for 9/16.  Was told that recurrance possibility was "very low" by ENT and RO when we started this process but now looking at the possibility right now...just really really scared. I have a 11 year old daughter and a fourteen year old son as well as the love of my life -- my wife of 21 years. I just am not ready to say goodbye yet! Thanks for just listening and if possible give words of wisdom as 9/16 is more then a week away.  

 

Jon

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    #2
    My turn to grab some ankles....

    and pull you back to the ground (I know, I know.....it was p last week who "just knew" what her symptoms meant...and I too had to be pulled back to earth).  I'm looking over the Dr. schedule you have done the last three months....you had a CT the middle of June with nothing lighting up.....you had a biopsy the middle of July with nothing showing.....and I'm assuming you mean that you have a PET scheduled for 9/16 instead of 8/16, right? 

    I know how scary these "symptoms" seem after having been through what we've been through....but the "what we've been through" can cause the symptoms.....All lumps and bumps need to be looked at, of course....but the chances of scar tissue being found are WAY higher than a recurrance.....I'd even venture to say that the white lesion on your tongue is from irritation, or that other thing that starts with a "p"....can't remember the name of it, but somebody will....but it's common and non-cancerous.

    I'm betting that once you get your PET scan, that you won't light up at all, just like in June.....rads are tricky, sneaky things....they just keep giving and giving....but what a relief to find out that what appears to be ominous signs, are just another gift from rads.

    Take a deep breath.....we're here to talk about it....I've always believed if people talk about what scares them, fear loses it's hold....it's going to alright Jon, I can feel it.

    p

    PS....I'm embarressed to say this, cuz everybody will think I'm nuts.....but last week one of my "signs" was:  everytime I'd go out and do something with the horses, flies seemed to land on my right ear (the plugged one).....and leave my left ear alone (horses attract lots of flies)....but I thought....OMG the flies know....they can smell it or something...for SURE cancer is back....haven't noticed a difference since I had my scan....Scanxiety will make us crazy....

     

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #3
    jon, i understand ur fear and

    jon, i understand ur fear and all ur wonderful reasons to live!  i'm truly sorry u are go'n thru this.  it is never easy to deal with a new bump, hump, lump or anything else once we've had cancer.  i will b praying that its nothing.  please keep us posted.  btw, u r always welcome to b honest on here.  we count on that!

    dj

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #4
    Where You Going...

    Nobody here said you could go anywhere....

    While there are never any guarantees, more than likely you are getting way ahead of yourself on the self Dx. Anxiety and the fear of what you have already gone through is probably getting the best of you.

    You've had two recent good scans, I'd presume you are going to have another very soon.

    Thoughts and Prayers,

    John

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #5
    I think you are OK

    Jon,

    First thing, do not cash in the life insurance; you are going to be around for a long time.

    I want you to concentrate on something important, like the fly’s hanging out in Phrannies ear, she is a real hoot.’

    Seriously, you have had good check-ups and scans (recently) and there is no reason to doubt their validity.  As part of our (new) abi-normal behavior is our incredible imaginations, fortunately your fear is just that.  I have to believe in all those treatments having worked and for you they probably did.

    You are quite right about the honesty share amongst the H&N members.  The rads melted my cancer and inhibitions.

    Matt

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #6
    What we don't know can hurt us

    Hey Jon,

    I wish there were a magic word or way to relieve the stress and anxiety that come with being a survivor. Anxiety is a tricky ****. It plays with your mind and sometimes gets so entrenched that you can't stop it from taking over and making you feel worse than you really are. 

    Not knowing, waiting, thinking about the "what ifs" can be maddening. I've been doing an awful lot of research on the subject of anxiety recently. It's mind boggling what it can do to us physically. Personally, other than a couple of panic attacks I've been spared the nemesis of anxiety. But I do know what it's like. Toss in our prior experience with an ill advised Google search and it can make things worse. 

    Half the battle here is mental and you've earned your stripes already. While we can't control what will be, we can, and you can, control what is. Just like you did when this journey started, one foot in front of the other and keep on marching forward. You'll get through this and be fine. 

    Besides, now that P emptied her pockets, she's got ya covered as we all do...

    Hang tough!

    Positive thoughts and prayers

    "T"

     

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #7
    CivilMatt said:

    I think you are OK

    Jon,

    First thing, do not cash in the life insurance; you are going to be around for a long time.

    I want you to concentrate on something important, like the fly’s hanging out in Phrannies ear, she is a real hoot.’

    Seriously, you have had good check-ups and scans (recently) and there is no reason to doubt their validity.  As part of our (new) abi-normal behavior is our incredible imaginations, fortunately your fear is just that.  I have to believe in all those treatments having worked and for you they probably did.

    You are quite right about the honesty share amongst the H&N members.  The rads melted my cancer and inhibitions.

    Matt

    Inhibitions

    Yep, once you've been poked, probed, radiated, poisoned, zapped, stuck, flushed, starved, burnt, sliced, diced, and ummm... walked around with a gown open in the back with your azz hanging out for everyone to gander at....

    Well, ummm, there's just not a whole lot of room left for inhibition or humility anymore...

    and you wonder why I'm heading up the abi-normal clan....

    JG

  • jthornsbury
    jthornsbury Member Posts: 62
    #8
    phrannie51 said:

    My turn to grab some ankles....

    and pull you back to the ground (I know, I know.....it was p last week who "just knew" what her symptoms meant...and I too had to be pulled back to earth).  I'm looking over the Dr. schedule you have done the last three months....you had a CT the middle of June with nothing lighting up.....you had a biopsy the middle of July with nothing showing.....and I'm assuming you mean that you have a PET scheduled for 9/16 instead of 8/16, right? 

    I know how scary these "symptoms" seem after having been through what we've been through....but the "what we've been through" can cause the symptoms.....All lumps and bumps need to be looked at, of course....but the chances of scar tissue being found are WAY higher than a recurrance.....I'd even venture to say that the white lesion on your tongue is from irritation, or that other thing that starts with a "p"....can't remember the name of it, but somebody will....but it's common and non-cancerous.

    I'm betting that once you get your PET scan, that you won't light up at all, just like in June.....rads are tricky, sneaky things....they just keep giving and giving....but what a relief to find out that what appears to be ominous signs, are just another gift from rads.

    Take a deep breath.....we're here to talk about it....I've always believed if people talk about what scares them, fear loses it's hold....it's going to alright Jon, I can feel it.

    p

    PS....I'm embarressed to say this, cuz everybody will think I'm nuts.....but last week one of my "signs" was:  everytime I'd go out and do something with the horses, flies seemed to land on my right ear (the plugged one).....and leave my left ear alone (horses attract lots of flies)....but I thought....OMG the flies know....they can smell it or something...for SURE cancer is back....haven't noticed a difference since I had my scan....Scanxiety will make us crazy....

     

    Thanks!
    P
    Thanks for the kind words and reassurance. I need to focus on today and the three people I love so much, instead this crazy notion. It is so difficult but I know what I need to do...again thanks!

    Jon
  • KTeacher
    KTeacher Member Posts: 1,103 Member
    #9
    Agree

    Yes, I agree with what everyone else says.  We do all have scanxiety, everything is probably ok.  As one who has had 4 recurrances, Life is good, keep on living it.

    Keep up on your appointments.  Let your fears be known, we are the group that understands.

  • hwt
    hwt Member Posts: 2,328 Member
    #10
    KTeacher said:

    Agree

    Yes, I agree with what everyone else says.  We do all have scanxiety, everything is probably ok.  As one who has had 4 recurrances, Life is good, keep on living it.

    Keep up on your appointments.  Let your fears be known, we are the group that understands.

    Me too

    Prayers for continued NED. We all know how anxious these scans can make us. I recently had a reccurance of my own. If it were not for the scans, I would not have known anything was wrong, I felt good and saw nothing. Live in the moment and enjoy it, don't waste energy worrying about something that may or may not be. If it does happen, deal with options then. I just did 5 days at Mayo getting a tx that targets isolated recuurent tumors with 80% success rate and few side effects. Unfortunately, mine is in the carotid cavity which is a dangerous and highly unusal spot but I have hope.

    God bless

    Candi

  • Hondo
    Hondo Member Posts: 6,636 Member
    #11
    Hi Jon

     

    You sound like us all of here, it is normal to be afraid every time you see something that does not feel or look right. I know I can do a scope on Monday and if I start to have a little bleeding on Wednesday I think about the possibility of recurrence that is just the way we are. Now I just put it into Gods hand and let Him deal with it, I can offer you this. Take your caretaker wife and just the both of you find a place you can be alone and keel down and pray together and ask God to take the burden off of you. I tell you it is amazing what faith can do.

     

    God Bless

    Hondo

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