Question

osmotar
osmotar Member Posts: 1,006
in Head and Neck Cancer #1
In late Jan early Feb after all treatments completed, I noticed a whitish sore area on the right side of my tounge, at each onco, rad and ent visit I asked if it looked like anything serious, all said no. ENT had me take an antibiotic, thought it might be thrush, nothing changed, then we tried magic mouthwash , again nada, the area didn't hurt unless I was chewing something a little rough on that side, but mouthwash/toothpaste made it a bit burny. I had my first post tx PET in Mar, all clear. I saw my ENT again and he said when I saw him again in June if it wasn't gone he would do a biopsy at the next visit, he did that on June 1st, I had my second PET last Wed, again all clear. Well after playing phone tag with ENT office I just got off the phone with him and he said there are some SCC cells present,and he wants to remove a bit larger section, right now I'm close to tears , but can't cry because I'm with my grandaughter. I guess what I want to know is how could this happen, well not so much happen, but how could this not have shown up on any of the previous PET scans done so close together???

call me scared and somewhat disappointed.

Linda
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Comments

  • meaganb
    meaganb Member Posts: 244 Member
    #2
    Don't have any wisdom, but
    Don't have any wisdom, but just wanted you to know that I will be praying for you. I won't tell you not to worry because I know that is impossible especially since you've already been through this once, but I will pray for peace for you until you know what's going on.
  • jim and i
    jim and i Member Posts: 1,788 Member
    #3
    meaganb said:

    Don't have any wisdom, but
    Don't have any wisdom, but just wanted you to know that I will be praying for you. I won't tell you not to worry because I know that is impossible especially since you've already been through this once, but I will pray for peace for you until you know what's going on.

    wow, I don't know why it
    wow, I don't know why it wasn't picked up but I am praying it is only a few cells and tht is it.

    Debbie
  • KTeacher
    KTeacher Member Posts: 1,103 Member
    #4
    So know
    So know how you are feeling. I was there last summer. Hopefully they can go in and get it with clean margins. I am a 2 timer, it can be done. How old is your grandaughter? Do you have some grown ups that will be with you this evening? One day at a time--you are a tough 'chick.' (Mine never showed up in a PET--either time)
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #5
    is this thing the same size as it was awhile back?
    PET relies on high metabolism to turn positive, so if not growing likely that is why PeT was negative. I am sorry to hear this Linda, but keep the faith. This may not be as huge a deal as you fear. Your tongue did not receive a full dose of rads, but enough to hurt this area. Likely the original cancer cell was already there. This may be just a local resection and life goes on. Hoping for the best for you.


    Pat
  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #6
    no good answer
    Linda,

    Let’s hope it is just a few cells and you can be treated quickly. As for how they missed it, I don’t know. These experts are fallible too and so are the PET scan machines. I feel so sorry for you and understand your position, clearly and know it must be a mind blower.

    Hug you granddaughter and pray for a good outcome.

    Matt
  • Sam999
    Sam999 Member Posts: 319 Member
    #7
    CivilMatt said:

    no good answer
    Linda,

    Let’s hope it is just a few cells and you can be treated quickly. As for how they missed it, I don’t know. These experts are fallible too and so are the PET scan machines. I feel so sorry for you and understand your position, clearly and know it must be a mind blower.

    Hug you granddaughter and pray for a good outcome.

    Matt

    Hi Linda,
    I know this must
    Hi Linda,

    I know this must be heart breaking and do not understand why PET did not pick it up the first time, but seems like you found it early enough, maybe they can take it out and you will be done. Look at the positive side that you found it earlier than later.

    My prayers with you.

    Sam
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #8
    WOW..
    Linda, so sorry of the fear you have going on...

    Hoping like Pat said, it's just an area that got hit and is dormant for the most part. It doesn't sound like it's been growing so I'd presume that's a good thing.

    Hoping at most it can just be surgically taken care of with minimal tissue loss, no chemo, no rads.

    My thoughts and prayers are with you...

    John
  • joannaw81
    joannaw81 Member Posts: 185 Member
    #9
    Skiffin16 said:

    WOW..
    Linda, so sorry of the fear you have going on...

    Hoping like Pat said, it's just an area that got hit and is dormant for the most part. It doesn't sound like it's been growing so I'd presume that's a good thing.

    Hoping at most it can just be surgically taken care of with minimal tissue loss, no chemo, no rads.

    My thoughts and prayers are with you...

    John

    hi Linda-I thought I am reading my own post!!!
    all I can say is WOW, your story is exactly the same as my mom's (read my profile please). she finished radiation for tonsil cancer stage 3 in Feb of 2011. In april she noticed a spot on the side of her tongue, doctors said they will just watch it. In june she had her first PET post treatment and it was all clear. The sore did not go away so biopsy was done in September (yes September not sure why they waited so long) which came back positive for SCC. She had surgery to remove a little more to make sure all is gone on 10/6/11. unfortunately it did not end there for us but hopefully it will for you. Please make sure they do another PET scan prior to surgery so they know how big it is and how much to remove (hopefully it will show up on the scan this time). My mom did not have a PET and she had to have another surgery in March of 2012. Even though the margins were negative this type of cancer is known for skipped leasions and that was the case with my mom. This is advise for everyone that feels that something is wrong: demend scans, biopsies or whatever to determine what's happening. Our doctor apologized for waiting so long to take the biopsy but it can't change nothing at this point. in my mom's case she could have had the surgery in April instead of October, look how many months the cancer was there!!!! anyway I wish you all the bext and good luck to you!!!!
  • osmotar
    osmotar Member Posts: 1,006
    #10
    KTeacher said:

    So know
    So know how you are feeling. I was there last summer. Hopefully they can go in and get it with clean margins. I am a 2 timer, it can be done. How old is your grandaughter? Do you have some grown ups that will be with you this evening? One day at a time--you are a tough 'chick.' (Mine never showed up in a PET--either time)

    HI KT
    My grandaughter just turned 7 last week, I've been home (MD) with family since last week, returning to AZ on sunday. Told my daughter and son-in-law when I got home..they think I should move back east...great idea except I'm employed full time and have great insurance. Oh well it is what it is..just a bit chapped at all 3 docs since I kept asking them at each visit could this be anything....but in the end they are human and hoprfully all will be taken care of,
  • osmotar
    osmotar Member Posts: 1,006
    #11
    Surgery
    Surgery to take a bit more of the spot is scheduled for tuesday the 19th, 3 pm in the afternoon.
  • osmotar
    osmotar Member Posts: 1,006
    #12
    THANK YOU
    all for your kind words & thoughts.

    Linda
  • Ingrid K
    Ingrid K Member Posts: 813
    #13
    osmotar said:

    THANK YOU
    all for your kind words & thoughts.

    Linda

    it sucks, but
    Linda, maybe it didn't show up in earlier PETS because it is so SMALL....which is good... and they can go in and take the rest out fairly easily....and like others have said...no big deal surgery and no rads or chemo.
    Prayers sent for the best possible outcome for you.

    p.s. my new picture is of my fellow OC survivor, Eric Statler of the Oral Cancer Foundation, me and my wonderful hubby, Ted.....oh and the head of my golden with a stuffed kangaroo toy in his mouth.
  • Tonsil Dad
    Tonsil Dad Member Posts: 488
    #14
    Ingrid K said:

    it sucks, but
    Linda, maybe it didn't show up in earlier PETS because it is so SMALL....which is good... and they can go in and take the rest out fairly easily....and like others have said...no big deal surgery and no rads or chemo.
    Prayers sent for the best possible outcome for you.

    p.s. my new picture is of my fellow OC survivor, Eric Statler of the Oral Cancer Foundation, me and my wonderful hubby, Ted.....oh and the head of my golden with a stuffed kangaroo toy in his mouth.

    Hey Linda!
    Stay strong, be positive and have faith.
    You will be ok, its just another blip on the path of life.
    You got through the hard part, you will get through this.

    Sending prayers your way.
    God bless
    Tonsil dad,

    Dan.
  • ooo
    ooo Member Posts: 105
    #15
    osmotar said:

    Surgery
    Surgery to take a bit more of the spot is scheduled for tuesday the 19th, 3 pm in the afternoon.

    hugs
    Hopefully the pathology report after surgery will be of some comfort. A big hug Linda, and don't let your mind run ahead of you. This is just the last step for you before being cancer free.

    Did I send you a hug already? :)

    Dre.
  • phrannie51
    phrannie51 Member Posts: 4,716
    #16
    Ingrid K said:

    it sucks, but
    Linda, maybe it didn't show up in earlier PETS because it is so SMALL....which is good... and they can go in and take the rest out fairly easily....and like others have said...no big deal surgery and no rads or chemo.
    Prayers sent for the best possible outcome for you.

    p.s. my new picture is of my fellow OC survivor, Eric Statler of the Oral Cancer Foundation, me and my wonderful hubby, Ted.....oh and the head of my golden with a stuffed kangaroo toy in his mouth.

    I'm leaning the same way Ingrid is......
    it was just so damned small, nothing picked it up......maybe Monday will be the end all of this scare!

    p
  • Pam M
    Pam M Member Posts: 2,196
    #17
    osmotar said:

    Surgery
    Surgery to take a bit more of the spot is scheduled for tuesday the 19th, 3 pm in the afternoon.

    Hurry, Tuesday
    Hope it's quick, straightforward, and a resolution to your issues.
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #18
    Linda
    Good thing- looks to be very early. Many of us have whitish areas on the side(s) of the tongue, due to contact with the sides of the lower gum and/or teeth. Had such spots on both sides of my tongue for almost 3 years, so it likely is somewhat common. And, that the PS/CT comes back clean- suggests minimal C activity there, so maybe it is very early. Hope and Pray that is the case- which is logically safe to assume.

    The Pet Scans don't seem to pick-up very small masses. Remember way back when someone had been told it takes a C mass/area about the size of a dime to show. Most of us have small cell C which can evade detection if not concentrated to a somewhat significant size- which is to say nobody should think for a second a PS/CT is gonna show every and all C cells in the body. That is also why the first scans are mostly for the purpose of a baseline to compare with the post-treatment scans.

    That said, I can well imagine your being scared- though, again, I hope you can realize they might have caught this new showing very early. And, yes, I'm so very sorry that it seems to have come back on you. As most know, surgery is often the first and best option the Drs consider for a recurrence, if that's what this is, and that does take it to the next level, depending on the specifics of the Op, of course. But getting the Op done ASAP is the route to take, if the Drs got their part of this correct.

    Hopes and Prayers are with you, Linda. You've been thru tx before, so you're a vet to the battle. As in tx, one just has to get done what has to be done, as you know. Please keep us updated. Time to get angry again, Linda, at this thing called C, and do what it takes to get rid of it again. Sounds like you and your Drs will do just that, so kick it back into the Positive with the focus on just that. And

    Believe

    kcass
  • tuffenuff
    tuffenuff Member Posts: 277
    #19
    Kent Cass said:

    Linda
    Good thing- looks to be very early. Many of us have whitish areas on the side(s) of the tongue, due to contact with the sides of the lower gum and/or teeth. Had such spots on both sides of my tongue for almost 3 years, so it likely is somewhat common. And, that the PS/CT comes back clean- suggests minimal C activity there, so maybe it is very early. Hope and Pray that is the case- which is logically safe to assume.

    The Pet Scans don't seem to pick-up very small masses. Remember way back when someone had been told it takes a C mass/area about the size of a dime to show. Most of us have small cell C which can evade detection if not concentrated to a somewhat significant size- which is to say nobody should think for a second a PS/CT is gonna show every and all C cells in the body. That is also why the first scans are mostly for the purpose of a baseline to compare with the post-treatment scans.

    That said, I can well imagine your being scared- though, again, I hope you can realize they might have caught this new showing very early. And, yes, I'm so very sorry that it seems to have come back on you. As most know, surgery is often the first and best option the Drs consider for a recurrence, if that's what this is, and that does take it to the next level, depending on the specifics of the Op, of course. But getting the Op done ASAP is the route to take, if the Drs got their part of this correct.

    Hopes and Prayers are with you, Linda. You've been thru tx before, so you're a vet to the battle. As in tx, one just has to get done what has to be done, as you know. Please keep us updated. Time to get angry again, Linda, at this thing called C, and do what it takes to get rid of it again. Sounds like you and your Drs will do just that, so kick it back into the Positive with the focus on just that. And

    Believe

    kcass

    This thread makes me
    This thread makes me wonder... On my pet they saw "some uptake" on the back of my tongue and soft palate. Sounded like no big deal and didnt sound unusual being my tonsil was huge and touching all of those areas. I've been assuming that whatever the rads don't get will be sort of swept up by the chemo. Could that be or should I count on surgery when it's all said and done?
  • buzz99
    buzz99 Member Posts: 404
    #20
    So sorry to hear of the recurrence. Our experience has been that the post-treatment follow-up is not an exact science and the answers may be elusive. We have been dealing with lots of questions/misleading information since Buzz finished treatment January 2011. His cancer is definitely back now (3 areas). Hopefully yours is just in the one spot and can be removed. It is so devastating to be dealing with cancer after you think you are done. Will be thinking of you. Karen
  • joannaw81
    joannaw81 Member Posts: 185 Member
    #21
    tuffenuff said:

    This thread makes me
    This thread makes me wonder... On my pet they saw "some uptake" on the back of my tongue and soft palate. Sounded like no big deal and didnt sound unusual being my tonsil was huge and touching all of those areas. I've been assuming that whatever the rads don't get will be sort of swept up by the chemo. Could that be or should I count on surgery when it's all said and done?

    Hello tuffenuff
    I am a little confused, how is this a recurrance when you just had surgery in May? as I understand you are still in treatment right? will you be getting any radiation or chemo? anyway I just wanted to point out that sometimes scans if done to early after surgery show false positive result. My mom had surgery on 3/1/12 and 4 weeks later she had MRI which showed increased uptake in similar spot like yours, they did a biopsy in 6 different places and all came back negative. Hang in there, don't jump to conclusions and all the best for you!

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