1. < Head & Neck Cancer

Neck Dissection Lymph Node Removal/Sampling - Yes or No?

Posted by mamacatjane @mamacatjane, Jan 17, 2023

After being referred by my PCP, I saw an oral & maxillofacial surgeon on 10/21/22, who biopsied a small lesion on my tongue (which I initially thought was just a canker sore but became concerned when it wouldn't go away after a couple of months), and was subsequently diagnosed with SCC of the left lateral tongue on 10/25/22. Since examination by my surgeon, as well as my PET/CT scan on 11/17/22, showed no evidence of invasion, neck dissection lymph node removal/sampling at the time of my surgery on 11/19/22 was considered selective, and we made the decision to defer it at that time, pending final surgical pathology. My left partial glossectomy went well, and my recuperation has been going as well as can be expected.

Now I am faced with a very difficult decision about how to proceed with treatment, which I have discussed with my immediate family members and a few close friends, with mixed feedback and opinions, so I am turning to those of you who have actually experienced this. Although my tumor was only Grade 1 according to its small size (1.5 x 1.0 x 0.7 cm), its depth of invasion was 6 mm, which barely meets the criteria for Stage 2, since Stage 1 depth must be < 5 mm. My surgeon has discussed with me the potential risks associated with neck dissection - injury to the nerves of the tongue and lower lip, nerves to allow swallowing and movement of the neck muscles, vessel injury, and scarring, not to mention the long-term effects of anesthesia.

Alternatively, my option is a watchful waiting approach, having PET/CT scans as often as possible - probably every three months - with ultrasounds in between. He says that based on the literature, there is a 15-20% chance that there is lymph node invasion, even though nothing is visible on the scans - meaning that there's an 80-85% chance that there is not. I am currently scheduled for my next PET/CT scan on 2/17/23, which will be exactly three months since my last one, but I wonder whether we should be scheduling surgery instead. Thinking about all the potential injury risks truly scares me, and I don't know whether it's worth taking those risks, especially since I am barely a candidate for neck dissection surgery at all - by only 1 mm! That's what makes this decision so difficult for me and keeps me up at night. I would love to hear from those of you who have had this surgery, as well as any of you who have decided against it. HELP!!

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

newtonguecancer | @newtonguecancer | Feb 15, 2023
In reply to @colleenyoung "@newtonguecancer @riverratlt, I see you have several questions for each other as you travel this road..." + (show)
@colleenyoung

@newtonguecancer @riverratlt, I see you have several questions for each other as you travel this road quasi together. When do you each start radiation?

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I did the simulation today and I start radiation next Thursday. New MRI showed no cancer present in any of my facial structures so that is good. Still very anxious about this whole process but MSK has been amazing they really seem to know how to treat this. My oncologist is also an ent and only treats head and neck cancer patients.

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newtonguecancer | @newtonguecancer | Feb 15, 2023

Hi I had a very similar situation to you but my depth of invasion was only 3 mm and still 2 months later my lymph nodes swelled up and instead of doing a selective they did a radical and I had lots of side effects from the neck dissection. My voice was effected from the vagus nerve manipulation. The nerve to my tongue and lip was effected and I had a chyle leak which was a really bad complication as I spent a week in the hospital with that being treated with octreotide. It was a real shock to me. I was feeling the exact way you did trying to avoid the neck dissection. Then I was left scrambling to get it done asap. My surgeon says it goes to the lymph nodes 25 percent of the time regardless. I feel that it is a much better option to get the selective neck dissection then have to get the radical later. If I could have done it all over again I would have opted for the selective neck dissection to try to avoid all that I went through. I did have PNI though and also my cancer was rated at moderately to poorly differentiated I think these things factor in also. Good luck with your decision it is a hard one I know. Now I have radiation did they consider radiation with you ?

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1 reply
sandralea58 | @sandralea58 | Feb 15, 2023
In reply to @thomason "@mamacatjane, although my cancer was in the throat area, I can empathize with this decision you..." + (show)
@thomason

@mamacatjane, although my cancer was in the throat area, I can empathize with this decision you have to make. Before undergoing radiation, chemotherapy was also on the list of to-dos. After researching the odds of chemotherapy helping me (as you have done) and speaking with the oncologist in an up-front manner, I decided against the chemotherapy. This is because having the chemotherapy would have increased my odds of survival by 1-2%, yet there was a greater chance of hearing loss, plus other negative consequences. The decision was very troublesome for a few weeks, before making up my mind. After you explained it, the odds are in your favor...not by the margin of 1-2%, but 80-85%. I cannot tell you what to do. Being an older person, I would not elect for the surgery with those odds. Pray about it, in the quiet of the morning. Listen to the still, small voice inside!

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We made the same decision as you. Husband was told exactly the same numbers by adding the chemo. The side affects were just too much at 70 years of age to warrant it. He finished his 35 rounds of radiation treatment and is doing well. 8 weeks post treatment, the neck has healed the swelling is gone and his taste buds are starting to return. He looks healthy, although he tires easily still. His PET scan is early April, I will post the results here. How are you feeling? Have you had your PET scan.

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1 reply
thomason | @thomason | Feb 15, 2023
In reply to @sandralea58 "We made the same decision as you. Husband was told exactly the same numbers by adding..." + (show)
@sandralea58

We made the same decision as you. Husband was told exactly the same numbers by adding the chemo. The side affects were just too much at 70 years of age to warrant it. He finished his 35 rounds of radiation treatment and is doing well. 8 weeks post treatment, the neck has healed the swelling is gone and his taste buds are starting to return. He looks healthy, although he tires easily still. His PET scan is early April, I will post the results here. How are you feeling? Have you had your PET scan.

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@sandralea58, I am so glad your husband is getting his "old self" back! As for Pet Scans, I have had two since the treatments ended, as it has been about four years ago now (that is hard to believe.) It took a long time to get back to eating and even talking. With the vocal exercises, it slowly returned. A PET scan is probably going to be due in the near future...they make me apprehensive. Reason being, if something is found, going through all of the treatment and after-effects would be too much. At 64-years-of-age, it would be very difficult. It is difficult no matter how old you are though. It is the younger people that have it the worse, in terms of the ability to live their life to the fullest. Maybe one day they will find a cure! Best wishes to you and yours.

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newtonguecancer | @newtonguecancer | Feb 19, 2023
In reply to @colleenyoung "@newtonguecancer @riverratlt, I see you have several questions for each other as you travel this road..." + (show)
@colleenyoung

@newtonguecancer @riverratlt, I see you have several questions for each other as you travel this road quasi together. When do you each start radiation?

Jump to this post

Just got new results from MRI and PET scan no cancer is showing up anywhere. Does this mean there is a high likelihood of long term success from the radiation treatments? Thanks

REPLY
littlecrown1966 | @littlecrown1966 | Feb 19, 2023
In reply to @newtonguecancer "Hi I had a very similar situation to you but my depth of invasion was only..." + (show)
@newtonguecancer

Hi I had a very similar situation to you but my depth of invasion was only 3 mm and still 2 months later my lymph nodes swelled up and instead of doing a selective they did a radical and I had lots of side effects from the neck dissection. My voice was effected from the vagus nerve manipulation. The nerve to my tongue and lip was effected and I had a chyle leak which was a really bad complication as I spent a week in the hospital with that being treated with octreotide. It was a real shock to me. I was feeling the exact way you did trying to avoid the neck dissection. Then I was left scrambling to get it done asap. My surgeon says it goes to the lymph nodes 25 percent of the time regardless. I feel that it is a much better option to get the selective neck dissection then have to get the radical later. If I could have done it all over again I would have opted for the selective neck dissection to try to avoid all that I went through. I did have PNI though and also my cancer was rated at moderately to poorly differentiated I think these things factor in also. Good luck with your decision it is a hard one I know. Now I have radiation did they consider radiation with you ?

Jump to this post

Hello,
I am a medullary thyroid carcinoma patient...metastasis to lymph nodes and lungs. I have had 3 neck disections, the first included removal of my thyroid that contained a tumor, and selective removal of lymph nodes in surrounding area one or two of these additional lymph nodes contained tumors. The second again was a selective removal of certain lymph nodes, and cleanup of scar tissue in thyroid bed....the third was a left sided radical neck disection removing approximately 40 lymph nodes of which about 10 of those contained cancer. I was lucky to have a very good surgeon. Even so, my last and most recent radical neck disection also left me battling some side effects and circumstances. Of these I experienced some temporary loss of nerve and muscle control affecting being able to raise my left arm, some tightening of tendons, muscle spasms, and muscle bunching in neck and shoulders, problems with voice and swallowing, problems turning my head, lymphadema in head neck and upper torso, pressure headaches, blurred vision etc. While dealing with these side effects was pretty daunting, through therapy, and home selfcare some things improved, some things did not. This is one treatment option. This is the option i had available where i was. I had no knowledge of other treatment until coming to Mayo for the first time where my care team did full work up, blood tests and scans and discussed with me additional treatment options, of these was a treatment called ethynol ablasion. A special injection into the lymph node or tumor itself , and discussed targeted therapy for the lungs. They did gnome mapping to determine specific gene mutations. Doing this enables them to design treatment to target these specific genes. I wish i had known of these additional options of treatment available prior to my neck disections. Not only is the treatment of ethynol ablasion less invasive, but less side effects damage, etc. Weighing the fact that treatment is different per each individual, and your care team will be knowledgeable on what is best for you. I found out there is a dramatic difference in cost as well, and may be something to talk to or ask your doctor/oncologist about. My next scans are in April....recent ultra-sounds i had done after swallowing issues show new tumors in lymph nodes...and some advancing in size. I look forward to some other possibilities rather than another neck disection. Best regards in your treatment process.

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lilyann | @lilyann | Feb 20, 2023

hello everyone, i am into my 3rd week past surgery. i'm still in pain and it feels like the biggest dog collar around my neck. stinging pain off and on, swallowing and voice still a problem. i had the rt. side radical thyroid surgery, they had to remove my rt. voice box due to full of cancer, 11 of 19 lymph nodes were cancerous. they are planning to do the left side in a month to remove the rest of the thyroid glad, i am having serious thoughts about even doing it the way i feel now. the surgeon said that the radioactive iodine will not help the left side only the right side because of the removal of the thyroid gland. any thoughts from anyone would be appreciated as when you are uncomfortable i'm guessing i'm not thinking straight. the surgeon said the 2nd surgery would be entirely up to me. i'm 80 and surprized what i have already come through, i cannot get a tylenol down my throat. wish the best for everyone. take care

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