1. < Head & Neck Cancer

Lymph node dissection

Posted by newtonguecancer @newtonguecancer, Jan 9, 2023

Was diagnosed with squamous tongue cancer 10/6/22. At the time no sign of cancer in the nodes on the PET scan. Had surgery 10/26/22 to remove the cancer lesion on tongue. Was 3 mm depth of invasion no sign of it in the blood or lymph channel. It was positive for perineural invasion. Recommendation was not to take lymph nodes out but to get left over high grade dyplasia off of tongue and then do radiation. 12/6/22 had sugery to remove dysplasia. Went in for first radiation 12/30/22 Dr felt my neck and felt a swollen node. Went in for CAT scan with contrast and it came back with 3 abnormal nodes. Now scheduling surgery to remove lymph nodes on left side a selective neck dissection and then radiation. Currently waiting for the surgery. Looking back to see where I went wrong. I guess I should have insisted they take the nodes at the first surgery to make sure they were cancer free ? Has anyone heard of this happening before ? Currently have one lymph node that is painful and feeling down about not getting nodes previously removed. I have heard that cancerous lymph nodes are not typically painful. Any feedback on what I will be going through with neck dissection and radiation and should I have had nodes taken out at first surgery ?

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Mentor
Sue, Volunteer Mentor | @sepdvm | Jan 9, 2023

Hello. I am 10 years from SCC in my external ear canal, with metastatic disease now. I had a temporal bone resection and select neck dissection as my original surgery at Mayo Clinic MN. Even though CT scan showed normal nodes this was their approach especially since I had bone invasion. The nodes were clear but with facial nerve involvement and potential parotid salivary gland, those were removed also. I am surprised that not even a few nodes were taken at your surgery but perhaps the early catch of your small tumor made the decision. Since my surgery was all done at once, the drilling out of the bone around my ear causing dizziness and facial paralysis were more overwhelming than the neck surgery healing. Some skin stretching and topical treatment of the scar was all that I did. Radiation for me was ear/skull centered centered but I still had skin inflammation and ulcerations orally and change of taste buds. Eating was tough but I had an oral lidocaine prescribed to numb mouth prior to eating. A preparation called magic mouthwash from the pharmacy was also soothing. I made it thru 7 weeks without a stomach tube for feeding, but others do not. Dry mouth is an issue now but there are many solutions for that, and staying hydrated is a huge help. My oncologist recommended joining SPOHNC which is Support for People with Oral and Head and Neck Cancer as they have lots of information. Don't look back at the what ifs as you cannot change anything. Just move forward with this next step and if you are not agreeing with your doctor, ask for a referral to a large cancer center or major referral center for another opinion. We drive 10 hours to MN for the excellent care at Mayo Clinic and will continue to do so as this level of care is amazing. Good luck to you.

REPLY
3 replies
newtonguecancer | @newtonguecancer | Jan 10, 2023
In reply to @sepdvm "Hello. I am 10 years from SCC in my external ear canal, with metastatic disease now...." + (show)
@sepdvm

Hello. I am 10 years from SCC in my external ear canal, with metastatic disease now. I had a temporal bone resection and select neck dissection as my original surgery at Mayo Clinic MN. Even though CT scan showed normal nodes this was their approach especially since I had bone invasion. The nodes were clear but with facial nerve involvement and potential parotid salivary gland, those were removed also. I am surprised that not even a few nodes were taken at your surgery but perhaps the early catch of your small tumor made the decision. Since my surgery was all done at once, the drilling out of the bone around my ear causing dizziness and facial paralysis were more overwhelming than the neck surgery healing. Some skin stretching and topical treatment of the scar was all that I did. Radiation for me was ear/skull centered centered but I still had skin inflammation and ulcerations orally and change of taste buds. Eating was tough but I had an oral lidocaine prescribed to numb mouth prior to eating. A preparation called magic mouthwash from the pharmacy was also soothing. I made it thru 7 weeks without a stomach tube for feeding, but others do not. Dry mouth is an issue now but there are many solutions for that, and staying hydrated is a huge help. My oncologist recommended joining SPOHNC which is Support for People with Oral and Head and Neck Cancer as they have lots of information. Don't look back at the what ifs as you cannot change anything. Just move forward with this next step and if you are not agreeing with your doctor, ask for a referral to a large cancer center or major referral center for another opinion. We drive 10 hours to MN for the excellent care at Mayo Clinic and will continue to do so as this level of care is amazing. Good luck to you.

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My surgery is scheduled for Friday at John’s Hopkins they they seem to be very good there and the Dr doing the surgery authored a medical textbook on neck dissections. So seems like a good spot either there or Sloan Kettering.

REPLY
1 reply
Mentor
Sue, Volunteer Mentor | @sepdvm | Jan 10, 2023
In reply to @newtonguecancer "My surgery is scheduled for Friday at John’s Hopkins they they seem to be very good..." + (show)
@newtonguecancer

My surgery is scheduled for Friday at John’s Hopkins they they seem to be very good there and the Dr doing the surgery authored a medical textbook on neck dissections. So seems like a good spot either there or Sloan Kettering.

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It sounds like you have a great surgical team. Good luck Friday.

REPLY
newtonguecancer | @newtonguecancer | Jan 11, 2023
In reply to @sepdvm "Hello. I am 10 years from SCC in my external ear canal, with metastatic disease now...." + (show)
@sepdvm

Hello. I am 10 years from SCC in my external ear canal, with metastatic disease now. I had a temporal bone resection and select neck dissection as my original surgery at Mayo Clinic MN. Even though CT scan showed normal nodes this was their approach especially since I had bone invasion. The nodes were clear but with facial nerve involvement and potential parotid salivary gland, those were removed also. I am surprised that not even a few nodes were taken at your surgery but perhaps the early catch of your small tumor made the decision. Since my surgery was all done at once, the drilling out of the bone around my ear causing dizziness and facial paralysis were more overwhelming than the neck surgery healing. Some skin stretching and topical treatment of the scar was all that I did. Radiation for me was ear/skull centered centered but I still had skin inflammation and ulcerations orally and change of taste buds. Eating was tough but I had an oral lidocaine prescribed to numb mouth prior to eating. A preparation called magic mouthwash from the pharmacy was also soothing. I made it thru 7 weeks without a stomach tube for feeding, but others do not. Dry mouth is an issue now but there are many solutions for that, and staying hydrated is a huge help. My oncologist recommended joining SPOHNC which is Support for People with Oral and Head and Neck Cancer as they have lots of information. Don't look back at the what ifs as you cannot change anything. Just move forward with this next step and if you are not agreeing with your doctor, ask for a referral to a large cancer center or major referral center for another opinion. We drive 10 hours to MN for the excellent care at Mayo Clinic and will continue to do so as this level of care is amazing. Good luck to you.

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Sugery is scheduled for Friday. Currently experiencing some painful lymph nodes did anyone else have this ? What causes it ?

REPLY
newtonguecancer | @newtonguecancer | Jan 12, 2023
In reply to @sepdvm "Hello. I am 10 years from SCC in my external ear canal, with metastatic disease now...." + (show)
@sepdvm

Hello. I am 10 years from SCC in my external ear canal, with metastatic disease now. I had a temporal bone resection and select neck dissection as my original surgery at Mayo Clinic MN. Even though CT scan showed normal nodes this was their approach especially since I had bone invasion. The nodes were clear but with facial nerve involvement and potential parotid salivary gland, those were removed also. I am surprised that not even a few nodes were taken at your surgery but perhaps the early catch of your small tumor made the decision. Since my surgery was all done at once, the drilling out of the bone around my ear causing dizziness and facial paralysis were more overwhelming than the neck surgery healing. Some skin stretching and topical treatment of the scar was all that I did. Radiation for me was ear/skull centered centered but I still had skin inflammation and ulcerations orally and change of taste buds. Eating was tough but I had an oral lidocaine prescribed to numb mouth prior to eating. A preparation called magic mouthwash from the pharmacy was also soothing. I made it thru 7 weeks without a stomach tube for feeding, but others do not. Dry mouth is an issue now but there are many solutions for that, and staying hydrated is a huge help. My oncologist recommended joining SPOHNC which is Support for People with Oral and Head and Neck Cancer as they have lots of information. Don't look back at the what ifs as you cannot change anything. Just move forward with this next step and if you are not agreeing with your doctor, ask for a referral to a large cancer center or major referral center for another opinion. We drive 10 hours to MN for the excellent care at Mayo Clinic and will continue to do so as this level of care is amazing. Good luck to you.

Jump to this post

So you started out with ear cancer?

REPLY
1 reply
Mentor
Sue, Volunteer Mentor | @sepdvm | Jan 12, 2023
In reply to @newtonguecancer "So you started out with ear cancer?" + (show)
@newtonguecancer

So you started out with ear cancer?

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Yes, a very rare location deep in ear canal by the eardrum. It was there long enough to invade the bone. So skin origin not mucous membrane. My dad died of oral SCC so I am assuming a genetic predisposition. My pain was from bone invasion, but I know people with enlarged involved lymph nodes can have node pain. Any inflammation in a lymph node can cause discomfort, no matter what the cause. Cancer pain seems to be the most persistent. Good luck tomorrow.

REPLY
2 replies
newtonguecancer | @newtonguecancer | Jan 12, 2023
In reply to @sepdvm "Yes, a very rare location deep in ear canal by the eardrum. It was there long..." + (show)
@sepdvm

Yes, a very rare location deep in ear canal by the eardrum. It was there long enough to invade the bone. So skin origin not mucous membrane. My dad died of oral SCC so I am assuming a genetic predisposition. My pain was from bone invasion, but I know people with enlarged involved lymph nodes can have node pain. Any inflammation in a lymph node can cause discomfort, no matter what the cause. Cancer pain seems to be the most persistent. Good luck tomorrow.

Jump to this post

So from what I read cancerous lymph nodes don’t usually cause pain but sometimes they do ? Do the swollen lymph nodes put pressure on adjacent nerves. It was very strange I was fine but then began experiencing pain once the lymph node was identified. From the time of identifying the swollen lymph node to surgery was 2 weeks so very lucky. I also have a history of anxiety disorder and somataform disorder so sometimes my mind can enhance or even create pain guess I will find out much more tomorrow have you heard good things about Hopkins ? I went to them because they seemed to develop some treatments for hpv cancer of the head and neck. I haven’t been able to sleep much wo taking anxiety meds and have also had little appetite. Did you experience any of this. How was your pain after the surgery ?

REPLY
Mentor
Sue, Volunteer Mentor | @sepdvm | Jan 13, 2023

I do know patients with lymphoma where their enlarged nodes caused discomfort. Is that from pressure on surrounding tissues or the node itself? Don't know the answer. Hopkins has a great reputation as does Memorial Sloan Kettering in dealing with cancer. My postop pain was minimal and mostly due to the temporal bone resection and subsequent headaches and dizziness. The neck surgery gave me almost no discomfort but a tightness during healing a few weeks later. Massage and scar stretching and treatment took care of that. I wish you an easy recovery and minimal discomfort. I know how your mind can maximize pain so be sure that your doctors are addressing that if you are having a lot of pain. Gabapentin can be a useful drug for nerve associated pain. Wishing you a skilled surgeon and fantastic nurses for your hospital stay.

REPLY
lilyann | @lilyann | Jan 13, 2023
In reply to @sepdvm "Yes, a very rare location deep in ear canal by the eardrum. It was there long..." + (show)
@sepdvm

Yes, a very rare location deep in ear canal by the eardrum. It was there long enough to invade the bone. So skin origin not mucous membrane. My dad died of oral SCC so I am assuming a genetic predisposition. My pain was from bone invasion, but I know people with enlarged involved lymph nodes can have node pain. Any inflammation in a lymph node can cause discomfort, no matter what the cause. Cancer pain seems to be the most persistent. Good luck tomorrow.

Jump to this post

wishing you the best. i'm not sure if i might have a small portion of this, being my right ear is constantly filled with fluid. it hurts all the way into the top of my head. its hard to turn my head to either side. still waiting for the call for my thyroidectomy. prayers for all.

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