Pet/Cat scan question

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Dav1965
Dav1965 Member Posts: 132
in Head and Neck Cancer #1
I had stage 4 tongue cancer and cancer in my lyphnodes now they say i am cancer free but i did not have a pet or cat scan all they did was x rays of my chest. They said that i had to much swelling in the other parts of my body to do the other test. They said that with my cancer the next place to have cancer was the lungs. Any body else heard this? Thanks David

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  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #2
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    answer?
    have heard that both the larynx and lungs are the two places it is most common to show up.

    When did your treatment end? Wonder, because of the "swelling" in other parts of your body.

    kcass
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #3
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    David
    I was stage IV SCC unknown primary, 3 lymph nodes were involved out of the 23 that they took. I had 30 radiation treatments after my neck dissection. I will be out two years on May 15. I have not had a pet scan or CT Scan since my treatment ended either. My RO doesn't want me to have the extra radiation exposure and plus, I am also allergic to the diagnostic dye. (found that out during when they injected IVP dye for a kidney test and I couldn't breathe.)

    So what he does is just scope me and send me for a chest X-ray. There are just a couple of us here that aren't getting pet scans every few months. Also since my mouth and throat were such a train wreck with rads, I would probably show false positives anyway. I've never had any of my docs say I am cancer free or anything like that. To quote, I've only heard, "So far so good. Keep it up."

    But yes, they want to check your lungs for any issues that can arise.
  • Glenna M
    Glenna M Member Posts: 1,576
    #4
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    Don't want to discourage you...
    David, I don't want to discourage you but I am surprised that your doctor would say cancer free based upon your x-ray results. My PCP sent me for chest x-rays that showed nothing but because of the symptoms I had and a family history of cancer he ordered a CT scan which discovered the lung cancer. This was followed by a PET which showed I had laryngeal cancer also.

    I am 18 months post treatment and have a CT scan every 3 months but have not had another PET scan and after hearing of all the false positives from the PET I'm glad my doctors don't feel one is necessary.

    I have also heard that lung cancer usually appears in the brain next and head & neck cancers invade the lungs...BUT I don't know if this is a proven fact or just hearsay. I have never really researched it because I am not going to let the fear of my cancers spoil the quality of my life. My doctors are keeping a close eye on both my larynx and my lungs so I am confident they will find anything unusual quickly.

    If you don't mind I have a few questions, what type of treatment did you have..chemo/rads?? When did you finish treatment?? Did you have surgery?? I'm curious because I don't understand your doctor saying there was too much swelling in other parts of your body to do tests.

    Please post again so we will know how you are doing.

    Stay strong,
    Glenna
  • rozaroo
    rozaroo Member Posts: 665
    #5
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    Glenna M said:

    Don't want to discourage you...
    David, I don't want to discourage you but I am surprised that your doctor would say cancer free based upon your x-ray results. My PCP sent me for chest x-rays that showed nothing but because of the symptoms I had and a family history of cancer he ordered a CT scan which discovered the lung cancer. This was followed by a PET which showed I had laryngeal cancer also.

    I am 18 months post treatment and have a CT scan every 3 months but have not had another PET scan and after hearing of all the false positives from the PET I'm glad my doctors don't feel one is necessary.

    I have also heard that lung cancer usually appears in the brain next and head & neck cancers invade the lungs...BUT I don't know if this is a proven fact or just hearsay. I have never really researched it because I am not going to let the fear of my cancers spoil the quality of my life. My doctors are keeping a close eye on both my larynx and my lungs so I am confident they will find anything unusual quickly.

    If you don't mind I have a few questions, what type of treatment did you have..chemo/rads?? When did you finish treatment?? Did you have surgery?? I'm curious because I don't understand your doctor saying there was too much swelling in other parts of your body to do tests.

    Please post again so we will know how you are doing.

    Stay strong,
    Glenna

    Scan
    My oncologist suggested that I have a pet/cat scan done. We only have cat scan's & mri available here. I was almost a year post treatment & took his advice. We are now in the watch & wait process after my scan came back with a few issues. I feel great but he said that mean's nothing.I had to pay out of pocket but I would do it again! He said if he were me he would have it done.That is all it took for me to go.I am a bundle of nerves at the moment, but will find out my result's in two week's.
  • Dav1965
    Dav1965 Member Posts: 132
    #6
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    My surgery information
    I had 95% of my tongue removed and replaced with a piece of my thigh. I had 2 neck dissections. They took 28 lymphnodes on one side and found 8 aggresive cells, on the other side they took 11 and did not find any cancer. I had a trach for a little over a month. My surgery was 16 hours and then i spent 4 days in an induced coma, along with 28 days in the hosppital. All this was in July 29th 2010. When he replaced my tongue he made it too big. He told me that it would be easier to make it smaller than make it bigger if i needed it to be adjusted. He said with replacing that much tongue that getting it perfect the first time was next to impossible. So i had another surgery on March 15th 2011 to make my tongue smaller. I also had 7 weeks of chemo and 3 rounds of cisplatin. I finished chemo/radiation in October 2010. I can talk now but i sound funny compared to what i used to talk like. Strangers can understand me but sometime they ask twice what i said. The chemo was the worst thing for me. Pain does not bother me but i am i a big baby with naseau. LOL I threw up so much with chemo they had to give me fluids every two days, if not i would have to stay in the hospital. I chose the fluids. Also i have had a feeding tube since August 15th 2010. I think it will come out in June if i can keep my weight up. I started eating by mouth April 2nd and i have lost 5 lbs since then. I can not eat enough broth and ensure to keep my weight up. Thanks for asking. David

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