Questions about removal of lymph nodes

Last June my mom was diagnosed with oral cancer in her upper left jaw. She was told by her first doctor to wait it out and watch it grow. Bad idea as by the time she had surgery in October, it had grown by 140%. It was successfully removed, they did a left neck dissection and she was declared thankfully cancer free. 8 months later, she goes to the doctor for a swollen lymph node on the opposite side of the neck. After a CT scan and biospy they determined it is indeed cancer and the same cancer as before that was in her mouth. The doctors think it leached down from that opposite side and took 8 months to grow. I don't know anything about lymph nodes but can it really take 8 months to leach and to grow?

Their chosen course of action seems to be to remove these lymph nodes completely so she will be living with no lymph nodes in either side of the neck. Has anyone else gone through this? What should she expect?

 

Another question is that they are doing a PET Scan and talking about chemo and radiation of this area. Is this normal?

 

I'm going to be her caregiver and also a caregiver to my grandma who she has been caring for for years. She's 87 and is able to walk but has severe demensia (She knows who we are but can't remember one minute to the next which seems harmless but not so harmless when you can't remember to go to the bathroom, to not walk without a walker which makes her fall, not to bend over and pick up strange things on the floor causing you to fall, not to take pills again and again, to eat, etc). I want to be the best caregiver to both of them that I can be (I have been helping with my grandma for years so I'm well versed with her but this cancer thing is tough). I did the cancer caring for once but it was basically cleaning up after my mom and caring for my grandma full time as she didn't go through chemo or radiation. Is there any advice I can be given to help me know what to expect? Anything that you loved your caregiver saying or doing for you? Anyway to make sure my mom stays positive through all of this?

 

Thanks.

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    Hi and welcome, Miss Kitty.....

    You have found the best group on the internet....the people here are smart, helpful, and very supportive.

    Yes....it could have taken 8 months for the cancer to pop up in a lymph node.  Many of us found the lymph node before we found out about anything else.  Removal of the rest of her lymph nodes sounds very prudent to me.  As is having both radiation and chemo.  Most of us have had both.  Rads to kill all those nasty cells, and chemo to do the clean up on any escapees. 

    You didn't say how old your mom is.....I was 61 when I was diagnosed....I'm almost 65 now (just a little short of 3 years out of treatment).  I will say...taking care of grandma and your mom is going to leave you with a pretty full plate.  Others will chime in here, and offer more advice.

    I'm glad you found us.....these folks saved my bacon when I was in treatment.....lots of tips and tricks to get through treatment easier.  This is no walk in the park, so tell mom to hang onto her seat.....she'll come out the other side ok, just getting there can get rocky.

    p

  • MrsBD
    MrsBD Member Posts: 615 Member
    Lymph nodes

    Welcome to the group. As Phrannie said,  your plate is certainly full. I hope we can be a source of support and good advice for you during this time. There is also a group specifically for caregivers that you might want to join. I don't have any experience with lymph node removal,but will help with questions about chemo and radiation. You are all in my prayers. 

  • wmc
    wmc Member Posts: 1,804
    Welcome to the H&N Group

    Wow, that is a lot for you to have to process. I have had a double radial neck dissesion level 2~5. They took 86 total and 48 from the left and 38 from the right side. Section 1 is under the chin. You have over 200 in your neck so when they say they are going to remove them they do not take them all. I was T3,N0,M0, SCC in the larynx just above the vocal cords. I have COPD so they had to remove my larnyx to be able to do the surgery. As far as what to expect, there is numbness at first and sone might come back. It does depend how good the surgen is. Mine was one of the best on the west coast. I am numb from my left ear to the center of the chin. I didn't get any problems in the sholder but have heard of persons having problems with the muscles there. My neck feels like someone is streaching the skin, like you would do to a drum but you kinda get used to it. I do have to take muscle relaxers to be able to turn it as far as I did before. The neck can get some fluid build up from the lymph system as it finds a new path, but I never had that. This is a very commin practis to remove the glands so it has no where to spread to.

    A PET/CT is normal to help locate the cancer. They offen will do chemo and radiation to kill the cancer and shrink tumors and treat the condition. The chemo and radiation can be rough, but so many here have been through it and will help with your questions. [I only had surgery, no chemo or radistion] As the caregiver of both, you will have to remember to set aside some time for you. You need to beable to rest if you're going to be help to anyone. It is hard on the caregiver as your loved one is going through this and you can't make it go away. The paitent does understand, but can get a little sharp at times as you are ALL scared. Sometimes it helps to just come here and vent. Just writing it down helps, and we have been there and do understand. Thoughts and prayers for you.

    Bill

  • MarineE5
    MarineE5 Member Posts: 1,029 Member
    Neck Disection

    Hi LMK,

    I am sorry that you have to be here asking questions, but as mentioned above, this is a very good site to find the answers you seek.

    I had a Radical Neck Disection of over 30 Lymphnodes removed on my right side along with the SCM muscle. Some things that will be affected by any disection whether it be a modified or radical is the problem of tightness of the neck (which Bill pointed out) and Lymphedema. This is the swelling of the face and neck due to the back up of the Lymphnode system whenever we do any activity involving the use of our arms and shoulder muscles.

    Stretching exercises and gentle massages during the day can help and should be shown to your mom by a Physical Therapist trained in this field for cancer patients.

    I had Radiation only as Chemo was to be a back-up for me at that time in the event I had a reoccurance, which did not happen. One thing you may want to do is visit the first thread on this page and read the tips on how to deal with different issues. A lot of good information is in there.

    My Best to You, Your Family and Everyone Here

  • ratface
    ratface Member Posts: 1,337 Member
    All quite normal

    "Leach" is a perfect word. Lymph nodes are just filters made of tissue. They are like a daisy chain of christmas lights interconnected. They are removed as entire chains of multiple lymph nodes.  They leach from one to another via gravity. We are loaded with these things and the head and neck and chest are full of them. We are capable of making new drain pathways for the lymph fluid although much narrower and it takes some time. Generally the midline of the tongue is used to divide the geography of the mouth from left to right. One of those little buggers just took a fork in the road to the right. She had a left neck  disection and was spared the chemo and radiation in the hope that it would not be needed. It is not an unusual practice to attack this stuff incremently as needed. She is now eligible for chemo and radiation since it wasn't previously used. Many people get full neck disections including both sides. One side only is called a selective neck disection.  The treatment seems right in line with protocol. All the best to your Mom.

  • tommyodavey
    tommyodavey Member Posts: 726 Member
    ratface said:

    All quite normal

    "Leach" is a perfect word. Lymph nodes are just filters made of tissue. They are like a daisy chain of christmas lights interconnected. They are removed as entire chains of multiple lymph nodes.  They leach from one to another via gravity. We are loaded with these things and the head and neck and chest are full of them. We are capable of making new drain pathways for the lymph fluid although much narrower and it takes some time. Generally the midline of the tongue is used to divide the geography of the mouth from left to right. One of those little buggers just took a fork in the road to the right. She had a left neck  disection and was spared the chemo and radiation in the hope that it would not be needed. It is not an unusual practice to attack this stuff incremently as needed. She is now eligible for chemo and radiation since it wasn't previously used. Many people get full neck disections including both sides. One side only is called a selective neck disection.  The treatment seems right in line with protocol. All the best to your Mom.

    Neck Dissection

    MarineE5 and Bill said it all.  From what I read the human body has roughly 600 lymph nodes with 200 in the neck.  The rest are under your arms and who knows where.  I too had a radical right neck dissection where the surgeon took out betweek 35-50 lymph nodes.  Two were positive.  And like Marine said, some minor damage done to muscles, tendons, or whatever they cut out of me.  I still have lymphodema under my chin but who cares at this point.  I am just overwhelmed to be alive due to modern medicine.  

    So don't worry about losing some nodes.  One would think that I'd have a comprimised immune system but I seem fine and don't catch colds and more than I used to.  So please don't worry about the lymph nodes.  It's no big deal.

    You're an angel being a caregiver.  Please don't forget to take care of yourself too.  You need your down time to destress.

     

    Tom 

  • littlemisskitty
    littlemisskitty Member Posts: 35

    Hi and welcome, Miss Kitty.....

    You have found the best group on the internet....the people here are smart, helpful, and very supportive.

    Yes....it could have taken 8 months for the cancer to pop up in a lymph node.  Many of us found the lymph node before we found out about anything else.  Removal of the rest of her lymph nodes sounds very prudent to me.  As is having both radiation and chemo.  Most of us have had both.  Rads to kill all those nasty cells, and chemo to do the clean up on any escapees. 

    You didn't say how old your mom is.....I was 61 when I was diagnosed....I'm almost 65 now (just a little short of 3 years out of treatment).  I will say...taking care of grandma and your mom is going to leave you with a pretty full plate.  Others will chime in here, and offer more advice.

    I'm glad you found us.....these folks saved my bacon when I was in treatment.....lots of tips and tricks to get through treatment easier.  This is no walk in the park, so tell mom to hang onto her seat.....she'll come out the other side ok, just getting there can get rocky.

    p

    age

     My mom is really close to your age, 60. She made it through the lymph node surgery and the surgery to remove the tumor. The tumor had wrapped itself around one of her nerves so he had to cut the nerve but tried to sew it together. I think it worked as she is still able to lift her arm unilike what was expected. The downside was that the backof her head is so painful she is unable to lay on it (not sure how that will work with radiation) and that is because of the severing of the nerve back there. She also has swelling but I was told that should go away unless it's a permanent thing and you cannot know that for a while (or so the clinic doctor said). She is having a lot of tightness where she describes she feels like someone is strangling her. I'm guessing that's from the scar tissue forming? She's a week and 2 days from surgery. Should she be doing exercises yet? The doctor won't return our calls. She has made two and sent 3 emails with questions but nothing is coming from it. She instead asked the clinic some of the questions such as how to deal with facial paralysis. She apparently had trama done to the left side of the face when they did the surgery and now it's unable to move. She's having trouble as she cannot open her mouth and she is drooling and having her soups come out that side of the mouth. It reminds me of a stroke victim's face and it was not expected apparently. I'm so worried about her and wish I had answers but right now we have none as the biospy results haven't even been given to us yet. Thanks everyone for writing back. It was good to hear we are not alone in this and that we will make it through it. Doctors seem quick to let their patients deal with the recoveries on their own not giving them any resources to help. It's great that you guys exist! Anyone know anything about radiation? We were debating on having her treatments local or at the bigger hospital she is going to. (She goes to Yale but we live an hour away from that hospital. We are concerned with the side effects of chemo and radiation that being in a car for an hour there and an hour back plus be having to balance taking care of her and grandma is going to be tough). We ere thinking of perhaps going to a local cancer treatment place that is only minutes away but we are not sure it's wise. Did anyone else do this or did you all stick to the big hospitals and just suck it up for the long ride there and back? I just can't imagine driving an hour with sickness...