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Tonsillectomy & neck lymph node removal at the sometime surgery
Head & Neck Cancer | Last Active: Aug 13 7:59am | Replies (38)Comment receiving replies
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.
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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