Tonsillectomy & neck lymph node removal at the sometime surgery

Hi @planetsunrise & @chebo1954,

In 2008 I was officially Stage IVB T2N3M0 on left tonsil caused by HPV and one of my 3 infected lymph nodes was over 7cm and that is not a typo. I had 35 rounds of radiation which amounted to 70 Gy and 3 rounds of the platinum-based chemo Cisplatin and had no surgery.
A year later was put on Synthroid 125 mcg as my thyroid was completely damaged from my chemo/radiation treatments. So, I have been on it for 16 yrs. and have my level (TSH) tested with my PCP through a blood draw every year with my annual physical and it is no problem.

Hope that helps.

Helps! roblem, that’s simply Amazing! Wow! If that’s not a message of Hope then I know nothing of hope. Whew, .125mcg of synthroid but that that medicine does basically what your thyroid does for one without a thyroid- Wow! Crap, I hate repeating myself, so sorry. Man I’m on the edge of my seat here. God I hope everyone gets to read this? How miraculous is your journey, your story, your movie and praying for you & a sequel!! Chebo1954

@planetsunrise & @chebo1954

I didn't tell you the next part I was diagnosed with Tongue cancer on my left side of my mouth on March 1, 2024, and had a left partial glossectomy with a radical forearm free flap surgery on April 3, 2024. It also included a modified radical neck dissection. This one was not caused by HPV and was most likely from too much radiation from my first cancer which was on my left tonsil (2008) as it is literally adjacent to it.

I had hesitated with getting the neck dissection too since I had no cancer in any of my lymph nodes on my pet scan, but I went to the top two cancer clinics who specialize in the head & neck cancer in WI, and both had proposed the exact same treatment option, so I felt comfortable. It was really to make sure the lymph nodes and other sections of the neck all had clear margins thus, I avoided any radiation and chemo additional treatments especially since I had both back in 2008 with my tonsil cancer. In addition, I don't know if I would have accepted any more radiation either since it probably was the cause of my tongue cancer.

Time will tell if it was the right decision in getting the neck dissection. I definitely have some Neck Fibrosis, Lymphedema, Swallowing, Speech issues from it so far in which I have to get PT for. I am in constant research mode to help and improve myself (this forum helps) from all my cancer treatments, I am determined to still find time to get to the gym and lift weights and play softball.

Oh 2024 was challenging as I also ended up having Aspiration Pneumonia (took 7 liters of infection out of my lung cavity) which you are more susceptible to with the tongue surgery, 2 Esophageal Dilations, H.Pylori bacterial infection, viral infection, and finished it off with some skin cancer. But I am on my road back to recovery and cancer free for now.

Good luck on your journey and God speed.

Hi there. I take synthroid, 75 mcg. It varies and I have it monitored every 6-12 months. Side effects haven’t been the toughest part but losing an organ pronto does put the body into a tail spin. Aches and pains and mood swings…little by little it seems to regulate.
Hope that helps. Feel free to ask questions.

It sounds like you’ve had a very long journey but it also sounds as if you have a great attitude. Fingers crossed for you! Best of luck going forward. 😊

I had a recent CT scan which showed a spot the size of a small blueberry on tonsil. The ENT and radiologist both believe it is a benign cyst. I’m sticking with that.

why did you have the CT scan? did you have symptoms?

@planetsunrise & @chebo1954

I didn't tell you the next part I was diagnosed with Tongue cancer on my left side of my mouth on March 1, 2024, and had a left partial glossectomy with a radical forearm free flap surgery on April 3, 2024. It also included a modified radical neck dissection. This one was not caused by HPV and was most likely from too much radiation from my first cancer which was on my left tonsil (2008) as it is literally adjacent to it.

I had hesitated with getting the neck dissection too since I had no cancer in any of my lymph nodes on my pet scan, but I went to the top two cancer clinics who specialize in the head & neck cancer in WI, and both had proposed the exact same treatment option, so I felt comfortable. It was really to make sure the lymph nodes and other sections of the neck all had clear margins thus, I avoided any radiation and chemo additional treatments especially since I had both back in 2008 with my tonsil cancer. In addition, I don't know if I would have accepted any more radiation either since it probably was the cause of my tongue cancer.

Time will tell if it was the right decision in getting the neck dissection. I definitely have some Neck Fibrosis, Lymphedema, Swallowing, Speech issues from it so far in which I have to get PT for. I am in constant research mode to help and improve myself (this forum helps) from all my cancer treatments, I am determined to still find time to get to the gym and lift weights and play softball.

Oh 2024 was challenging as I also ended up having Aspiration Pneumonia (took 7 liters of infection out of my lung cavity) which you are more susceptible to with the tongue surgery, 2 Esophageal Dilations, H.Pylori bacterial infection, viral infection, and finished it off with some skin cancer. But I am on my road back to recovery and cancer free for now.

Good luck on your journey and God speed.