One lymph node lit

cathy4889
cathy4889 Member Posts: 10
in Head and Neck Cancer #1
PET scan one year from diagnosis shows one lymph node lit, but no cancer elsewhere. Original diagnosis was Tonsil primary with mets to two lymps and went with 30 weeks radiation and erbitux. 1st PET sacan showed all clear, but 6 months later showed one lymph node lit. Now they want to do surgery to take out lymp node. Hubby thinks chemo should take care of it.

Comments

  • hwt
    hwt Member Posts: 2,328 Member
    #2
    PET
    As I understand it, inflammation can up light on a PET scan. If you aren't comfortable with the doctor's recommendation maybe get a second opinion. I had lymph nodes light up on other side of my neck but they did a sonogram and could not be found. That side of my neck was radiated at a lower dose as a precaution. Personally, I think the surgery would be much easier on a person than chemo. Good luck.
  • ratface
    ratface Member Posts: 1,337 Member
    #3
    looks like a neck dissection
    coming your way. Get a selective dissection just on that side and let them take out what ever number of lymph nodes they deem necessary. Chance of recurrence without it is around 22%. Just to high to risk it. They grow in chains like Christmas tree lights. Best to take out the whole chain. I had nine taken out on the left side and compared to chemo and radiation it's much more doable. I was home the same night. Which one of you is being treated? Post chemo/radiation surgery is often warranted as your PET is indicating. You might want to ask if there is any possibility of a false positive and possibly doing a PET again in a couple of months but in my very personal opinion you are playing with fire.
  • patricke
    patricke Member Posts: 570 Member
    #4
    BUMMER
    I'm sorry to hear about the lit lymph, but only one is better than more than one. You can always, as has been suggested, ask for a second opinion. You are probably already planning to have a more in depth chat with your doc about what the surgery would entail, etc. so that you have more information about what to expect. Also, my doc has been having me get eyes to thighs PET/CT combo scans for many years, because he believes that they provide the clearest view of what is happening on the inside; you might want to ask your doc about whether or not one would be good for you; just a thought. Is hubby an oncologist, or ENT, if so then he may be providing sound advice based on his years of experience in the field with many patients who have had similar conditions?

    PATRICK
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #5
    patricke said:

    BUMMER
    I'm sorry to hear about the lit lymph, but only one is better than more than one. You can always, as has been suggested, ask for a second opinion. You are probably already planning to have a more in depth chat with your doc about what the surgery would entail, etc. so that you have more information about what to expect. Also, my doc has been having me get eyes to thighs PET/CT combo scans for many years, because he believes that they provide the clearest view of what is happening on the inside; you might want to ask your doc about whether or not one would be good for you; just a thought. Is hubby an oncologist, or ENT, if so then he may be providing sound advice based on his years of experience in the field with many patients who have had similar conditions?

    PATRICK

    Ratface-
    what he said. At the very least further checking of it. Would advise against any reliance on chemo to take care of this, from my experience. Dissection w/biopsy analysis seems like the route I would expect, were I in your shoes. Remember- this is nothing to take chances on. The 3-month PS/CT is too early to tell anything, but when you're getting to the 6-month any lit up areas are of a significant more concern. Keep us informed, please.

    kcass
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #6
    chemotherapy will not cure it
    the selective node dissection is the treatment of choice. Talk to the treatment doctors all you need to, but also listen carefully to what they are saying. This is your best chance for cure, and it is a good one. There are a number of people who post here that have been in your situation.


    best

    Pat
  • cathy4889
    cathy4889 Member Posts: 10
    #7
    longtermsurvivor said:

    chemotherapy will not cure it
    the selective node dissection is the treatment of choice. Talk to the treatment doctors all you need to, but also listen carefully to what they are saying. This is your best chance for cure, and it is a good one. There are a number of people who post here that have been in your situation.


    best

    Pat

    Please tell me about your sugery experiences
    We met with the H & N Tumor Team from Henry Ford Detroit and they did a CT Scan and Needle Biopsy of the right lymph node from my husband. When he went through radiation and erbitux last September / October they said that surgery may be required, I guess this is the surgery that they were talking may happen. We have an appointment this Friday to hear what the tumor board has decided and (I hope) to schedule the surgery. I'm a little over whelmed to know what to ask so if people on this board that had surgery post radiation treatment could tell me there experience, maybe I can come up with questions to have ready this Friday. Some questions I am wondering about is will he need to have his feeding tube put back in, how long will he be in the hospital, how long will the recovery be, how long ago did you have your surgery post radiation and have you been NED since... I know from reading this board that everyone is different I'm just trying to gather as much information as I can.
  • ratface
    ratface Member Posts: 1,337 Member
    #8
    cathy4889 said:

    Please tell me about your sugery experiences
    We met with the H & N Tumor Team from Henry Ford Detroit and they did a CT Scan and Needle Biopsy of the right lymph node from my husband. When he went through radiation and erbitux last September / October they said that surgery may be required, I guess this is the surgery that they were talking may happen. We have an appointment this Friday to hear what the tumor board has decided and (I hope) to schedule the surgery. I'm a little over whelmed to know what to ask so if people on this board that had surgery post radiation treatment could tell me there experience, maybe I can come up with questions to have ready this Friday. Some questions I am wondering about is will he need to have his feeding tube put back in, how long will he be in the hospital, how long will the recovery be, how long ago did you have your surgery post radiation and have you been NED since... I know from reading this board that everyone is different I'm just trying to gather as much information as I can.

    I would start with
    who is doing the cutting? If it's a teaching hospital they can learn on someone else, you want someone who has done lots of these and you want to know that they will be there the entire time. They can invite all their friends to watch. Generally the hospital stay is overnight or a couple of days. If he is healthy and strong enough with no complications he may go home that night. I went in at 6:00 in the morning and they discharged me at around 8:oo that evening. It sounds and looks much worse than it is. You want to know if they anticipate a selective, radical or bilateral which can all impact the duration. You want to know the risks vs. the reward, what mobility factors can be affected if something goes wrong? This point is irrelevant in My opinion because it's always better than dead regardless.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #9
    cathy4889 said:

    Please tell me about your sugery experiences
    We met with the H & N Tumor Team from Henry Ford Detroit and they did a CT Scan and Needle Biopsy of the right lymph node from my husband. When he went through radiation and erbitux last September / October they said that surgery may be required, I guess this is the surgery that they were talking may happen. We have an appointment this Friday to hear what the tumor board has decided and (I hope) to schedule the surgery. I'm a little over whelmed to know what to ask so if people on this board that had surgery post radiation treatment could tell me there experience, maybe I can come up with questions to have ready this Friday. Some questions I am wondering about is will he need to have his feeding tube put back in, how long will he be in the hospital, how long will the recovery be, how long ago did you have your surgery post radiation and have you been NED since... I know from reading this board that everyone is different I'm just trying to gather as much information as I can.

    Hi Cathy
    Many of us have been through the wars, some of us more thn once. Here are thensalient points:

    1). he has persistent disese confined to a lymphnode, as far as the medical team can tell.

    2). chemotherapy does not cure squamous carcinoma. It can reduce its size, but cure--- never.

    3). this leaves surgery. What will be proposed is a selective node disection, including thecncerous node, and some of those above and below it.

    4). a selective node disection is a fairly simple operation, as ratface indicated. I had a complete radical neck disection 14 years ago, quitema bit more surgery than he will have, and it really wasnt a big deal. My total hospital sty was 3 days, and I was only off work two weeks.

    5) his cure expectancy is very good once this is done. It is almost zero if he doesnt get this done.

    I know several who did exactly wht your hubby ismabout to do. Hal61 is one, Greg 53 is another. hal is nowmthree years past treatment, and Greg is over two years out. I have met both of them, and they are both doing fine.


    It wont help you much to red my bio, although you can if you want. I have been through. bit more thn this, and I am still around. There is a reason I chose the board name lomgtermsurvivor.

    best to you

    Pat

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