More PET News

Landranger25
Landranger25 Member Posts: 210 Member
edited March 2014 in Head and Neck Cancer #1
Hi all, just got home from my appt. with the surgeon. He had a copy of my PET report and the scans. On the phone, the Oncologist had said that they looked "normal". The report actually showed some uptake at the old cancer site on the base of my tongue and in the tonsil on that side. Surgeon was a little irritated I think because we didn't wait 6 months for PET. His exam today, scope and palpation of everything was all good from his perspective, CT all good, just the PET. He called another Doc and and discussed on the phone and they both agreed it was nothing to get worked up about but I am not sure how I am feeling right now. My wife reassured as did Doc that if it was something that needed to be acted on, I would be scheduled right now for biopsies and tonsilectomy. Anyways, has anyone else had this kind of news on their first PET. Did Onco say normal because he's seen this before? (I see him on the 15th) As always, thanks in advance.

Mike

Comments

  • Hondo
    Hondo Member Posts: 6,636 Member
    #2
    PET
    If they are not worried Mike don’t you worry. I have any area that always fails on my PET it is above the right side of the Nasal passageway. The doctors have been checking it now for almost 4 years and can’t agree on what it is. My ENT said is it Cancer, the MD Anderson doctor said it is Scare tissue, and the Oncologist at home said he is not sure.

    Take care my friend and may God bless you and your Wife
  • Landranger25
    Landranger25 Member Posts: 210 Member
    #3
    Hondo said:

    PET
    If they are not worried Mike don’t you worry. I have any area that always fails on my PET it is above the right side of the Nasal passageway. The doctors have been checking it now for almost 4 years and can’t agree on what it is. My ENT said is it Cancer, the MD Anderson doctor said it is Scare tissue, and the Oncologist at home said he is not sure.

    Take care my friend and may God bless you and your Wife

    Thanks Hondo
    Still feeling a little unsure this morning. I guess I was feeling so good from feeling so bad that I hadn't really prepared myself in case something like this happened. Until I see the Oncologist and get his take I'll just have to roll with this. Surgeon will be watching this very closely, appt. every 4 weeks with a "can't miss" admonition from him. Thanks again Hondo, the fact you are experienceing something similar is reassuring to me. All the best to you and your family as well.

    Mike
  • ratface
    ratface Member Posts: 1,337 Member
    #4
    Landranger25 said:

    Thanks Hondo
    Still feeling a little unsure this morning. I guess I was feeling so good from feeling so bad that I hadn't really prepared myself in case something like this happened. Until I see the Oncologist and get his take I'll just have to roll with this. Surgeon will be watching this very closely, appt. every 4 weeks with a "can't miss" admonition from him. Thanks again Hondo, the fact you are experienceing something similar is reassuring to me. All the best to you and your family as well.

    Mike

    A quote from the OCF Board
    "Not only no reason to panic, those PET/CT results are not even a reason to worry ! If your doctor does not feel any lumps, tumors, etc or anything out of the ordinary on the physical examination, you are just fine. Both my research, my personal experience as well as a written interpretation by the Director of Nuclear Medicine at Georgetown University Hospital (in a very kind and generous response to a frantic plea for help from me) confirm that with Base of Tongue Cancer, there is a very high SUV uptake in the recovering tissue especially the genioglossus area. So for BOT cases, these high SUV levels do not mean cancer. The most important thing you can do is keep having those monthly checkups.
    I am so glad that you got such good news for the holidays. When a radiologist does NOT include some version of the standard legal disclaimer of "metastatic activity cannot be ruled out", you know you are in good shape.
    Have a wonderful Christmas and New Years
    charm"

    Just read that yesterday and I thought it answered your question and was to the point. The OCF board is also a great place for info and I don't think "Charm" would mind.
  • Landranger25
    Landranger25 Member Posts: 210 Member
    #5
    ratface said:

    A quote from the OCF Board
    "Not only no reason to panic, those PET/CT results are not even a reason to worry ! If your doctor does not feel any lumps, tumors, etc or anything out of the ordinary on the physical examination, you are just fine. Both my research, my personal experience as well as a written interpretation by the Director of Nuclear Medicine at Georgetown University Hospital (in a very kind and generous response to a frantic plea for help from me) confirm that with Base of Tongue Cancer, there is a very high SUV uptake in the recovering tissue especially the genioglossus area. So for BOT cases, these high SUV levels do not mean cancer. The most important thing you can do is keep having those monthly checkups.
    I am so glad that you got such good news for the holidays. When a radiologist does NOT include some version of the standard legal disclaimer of "metastatic activity cannot be ruled out", you know you are in good shape.
    Have a wonderful Christmas and New Years
    charm"

    Just read that yesterday and I thought it answered your question and was to the point. The OCF board is also a great place for info and I don't think "Charm" would mind.

    Thank-you!
    I did a little snooping myself this morning and found that the inflamed tissue shows increased uptake. Made sense that since they just irradiated this area heavily that it would show activity here. Add in your information and I now feel huge better. Thanks for the response. Happy New Year to you as well.

    Mike

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