Tonsillectomy & neck lymph node removal at the sometime surgery

Hello @tomczyfe and welcome to our head and neck group. I read your post and I am astounded by your surgical experience. I am not a doctor, just a patient who has looked at many cases of cancer in the tonsil (of which I had) and a lymph node. In medical school in the study of the lymphatic system, they usually make it quite clear that lymph nodes (of which the tonsils are also) are filters for gathering up the bad stuff in our systems. So by all means, rip out all your filters and they won't get clogged with cancer? Again, this is just my opinion and basic common sense.
Anyway, here you are now with a chopped-up neck by a doctor that somehow forgot there is a human being on his table. What is done is done. Certainly do not blame yourself. You were not advised well. Cancer is a red flag that makes us lose our minds a bit. Hard to make rational decisions with cancer on the line. Let's move forward and make the best of where you are.
Radiation is not a fun trip either, but we know that it is pretty good at destroying any remaining cancers. There are also now medications such as Keytruda which shows great success although we don't know the long-term results. I myself had the surgery and radiation route over twenty years ago. I am your age now with a good life. Let's see who else in this group has more experience with radical neck dissection and getting the filters yanked. In the meantime welcome. Personally I would rather welcome you to a golf course or social event. But here we are. Courage.

Thank you for the response, information & inspiration. Dr told me only way to remove both tonsil and one lymph node together would be only with a modified radical neck dissection. The preferred route was non invasive Sential lymph node biopsy surgery or partial neck dissection which would have removed the infected lymph node and a couple of the surrounding cells. All information I am seeing is that both of these non invasive procedures could also be combined into one procedure also and not only the modified radical neck dissection. I now have not only a compromised immune system losing 54 healthy lymph nodes. I already have with psoriasis that has subsided. Also holding off on radiation as still healing 5 weeks post operation and fearful of increased side effects with these healthy nodes removed. We will wait until October for follow up blood and PET scan. I am HPV positive which is a plus. First NavDx blood test prior to surgery was 10. After surgery the NavDx blood test was Negative with all clean and clear margins along with mucous areas pathology testing being negative.
My soft palate has not completely sealed causing a persistent nasal when speaking annoying, embarrassing & frustrating voice as air is escaping along with fluid coming out of the nose when drinking quickly and needing fluid to assist in food swallowing that is somewhat subsiding.
Just need some positive steps to start happening. Dr says I will not get lymphedema but can I really trust what he says? They never should downplay potential side effects.
The initial fine needle aspiration of infected lymph node captured much fluid and gave me hope that there was no malignancy present that ended up being a false negative. At that point I thought that there maybe no cancer in the node and told Dr take both tonsils & node out at the same time as I was not thinking clearly in a conversation while driving in my car. He never mentioned are you sure of this and all of the potential side effects?

As the week before when physically in his office with my wife present, my wife ask for an alternate non invasive procedure. Dr said yes there is a 2 step procedure with removal of tonsils first then putting sentinel dye marker by infested node to see if any other cancer. This method would be non invasive, no side effects, minimal recovery time and small scar under left jawbone with follow up surgery in 2 weeks. I looked at him and pointed with both hands and arms saying "that is the procedure I want and to sign me up"!

I am kicking myself for not making non invasive and quality of life choice absolutely perfectly clear. I am an outgoing 6'5" former 220 lb now just under 200 lbs man that loves to talk and socialize and I am just not myself. We have worked so hard to get to this point to enjoy life to the fullest and have quality of life to go along with it. Much difficulty getting a restful sleep as mind wandering that I am trying to relax and control. As you said what done is done and let us go forward in a positive direction.
My wife is my Rock & inspiration who I Love so dearly. Also a decent 10 handicap golfer (the older I get the better I used to be) being a mender at the TPC in Myrtle Beach.
Just want to make steps forward and having the clarity of my old voice back would be such a positive start & inspiration along with continuing to be cancer free like you for the next 20 years!
Thank you again and very much appreciated!

Fred

Thank you for the response, information & inspiration. Dr told me only way to remove both tonsil and one lymph node together would be only with a modified radical neck dissection. The preferred route was non invasive Sential lymph node biopsy surgery or partial neck dissection which would have removed the infected lymph node and a couple of the surrounding cells. All information I am seeing is that both of these non invasive procedures could also be combined into one procedure also and not only the modified radical neck dissection. I now have not only a compromised immune system losing 54 healthy lymph nodes. I already have with psoriasis that has subsided. Also holding off on radiation as still healing 5 weeks post operation and fearful of increased side effects with these healthy nodes removed. We will wait until October for follow up blood and PET scan. I am HPV positive which is a plus. First NavDx blood test prior to surgery was 10. After surgery the NavDx blood test was Negative with all clean and clear margins along with mucous areas pathology testing being negative.
My soft palate has not completely sealed causing a persistent nasal when speaking annoying, embarrassing & frustrating voice as air is escaping along with fluid coming out of the nose when drinking quickly and needing fluid to assist in food swallowing that is somewhat subsiding.
Just need some positive steps to start happening. Dr says I will not get lymphedema but can I really trust what he says? They never should downplay potential side effects.
The initial fine needle aspiration of infected lymph node captured much fluid and gave me hope that there was no malignancy present that ended up being a false negative. At that point I thought that there maybe no cancer in the node and told Dr take both tonsils & node out at the same time as I was not thinking clearly in a conversation while driving in my car. He never mentioned are you sure of this and all of the potential side effects?

As the week before when physically in his office with my wife present, my wife ask for an alternate non invasive procedure. Dr said yes there is a 2 step procedure with removal of tonsils first then putting sentinel dye marker by infested node to see if any other cancer. This method would be non invasive, no side effects, minimal recovery time and small scar under left jawbone with follow up surgery in 2 weeks. I looked at him and pointed with both hands and arms saying "that is the procedure I want and to sign me up"!

I am kicking myself for not making non invasive and quality of life choice absolutely perfectly clear. I am an outgoing 6'5" former 220 lb now just under 200 lbs man that loves to talk and socialize and I am just not myself. We have worked so hard to get to this point to enjoy life to the fullest and have quality of life to go along with it. Much difficulty getting a restful sleep as mind wandering that I am trying to relax and control. As you said what done is done and let us go forward in a positive direction.
My wife is my Rock & inspiration who I Love so dearly. Also a decent 10 handicap golfer (the older I get the better I used to be) being a mender at the TPC in Myrtle Beach.
Just want to make steps forward and having the clarity of my old voice back would be such a positive start & inspiration along with continuing to be cancer free like you for the next 20 years!
Thank you again and very much appreciated!

Fred

Hello Fred, From my experience and many posts on this forum it will take quite awhile to heal. I know you want your old voice back but it may take many months and you may have a slightly "new" voice. We all have had to adjust unfortunately with cancer but winning the battle beats the alternative. My story is similar to yours but I had base of tongue HPV SCC cancer.
My story if it helps...I had TORS surgery April 2023 to remove base of tongue tumor ( negative margins during surgery). At the same time I had Radical neck dissection to remove the lymph nodes on one side of Neck and sent off to Pathology. 2 nodes had cancer. I was considered Stage 3. I had 30 rounds of Proton Radiation June 2023 to "cleanup" any cancer that may have been left behind from HPV16 base of tongue and Lymph nodes on one side of Neck . Also I had NO Chemo. l was very worried about going on a feed tubing , Dysphagia and Not being about to swallow (eat or drink). I started doing mouth,Neck, tongue and swallowing exercises prior to proton Radiation. If you have a Speech therapist they can help you with this. Also, There are tons of Youtube videos on the subject. It was a struggle to eat during radiation and I FORCED myself. You will lose appetite and everything has no taste. Today 24 months out of radiation treatment I would say I am about 95% back to normal with minimal side effects. Head and Neck Radiation is a real tough deal. I would go for as little of radiation as possible as it is the gift that keeps on giving long after treatment. I did get some slight lymphedema in my chin area but it only lasted a couple of months. De-escalation with a lower Gray dose/less treatments is becoming a new protocol in many places. I would discuss with your Doctor. Is Proton Radiation an option for you? In my opinion, Proton is more targeted with less side effects. However, It is a battle as insurance companies do not want to pay for Proton when Photon is much cheaper. Also, Proton facilities are far and few in between. Also, My first NavDx I think was around 20 or so prior to surgery. I have had 3 since and all were 0. In closing you are facing a very winnable battle but make no mistake it is a difficult journey. . I firmly believe if you have faith the Good Lord will get you through anything. Good luck to you.

Thank you for the reply.
How soon after your surgery did you start radiation therapy and how many rounds of radiation did you have along with the amount of Gray dose applied and length of time of the actual radiation time with each treatment?
How many total neck lymph were removed? Did you have a difficult time speaking and if so when did it return to normal?
I have this persistent nasal voice that is a challenge for me to speak going on close to 6 weeks now. They say my soft palate needs to heal and the left side to elevate to create a seal to prevent air and fluid from escaping.
Please let me know and may God bless

I started radiation about day 48 after my surgery. I don't remember the exact timeframe but most protocols like for you to start no later than 50 days after surgery. The sooner you start the better your outcome so to speak. Of course they want you to heal from the surgery as much as possible prior to the radiation but start as soon as possible. I had 2 cancerous lymph nodes out of 35 or so. 3cm base of tongue tumor. Your Stage level should help determine your treatment protocol.
Even though I had clear margins there was a chance a few cancer cells remained as the Doctor put it. So he highly suggested radiation. However, The only radiation I was going to get was Proton as much less invasion. He wanted 60Gy (30 Rounds) . Each session lasted 30 minutes bolted to a table inside the "tunnel". They treated 3 places so it took longer. The tumor bed and Both sides of the neck even though one had no lymph node cancer . I wanted much less as I was reading about new De-escalation trails. He stood firm on the 30 rounds so that is what I did. A good Oncology doctor that treats throat cancer for a living knows more than both of us and generally want the best outcome for their patients. Looking back should I have insisted on less rounds ? Not sure. I stand here today with very few side effects, I am cancer free and Alive.
I did have a tough time speaking for 6-9 months. Gradually improved little by little. Hoarse some days, nasal voice some days. Faint voice some days. Some days almost normal voice. Alot depends on mucous build up which gets better over many months. My lymphoma remains in check. I hope I answered your questions. God Speed!