1st pet scan 2 months post radiation

meinken
meinken Member Posts: 38
edited March 2014 in Head and Neck Cancer #1
Just got the results of my pet scan. Finished radiation 2 months ago for NPC. Had several lymphnodes enlarged and metabolicly active and a spot on my thyroid.

The new results are: The nasopharyngeal mass is no longer identified as a discrete structure. Metabolic activity now appears normal. Of the lymph nodes,the ones on the right side are not metabolicly active anymore and only one of two on the left side is still large at 13x13 mm, but metabolic activity went from 3.6 SUV to 2.7, the other on the left side is also mot active..

The only concern atm is : "There is a subtle focus of increased activity associated withe the right lobe of the thyroid gland. Peak activity now measures 3.5 SUV compared to 4.8 SuV previously."

Medical oncologist says to wait 2 months and then get another PET scan, and that he will discuss the results with my ENT and that a neck dissection(?) is a possibility either soon or after the next PET, if there is no improvement. Med oncologist did schedule an appointment for me, with the gastroenteroligist, to have my peg tube removed. However, he wants me to keep the power port for a year.

From your experiences...How bad is this? Any suggestions on things I should discuss with the doctors and questions I should be asking?

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #2
    No expert here...but early PET's do tend to show false positives and residuals from rads and such. Hard to say on your results, but another PET in two months should tell you and the MD's more.

    I have my first annual PET on August 12th, if that's clear my Port comes out in February 2011. My MD likes to leave them for two years.


    Good Luck, God Bless....
    John
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #3
    Skiffin16 said:

    No expert here...but early PET's do tend to show false positives and residuals from rads and such. Hard to say on your results, but another PET in two months should tell you and the MD's more.

    I have my first annual PET on August 12th, if that's clear my Port comes out in February 2011. My MD likes to leave them for two years.


    Good Luck, God Bless....
    John

    I concur with John...
    My Stanford doc has scheduled me for an MRI at my two month point. He won't schedule the PET-CT until at least the three-month point, to minimize the likelihood of false positives. He also noted that a clear PET-CT means a 95% likelihood that I am cancer free, so I anticipate having the discussion about the need for a neck dissection, even with a clear PET-CT, in order to address that pesky 5%.

    Deb
  • stevenl
    stevenl Member Posts: 587
    #4
    D Lewis said:

    I concur with John...
    My Stanford doc has scheduled me for an MRI at my two month point. He won't schedule the PET-CT until at least the three-month point, to minimize the likelihood of false positives. He also noted that a clear PET-CT means a 95% likelihood that I am cancer free, so I anticipate having the discussion about the need for a neck dissection, even with a clear PET-CT, in order to address that pesky 5%.

    Deb

    Same Here
    I had a pet-ct at less than 2 mths. out. It showed activity at 2 spots and I went for biopsies. Both were negative. I believe the pet was way too early, and still have not gotten a satisfactory explanation from any of my medical team why it was done so early.
    Better safe than sorry just doesn't explain it for me. My numbers were around 5 therefore the need for another hospital stay for the biopsies. Still upsets me, but it's water under the bridge now. I think your next one will be more promising.

    Best,
    Steve
  • meinken
    meinken Member Posts: 38
    #5
    thank you
    Thanks to all of you for your comments. I feel a bit less paniced, now. I'll just put in the 2 more months and keep my fingers crossed

    Thanks again
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #6
    So many Pets
    meinken

    1) I would question the PEG removal- I had mine for 15+-months- this early with the outside chance there still is a problem. I still have the Power Port that was installed in Jan/09, so my experience is that keeping over a year is not a problem.

    2) As for getting yet another PS/CT two-months from now: I was told it's not a good idea to have them less than six-months apart, and your med team has you getting two of them within 2-3 months? FYI. False-positives are a problem, also. Did you also get chemo with the radiation? This is 2010, meinken, and it doesn't seem right that your Drs. can think the C might still be active in you. You might want to ask them how they coulda missed anything.

    kcass
  • Hondo
    Hondo Member Posts: 6,636 Member
    #7
    Kent Cass said:

    So many Pets
    meinken

    1) I would question the PEG removal- I had mine for 15+-months- this early with the outside chance there still is a problem. I still have the Power Port that was installed in Jan/09, so my experience is that keeping over a year is not a problem.

    2) As for getting yet another PS/CT two-months from now: I was told it's not a good idea to have them less than six-months apart, and your med team has you getting two of them within 2-3 months? FYI. False-positives are a problem, also. Did you also get chemo with the radiation? This is 2010, meinken, and it doesn't seem right that your Drs. can think the C might still be active in you. You might want to ask them how they coulda missed anything.

    kcass

    Hi Meinken


    Kent and I are both NPC survivors, I am just a little over 5 years from my last treatment and still get a lot of false positives on my PET scans, so don’t go only by it. The problem with NPC it can show up in the old scare tissue, even a biopsy can show positive. My ENT was ready to put me back on Chemo, thank goodness my Oncl doc did his homework first and I am still here 5 years later.

    All the best to you in your journey
  • Pam M
    Pam M Member Posts: 2,196
    #8
    I'm "Watching and Waiting", Too
    Sorry you've got the headache of a less than perfect PET. I got my three month results back July 2 - my doc said he'd like to do another PET in a couple months, but my insurance won't cover it, so he said he still feels comfortable with me being seen by an ENT or oncologist once a month, then doing another PET when my insurance will comply.

    Congrats on losing the PEG. Mine comes out next week.

    Please keep us updated. Do well.
  • Hal61
    Hal61 Member Posts: 655
    #9
    Tough Call
    I'm with everbody else, but I've decided on a partial neck dissection. I just went though the rigors of pre op testing and info gathering today at the hospital where my ENT will do the job. My first (too early) scan came back with minimal activity in one lymph node. This node was one that had originally enlarged--of two--when diagnosed with SCC base of tongue with mets to two adjoining nodes. One was removed for original biopsy. My second scan after over three months came back with still a bit of over-the-limit activity in the same lymph gland. The number was 3.3. My medical onc had always advised the mop up surgery, regardless of radiance numbers. My ENT and radiologist onc were wait-and-see, but my ENT swung to the surgery side after the reading, minimal as it is, persisted. My radiologist intimated--as you are all aware, most oncs try not to "say" anthing they don't have to--that it was still to early, and the reading could still be attibuted to excitation from treatment.
    Lots of folks here had the surgery pre chemo and rads as a matter of course. I was willing to continue as is with a better score on the radiance scale. It was just enough to push me over. I was tired of watching that node, and now the deal is made. Surgeon says a one-night stay for partial is normal with a 10-day, still mobile but no jumping jacks, recovery. I'll keep you posted between pain meds--I told them o.k. to everything as long as I didnt feel any pain, ha.

    Hal
  • Douglas08
    Douglas08 Member Posts: 18
    #10
    stevenl said:

    Same Here
    I had a pet-ct at less than 2 mths. out. It showed activity at 2 spots and I went for biopsies. Both were negative. I believe the pet was way too early, and still have not gotten a satisfactory explanation from any of my medical team why it was done so early.
    Better safe than sorry just doesn't explain it for me. My numbers were around 5 therefore the need for another hospital stay for the biopsies. Still upsets me, but it's water under the bridge now. I think your next one will be more promising.

    Best,
    Steve

    biopsy for positive pet-ct
    Steven

    From my research I've found that the accuracy rate for positive pet scans is less than 50%. Especially if done soon after the end of Rx. Did you have an excision biopsies requiring a hospital stay? Was FNAB(fine needle aspiration biopsy)with ultrasound discussed with you? If so why was that not done? I don't think FNAB requires a hospital stay.
    My husband had his first pet-ct 10 weeks out. It showed some uptake which was considered post Rx changes.Where are you being treated?
    In any event I can understand your anger but so happy to hear your biopsies were neg.
    Don't lose that great smile on your face in your picture!!

    Best Regards,
    Doug
  • stevenl
    stevenl Member Posts: 587
    #11
    Douglas08 said:

    biopsy for positive pet-ct
    Steven

    From my research I've found that the accuracy rate for positive pet scans is less than 50%. Especially if done soon after the end of Rx. Did you have an excision biopsies requiring a hospital stay? Was FNAB(fine needle aspiration biopsy)with ultrasound discussed with you? If so why was that not done? I don't think FNAB requires a hospital stay.
    My husband had his first pet-ct 10 weeks out. It showed some uptake which was considered post Rx changes.Where are you being treated?
    In any event I can understand your anger but so happy to hear your biopsies were neg.
    Don't lose that great smile on your face in your picture!!

    Best Regards,
    Doug

    Biopsies
    Doug,

    I did have excision biopsies but needle biopsies were not discussed with me. Activity was at base of tongue and where my right tonsil was. I am being treated at Baylor All Saints
    In Fort Worth, Texas. I feel I have 3 of the finest doctors in the world.

    Best,
    Steve
  • delnative
    delnative Member Posts: 450
    #12
    Hal61 said:

    Tough Call
    I'm with everbody else, but I've decided on a partial neck dissection. I just went though the rigors of pre op testing and info gathering today at the hospital where my ENT will do the job. My first (too early) scan came back with minimal activity in one lymph node. This node was one that had originally enlarged--of two--when diagnosed with SCC base of tongue with mets to two adjoining nodes. One was removed for original biopsy. My second scan after over three months came back with still a bit of over-the-limit activity in the same lymph gland. The number was 3.3. My medical onc had always advised the mop up surgery, regardless of radiance numbers. My ENT and radiologist onc were wait-and-see, but my ENT swung to the surgery side after the reading, minimal as it is, persisted. My radiologist intimated--as you are all aware, most oncs try not to "say" anthing they don't have to--that it was still to early, and the reading could still be attibuted to excitation from treatment.
    Lots of folks here had the surgery pre chemo and rads as a matter of course. I was willing to continue as is with a better score on the radiance scale. It was just enough to push me over. I was tired of watching that node, and now the deal is made. Surgeon says a one-night stay for partial is normal with a 10-day, still mobile but no jumping jacks, recovery. I'll keep you posted between pain meds--I told them o.k. to everything as long as I didnt feel any pain, ha.

    Hal

    Hey, Hal
    I had a modified radical neck dissection (is that the same as a partial?) after having had the tonsil/tumor removed and after undergoing chemo and rads. I had one stubborn node that just didn't want to shrink. That was the only one that still had any cancer cells in it, but they removed a whole lot more just to be on the safe side.
    I had an overnight stay in the hospital, but the cut me loose the next day. Honestly, the pain wasn't bad at all, but over the years I've gotten the feeling that I may have a higher tolerance for pain than most people. The doc did a great job with the scar, too.
    Good luck. We're pulling for you.

    --Jim in Delaware

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