Paranoia strikes at night...

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phrannie51
phrannie51 Member Posts: 4,716
Tonight I think I found another node swelling in my neck. I know where the two are that the Dr. knows about, one is obvious to see, the other easily felt...but now a third? I see the radiologist today, but now am worrying that my PET scan is already outdated. Do I show it to him? I don't want to get two nodes nuked when it should be three. I just don't want to go thru everything and have them say "ooops"...

Is this even possible?

p

Comments

  • LeoS2323
    LeoS2323 Member Posts: 160
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    No Harm In Telling Him
    Best to make the radiologist aware phrannie, just in case. Also you don't want to kick yourself for not mentioning something.

    Nodes can obviously go up for different reasons but of course in our case it's obviously a major concern. Seem to be different approaches to dealing with nodes though - my oncologist is taking all of mine out from around the one which was definitely cancerous to investigate them in the lab, before deciding on radiology; whilst yours seem to be getting zapped?

    Good luck with everything!

    All the best

    Leo
  • D Lewis
    D Lewis Member Posts: 1,581 Member
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    Probably not possible.
    When they do the test run and modeling for the calculations for radiation dosages, it's based on a scan taken while you are under your brand-new mask. At least, that was my experience. Any further involvement of lymph nodes would be seen then. Be that as it may, by all means, DO discuss this new node with your doctors.

    Deb
  • phrannie51
    phrannie51 Member Posts: 4,716
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    I showed the Rad-doc the node I'd found....
    he said, not to worry...that they'll be nuking all the lymph nodes near to the two that lit up in the PET scan...that eased my mind a lot.

    p
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
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    I showed the Rad-doc the node I'd found....
    he said, not to worry...that they'll be nuking all the lymph nodes near to the two that lit up in the PET scan...that eased my mind a lot.

    p

    Another node
    Not to worry, Phrannie. Just make them aware ot it. As has been stated, the rads will be applied to a number of places, and the new swelling will be one of them, for sure. My lowest was real close to my Thyroid, and wondered it it was Thyroid C, but it wasn't.

    Go for my 3-year PS/CT tomorrow, as you will also someday do. Punched-out after 8-hours just for the occasion! Oh yeah. OF NOTE to all who just happen to read this: radiation place where I go even finally advised that I do a Xanax before the scan, which is a subject that was discussed a couple years ago, here, as a result of a study which noted the tissue reaction to Xanax makes the probability of a falsePositive less. Just something for all to consider.

    kcass
  • phrannie51
    phrannie51 Member Posts: 4,716
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    Kent Cass said:

    Another node
    Not to worry, Phrannie. Just make them aware ot it. As has been stated, the rads will be applied to a number of places, and the new swelling will be one of them, for sure. My lowest was real close to my Thyroid, and wondered it it was Thyroid C, but it wasn't.

    Go for my 3-year PS/CT tomorrow, as you will also someday do. Punched-out after 8-hours just for the occasion! Oh yeah. OF NOTE to all who just happen to read this: radiation place where I go even finally advised that I do a Xanax before the scan, which is a subject that was discussed a couple years ago, here, as a result of a study which noted the tissue reaction to Xanax makes the probability of a falsePositive less. Just something for all to consider.

    kcass

    Good thing to know, Kent...
    I have a legal pad I've written notes on since I started reading this forum...the "practical" things...for easy reference. This tid-bit will be added...

    Good luck tomorrow...soon you'll be adding this scan to your stack of perfect scans.

    p
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    Kent Cass said:

    Another node
    Not to worry, Phrannie. Just make them aware ot it. As has been stated, the rads will be applied to a number of places, and the new swelling will be one of them, for sure. My lowest was real close to my Thyroid, and wondered it it was Thyroid C, but it wasn't.

    Go for my 3-year PS/CT tomorrow, as you will also someday do. Punched-out after 8-hours just for the occasion! Oh yeah. OF NOTE to all who just happen to read this: radiation place where I go even finally advised that I do a Xanax before the scan, which is a subject that was discussed a couple years ago, here, as a result of a study which noted the tissue reaction to Xanax makes the probability of a falsePositive less. Just something for all to consider.

    kcass

    Xanax...
    I'd be better off taking the xanax for the few days after until I get the report, LOL....

    Hoping for nothing but great news on your upcoming report bro.

    Best,
    John
  • Hondo
    Hondo Member Posts: 6,636 Member
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    Kent Cass said:

    Another node
    Not to worry, Phrannie. Just make them aware ot it. As has been stated, the rads will be applied to a number of places, and the new swelling will be one of them, for sure. My lowest was real close to my Thyroid, and wondered it it was Thyroid C, but it wasn't.

    Go for my 3-year PS/CT tomorrow, as you will also someday do. Punched-out after 8-hours just for the occasion! Oh yeah. OF NOTE to all who just happen to read this: radiation place where I go even finally advised that I do a Xanax before the scan, which is a subject that was discussed a couple years ago, here, as a result of a study which noted the tissue reaction to Xanax makes the probability of a falsePositive less. Just something for all to consider.

    kcass

    Hi Kent
    Keeping you in my prayer big brother on the PET. Wow three years already

    Thanks for the info on the Xanax

    God bless
    Hondo
  • Hondo
    Hondo Member Posts: 6,636 Member
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    LeoS2323 said:

    No Harm In Telling Him
    Best to make the radiologist aware phrannie, just in case. Also you don't want to kick yourself for not mentioning something.

    Nodes can obviously go up for different reasons but of course in our case it's obviously a major concern. Seem to be different approaches to dealing with nodes though - my oncologist is taking all of mine out from around the one which was definitely cancerous to investigate them in the lab, before deciding on radiology; whilst yours seem to be getting zapped?

    Good luck with everything!

    All the best

    Leo

    Hi phrannie
    Make sure the doctor knows every little thing that you might see or feel in your head or neck. I hate when they tell me that not to worry bit, I normally say would you not worry if it was in your neck.

    Wishing you the best
    Hondo
  • Tonsil Dad
    Tonsil Dad Member Posts: 488
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    Hondo said:

    Hi Kent
    Keeping you in my prayer big brother on the PET. Wow three years already

    Thanks for the info on the Xanax

    God bless
    Hondo

    Congrats
    A big high five on three years Kent, many more to come.
    May God continue to bless you with NED......

    God bless to all,
    Tonsil Dad.

    Dan.
  • sparroweye65
    sparroweye65 Member Posts: 6
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    Skiffin16 said:

    Xanax...
    I'd be better off taking the xanax for the few days after until I get the report, LOL....

    Hoping for nothing but great news on your upcoming report bro.

    Best,
    John

    Paranoid
    I sure understand the paranoid part. Xanax was my friend for a year after finishing radiation treatment for stage 1.5 squamous of
    my tonsil scar tissue. If I get a sore place, a canker sore, anything I am panicking until I see the ENT. I am due for my six month
    checkup this month. I just noticed a funny little white calcium spot behind my bottom back molar. Its probably always been there
    but now I notice everything. And for the first time my ears are itching internally again. Freaks me out. After radiation my ears
    never itched at all for a few years. Also, why for this squamous cancer of my tonsils do I have to get six month checkups for five
    years and then yearly checkups for life. Other cancers, with stage one, say Melanoma just go for five years and then no more.
    I see other people with different types of cancer progress to just once a year. I don't understand it.

    I found my cancer very early thanks to my dental hygienist. She had been telling me I was not getting the plaque behind the tooth.
    She said to floss while looking in the mirror. So I was doing that and looked down my throat. And saw a little tiny pink bud. It
    was where my tonsil used to be. I thought, oh maybe my tonsil is growing back. Went to Doctor. Sent me straight to an ENT.
    They said, How did you find this. I never had any symptoms. No enlarged nodes, no trouble swallowing nothing. So at first they
    were not sure what treatment to give me. I had surgery. And finally they agreed on Toma radiation, pin point with daily scan just
    before radiation. I am sure all the scanning will come back to bite me in the butt but I am 65 so hoping I don't live that long to find
    out. What bugs me. They did repeated biopsy's wanting to find it was caused by HPV virus. But it never came back like that.
    Well, about five years before I had this Bowens squamous removed from my forehead. He did excising all around the borders, sent
    to lab. Felt he got it all. but it was so near my eyebrows. I read that Bowens can travel down eyebrow or hair folicles. I said to the
    Oncologist. Don't you think maybe this is the squamous that started on my forehead. He said, Cancer doesn't travel that way. It would
    go to your nodes from your forehead. The longer I deal with specialists, the more I realize they don't know anything. I have had two
    PET scans. No cancer was found anywhere else. So now three years later. No more PET scans. I asked why not. The Radiologist
    said, Because during your seven weeks of radiation you had a daily scan. We never saw any return or growth of the cancer. It worries
    me as I just had a friend who passed her five year checkup for Melanoma in UK. And they never did any scans during checkups. Just
    manipulated her nodes on leg, behind knee. Now in her sixth year she has a lump in same spot where original Melanoma occurred.The biopsy says Melanoma. Its in nodes behind her knee. Now they do the MRI and CT scans to see if spread anywhere else. Why not have
    done them at 2 year checkup or 4 year checkup. She said, why did I go for checkups, and who knows how long this has been still lurking in my body. I think maybe UK medicine is not so good. I am going through constant dental work. Already three crowns in the
    side where radiation was directed. And three more buckle fillings on that side. I can see I will lose all my teeth. And I had such good teeth. Sorry for the Rant. I still have anger issues over the treatments. I think once you have had cancer, it is always there, maybe microscopic but there. The best thing to do is make your body as inhospitable to cancer growing as you can. Eat healthy, drop sugar.
    Eat unprocessed good. Limit exposure to too many electronic devices. I no longer use a cell phone. I feel for everyone on here. I have walked in some of your shoes. ps I am thinking about getting my xanax prescription back just to get me through all these dental treatments. And does anyone know when your thyroid quits working. I was told due to radiation my thyroid will quit and I will need to take thyroid. Well, its been three years and I am tired of getting this blood work every six months. How long does my thyroid function after radiation. Or maybe they were wrong. Heaven forbid, they might be wrong. Sorry, I just do not have a lot of faith in the medical doctors anymore. I realize now they are just practicing medicine.
  • sparroweye65
    sparroweye65 Member Posts: 6
    Options
    Kent Cass said:

    Another node
    Not to worry, Phrannie. Just make them aware ot it. As has been stated, the rads will be applied to a number of places, and the new swelling will be one of them, for sure. My lowest was real close to my Thyroid, and wondered it it was Thyroid C, but it wasn't.

    Go for my 3-year PS/CT tomorrow, as you will also someday do. Punched-out after 8-hours just for the occasion! Oh yeah. OF NOTE to all who just happen to read this: radiation place where I go even finally advised that I do a Xanax before the scan, which is a subject that was discussed a couple years ago, here, as a result of a study which noted the tissue reaction to Xanax makes the probability of a falsePositive less. Just something for all to consider.

    kcass

    PET scans or CT checks
    Kent. Do you think I should ask my new ENT here in North Carolina if they should do a three year scan. I will be going for my
    three year checkup. I thought I was at the best radiologist in Florida in Tampa at Moffits. I loved Dr. Trotte. But he did not do
    anymore PET scans after my radiation was done. But I saw other patients of his getting follow up scans after a year. I asked him
    why. He said because in your Toma treatment you had a daily scan. We never saw anything at all coming back. That was only
    over a seven week period. It has now been three years. I don't want to be that person who didn't have a scan for five years, And
    then oops, its back at the sixth year. I am so paranoid. I guess because mine was stage 1.5 with nothing showing on my two PET
    scans, no nodes envolved. Nothing. They think I don't need repeated scans. I feel like I am waiting for the other shoe to drop.
    And how do we go on and forget about this. I don't think I can ever relax. And do get the xanax. I had it for my mask scans, I had
    it for my two PET scans. It really made a difference. And I took it daily before radiation. Just one 5.0 per day. And I did that even
    after treatment for about a year. And then I just stopped cold turkey. Never once missed it. They say its addictive but I never
    found it to be so. It was also very helpful if you got stressed at night, thinking about things. It would help you sleep. I don't know
    why doctors are so hesitant to prescribe it. Maybe they don't get a big enough kick back. It is a very cheap drug. Not one they
    are pushing. My family doctor kept pushing anti depressants at me after treatment that dried out my throat so bad, I would
    choke at night and could not swallow. I'm sorry but physicians had just become pill pushers and test result readers. Remember the
    last time a doctor actually had you say, Ah.... And looked in your throat. No, me neither. I think I was maybe 12 or 10. Way back then. And it seems like physician assistants now do all the work, and the doctor see's you ever other visit. Medicine has not advanced in my opinion. Maybe for the doctor. Not for us.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Options

    Paranoid
    I sure understand the paranoid part. Xanax was my friend for a year after finishing radiation treatment for stage 1.5 squamous of
    my tonsil scar tissue. If I get a sore place, a canker sore, anything I am panicking until I see the ENT. I am due for my six month
    checkup this month. I just noticed a funny little white calcium spot behind my bottom back molar. Its probably always been there
    but now I notice everything. And for the first time my ears are itching internally again. Freaks me out. After radiation my ears
    never itched at all for a few years. Also, why for this squamous cancer of my tonsils do I have to get six month checkups for five
    years and then yearly checkups for life. Other cancers, with stage one, say Melanoma just go for five years and then no more.
    I see other people with different types of cancer progress to just once a year. I don't understand it.

    I found my cancer very early thanks to my dental hygienist. She had been telling me I was not getting the plaque behind the tooth.
    She said to floss while looking in the mirror. So I was doing that and looked down my throat. And saw a little tiny pink bud. It
    was where my tonsil used to be. I thought, oh maybe my tonsil is growing back. Went to Doctor. Sent me straight to an ENT.
    They said, How did you find this. I never had any symptoms. No enlarged nodes, no trouble swallowing nothing. So at first they
    were not sure what treatment to give me. I had surgery. And finally they agreed on Toma radiation, pin point with daily scan just
    before radiation. I am sure all the scanning will come back to bite me in the butt but I am 65 so hoping I don't live that long to find
    out. What bugs me. They did repeated biopsy's wanting to find it was caused by HPV virus. But it never came back like that.
    Well, about five years before I had this Bowens squamous removed from my forehead. He did excising all around the borders, sent
    to lab. Felt he got it all. but it was so near my eyebrows. I read that Bowens can travel down eyebrow or hair folicles. I said to the
    Oncologist. Don't you think maybe this is the squamous that started on my forehead. He said, Cancer doesn't travel that way. It would
    go to your nodes from your forehead. The longer I deal with specialists, the more I realize they don't know anything. I have had two
    PET scans. No cancer was found anywhere else. So now three years later. No more PET scans. I asked why not. The Radiologist
    said, Because during your seven weeks of radiation you had a daily scan. We never saw any return or growth of the cancer. It worries
    me as I just had a friend who passed her five year checkup for Melanoma in UK. And they never did any scans during checkups. Just
    manipulated her nodes on leg, behind knee. Now in her sixth year she has a lump in same spot where original Melanoma occurred.The biopsy says Melanoma. Its in nodes behind her knee. Now they do the MRI and CT scans to see if spread anywhere else. Why not have
    done them at 2 year checkup or 4 year checkup. She said, why did I go for checkups, and who knows how long this has been still lurking in my body. I think maybe UK medicine is not so good. I am going through constant dental work. Already three crowns in the
    side where radiation was directed. And three more buckle fillings on that side. I can see I will lose all my teeth. And I had such good teeth. Sorry for the Rant. I still have anger issues over the treatments. I think once you have had cancer, it is always there, maybe microscopic but there. The best thing to do is make your body as inhospitable to cancer growing as you can. Eat healthy, drop sugar.
    Eat unprocessed good. Limit exposure to too many electronic devices. I no longer use a cell phone. I feel for everyone on here. I have walked in some of your shoes. ps I am thinking about getting my xanax prescription back just to get me through all these dental treatments. And does anyone know when your thyroid quits working. I was told due to radiation my thyroid will quit and I will need to take thyroid. Well, its been three years and I am tired of getting this blood work every six months. How long does my thyroid function after radiation. Or maybe they were wrong. Heaven forbid, they might be wrong. Sorry, I just do not have a lot of faith in the medical doctors anymore. I realize now they are just practicing medicine.

    One Liners....
    Man, that's a lot of one liners.....LOL.

    As for your thyroid...you mention getting blood work every six months. If that's the case, they should be checking your Free T4 and TSH levels, both are indicators of thyroid function.

    There is no absolute that yours will go out. Some on here have had problems, most that do are easily treated with Synthroid or some other synthetic drug.

    Others have had no issues...

    Best,
    John
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Options

    PET scans or CT checks
    Kent. Do you think I should ask my new ENT here in North Carolina if they should do a three year scan. I will be going for my
    three year checkup. I thought I was at the best radiologist in Florida in Tampa at Moffits. I loved Dr. Trotte. But he did not do
    anymore PET scans after my radiation was done. But I saw other patients of his getting follow up scans after a year. I asked him
    why. He said because in your Toma treatment you had a daily scan. We never saw anything at all coming back. That was only
    over a seven week period. It has now been three years. I don't want to be that person who didn't have a scan for five years, And
    then oops, its back at the sixth year. I am so paranoid. I guess because mine was stage 1.5 with nothing showing on my two PET
    scans, no nodes envolved. Nothing. They think I don't need repeated scans. I feel like I am waiting for the other shoe to drop.
    And how do we go on and forget about this. I don't think I can ever relax. And do get the xanax. I had it for my mask scans, I had
    it for my two PET scans. It really made a difference. And I took it daily before radiation. Just one 5.0 per day. And I did that even
    after treatment for about a year. And then I just stopped cold turkey. Never once missed it. They say its addictive but I never
    found it to be so. It was also very helpful if you got stressed at night, thinking about things. It would help you sleep. I don't know
    why doctors are so hesitant to prescribe it. Maybe they don't get a big enough kick back. It is a very cheap drug. Not one they
    are pushing. My family doctor kept pushing anti depressants at me after treatment that dried out my throat so bad, I would
    choke at night and could not swallow. I'm sorry but physicians had just become pill pushers and test result readers. Remember the
    last time a doctor actually had you say, Ah.... And looked in your throat. No, me neither. I think I was maybe 12 or 10. Way back then. And it seems like physician assistants now do all the work, and the doctor see's you ever other visit. Medicine has not advanced in my opinion. Maybe for the doctor. Not for us.

    Lee Moffit Center
    You must be near Tampa..., I'm in Lakeland and my facility is associated with Moffit.

    Not sure of your MD, my ENT still scopes me regularly...every six weeks the first year, every 3 - 4 months the secons and now every six going into year three.

    I get scans every six months, first a CT, six months later a PET.

    Oh, and they have me say EEEEE every scope, and my GP does still have me turn my head and cough, and umm say ahhhh , LOL.

    JG
  • phrannie51
    phrannie51 Member Posts: 4,716
    Options

    PET scans or CT checks
    Kent. Do you think I should ask my new ENT here in North Carolina if they should do a three year scan. I will be going for my
    three year checkup. I thought I was at the best radiologist in Florida in Tampa at Moffits. I loved Dr. Trotte. But he did not do
    anymore PET scans after my radiation was done. But I saw other patients of his getting follow up scans after a year. I asked him
    why. He said because in your Toma treatment you had a daily scan. We never saw anything at all coming back. That was only
    over a seven week period. It has now been three years. I don't want to be that person who didn't have a scan for five years, And
    then oops, its back at the sixth year. I am so paranoid. I guess because mine was stage 1.5 with nothing showing on my two PET
    scans, no nodes envolved. Nothing. They think I don't need repeated scans. I feel like I am waiting for the other shoe to drop.
    And how do we go on and forget about this. I don't think I can ever relax. And do get the xanax. I had it for my mask scans, I had
    it for my two PET scans. It really made a difference. And I took it daily before radiation. Just one 5.0 per day. And I did that even
    after treatment for about a year. And then I just stopped cold turkey. Never once missed it. They say its addictive but I never
    found it to be so. It was also very helpful if you got stressed at night, thinking about things. It would help you sleep. I don't know
    why doctors are so hesitant to prescribe it. Maybe they don't get a big enough kick back. It is a very cheap drug. Not one they
    are pushing. My family doctor kept pushing anti depressants at me after treatment that dried out my throat so bad, I would
    choke at night and could not swallow. I'm sorry but physicians had just become pill pushers and test result readers. Remember the
    last time a doctor actually had you say, Ah.... And looked in your throat. No, me neither. I think I was maybe 12 or 10. Way back then. And it seems like physician assistants now do all the work, and the doctor see's you ever other visit. Medicine has not advanced in my opinion. Maybe for the doctor. Not for us.

    Every Dr. I've seen in the last 2 months
    has grabbed a tongue depressor and had me say ahhhhhh...(even the Butt Dr., who'll be putting in my feeding tube..LOL).

    For your own peace of mind, I think you should demand a scan. It seems from reading on here, that scanning every three months for a year...then what..every 6 months?...then every year until you reach 5 years NEDis kind of a normal course for this disease.

    p
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Options

    Every Dr. I've seen in the last 2 months
    has grabbed a tongue depressor and had me say ahhhhhh...(even the Butt Dr., who'll be putting in my feeding tube..LOL).

    For your own peace of mind, I think you should demand a scan. It seems from reading on here, that scanning every three months for a year...then what..every 6 months?...then every year until you reach 5 years NEDis kind of a normal course for this disease.

    p

    Butt Doctor....
    LOL, I know there is a joke in there just dying to come out......butt, I'll be good.

    JG
  • phrannie51
    phrannie51 Member Posts: 4,716
    Options
    Skiffin16 said:

    Butt Doctor....
    LOL, I know there is a joke in there just dying to come out......butt, I'll be good.

    JG

    Oh yes...there IS a joke in there...
    butt I restrained myself and left it hanging in the air. :)

    p