Pet scan colors

Bob123
Bob123 Member Posts: 3
edited December 2013 in Head and Neck Cancer #1

Cancer was first seen in my mouth in April. 5 months later after it rapidly grew it was removed by ENT doctor/surgeon. Pathology said it was cancer. Frozen slice biopsy of tissue around tumor removal showed no cancer. I was refered to Cancer Center of Brevard they told me cat scan showed some enlargement in saliva gland below tongue where tumor was removed. ENT informed me that these glands may no longer work and they will swell, then apparently die...I guess for lack of a better word? Cat scan showed this slight enlargement but no real pain anymore. Assesment was stage 4 cancer? Full body Pet Scan was done. I understood that bright yellow or at least a stroung or bright red showed cancer. I looked online at galleries of Pet Scan pictures and saw that most were a defined bright colored area. Mine showed a non-defined very light red area around the areas near tumor removal. These areas are not in anyway a defined mass and in this pet scan there were other areas undefined all over my body that I pointed out to doctor. He said they weren't cancer. But he wants me to hace 39 radiation treatments and several chemo treatments which will wreak havoc on my teeth, jaw, throat, hair and tastebuds permenently! Any thoughts or expeinces on the vagueness of defined mass and coloration and this need for radiation and chemo v someother type of treatment? Would be appreciated greatly! My ent kept telling me it looked fine! 

Comments

  • donfoo
    donfoo Member Posts: 1,771 Member
    #2
    welcome to CSN

    Hi Bob,

    Welcome to the club. Sounds like you have been dealing with the disease for some time. There is lots of experience here so feel at home. Maybe you can clarify the events as they do not seem logical or standard practice at all.

    Was something noticed in your mouth in April but not diagnosed in April? Or was it diagnosed in April but nothing was done to treat it at that time? Around September, the tumor had grown. It was then diagnosed  and removed?

    If the tests and scans show no other cancer beyond the primary; the surgery achieved negative margins (meaning clear), then they recommend rads. Most of the time surgery is followed by chemo-rads. There are some instances where small T1 tumors may be removed and no chemo-rads.

    Many here were treated with chemo-radiation and suffer varying amounts of short and long term side effects. Unfortunately, that is the result of killing cancer. Only surgery and radiation kill cancer. Chemo may slow and shrink the cancer but does not kill it. One exception is chemo can kill microscopic cancers that may be in the body that are not visible or detectable.

    As to viewing the PET/CT, great fun isn't it. Maybe you saw one of my Youtube videos on my scan results. LOL Fascinating to see all the glowing and  such but as a lay person you have zero ability to interpret what it means. You need to trust your providersm they are the trained experienced experts.

    Good luck,

    Don

  • ratface
    ratface Member Posts: 1,337 Member
    #3
    donfoo said:

    welcome to CSN

    Hi Bob,

    Welcome to the club. Sounds like you have been dealing with the disease for some time. There is lots of experience here so feel at home. Maybe you can clarify the events as they do not seem logical or standard practice at all.

    Was something noticed in your mouth in April but not diagnosed in April? Or was it diagnosed in April but nothing was done to treat it at that time? Around September, the tumor had grown. It was then diagnosed  and removed?

    If the tests and scans show no other cancer beyond the primary; the surgery achieved negative margins (meaning clear), then they recommend rads. Most of the time surgery is followed by chemo-rads. There are some instances where small T1 tumors may be removed and no chemo-rads.

    Many here were treated with chemo-radiation and suffer varying amounts of short and long term side effects. Unfortunately, that is the result of killing cancer. Only surgery and radiation kill cancer. Chemo may slow and shrink the cancer but does not kill it. One exception is chemo can kill microscopic cancers that may be in the body that are not visible or detectable.

    As to viewing the PET/CT, great fun isn't it. Maybe you saw one of my Youtube videos on my scan results. LOL Fascinating to see all the glowing and  such but as a lay person you have zero ability to interpret what it means. You need to trust your providersm they are the trained experienced experts.

    Good luck,

    Don

    I know this is a time of shock and awe but you are misinformed . I had 39 radiation treatments and chemo as your ENT recommends and my taste buds are just fine as well as my teeth four years post treatment. Our staging was the same at stage 4 and your treatment protocol sounds fairly common and routine. I have never been able to open a PET or CT scan Cd on my computer. I think most hospitals have propiretary programs for that. You will drive yourself nuts. I think I saw a figure of the virgin Mary or perhaps it was a chipmonk on one of mine?? Bob, get the written report, Fairly easy to read and understand and spelled out for you. Welcome to the board and please slow down just a bit and take in the holidays as best you can. You will get thru this regime soon enough. All the best!  

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