How ??

mrapp
mrapp Member Posts: 30
in Head and Neck Cancer #1
How is it possible to have a secondary without a primary? Now that the secondary has been treated and I have been thru hell will they find the primary?

One more question. I completed my treatments , which consisted on 39 radiation treatments, I cant get another pet scan until the end of November because the insurance company says I have to wait 90 days from my last treatment. 90 days .. isnt that a bit much? How can the doctors know if they even got all the secondary?

Mitch

Comments

  • Jimbo55
    Jimbo55 Member Posts: 590 Member
    #2
    PET Scans
    Hi Mitch

    I can't offer much on the secondary/primary issue other than there are others on here with the same, the primary has not been found. I'm sure they will be chiming in shortly.

    Regarding the PET scan post treatment, I didn't get my first PET until 6 months after treatment. Normally its 3 months or 6 months. Nothing to do with insurance. Often times a 3 month and even a 6 month PET will have hot spots show up that are not cancerous, but merely inflammation from the radiation. This result is known as a false positive. Having a PET scan immediately after treatment will only increase the chances of getting a false positive. Also the radiation is still working for several weeks after treatment is finished. Cheers.

    Jimbo
  • Hondo
    Hondo Member Posts: 6,636 Member
    #3
    Jimbo55 said:

    PET Scans
    Hi Mitch

    I can't offer much on the secondary/primary issue other than there are others on here with the same, the primary has not been found. I'm sure they will be chiming in shortly.

    Regarding the PET scan post treatment, I didn't get my first PET until 6 months after treatment. Normally its 3 months or 6 months. Nothing to do with insurance. Often times a 3 month and even a 6 month PET will have hot spots show up that are not cancerous, but merely inflammation from the radiation. This result is known as a false positive. Having a PET scan immediately after treatment will only increase the chances of getting a false positive. Also the radiation is still working for several weeks after treatment is finished. Cheers.

    Jimbo

    Hi Mitch

    Agree with Jimbo you don’t want a PET too close right after treatment if finish.

    PS: Welcome to CSN as this is the first time I am seeing you post, glad to have you here with us.

    Hondo
  • mrapp
    mrapp Member Posts: 30
    #4
    Hondo said:

    Hi Mitch

    Agree with Jimbo you don’t want a PET too close right after treatment if finish.

    PS: Welcome to CSN as this is the first time I am seeing you post, glad to have you here with us.

    Hondo

    Posting
    My first time posting but have been here reading and learning for several months.

    Mitch
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #5
    Hi Mitch
    Won't welcome you ...again, LOL as I think I already have...

    Like mentioned, not having the PET is probably a good thing anyways as about 4 - 6 months tend to produce a better first PET than one within 3 months anyways. The early ones tend to show residual or false positives.

    As for the unknown primary, it's not real umcommon, several on here have unknown primaries.

    Best,
    John
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #6
    Hondo said:

    Hi Mitch

    Agree with Jimbo you don’t want a PET too close right after treatment if finish.

    PS: Welcome to CSN as this is the first time I am seeing you post, glad to have you here with us.

    Hondo

    Mitch
    I, too, agree with what Jimbo said. I also have an unknown Primary. Usually, the first PS/CT is to provide a baseline for which future scans can be compared to for changes. My first PS/CT was a 3-month post-tx and showed a possible problem under my tongue. My ENT said it didn't concern him, and ordered my next scans for 9-months later. I'm almost 30-months out, now, so that hot spot on the first test was nothing.

    And, yes, welcome

    kcass
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #7
    Unknown
    I had an unknown with my first go round. my understanding with unknown is they just could not find it. it could be so small that nothing will see it no matter how long they look. many years ago they spent 3 hours looking for with me knocked out and could not find. after getting the news he looked at me and said it is ok we have found that unknown or known they still get the same results, one is not better than the other.

    they were right, unknown then and now unknown is how much longer i will be hear with God's blessing. 15 years 9 months and the clock keeps ticking.

    over the years with experience the doctors have learned that to many false positives where showing up with the scans. for me when they opened me up aft 10 weeks post treatment and the scan showed a hot spot it was wrong. scar tissue is all it was. now they are waiting longing and we are starting to less and less post radiation surgery.

    good luck with your waiting game for your first scan.

    unknown
  • RogerRN43
    RogerRN43 Member Posts: 185
    #8
    Immune system kicked the primary?
    Hi Mitch,

    Theoretically, your primary may have been fought off by your immune system but not before cells escaped to the lymph, that's what my ENT said if my tonsil came back negative. For me, it was buried in the tonsil which is not the usual case because usually the primary tumor has distinct visual characteristics. Despite lack of diagnostic imaging showing my tonsil as a primary, the ENT decided he should take it out anyway, and I'm glad he did.

    You didn't mention chemo, did they offer that extra concurrent treatment as insurance?
    Or would that be the next step if, and hopefully never, you had a reoccurrence?

    I can't comment on the 90 days but that's what they told me I would take to recover, and any mucosal changes caused by radiation healed by then. Perhaps this helps in the PET scan reading.

    Best wishes,
    Roger
  • mrapp
    mrapp Member Posts: 30
    #9
    RogerRN43 said:

    Immune system kicked the primary?
    Hi Mitch,

    Theoretically, your primary may have been fought off by your immune system but not before cells escaped to the lymph, that's what my ENT said if my tonsil came back negative. For me, it was buried in the tonsil which is not the usual case because usually the primary tumor has distinct visual characteristics. Despite lack of diagnostic imaging showing my tonsil as a primary, the ENT decided he should take it out anyway, and I'm glad he did.

    You didn't mention chemo, did they offer that extra concurrent treatment as insurance?
    Or would that be the next step if, and hopefully never, you had a reoccurrence?

    I can't comment on the 90 days but that's what they told me I would take to recover, and any mucosal changes caused by radiation healed by then. Perhaps this helps in the PET scan reading.

    Best wishes,
    Roger

    RogerRN43
    Chemo was never discussed. He just said Rad has a very good percentage of being effective. I pray every night he is correct. I finished treatments Sept. 02, 2011 and still have bad days. It makes me wonder if this is how my life will be from now on? Will I feel or be sick every 3 or 4 days or so for the rest of my life? Well thank God I am alive and I can hug my wife and kids.

    Mitch

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