please advise

michdjp
michdjp Member Posts: 220
in Head and Neck Cancer #1
hello to everyone,

my dad just came from the GI dr. today. we went there because we are about 5 months since treatment for tonsil and lymph and still cannot swallow more than liquid and brooths and we wanted to try throat dlitation. The dr. came out after endoscopy and said that he could not dilate anything because there was something just about blocking the esphogus and he could not get around it (afraid to traumatize the tissue). We left with him telling us he would confer with the radiologist and ent to see what to do next. The radiologist called as well as the GI to say they want to get a PET scan and biopsy to rule out a recurrence or scar tissue.
On 1-5-12 we had a CAT-scan that came out NED. and were scoped three times since then all good.
I am absolutly freaking out that they have mentioned the words above. Please can someone tell me if this has happened to them and it was scar tissue.
When you are looking thru the scope wouldnt the GI dr. know if it were scar tissue or a mass? Is it hard to tell the difference? we are waiting for tom. for the radiologist to get the ent on the phone to schedule a biopsy and PETscan.
Knowing this and waiting is absolute torture.

Any advice to get to tom?

thanks
michelle

Comments

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #2
    just remember
    While it sounds scary and it IS scary, until the doctor tells you there is something to worry about, try not to.

    We've had a couple of instances when the doctors decided to do a biopsy after Jim's treatment just to be sure and it turned out to be scar tissue or something else.

    Try to hold onto that, as hard as it might be.
  • michdjp
    michdjp Member Posts: 220
    #3
    Noellesmom said:

    just remember
    While it sounds scary and it IS scary, until the doctor tells you there is something to worry about, try not to.

    We've had a couple of instances when the doctors decided to do a biopsy after Jim's treatment just to be sure and it turned out to be scar tissue or something else.

    Try to hold onto that, as hard as it might be.

    Thank you
    I know but they kinda split it down the middle if it is scar tissue we will do this and if it is a recurrence we will do this.
    How did Jim's biopsy turn out was it scar tissue?
    Thank you for your reply
    Michelle
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #4
    Unfortunately
    nothing anyone can say well squelch the anxiety this produces. It will take a negative scan to put the issue to rest. A CT scan is sensitive to the volume of tumor, and if the CT was negative in January, the chances this thing will be cancer are small. It would take a significant bulk of tumor to block the esophagus. So this is much more likely scar tissue. But again, it will take the studies to know for sure.

    Pat
  • Hal61
    Hal61 Member Posts: 655
    #5
    Holding pattern
    Hi Michelle, medical uncertainties are just about the worst places to be in a holding pattern, as you say, absolute torture.

    I'm not sure if a gastor intestinal doc would in fact be able to say anything conclusive with his look. He may have suspicions, but just as likely doesn't.

    Scar tissue can certainly develop 5 to 6 months out, so can infections of the affested areas.

    And as Pat points out, with nothing showing on the January CT, a recurrance creating a tumor large enough to block the passage would be an extremely fast grower, or something else.

    Good reason to be hopeful while you wait. Unfortunately a lot of treatment and recovery has much to do with waitiing.

    best to you both,
    Hal
  • nwasen
    nwasen Member Posts: 235 Member
    #6
    advice for Tom
    I had alot of swallowing issues after my treatments. When I choked on a piece of cooked potato in creamy potato soup I called my ENT. He sent me for a swallow test where it was determined that I had alot of scar tissue from the radiation.
    I had two months of throat therapy with electrodes used and then two stretches. One at one month in of therapy and another after the 2nd month.
    It's hard not to let your mind go to the worse possible place but take a deep breath and wait until you get all the results.
    We are here to listen and help.
    good luck!!
    Nancy
  • michdjp
    michdjp Member Posts: 220
    #7
    longtermsurvivor said:

    Unfortunately
    nothing anyone can say well squelch the anxiety this produces. It will take a negative scan to put the issue to rest. A CT scan is sensitive to the volume of tumor, and if the CT was negative in January, the chances this thing will be cancer are small. It would take a significant bulk of tumor to block the esophagus. So this is much more likely scar tissue. But again, it will take the studies to know for sure.

    Pat

    Thanks
    That does make a lot of sense. How could they have missed something.
    We are only 5 months since the last radiation and chemo treatments.
    Just have to wait and see. Keep you posted.
    Thank you
    Michelle
  • michdjp
    michdjp Member Posts: 220
    #8
    Hal61 said:

    Holding pattern
    Hi Michelle, medical uncertainties are just about the worst places to be in a holding pattern, as you say, absolute torture.

    I'm not sure if a gastor intestinal doc would in fact be able to say anything conclusive with his look. He may have suspicions, but just as likely doesn't.

    Scar tissue can certainly develop 5 to 6 months out, so can infections of the affested areas.

    And as Pat points out, with nothing showing on the January CT, a recurrance creating a tumor large enough to block the passage would be an extremely fast grower, or something else.

    Good reason to be hopeful while you wait. Unfortunately a lot of treatment and recovery has much to do with waitiing.

    best to you both,
    Hal

    Thanks
    My gut told me the same thing that the gi dr. Was not as skilled as the radiologist or head and neck specialist ENT we went to and were scoped by but I cannot escape the words he used as a possible answer. My family and I are trying to wait for answers as best we can and hope by using logic provided by this forum. Thank you for your advice.
    Keep you posted
    Michelle
  • michdjp
    michdjp Member Posts: 220
    #9
    nwasen said:

    advice for Tom
    I had alot of swallowing issues after my treatments. When I choked on a piece of cooked potato in creamy potato soup I called my ENT. He sent me for a swallow test where it was determined that I had alot of scar tissue from the radiation.
    I had two months of throat therapy with electrodes used and then two stretches. One at one month in of therapy and another after the 2nd month.
    It's hard not to let your mind go to the worse possible place but take a deep breath and wait until you get all the results.
    We are here to listen and help.
    good luck!!
    Nancy

    Thanks
    My dad also went for a swallow,study which showed a swollen epiglottis, and asymmetrical esophagus (all probably due to radiation).
    We went for 8weeks of rehab.( Stretching tech. And exercises.)
    I looked into the electrodes but they said you would need to remove scar tissue first as the electrodes would not go thru scar tissue.
    That is why we went for the throat dilitation first.
    ENT said its all collateral damage and time will heal. Then we go for a throat dilitation and hear this.
    It is just so unexplainable. We have to try to be patient and wait for the test to come back with answers.
    I know this but I am having a hard time doing it.
    How did the swallow study see scar tissue. It wasn't mentioned in ours and this test was done on December 12.
    Could it not have been there then. That was about 2 months post treatment.
    Thanks for your time and advice
    Michelle
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #10
    Scopes
    Scopes are both good and bad. when they find something and it turns out to be good that is good news. when they find something and turns out to be bad that is bad. when they see something and they want to wait to see if it changes that can be good and bad. to me scopes give them a tool to us as part of their way of being looking for changes.

    I was scoped because i lost my voice, the first dr. thought it was cancer, within the next half hour two more looked and said it's cancer. next day i went to my team of docs and 4 more scoped me over 45 min and all felt the same and talked of removing the voice box. first they wanted to take biopsy. with in a week they went in to biopsy, to their surprise once in there they could see clearly it was not cancer. turns out it was congronercrosis(dead infected skin).

    i share the story only to show the scope does not always show what they see be it good or bad. be confident that once they truly know what is going on that they have the knowledge and experience to take care of the problem.

    not sure this helps but it is my experience

    john
  • michdjp
    michdjp Member Posts: 220
    #11
    fisrpotpe said:

    Scopes
    Scopes are both good and bad. when they find something and it turns out to be good that is good news. when they find something and turns out to be bad that is bad. when they see something and they want to wait to see if it changes that can be good and bad. to me scopes give them a tool to us as part of their way of being looking for changes.

    I was scoped because i lost my voice, the first dr. thought it was cancer, within the next half hour two more looked and said it's cancer. next day i went to my team of docs and 4 more scoped me over 45 min and all felt the same and talked of removing the voice box. first they wanted to take biopsy. with in a week they went in to biopsy, to their surprise once in there they could see clearly it was not cancer. turns out it was congronercrosis(dead infected skin).

    i share the story only to show the scope does not always show what they see be it good or bad. be confident that once they truly know what is going on that they have the knowledge and experience to take care of the problem.

    not sure this helps but it is my experience

    john

    Thank you
    I appreciate your time and your response greatly. They scheduled a PET scan for thurs. depending on that they will decide if they want to biopsy.
    They are going to compare the jan. ct scan to this new pet scan and something like scar tissue lights up lighter than tumor so they will look at that.
    Also if they are going to biopsy after the pet scan they will have a more definitve place to biopsy.
    (they said they saw something blocking the esphogus).
    Does this make sense? I can't think strait at all.
    Something told me that a biopsy would have been first choice but I'm trying to trust the drs.
    Michelle
  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #12
    michdjp said:

    Thank you
    I appreciate your time and your response greatly. They scheduled a PET scan for thurs. depending on that they will decide if they want to biopsy.
    They are going to compare the jan. ct scan to this new pet scan and something like scar tissue lights up lighter than tumor so they will look at that.
    Also if they are going to biopsy after the pet scan they will have a more definitve place to biopsy.
    (they said they saw something blocking the esphogus).
    Does this make sense? I can't think strait at all.
    Something told me that a biopsy would have been first choice but I'm trying to trust the drs.
    Michelle

    trust
    I think they've made the right decision - biopsies have inherent risks so that's not always the first choice.

    Know this is hard. Just hang on.
  • michdjp
    michdjp Member Posts: 220
    #13
    Noellesmom said:

    trust
    I think they've made the right decision - biopsies have inherent risks so that's not always the first choice.

    Know this is hard. Just hang on.

    Thank you
    It is so hard not to jump to conclusions..that is why I come here for advice.. Thank you For your time
    Hanging in there (barley).
    Michelle

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