Lympnode left side of neck behind ear removed, stage III metastatic malignant malenoma

stayingpositive
stayingpositive Member Posts: 89
in Head and Neck Cancer #1
Hi all, i'm new here and mid february had a small pea sized lump in my neck, was concerned as I had five small skin cancers and a small malenoma removed from my back before. Went to the doc and was told it was probably an infection in my lympnode was given antibiotics and went home. Next week it was twice the size (1cm), went back and was told the same thing but I was refered to a plastic surgeon to see if he could remove it because it was becoming visible on the surface. Went to the platic surgeon a week later, it had grown (2cm). Plastic surgeon said it was too deep and close to nerves and muscles, he refered me to an Ear Nose and Throat specialist, by then it had grown to 3cm and was starting to annoy me when I turned my head causing pressure on my neck. Anyway the ENT surgeon took a biopsy (with a dang big needle) and it came back negative. I went to see him then next week and the lump (lympnode)had grown to about 3.5cm and he decided to not let it grow any larger. I had surgery on march the first, it was seven hours long, the lymphnode turned out to be cancerous, the took 48 lympnodes around it, scraped nerves and muscles and finally were sure they got all surrounding area clean. I am now on my last few radiation treatments and will start Interferon on or about the 23 of this month. I have been reading alot about my condition but still am not sure how much I should be worrying about it spreading or if they really got it all. The doc's are telling me they don't know where the "primary" could be, even tho my P.E.T. scan came back negative. My oncologist is sendingme to an optomologist (eye doctor), why the heck is he doing that? Sorry about the long post but I am in limbo as to how much I should prepare my family for......

Thanks for any return posts

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
    Welcome to the board
    Sorry about your situation. You are being sent to the eye doctor just to be examined, in order to make sure you don't have a primary melanoma of the eye. If you aren't having any eye symptoms, that wouldnt be likely, but they need to make sure. You have a tough situation, and yet, you have expectations that things may go well for you. Melanoma is an unpredictable malignancy, and there are many people around for decades after the diagnosis of metastatic disease.

    Most of your answers are going to have to come from talking to the experts. I would make certain I had a written laundry list when I next sat down to talk to them about planning, and I'd be sure I took someone with me to help hear the answers. If you are not ill at the moment, and you have a negative PET scan, you are likely going to continue to feel just fine, and function well. but it is a tough one, lacking a distinct plan and prognosis.

    Welcome to the board. Wishing better times for you.

    Pat
  • ratface
    ratface Member Posts: 1,337 Member
    #3
    longtermsurvivor said:

    Welcome to the board
    Sorry about your situation. You are being sent to the eye doctor just to be examined, in order to make sure you don't have a primary melanoma of the eye. If you aren't having any eye symptoms, that wouldnt be likely, but they need to make sure. You have a tough situation, and yet, you have expectations that things may go well for you. Melanoma is an unpredictable malignancy, and there are many people around for decades after the diagnosis of metastatic disease.

    Most of your answers are going to have to come from talking to the experts. I would make certain I had a written laundry list when I next sat down to talk to them about planning, and I'd be sure I took someone with me to help hear the answers. If you are not ill at the moment, and you have a negative PET scan, you are likely going to continue to feel just fine, and function well. but it is a tough one, lacking a distinct plan and prognosis.

    Welcome to the board. Wishing better times for you.

    Pat

    what kind is it?
    Was it melanoma or Squamous cell carcinoma. I know your first cancer was melanoma? I don't have much to offer otherwise other than most HNC and SCC unknown primaries eventually show up in a tonsil on the side of that lymph node. Then again they sometimes never get found out and as the cancer succumbs to the treatment along the way. Keep asking questions and welcome to the board.
  • phrannie51
    phrannie51 Member Posts: 4,716
    #4
    Welcome to this great forum...
    I'm of little help in the medical department, as I'm new here, also. Just want you to know that you have found a warm, kind and supportive group of people here...and I'm glad you did.

    I love your screen name...!! :)

    p
  • stayingpositive
    stayingpositive Member Posts: 89
    #5
    ratface said:

    what kind is it?
    Was it melanoma or Squamous cell carcinoma. I know your first cancer was melanoma? I don't have much to offer otherwise other than most HNC and SCC unknown primaries eventually show up in a tonsil on the side of that lymph node. Then again they sometimes never get found out and as the cancer succumbs to the treatment along the way. Keep asking questions and welcome to the board.

    first melanoma
    My first melanoma was in the middle lower back, was taken out by air force doctor using just numbing agent and he told me later it was a melanoma. No treatment, no mri's nothing, so i'm assuming it was just a skin? Was over 8yrs ago, my wife and I are searching for the records of it, i'm headed to the optomologist on the base next week (i'm retired air force)so I am going to head to records section to get a copy for my oncologist anyway. He asked the same question about the first one. The air force doc didn't act like it was anything special at the time so I figured what the heck, must be nothing.
  • stayingpositive
    stayingpositive Member Posts: 89
    #6
    phrannie51 said:

    Welcome to this great forum...
    I'm of little help in the medical department, as I'm new here, also. Just want you to know that you have found a warm, kind and supportive group of people here...and I'm glad you did.

    I love your screen name...!! :)

    p

    thanks phran
    Thanks, I like yours also, we have a guy at work we call Phranc! he likes it so much he has a name plate on his back patio that says Phrancs Place.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #7
    stayingpositive said:

    first melanoma
    My first melanoma was in the middle lower back, was taken out by air force doctor using just numbing agent and he told me later it was a melanoma. No treatment, no mri's nothing, so i'm assuming it was just a skin? Was over 8yrs ago, my wife and I are searching for the records of it, i'm headed to the optomologist on the base next week (i'm retired air force)so I am going to head to records section to get a copy for my oncologist anyway. He asked the same question about the first one. The air force doc didn't act like it was anything special at the time so I figured what the heck, must be nothing.

    rick and I are confused
    about whether your current lymph nodes is melanoma, or squamous carcinoma. I assumed it was melanoma, but rereading your original post I can see how I could have been wrong. If you could clarify this for us it would clear up the confusion. Thanks.
  • stayingpositive
    stayingpositive Member Posts: 89
    #8
    longtermsurvivor said:

    Welcome to the board
    Sorry about your situation. You are being sent to the eye doctor just to be examined, in order to make sure you don't have a primary melanoma of the eye. If you aren't having any eye symptoms, that wouldnt be likely, but they need to make sure. You have a tough situation, and yet, you have expectations that things may go well for you. Melanoma is an unpredictable malignancy, and there are many people around for decades after the diagnosis of metastatic disease.

    Most of your answers are going to have to come from talking to the experts. I would make certain I had a written laundry list when I next sat down to talk to them about planning, and I'd be sure I took someone with me to help hear the answers. If you are not ill at the moment, and you have a negative PET scan, you are likely going to continue to feel just fine, and function well. but it is a tough one, lacking a distinct plan and prognosis.

    Welcome to the board. Wishing better times for you.

    Pat

    feeling welcome
    Thanks for the welcome,
    I've had several eye exams in the last few months, cause I just got a couple new sets of glasses, they didn't mention anything unusual. Guess we'll find out on monday.
    I asked my oncologist tons of questions, his answers were much the same as yours, melanomas are "tricky", doctors are "unsure" of thier capabilities or what will happen next. I'm hearing lots of percentages from the medical field, like well with your radiation and chemo with stage III will give you a 25 to 60 percent chance to live longer than if you don't do the procedures. Anything above 50 percent sounds good, but a 25 percent? how did that big of a difference in percentages come about? I'm pretty healthy, so the doc says, and he thinks my averages are better than most folks who are less than average health wise, so does that put me at the 60 percent? hmmmm, i'm thinking I don't want to hear percentages so i'll just keep on keeping on till the next one pops up. I'll do the one year of Interferon injections, and hopefully increase antibodies to ninja status so they can sneak up on anything and take it out before it gets nasty.
  • stayingpositive
    stayingpositive Member Posts: 89
    #9
    longtermsurvivor said:

    rick and I are confused
    about whether your current lymph nodes is melanoma, or squamous carcinoma. I assumed it was melanoma, but rereading your original post I can see how I could have been wrong. If you could clarify this for us it would clear up the confusion. Thanks.

    current one
    the current one removed from behind my ear was a metastatic malignant malenoma stage III N1b
  • stayingpositive
    stayingpositive Member Posts: 89
    #10
    longtermsurvivor said:

    rick and I are confused
    about whether your current lymph nodes is melanoma, or squamous carcinoma. I assumed it was melanoma, but rereading your original post I can see how I could have been wrong. If you could clarify this for us it would clear up the confusion. Thanks.

    skin cancers
    the five skin cancers I mentioned were either benign or carcenomas or basils. Its actually seven now, had one removed below my left eye two weeks ago and one from my upper middle back last week. Most of the skin ones are small spots about the size of a dime or smaller, the one under my left eye was about an inch long and only a few mm's wide.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #11
    stayingpositive said:

    skin cancers
    the five skin cancers I mentioned were either benign or carcenomas or basils. Its actually seven now, had one removed below my left eye two weeks ago and one from my upper middle back last week. Most of the skin ones are small spots about the size of a dime or smaller, the one under my left eye was about an inch long and only a few mm's wide.

    Got it
    Basil cell cancer, of course, is a dime a dozen, and has a cure rate approaching 100%. Melanoma is the bad actor, with reocurrances 20 years or more after removal. If you had one removed 8 years ago, that is the primary until proven otherwise. So your workup is just making certain they haven't missed anything (like the eye exam), and your treatment is geared toward metastatic melanoma.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #12
    stayingpositive said:

    feeling welcome
    Thanks for the welcome,
    I've had several eye exams in the last few months, cause I just got a couple new sets of glasses, they didn't mention anything unusual. Guess we'll find out on monday.
    I asked my oncologist tons of questions, his answers were much the same as yours, melanomas are "tricky", doctors are "unsure" of thier capabilities or what will happen next. I'm hearing lots of percentages from the medical field, like well with your radiation and chemo with stage III will give you a 25 to 60 percent chance to live longer than if you don't do the procedures. Anything above 50 percent sounds good, but a 25 percent? how did that big of a difference in percentages come about? I'm pretty healthy, so the doc says, and he thinks my averages are better than most folks who are less than average health wise, so does that put me at the 60 percent? hmmmm, i'm thinking I don't want to hear percentages so i'll just keep on keeping on till the next one pops up. I'll do the one year of Interferon injections, and hopefully increase antibodies to ninja status so they can sneak up on anything and take it out before it gets nasty.

    this sounds like a good plan
    I am like you. The percentages are merely a distraction. The world is full of us people, who sometimes defy odds, for better or for worse. Anticipate success, I say. Do the interferon. It is not a hard treatment. And do whatever follow-up they think is wise. And live your life.

    Pat
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #13
    Welcome
    Sorry to hear of your ordeal....bum wrap for sure.

    More than likely between the rads, chemo and surgery they'll take care of everything (even with an unknown primary).

    A lot of great people here, and I'm sure you'll make one more.

    Best,
    John

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