Newbie. Don't really want to join your club, but you all seem so nice.

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  • HelenBack
    HelenBack Member Posts: 87 Member
    #22
    fishmanpa said:

    The Tumors

    Hi Helen,

    The tumors were cancer ridden lymph nodes. I found out today at my appointment just how involved and aggressive they were. Several lymph nodes all grown together on the left side of my neck. They had grown right through their capsule. They were removed as well as 24 additional lymph nodes. 

    I had the palatine tonsils removed Dec. 21st 2012. The PET scan showed a slight uptake on the right tonsil. I had the lingual tonsils removed on Feb. 7th along with the 24 other lymph nodes and had BOT and nasophaynx biopsies done both times as well as laryngoscopies. The two large (4+cm) tumors were cancerous but all the other samples were negative. It's an unknown primary.

    I went today and had the mask made. CAT scans and an MRI were done so they can formulate the radiation treatments. I have appointments with the medical oncologist to formulate the chemo which will most likely be 6-7 infusions of cisplatin. The rads will be of varing intensity depending on location....more on the left side, less on the right side etc. 

    "T"

    Okay, I think I got it now.

    That is one pesky primary. Well, it's about to get anhiliated. Buh-bye primary, wherever you are. (or aren't, if that's an option)

    It sure sounds like you are in very capable hands.

    Thanks for all the info and good luck, 

    Helen

  • ToBeGolden
    ToBeGolden Member Posts: 695
    #23
    We Are Nice

    Or at least everyone tries to be helpful. I am so very sick that I can barelly respond. So I won't give advice sicnce the advice would be clouded with my brain fog. But we are all pulling together for the best ppossible result each of us can achieve. Rick.

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #24
    HelenBack said:

    Okay, I think I got it now.

    That is one pesky primary. Well, it's about to get anhiliated. Buh-bye primary, wherever you are. (or aren't, if that's an option)

    It sure sounds like you are in very capable hands.

    Thanks for all the info and good luck, 

    Helen

    Just to clarify...

    The cancerous lymph nodes were not the primary. Your lymph nodes are essentially the sewer trap for the cancer. So, my cancer started somewhere... BOT, throat, nasopharynx etc. Then the cancer cells spread from the primary site to the lymph nodes, thus the swelling. In my case, they haven't been able to determine where it actually started. All the biopsies of the likely places came up negative. The PET scan didn't show it anywhere else in my body. The doctor's best guess is that my body eradicated the initial primary site and what was left was the cancer cells growing in the lymph nodes on the left side of my neck. 

    My surgeon seems to think he got all the cancer so the radiation and chemo are insurance policies to make sure we get any stray cancer cells that may have escpaed from the tumors. He was very confident I would be NED at the end of 7 weeks. 

    "T"

     

  • HelenBack
    HelenBack Member Posts: 87 Member
    #25
    fishmanpa said:

    Just to clarify...

    The cancerous lymph nodes were not the primary. Your lymph nodes are essentially the sewer trap for the cancer. So, my cancer started somewhere... BOT, throat, nasopharynx etc. Then the cancer cells spread from the primary site to the lymph nodes, thus the swelling. In my case, they haven't been able to determine where it actually started. All the biopsies of the likely places came up negative. The PET scan didn't show it anywhere else in my body. The doctor's best guess is that my body eradicated the initial primary site and what was left was the cancer cells growing in the lymph nodes on the left side of my neck. 

    My surgeon seems to think he got all the cancer so the radiation and chemo are insurance policies to make sure we get any stray cancer cells that may have escpaed from the tumors. He was very confident I would be NED at the end of 7 weeks. 

    "T"

     

    Oh, I get it now, really.

    I swear I'm catching on. Yes, you did clarify something I didn't know. I thought if no primary was found it was lurking somewhere and would be destroyed by the Chemo/Radiation. It is Waaay more awesome to think that your body fought it off already. 

    Nice Work!

    Helen

  • HelenBack
    HelenBack Member Posts: 87 Member
    #26
    ToBeGolden said:

    We Are Nice

    Or at least everyone tries to be helpful. I am so very sick that I can barelly respond. So I won't give advice sicnce the advice would be clouded with my brain fog. But we are all pulling together for the best ppossible result each of us can achieve. Rick.

    So very nice.

    Rick, I've read many of your posts and sorry to hear you're having a rough go of it. I'm sending warm tight hugs. 

    FWIW, I wouldn't get up and move if you sat next to me on the bus. :)

    Hang in there, 

    Helen

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #27
    Welcome Helen...

    All that any of us can do is trust in our MD's and their decisions for us if reasonable.

    Hindsight would always be awesome, unfortunately we rarely have any "do overs"... And there is always different ways of looking at things, my MD's took the appraoch to hit it as hard as they could upfront, hopefully killing it all off without killing me in the process..., LOL.

    Some take a lesser approach trying to hit it hard enough to kill the cancer, without sacrificing some collateral damage in the process.

    Anyways....

    Welcome to our group of survivors...

    John

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