Radiation Therapy Question

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caviar918
caviar918 Member Posts: 8
in Head and Neck Cancer #1
My husband has completed his radiation/chemo therapy for nasopharyngeal cancer. He is scheduled for his PET Scan on Wednesday. If the radiation/chemo didn't work and cancer is still present what is the next step? Please do not spare any details...I need to know. Thanks.

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  • sonyk728
    sonyk728 Member Posts: 124
    #2
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    Hope
    Congrats on your husband finishing his treatment. I sense that you are scared on what the PET will find, and we have all been that way in waiting to see if the god-awful treatments worked. In my case, I have mouth cancer and 2.5 months after completing chemo and radiation the PET showed a spot on my lung. Ended up having 30% of my lung removed and then more chemo which I finished March 14. New PET scan scheduled for July 7 and of course I am already anxious about that. Point is, hang in there and hope for the best. My prayers and thoughts are with you and your husband!
  • ratface
    ratface Member Posts: 1,337 Member
    #3
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    sonyk728 said:

    Hope
    Congrats on your husband finishing his treatment. I sense that you are scared on what the PET will find, and we have all been that way in waiting to see if the god-awful treatments worked. In my case, I have mouth cancer and 2.5 months after completing chemo and radiation the PET showed a spot on my lung. Ended up having 30% of my lung removed and then more chemo which I finished March 14. New PET scan scheduled for July 7 and of course I am already anxious about that. Point is, hang in there and hope for the best. My prayers and thoughts are with you and your husband!

    There-in lies the problem
    As I came back with four lung spots on my first CT follow-up. I was base of the tongue, stage four. Throw in the mix, that the PET has a 25% error rate, in both directions and you begin to see the dilemma. If he is clear it really doesn't mean he is clear. If they find something, it really dosen;'t mean they found something. My lung spots appear to have been there prior to the cancer. We only know that because nothing has changed in three years. Scans uncover lots of things, some good and some bad. Still, I'll take a clear scan any day, so here is wishing they find nothing and you start off with a clear baseline.
  • phrannie51
    phrannie51 Member Posts: 4,716
    #4
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    I'm not an old hand at this...
    but everything I'm reading here says that people get uptight and nervous when the PET scan is looming near, haven't read one person this hasn't happened to yet.

    One of the best pieces of advice I got since arriving to this group, I got in the first two days....it was "don't fight battles that haven't happened yet"...for the time being, remain positive as you can...as Kent would say "BELIEVE"...Staying out of the future has done wonders for my nerves.

    p
  • ditto1
    ditto1 Member Posts: 660
    #5
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    phrannie51 said:

    I'm not an old hand at this...
    but everything I'm reading here says that people get uptight and nervous when the PET scan is looming near, haven't read one person this hasn't happened to yet.

    One of the best pieces of advice I got since arriving to this group, I got in the first two days....it was "don't fight battles that haven't happened yet"...for the time being, remain positive as you can...as Kent would say "BELIEVE"...Staying out of the future has done wonders for my nerves.

    p

    Good Advice P51
    Love your staying out of the future comment/ maybe easier said than done but we at least need to try/ I spent to much of today worrying about tommorrow/ so I can see how these folks who have gone thru lengthy battles could worry over the scans outcome/ but so many just since we have been on board come back with a Good News, and Im praying their scan falls into that category
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #6
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    Curious...
    When did he finish treatment.....?

    If it was less than 3 - 4 months ago, there is a high probability of having a scan come back which is easily inconclusive due to residual side effects.

    That cooking we always mention that goes on for awhile even after treatment has ended can and does show up as hot spots.

    JG
  • patricke
    patricke Member Posts: 570
    #7
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    Hey caviar918, welcome
    Hey caviar918, welcome aboard. Really, no one, but your husband's doc can tell you what the step will be if the scan comes back positive. In the meantime, as others have suggested, do your best to keep your head in the positive zone about the treatment having done the job. As someone else suggested, hopefully it has been awhile, lets say around 3-6 months since completing treatment. Is your husband just having a PET, or a PET/CT combo, eyes to thighs? Here's hoping for a NED report.

    PATRICK
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #8
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    patricke said:

    Hey caviar918, welcome
    Hey caviar918, welcome aboard. Really, no one, but your husband's doc can tell you what the step will be if the scan comes back positive. In the meantime, as others have suggested, do your best to keep your head in the positive zone about the treatment having done the job. As someone else suggested, hopefully it has been awhile, lets say around 3-6 months since completing treatment. Is your husband just having a PET, or a PET/CT combo, eyes to thighs? Here's hoping for a NED report.

    PATRICK

    First PS/CT
    This scan is typically to establish a "baseline" for future scans to be compared with. There is a significant probabiltiy something possibly will show, but that doesn't mean it's live C- might be a false Positive. I was told something may have shown under my tongue, and my ENT was so concerned that he scheduled my next scan for 8-months later, and to see him a week after. That's it! That next scan was clean. Know there's been a couple others who had Drs who were mistaken about the first scans, and took them in for a biopsy Op- which revealed no C.

    Anxiety cannot be avoided, but should not lead to unsound decisions. If C does still exist, and a biopsy proves it- typical for surgical removal to be the only option, though nowadays there are a number of different chemo meds that might help. Bottom-line, though, is that if anything drastic is proposed- get thee to a major C center to get the best option from the best Drs, and the only way to know for sure if it is C is with an actual biopsy that proves it.

    Prayers

    kcass
  • Mikemetz
    Mikemetz Member Posts: 465 Member
    #9
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    Keep this in mind
    I agree with everyone's comments--especially the ones about the high potential for a false positive on the first scan after treatment. That was my experience. If you can't "stay out of the future" (what a great way to say that!), then keep in mind that HNC has a survival rate of around 80% these days--so the odds are well in your husband's favor going forward--even if this scan does not show he's 100% clear right now.

    Mike
  • caviar918
    caviar918 Member Posts: 8
    #10
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    Skiffin16 said:

    Curious...
    When did he finish treatment.....?

    If it was less than 3 - 4 months ago, there is a high probability of having a scan come back which is easily inconclusive due to residual side effects.

    That cooking we always mention that goes on for awhile even after treatment has ended can and does show up as hot spots.

    JG

    Curious Answered
    It's only been 2 months since he finished his treatment.
  • caviar918
    caviar918 Member Posts: 8
    #11
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    patricke said:

    Hey caviar918, welcome
    Hey caviar918, welcome aboard. Really, no one, but your husband's doc can tell you what the step will be if the scan comes back positive. In the meantime, as others have suggested, do your best to keep your head in the positive zone about the treatment having done the job. As someone else suggested, hopefully it has been awhile, lets say around 3-6 months since completing treatment. Is your husband just having a PET, or a PET/CT combo, eyes to thighs? Here's hoping for a NED report.

    PATRICK

    Thanks for the welcome...
    I have to admit I've been a lurker for the past few months since I found this site. Hubby is scheduled for a PET/CT combo. As I mentioned in a previous post it's been 2 months since he finished treatment.
  • caviar918
    caviar918 Member Posts: 8
    #12
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    Mikemetz said:

    Keep this in mind
    I agree with everyone's comments--especially the ones about the high potential for a false positive on the first scan after treatment. That was my experience. If you can't "stay out of the future" (what a great way to say that!), then keep in mind that HNC has a survival rate of around 80% these days--so the odds are well in your husband's favor going forward--even if this scan does not show he's 100% clear right now.

    Mike

    I always make the comment...
    to other people that I can't worry about what hasn't happened yet. But with tomorrow looming it's very difficult to "stay out of the future". I didn't know about the possible false positive on the first scan...thanks for the heads up on that.

    I will keep you posted on the results. I'm glad I found this site. I'm going to need people like you to support us on our journey. Thanks for all the info and good wishes.
  • caviar918
    caviar918 Member Posts: 8
    #13
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    Kent Cass said:

    First PS/CT
    This scan is typically to establish a "baseline" for future scans to be compared with. There is a significant probabiltiy something possibly will show, but that doesn't mean it's live C- might be a false Positive. I was told something may have shown under my tongue, and my ENT was so concerned that he scheduled my next scan for 8-months later, and to see him a week after. That's it! That next scan was clean. Know there's been a couple others who had Drs who were mistaken about the first scans, and took them in for a biopsy Op- which revealed no C.

    Anxiety cannot be avoided, but should not lead to unsound decisions. If C does still exist, and a biopsy proves it- typical for surgical removal to be the only option, though nowadays there are a number of different chemo meds that might help. Bottom-line, though, is that if anything drastic is proposed- get thee to a major C center to get the best option from the best Drs, and the only way to know for sure if it is C is with an actual biopsy that proves it.

    Prayers

    kcass

    Thanks
    for the info on what could happen with this baseline scan. Thankfully hubby is already going to a major cancer center. In fact I work in a hospital and sent him to our competition when all this started because I knew they were the experts!

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