Need experience and feedback

jtjones56
jtjones56 Member Posts: 22
edited March 2014 in Head and Neck Cancer #1
I have out of treatment since January 2008 and have been following up at Moffitt Cancer Center since then. In March I had an extra sore place on my tongue and my ENT biopsied it but found no cancer cells.

Wednesday of last week, I had my first petscan since I finished treatments and the only place that showed some activity was the same place that was biopsied in March.

They decided to redo the petscan in 4 months (November) to see if there are any changes but in the meantime seem to think since they already biopsied that area and only found scar tissue, inflammation and radiation damage that there needs no other follow-up until the Petscan in November.

Have any of you had any experience with this type of situation? I just don't want to sit and worry for 4 months waiting for the result of the next petscan. I have gotten great feedback from this site in the past so I am hoping someone will respond to me.

Comments

  • jkinobay
    jkinobay Member Posts: 298 Member
    #2
    May be a normal "false-positive"
    My first question would be when was the last previous PET and did it indicate a "hot spot" in this same location?

    False positives are very common. My treatments ended in Oct. 07 and I had a false-positive show up in a 3 mo. PET and again in a 4 mo. sonogram. It was gone however by the 6mo. PET. That was in 4/08 and my PET's since are clean.

    So, again, I would verify that this "hot spot" is nothing new. I am not a Dr. of course, but if it were me I would want to be double-darn sure that the biopsy didn't miss something. They call the PET scan God's GPS for cancer because it has such a great track record. I think I read that in most cases it's findings are more accurate than biopsies.

    Truthfully, if you trust your Doc's then I am sure you have nothing to worry about. But, we cancer survivors know all about "needless" worry, there is no such thing.

    God Bless and keep us posted. JK
  • jtjones56
    jtjones56 Member Posts: 22
    #3
    jkinobay said:

    May be a normal "false-positive"
    My first question would be when was the last previous PET and did it indicate a "hot spot" in this same location?

    False positives are very common. My treatments ended in Oct. 07 and I had a false-positive show up in a 3 mo. PET and again in a 4 mo. sonogram. It was gone however by the 6mo. PET. That was in 4/08 and my PET's since are clean.

    So, again, I would verify that this "hot spot" is nothing new. I am not a Dr. of course, but if it were me I would want to be double-darn sure that the biopsy didn't miss something. They call the PET scan God's GPS for cancer because it has such a great track record. I think I read that in most cases it's findings are more accurate than biopsies.

    Truthfully, if you trust your Doc's then I am sure you have nothing to worry about. But, we cancer survivors know all about "needless" worry, there is no such thing.

    God Bless and keep us posted. JK

    Thank you for your experience
    My last pet scan was actually before my treatments in late 07 - my original cancer was stage 3 at base of tongue treated with radiation and chemo. A catscan was performed after my treatments and showed no signs of the tumor. So this is my first petscan since my treatments finished up in Jan. 08
  • jkinobay
    jkinobay Member Posts: 298 Member
    #4
    jtjones56 said:

    Thank you for your experience
    My last pet scan was actually before my treatments in late 07 - my original cancer was stage 3 at base of tongue treated with radiation and chemo. A catscan was performed after my treatments and showed no signs of the tumor. So this is my first petscan since my treatments finished up in Jan. 08

    Probably very good news
    Sounds like this may very well be a false-positive. God Bless and hang in there. You will do fine.

    JK
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #5
    sore tongue
    JK makes a great point about false positives. I am a first-hand example of false positives, as OncoMan (and others) once looked at my CAT and PET scans and told me that cancer was rife in my lungs and that I had 10 months to live or thereabouts. They also said that my tongue/neck cancer had recurred.

    It turns out that a lung infection was the source for almost all of what was in my lungs, and the tongue/neck stuff was nothing more (am I saying that?) than an infection beneath a filling.

    That said, your tongue sore is a problem, jt. If it is not cancer, and let us hope that it is not, then what is it?

    When I found out I had tongue/neck cancer originally, jt, it was because treatments for a sore throat were not improving the situation and, ultimately, because a sore on my tongue was so sore that I could no longer eat properly. My doc saw me and then sent me immediately to the hospital, assuming it was an abscess that might burst at any moment.

    Mine turned out to be cancer. Hopefully, yours is not.

    It is good that doctors are aware and are tracking, but be sure to keep them updated regularly of any changes. If they have given you nothing to treat it, again, I would ask what it is and why it is not being treated (if it is indeed 'sore').

    Just another opinion from a non-doctor :).

    Best wishes.

    Take care,

    Joe
  • jtjones56
    jtjones56 Member Posts: 22
    #6
    soccerfreaks said:

    sore tongue
    JK makes a great point about false positives. I am a first-hand example of false positives, as OncoMan (and others) once looked at my CAT and PET scans and told me that cancer was rife in my lungs and that I had 10 months to live or thereabouts. They also said that my tongue/neck cancer had recurred.

    It turns out that a lung infection was the source for almost all of what was in my lungs, and the tongue/neck stuff was nothing more (am I saying that?) than an infection beneath a filling.

    That said, your tongue sore is a problem, jt. If it is not cancer, and let us hope that it is not, then what is it?

    When I found out I had tongue/neck cancer originally, jt, it was because treatments for a sore throat were not improving the situation and, ultimately, because a sore on my tongue was so sore that I could no longer eat properly. My doc saw me and then sent me immediately to the hospital, assuming it was an abscess that might burst at any moment.

    Mine turned out to be cancer. Hopefully, yours is not.

    It is good that doctors are aware and are tracking, but be sure to keep them updated regularly of any changes. If they have given you nothing to treat it, again, I would ask what it is and why it is not being treated (if it is indeed 'sore').

    Just another opinion from a non-doctor :).

    Best wishes.

    Take care,

    Joe

    Thank for your experience
    Thank for your experience and response. My main obstacle at this time is keeping a postive outlook!!! Praying about that. I do trust the doctors and am going to a great hospital for care so I'm doing everything I can to help myself, the rest is up to God.

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