Tonsillectomy & neck lymph node removal at the sometime surgery

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 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 had the same issues with my voice. Air escaping and sounding like I had a clothes pin on my nose. I’m two years out and my friends tell me that my voice is back to normal. Doesn’t seem normal to me as I have difficulty regulating air when I speak long sentences
I had a tonsillectomy and 6 biopsies and then back to surgeon for lymphnode dissection (18 removed with two cancerous) and TORS surgery to remove residual. The voice damage came from the robotics surgery behind my removed right tonsil. Then to 20 rounds of radiation and 2 chemo. My weight is back to normal and energy is recovered. It will seem like forever but your voice will be fine!!!

Has your psoriasis ever flared up or caused problems during your treatments?
Thanks - Darlene

Hello @tomczyfe. You have had good responses from others who have had cancer similar to yours. My head and neck cancer was ear origin so I'm not much help for you, but I did have select neck dissection at the same time as my temporal bone resection to remove the tumor. Radiation with chemo started 5 weeks later. I just wanted to add that you might benefit from a speech therapist who can provide exercises to possibly speed up your voice recovery. And also consider a mental health therapist to help you resolve your feelings about your surgery and the loss of sleep worrying. Large cancer centers or their associated assistance groups could provide you with a contact. My husband has dealt with multiple complications from his bladder removal due to bladder cancer and the first of those was because we listened to the doctor and chose one route over the other. Many surgeries and procedures later and the acceptance of his decision, the important fact is freedom from cancer. We can deal with all the other issues as they arise if the cancer is gone.
Our new normal is often not easy to live with but we are living and we must make the best of it. Set yourself some short term goals and celebrate as you reach them. One day 15-20 years from now you too may be giving advice to new patients. Hang in there and know it will get easier.

Thank you for sharing

Did your husband have sleep or anxiety issues or was he able to deal with head on?

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,
I had a modified radical neck dissection years ago. You can read my story somewhere on here. At the time the malignant spot was in my thyroid and all thru left side of neck, thus complete thyroid removal as well. I have a 6 “ scar from back of ear to middle of throat but I am grateful to my surgeon (Canadian from the U of A) to be alive and well. Although this surgery has given me a permanent disability I consider myself fortunate that it was not worse. Life goes on and you too will find joy and peace in all of it once your healing progresses. After all, you are very early in the game. Be well and stop and smell the roses where you can. 😊