squamous cell CA of the base of tongue and lymphnode

Pasdaughter
Pasdaughter Member Posts: 18
in Head and Neck Cancer #1
My mother recently was diagnosed with squamous cell carcinoma of the base of tongue and lymphnode. We see the radiation doctor and the chemotherapy doctor at the end of this week. The radiation will begin Thursday. We are totally new to any of this. I have read some information online; however, still in the dark about most of it. We have yet to hear the "stage" of the cancer. I would love to get any advice! I am my mother's primary caregiver during this. Thanks in advance for any information you would like to share. I will continue to read the discussion boards, learning more and more! :)

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #2
    Welcome...
    First just realize that treatment these days, while still pretty brutal comparative of older times, out comes are much better.

    For the majority, it's a very survivorable outcome.

    Interesting that they have Dx, but not staged it. How did the reach the conclusion of cancer...biopsy I presume?

    Here's a link to the SuperThread, tons of very useful information compiled by the many here;

    SuperThread

    Best,
    John
  • ratface
    ratface Member Posts: 1,337 Member
    #3
    well howdy Pasdaughter
    There are countless variables but also many constants. welcome by the way. More than likely she is stage 4 because of the spread to the lymph node. I was base of the tongue spread to right cervical node, stage 4 and that was 2009. Hopefully you are at a cancer center that has some expertise in head and neck cancer and under the care of a team of doctors, a chemo doc, a radiation doc, and an ENT. You will probably meet a dentist and nutritionist along the way. There may or may not be talk of a feeding tube insertion depending on mom's overall health and current weight. it will be a whirlwind of a ride for you trying to process information. The best preparation you can make is probably to skim the super thread which is a compilation of pertinent stuff relating to head and neck cancers. I recommend reading up on peg tubes, neck dissections, radiation protocol, chemo protocol, and nutrition. From there you can ask more direct questions as they arise.
  • Pasdaughter
    Pasdaughter Member Posts: 18
    #4
    Skiffin16 said:

    Welcome...
    First just realize that treatment these days, while still pretty brutal comparative of older times, out comes are much better.

    For the majority, it's a very survivorable outcome.

    Interesting that they have Dx, but not staged it. How did the reach the conclusion of cancer...biopsy I presume?

    Here's a link to the SuperThread, tons of very useful information compiled by the many here;

    SuperThread

    Best,
    John

    She had ultrasound guided
    She had ultrasound guided biopsy. PET scan was also performed. Yesterday she had surgical biopsy performed on base of tongue. Thank you so much for the SuperThread!!!
  • Pasdaughter
    Pasdaughter Member Posts: 18
    #5
    ratface said:

    well howdy Pasdaughter
    There are countless variables but also many constants. welcome by the way. More than likely she is stage 4 because of the spread to the lymph node. I was base of the tongue spread to right cervical node, stage 4 and that was 2009. Hopefully you are at a cancer center that has some expertise in head and neck cancer and under the care of a team of doctors, a chemo doc, a radiation doc, and an ENT. You will probably meet a dentist and nutritionist along the way. There may or may not be talk of a feeding tube insertion depending on mom's overall health and current weight. it will be a whirlwind of a ride for you trying to process information. The best preparation you can make is probably to skim the super thread which is a compilation of pertinent stuff relating to head and neck cancers. I recommend reading up on peg tubes, neck dissections, radiation protocol, chemo protocol, and nutrition. From there you can ask more direct questions as they arise.

    Thank you so much for the
    Thank you so much for the information. I presumed she would have a PEG. I am anxious for her next appointment to find out all the much needed information. I have created a notebook of questions and appointment times etc... Thank you again for giving a place for me to start! :)
  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #6
    where do I start
    Pasdaughter,

    I also was diagnosed base of tongue and lymph node. Maybe, I am missing some doctor visits in your description, but things seem to be happening fast for your Mom. If everything is planned and it is a go, then good, get the ball rolling and get to the other side quickly.

    There is so much advice to give I don’t know where to begin. Return here often with your questions.

    Best,

    Matt
  • Pasdaughter
    Pasdaughter Member Posts: 18
    #7
    CivilMatt said:

    where do I start
    Pasdaughter,

    I also was diagnosed base of tongue and lymph node. Maybe, I am missing some doctor visits in your description, but things seem to be happening fast for your Mom. If everything is planned and it is a go, then good, get the ball rolling and get to the other side quickly.

    There is so much advice to give I don’t know where to begin. Return here often with your questions.

    Best,

    Matt

    Do you think she will need a
    Do you think she will need a PEG? Will she be sick to her stomach a lot? Will she be throwing up/diarhea? Will she feel weak and/or tired a lot? Is there a lot of pain involved? How soon after start of treatments will she feel sick and/or pain? When will she feel better? Will she feel bad right after each treatment or does it take a while? How soon after each treatment will she feel beter?... meaning, not feeling as sick from that treatment? See I do not know a thing about any of this and have never had to deal with it before... any advice is greatly, greatly appreciated!! :)
  • hwt
    hwt Member Posts: 2,328 Member
    #8
    Pasdaughter said:

    Do you think she will need a
    Do you think she will need a PEG? Will she be sick to her stomach a lot? Will she be throwing up/diarhea? Will she feel weak and/or tired a lot? Is there a lot of pain involved? How soon after start of treatments will she feel sick and/or pain? When will she feel better? Will she feel bad right after each treatment or does it take a while? How soon after each treatment will she feel beter?... meaning, not feeling as sick from that treatment? See I do not know a thing about any of this and have never had to deal with it before... any advice is greatly, greatly appreciated!! :)

    Maybe...maybe...and maybe
    Each of us is different. My ENT said he had an 86 year old radiation patient that breezed thru treatment with no side effects. Most of us weren't so lucky. You can read about side effects, some will happen some won't. Some are short lived others are not. The mask is not as scary as believed. A warm open mesh is placed over the face to form the mask, feels like a facial :-) Radiation tx only takes about 15-20 minutes 5 days a week. My chemo was Cisplatin. They have great meds to prevent nausea and pain, they work extremely well. I never got nauseated. There is no pain to the actual rad/chemo tx. It's the side effects that can be brutal. My worst was sores on my lips. I was exhausted and slept allot.
    I was very dehydrated from 1st chemo tx so my ONC cut dose in half and I did it weekly without any problem. I had a Hohne port for chemo, would recommend. I had a G tube (feeding tube)left in from surgery and it came in handy. 1 week out of tx I felt better and by week 5 energy was 10 fold :-) My advice, take it as it comes and deal with it as it does come. Best wishes. As side effects come up, you will find people here very caring and helpful.
  • Pam M
    Pam M Member Posts: 2,196
    #9
    Pasdaughter said:

    Do you think she will need a
    Do you think she will need a PEG? Will she be sick to her stomach a lot? Will she be throwing up/diarhea? Will she feel weak and/or tired a lot? Is there a lot of pain involved? How soon after start of treatments will she feel sick and/or pain? When will she feel better? Will she feel bad right after each treatment or does it take a while? How soon after each treatment will she feel beter?... meaning, not feeling as sick from that treatment? See I do not know a thing about any of this and have never had to deal with it before... any advice is greatly, greatly appreciated!! :)

    Hello
    I had a MAGIC anti-nausea called Emend. Wonderful stuff. My docs and nutritionist said that the majority of folks going through head and neck treatment needed a feeding tube. Years ago, many in our shoes died of malnutrition, not cancer. As far as feeling bad - it took a while for radiation to make me feel off - chemo was quicker. BUT - I did get more chemo than most folks here get. When I had big chemo days, I felt good the next couple days, then slowly slid downhill until what the docs called the "nadir" - about a week and a half after chemo - then I felt better the next week, then was ready for the cycle to restart with my next chemo round. when chemo radiation ended, it took a few weeks for me to feel I was recovering. Please be prepared - for most of us, recovery takes longer than we would think (yeah, even though everyone here told us it would take a while)

    I was tired a lot. Diarrhea/constipation came up a few times. Keep docs informed on what's happening with your mom - we have amazing meds to help fight the side effects of treatment.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #10
    Feeling Sick, PEG, etc...
    As mentioned all of those things are possibilities..some are needed some aren't, some might be along the journey. It all depends on how she handles things and her over all state of health, weight and fitness now.

    Myself and others went through rather unscathed without a PEG...others swear they would have died in they didn't have it.

    EMEND like mentioned is a God Send for keeping nausea down. I never was sick at all during sixteen weeks of four types of chemo and seven weeks of that with radiation.

    Like Ratface mentioned, she could be more than likely either STGIII or STGIV. All depends on the effected lymphnode if it's on the same as the primary (side as mine was), and depending on the size of it.

    I was STGIII SCC HPV+ Tonsils and a lymphnode...

    What is huge during treatmnet, is a positive attitude, keep a sense of humor...and the number one and most important, stay hydrated...very hydrated.

    Best,
    John
  • Pasdaughter
    Pasdaughter Member Posts: 18
    #11
    Pam M said:

    Hello
    I had a MAGIC anti-nausea called Emend. Wonderful stuff. My docs and nutritionist said that the majority of folks going through head and neck treatment needed a feeding tube. Years ago, many in our shoes died of malnutrition, not cancer. As far as feeling bad - it took a while for radiation to make me feel off - chemo was quicker. BUT - I did get more chemo than most folks here get. When I had big chemo days, I felt good the next couple days, then slowly slid downhill until what the docs called the "nadir" - about a week and a half after chemo - then I felt better the next week, then was ready for the cycle to restart with my next chemo round. when chemo radiation ended, it took a few weeks for me to feel I was recovering. Please be prepared - for most of us, recovery takes longer than we would think (yeah, even though everyone here told us it would take a while)

    I was tired a lot. Diarrhea/constipation came up a few times. Keep docs informed on what's happening with your mom - we have amazing meds to help fight the side effects of treatment.

    I am so happy you all have
    I am so happy you all have shared this information. I can only pray that Mom will get by with little side effects; however, doubtful I am sure. I spoke with Mom a bit last night about what the treatment will be like. I suppose we will get a crash course on treatment tomorrow when we see the onco. Thank you so very much for the best wishes!! We still can't believe any of this is happening... You all have given me such hope!!! That gift of hope is cherished greatly! Mom has first radiation appointment tomorrow. I will be writing here a lot searching for advice and answers. The journey begins...
  • Pasdaughter
    Pasdaughter Member Posts: 18
    #12
    Skiffin16 said:

    Feeling Sick, PEG, etc...
    As mentioned all of those things are possibilities..some are needed some aren't, some might be along the journey. It all depends on how she handles things and her over all state of health, weight and fitness now.

    Myself and others went through rather unscathed without a PEG...others swear they would have died in they didn't have it.

    EMEND like mentioned is a God Send for keeping nausea down. I never was sick at all during sixteen weeks of four types of chemo and seven weeks of that with radiation.

    Like Ratface mentioned, she could be more than likely either STGIII or STGIV. All depends on the effected lymphnode if it's on the same as the primary (side as mine was), and depending on the size of it.

    I was STGIII SCC HPV+ Tonsils and a lymphnode...

    What is huge during treatmnet, is a positive attitude, keep a sense of humor...and the number one and most important, stay hydrated...very hydrated.

    Best,
    John

    Posting a message
    I am wondering how I post a message under a thread already started... Do I "reply" to the last message? Or is there a way I can create a new message under that thread? Does that make sense? I am sorry... I just want to know so when I post, I am either posting under a thread or replying to a specific message. :)
  • Pasdaughter
    Pasdaughter Member Posts: 18
    #13
    Skiffin16 said:

    Feeling Sick, PEG, etc...
    As mentioned all of those things are possibilities..some are needed some aren't, some might be along the journey. It all depends on how she handles things and her over all state of health, weight and fitness now.

    Myself and others went through rather unscathed without a PEG...others swear they would have died in they didn't have it.

    EMEND like mentioned is a God Send for keeping nausea down. I never was sick at all during sixteen weeks of four types of chemo and seven weeks of that with radiation.

    Like Ratface mentioned, she could be more than likely either STGIII or STGIV. All depends on the effected lymphnode if it's on the same as the primary (side as mine was), and depending on the size of it.

    I was STGIII SCC HPV+ Tonsils and a lymphnode...

    What is huge during treatmnet, is a positive attitude, keep a sense of humor...and the number one and most important, stay hydrated...very hydrated.

    Best,
    John

    Posting a message
    I am wondering how I post a message under a thread already started... Do I "reply" to the last message? Or is there a way I can create a new message under that thread? Does that make sense? I am sorry... I just want to know so when I post, I am either posting under a thread or replying to a specific message. :)
  • Pasdaughter
    Pasdaughter Member Posts: 18
    #14
    Skiffin16 said:

    Feeling Sick, PEG, etc...
    As mentioned all of those things are possibilities..some are needed some aren't, some might be along the journey. It all depends on how she handles things and her over all state of health, weight and fitness now.

    Myself and others went through rather unscathed without a PEG...others swear they would have died in they didn't have it.

    EMEND like mentioned is a God Send for keeping nausea down. I never was sick at all during sixteen weeks of four types of chemo and seven weeks of that with radiation.

    Like Ratface mentioned, she could be more than likely either STGIII or STGIV. All depends on the effected lymphnode if it's on the same as the primary (side as mine was), and depending on the size of it.

    I was STGIII SCC HPV+ Tonsils and a lymphnode...

    What is huge during treatmnet, is a positive attitude, keep a sense of humor...and the number one and most important, stay hydrated...very hydrated.

    Best,
    John

    Posting a message
    Please disregard the duplicate. I didn't think it posted originally.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #15
    Posting Position to Original First Post
    This is a reply to your first original post...

    JG
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #16
    Pasdaughter said:

    Posting a message
    I am wondering how I post a message under a thread already started... Do I "reply" to the last message? Or is there a way I can create a new message under that thread? Does that make sense? I am sorry... I just want to know so when I post, I am either posting under a thread or replying to a specific message. :)

    Posting Position...To Your Reply To My Reply
    If you reply to a post, it falls next under that post (or next under someone else that replied before you.

    If you reply to the original (very first post), yours will fall at the very bottom of the postings (last post on the page)...

    This is a reply to your post under mine above...

    JG
  • Pasdaughter
    Pasdaughter Member Posts: 18
    #17
    Skiffin16 said:

    Posting Position...To Your Reply To My Reply
    If you reply to a post, it falls next under that post (or next under someone else that replied before you.

    If you reply to the original (very first post), yours will fall at the very bottom of the postings (last post on the page)...

    This is a reply to your post under mine above...

    JG

    Thank you! Next time I
    Thank you! Next time I post... which will be tomorrow after Mom's radiation appointment, I will know where to post. :) Thank you!!
  • Pasdaughter
    Pasdaughter Member Posts: 18
    #18
    Skiffin16 said:

    Posting Position to Original First Post
    This is a reply to your first original post...

    JG

    Thank you! Thank you! :)

    Thank you! Thank you! :)
  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #19
    questions?
    Pasdaughter,

    Wow, you have a lot of questions and to be truthful I haven’t a clue which ones your Mom will experience. I can tell you what happened to me, but my story is (similar) but different from everyone here. You have pretty much covered the gambit of possible side effects, so you are ready to ask. Some body here may have gotten every symptom you mentioned, but I didn’t. The one she probably is having is fear of what the heck is going on with her body and trying to find a reason for it happening to her. All of us here had fear and wonder of “why me”. I think I am a pretty good judge of character and from what I’ve learned from all these nice folks I met on this web site is “why any of us”?

    Don’t borrow trouble, but be ready.

    Best,

    Matt
  • hwt
    hwt Member Posts: 2,328 Member
    #20
    CivilMatt said:

    questions?
    Pasdaughter,

    Wow, you have a lot of questions and to be truthful I haven’t a clue which ones your Mom will experience. I can tell you what happened to me, but my story is (similar) but different from everyone here. You have pretty much covered the gambit of possible side effects, so you are ready to ask. Some body here may have gotten every symptom you mentioned, but I didn’t. The one she probably is having is fear of what the heck is going on with her body and trying to find a reason for it happening to her. All of us here had fear and wonder of “why me”. I think I am a pretty good judge of character and from what I’ve learned from all these nice folks I met on this web site is “why any of us”?

    Don’t borrow trouble, but be ready.

    Best,

    Matt

    Why?
    Explanation that made the most sense to me is that we all have rogue cancer cells in our body. When we let our immune system get down, the body doesn't fight them off and they take hold. Interesting concept. Maybe it makes sense to me because my diagnosis and my brother's diagnosis both came after stressful times in our lives.

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