← Return to Tonsillectomy & neck lymph node removal at the sometime surgery

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Profile picture for fetomczyk@gmail.com @tomczyfe

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

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Replies to "Thank you for the response, information & inspiration. Dr told me only way to remove both..."

Yesterday I posted my experience with tonsil cancer on this forum. In my case surgery was not presented as an option due to required healing before radiation and chemo. I found out then the need to question doctors recommendations and do my own research. I had a 2nd opinion from another ENT along the way. Hope your healing continues in a positive way and life returns to a more normal existence.

Hi Fred,

For what it is worth, you are not alone in how you feel. My wife and I have similar discussions as I adjust to my "new normal."

I had 87 lymph nodes removed about 2 years ago. When I look back at my recovery journey, I ignored the lymphedema and inflammation signs that I wish I had paid more attention to. I am currently working hard to manage my lymphedema with compression and other treatments, as it has been affecting my quality of life and ability to eat. Feel free to DM if you have any questions.

Eric

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

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. 😊