Neck dissection on Monday 9/23

Would have expected a PET scan? That would show it if it was cancer, in fact, the more I think about it, going in without a PET scan is just plain stupid.

Depending on the PET scan, chemo and radiation to reduce the size, and THEN surgery.

Of course Im just going by my experience, my lymph nodes were such that I could put the heel of my hand on my jaw, and my fingers on the base of my skull, and literally cup the swelling.

JAL,

I had a jugular vein dissection to remove an entangled lymph node (cancerous).  It all worked out fine with very little pain.

PET scans are great for showing all areas of activity, but the areas which light up are not always cancerous.  Numerous H&N members have gotten a negative needle biopsy on a cancerous lymph node.  It seems the best biopsy comes from a direct sample of the questionable area.  I personally know of an area which was deemed without cancer, but after one look by the surgeon he said “I know cancer and that is cancer”.  He was correct.

You said you were superficial SCC, did that mean they were going to watch it without rads or chemo?

You are far from circling the drain. So, shake it off and feel better.  As I remember, you are the member with the 6 undecided doctors (or something).  Well, it is time to get drop dead serious and figure this all out and make a plan which is likely to be successful and has anti-circle the drain factors.

Be better, good luck.

Matt

Just throwing in my experience. I am a 47yr old male in very good health. I noticed an enlarged node on my neck and went to my PCP. He put me on antibiotics. When that didn't work he sent me to an ENT. This ENT was dismissive at first since I don't drink or smoke. After a couple of weeks he decided the node was cancerous. In fact he said up to 4 nodes felt enlarged. He ordered no scans at all and no biopsies. He simply decided the nodes had cancer and wanted to do neck dissection on both sides.

I said "Hell No!" and made an appointment with an oncologist. The oncologist agreed it probably was some sort of cancer. He said I needed to go to a different ENT as he agreed that surgery should not be the first option in this day and age of cancer treatment. He recommended an ENT he really liked. I went and saw him and it was a totally different experience than the first ENT. This ENT scoped me first thing (other ENT never did), he then said he would prefer to do a needle biopsy on my node and that we'd have results the next day. I did that and sure enough SCC. (stage 3 base of tongue).

My new ENT said the best course of action since we've confirmed it is cancer is for me to go to a cancer center where they take a group approach (cancer board) to treatment and do not rush to surgery. 

I went to the cancer center in my state and the oncologist was excellent. She confirmed the cancer was at the base of my tongue (scoped it). She then told me we needed to know if it was HPV related and scheduled a biopsy of my tongue. That came back positive. She also had me do a PET scan to see where all the cancer was. Guess what, only one node effected, not 4.

She then said she is not a fan of surgery first because she has found that after treatment it is often not necessary. I just finished treatment a month ago (35 rads and 3 big chemos). I still have an enlarged node on my neck. My oncologist said she'll wait until my 3 month PET scan to make a decision on my node. She said if it is clear of cancer then she suggests leaving it alone unless the appearance bothers me (it's pretty small now, so I don't even notice it). She said if does come back on the PET as cancerous, then she'll take it out (and only it out).

I feel extremely comfortable with this plan.

My husband had lymph nodes removed in the beginning when they removed the tongue tumor, even though the nodes ended up not being cancerous, just to be on the safe side. The wait and watch would have made me lose my mind. As tonita said, the worst part of the neck dissection for my husband was the drain. It was a real pain. But the surgery was not so bad, and my husband recovered well. As for the PET scan, my husband has never had one...just CT scans. Best of luck to you...you will be in my prayers.

JAL, the next few weeks will be rough. What will follow will be a lot of adjustment. Once substantial healing is passed... perhaps around six months, you will be faced with learning what you can and cannot do... changes in what you can eat, what words may be difficult and finding other expressions with easer phonics... maybe even facial gestures to avoid so you don't tip off the people around you.

Reading this thread has brought back a lot of memories. Mine was not malignant, but I do remember even after 35 years, the surgeon on his first post-op visit asking me to smile. I did, and he patted me wth a return smile. I didn't fully get it at the time. I'm sorry that you were apparently not so fortunate. Nerve tissue does have the ability to regrow but is a very slow process, if it occurs at all.

You don't mention a drain or feeding tube, unless I missed that, so I won't go into post-op care. Just keep in your head the fact that  that you pulled thru this. You survived. There will be some time to discover and become acclamated to your new normal. Also hopefully there will be no further surgeries necessary after this, but if so, each one will only make you feel more confident that you will make it, you will survive, and life goes on.

This experience has made you stronger!

JAL23 said:

Wow, hell and back. The neck

Wow, hell and back. The neck dissection was done on Monday, and tonight is the first night where I can actually open my computer and not feel dizzy.

They found it - the mass growing in my neck was squamous cell carcinoma from the original tongue tumor. Had an extensive 6 hour surgery, had lymph nodes removed from all four levels of my neck. The tumor had actually strangled my jugular and eaten away at my submandibular nerve. Both were sacrificed to remove the tumor. My ENT said that he literally had to scrape to tumor off my corotid, and had they waited another week or two, it would have essentially been inoperable.

I feel like death, the whole side of my face is paralyzed, and I cannot move or feel the right side of my tongue. As a new professor, this is the most disheartening thing for me - I am having quite a bit of trouble speaking and articulating, along with eating and not feeling like choking.

I will make another post once I have more info and a followup PET scan, but this is essentially the worst case scenario I feared. I've read the neck dissection is the easy part - woooh boy if this is the easy part I am probably in for a whopper with the chemo/rads. I feel broken, hopeless, and left wondering whether the path to a cure leaves you with enough of yourself that it's even worth it.

I think I need time to heal and reflect on what has and will be happening to me. I am sorry if this comes off harsh and pessemistic, but I don't have the strength to go forward just yet.

You really have had a rough time!  Wishing you the best and sending many hugs for your recovery.

I know you are not there yet, but there are things that can be done for the paralysis.  Husband has paralysis of one side of his face.  Due to his advanced age, we are just adjusting to the new normal.  However I did some research into the issue, and there are corrections that can be done.  This not only effects appearance, but improves speech and eating.  All is not hopeless.

Crystal

Polkadrummer said:

Neck dissection

Hi JAL23

 

I am 79 years old and in good shape engaging in Senior fitness classes three times a week. Whats that have to do with you? I’m trying to tell you to stay positive and optimistic as it served me well going into the following procedures.

 

In 1997, I was diagnosed with squamous cell carcinoma at base of tongue (left) and had a left radical neck dissection, midline mandibulotomy for left tongue base resection and a left pectoralis cutaneous major flap and , yes, they sacrificed the internal jugular, sternocleidomastoid, and spinal accessory nerves in the left neck, as well as spinal and cervical sensory branches of those nerves. This eleven and a half hour surgery was done at University of California, Irvine which is a teaching hospital.

 

This was followed by 20 days of radiation but no Chemo. If you do have radiation you will have to be aware regarding any tooth extraction to avoid osteoradionecrosis.

 

I am happy to say I retain all my taste senses and even enjoy spicy foods.

 

Not to hijack this thread but I am so happy that you posted! Sounds like what I had done and it hasn't been fun. Nice to know that there's a light at the end of the tunnel. Thank you polkadrummer!