PET Results

jbob1981
jbob1981 Member Posts: 12
edited March 2014 in Head and Neck Cancer #1
I finished radiation about 10 weeks ago for a malignant paraganglioma in the right side of my neck, it had also spread to 4 lymphs. I just had my first follow up PET scan and it showed two 6mm nodules on my right lung. They did a chest CT to make sure the spot were really there and sure enough they showed up on the CT also. My ENT said that the nodules are very small, and not to worry to much about them. He is sending me to see a lung doctor, but I'm not sure when yet, as I just found all this out late on Friday afternoon. My wife and I are both very concerned about these spots, but the doctor does not. Should I be freaking out, is there a chance they are nothing. I have never smoked or anything like that, I had two chest xrays in the fall that were fine. Has anybody else delt with anything like this?

Thanks
Josh

Comments

  • pattyanny
    pattyanny Member Posts: 544
    #2
    Hi Josh
    I am 6 months clean after my PET scan in April. I had cancer in lymph nodes on both sides of the neck. I am going for a CT scan on Monday with contrast for 4 spots on my lungs.
    My Onc does not seem concerned, so I am trying to stay positive. I presume they will keep an eye on them. I believe others have had this aftereffect too, because I read it on another posting. Stay positive, and enjoy each day. You have made it this far, which is darn good! If your Dr is not worried, do not be overly concerned, but be proactive.
    I wish you well. Patty
  • ratface
    ratface Member Posts: 1,337 Member
    #3
    pattyanny said:

    Hi Josh
    I am 6 months clean after my PET scan in April. I had cancer in lymph nodes on both sides of the neck. I am going for a CT scan on Monday with contrast for 4 spots on my lungs.
    My Onc does not seem concerned, so I am trying to stay positive. I presume they will keep an eye on them. I believe others have had this aftereffect too, because I read it on another posting. Stay positive, and enjoy each day. You have made it this far, which is darn good! If your Dr is not worried, do not be overly concerned, but be proactive.
    I wish you well. Patty

    I have four lung spots also
    Nodules or lung spots they are all the same thing. There exist at least a dozen reasons other than cancer for their existence. 23% of the population walks around with them never knowing they exist until they happen to get a CT scan for something else. Histoplasmosis is the most common cause and related to midwestern water. I have a 9mm calcified, no big deal and three others in the 4mm range, My 9 month CT is on Monday. If there is no change it will be a huge day for me. The recommended period for watching them is 2 yrs. before they can be certain. You are interested in their locations and appearance. At 6mm I don't think a biopsy will be recommeded. Increasing in vol;umn by 25% is considered doubling. Most likely your in for an anxious wait along with the rest of us. Start reading about a procedure called VATS, vidio assisted ?????? surgery which has had a very good sucess rate at removing them. Also research microcoils. In all honestly they scare the hell out of me but don't seem to bother my oncologist at all. Perhaps the three of us and any others who might have them can form some kind of a pact here to see what course of action and direction our individual cases go. Welcome to the world of this cancer is never over. I do empathize with you, lets stay connected. You to Patty!
  • ratface
    ratface Member Posts: 1,337 Member
    #4
    ratface said:

    I have four lung spots also
    Nodules or lung spots they are all the same thing. There exist at least a dozen reasons other than cancer for their existence. 23% of the population walks around with them never knowing they exist until they happen to get a CT scan for something else. Histoplasmosis is the most common cause and related to midwestern water. I have a 9mm calcified, no big deal and three others in the 4mm range, My 9 month CT is on Monday. If there is no change it will be a huge day for me. The recommended period for watching them is 2 yrs. before they can be certain. You are interested in their locations and appearance. At 6mm I don't think a biopsy will be recommeded. Increasing in vol;umn by 25% is considered doubling. Most likely your in for an anxious wait along with the rest of us. Start reading about a procedure called VATS, vidio assisted ?????? surgery which has had a very good sucess rate at removing them. Also research microcoils. In all honestly they scare the hell out of me but don't seem to bother my oncologist at all. Perhaps the three of us and any others who might have them can form some kind of a pact here to see what course of action and direction our individual cases go. Welcome to the world of this cancer is never over. I do empathize with you, lets stay connected. You to Patty!

    Couple of more things
    Chest x-rays can't pick them up at that size so discard those results altogether as they are meaningless. You don't mention if the PET showed FDG uptake. No uptake on the nodules would be best, but again the PET is wrong 25% of the time so uptake is also not conclusive of anything at this point. Time is the key here. If that philosophy has changed please let me know and post so I can learn something and possibly explore that treatment.
  • jbob1981
    jbob1981 Member Posts: 12
    #5
    ratface said:

    Couple of more things
    Chest x-rays can't pick them up at that size so discard those results altogether as they are meaningless. You don't mention if the PET showed FDG uptake. No uptake on the nodules would be best, but again the PET is wrong 25% of the time so uptake is also not conclusive of anything at this point. Time is the key here. If that philosophy has changed please let me know and post so I can learn something and possibly explore that treatment.

    Thanks
    Thanks Patty and Rat for he replies, you are both putting my mind at ease for the weekend. I guess I just need to wait and see what they tell me on Monday. I feel so good these days I can't beleive that there may be something else wrong. I know my wife and I can get through whatever we need to, but the not knowing is the wrost. Thanks again, and I will try to keep in touch and let you know how things workout. Best of luck to both of you in your journeys.

    Thanks Again
    Josh
  • jbob1981
    jbob1981 Member Posts: 12
    #6
    jbob1981 said:

    Thanks
    Thanks Patty and Rat for he replies, you are both putting my mind at ease for the weekend. I guess I just need to wait and see what they tell me on Monday. I feel so good these days I can't beleive that there may be something else wrong. I know my wife and I can get through whatever we need to, but the not knowing is the wrost. Thanks again, and I will try to keep in touch and let you know how things workout. Best of luck to both of you in your journeys.

    Thanks Again
    Josh

    Just an update.
    I just received a call from the lung doctors office and they want to see me on Wendsday morning. I will post an update when I have more info.

    Thanks
    Josh
  • jbob1981
    jbob1981 Member Posts: 12
    #7
    jbob1981 said:

    Just an update.
    I just received a call from the lung doctors office and they want to see me on Wendsday morning. I will post an update when I have more info.

    Thanks
    Josh

    Another Update.
    I met two pulmonary doctors at U of Penn on Wendsday and they have decided to have me can a MIBG Scintography scan. They feel this is the best way to see if the spots in my lung are paraganglioma or not. They both felt that I should have had this study done already anyways. We are hoping to have the study done next week. Both doctors were very reassuring and spent lots of time talking with my wife and me. One of them even gave us his cell and home phone numbers and told to call him if we needed anything. It is always nice to meet doctors that actully care. I will try to udate this again once I have the scan results. Until then I am going to enjoy the nice weather that is finally here!
  • Hondo
    Hondo Member Posts: 6,636 Member
    #8
    jbob1981 said:

    Another Update.
    I met two pulmonary doctors at U of Penn on Wendsday and they have decided to have me can a MIBG Scintography scan. They feel this is the best way to see if the spots in my lung are paraganglioma or not. They both felt that I should have had this study done already anyways. We are hoping to have the study done next week. Both doctors were very reassuring and spent lots of time talking with my wife and me. One of them even gave us his cell and home phone numbers and told to call him if we needed anything. It is always nice to meet doctors that actully care. I will try to udate this again once I have the scan results. Until then I am going to enjoy the nice weather that is finally here!

    Hi jbob
    Wishing you the best, take care
  • ratface
    ratface Member Posts: 1,337 Member
    #9
    Hondo said:

    Hi jbob
    Wishing you the best, take care

    just googled it
    and didn't understand most of what I read. I will be very interested in your follow-up post and anything you can elaborate on this type of imaging. Apparently it's the same CT scanning but they use a different substance at 24, 48, and 72 hour intervals????????????????
  • ratface
    ratface Member Posts: 1,337 Member
    #10
    ratface said:

    just googled it
    and didn't understand most of what I read. I will be very interested in your follow-up post and anything you can elaborate on this type of imaging. Apparently it's the same CT scanning but they use a different substance at 24, 48, and 72 hour intervals????????????????

    MY CT scans
    I failed to mention that my scans from monday showed the four lung spots to be stable/no change! Still, josh if you have found a test that precludes me from going through this torture for another 18 months please fill us in on it.
  • carolinagirl67
    carolinagirl67 Member Posts: 153
    #11
    Spots
    Hi,

    It seems like this happens to everyone as it happened to us too. My husband finished rad/chemo for tonsil cancer in Sept. But first PET showed "spots" in lymph nodes near lung. Biopsy confirmed it was cancer cells so we did more chemo and then was told that it may have been there all along and probably is nothing. But we finished our last chemo cycle today, since we already started might as well finish it up since my husband was able to handle it pretty well. He did not miss work and was able to keep his golf game up. So in a nutshell, don't worry or panick. You will be fine. Eat right, stay stress free, excersize and stay positive. Peace be with you! Donna

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