Greetings! I learned of this site from SPOHNC and am so happy you are here. I was diagnosed with squamous cell carcinoma of the right tonsil on New Year's Eve. The cancer had replaced the entire tonsillar region. On January 20 I had, to quote the operative report, a "composite resection of right oropharynx and base of tongue" and "modified radical neck dissection." Two of 42 lymph nodes were cancerous. I also had a "microvascular free flap reconstruction" where tissue and artery from my left forearm were placed at the tonsil region. After a re-do on January 21 the flap is healing nicely. For those of you not familiar with this surgery, I also had a "mandibulotomy" in which my lower jaw was split open in order to access the tonsil region and I now have a "Lorenz titanium bar" holding my mandible in place! I have a PEG tube and will continue with the PEG through my radiation therapy which I hope to begin by March 7. Radiation will be to both sides of my neck from ear to clavicle.

I am waiting for results of a PET scan and will meet a Medical Oncologist tomorrow Feb. 22 to talk about chemotherapy.

I'm recovering well from my surgery but still have a pocket of drainage at my neck that my Head & Neck Surgeon drains three times a week. Have any readers who are familiar with this surgery had a similar experience? Dr. is not sure why he can't seem to easily access the "right pocket."

I look forward to participating in the forum. Thank you and blessings to you all.

Welcome Zenda
Sorry you had to find us, but, rest assured there will not be many questions you can ask that some of our members cannot answer for you.
You will, I am sure, be hearing from some of them shortly to help you with your query.
In the meantime ..Welcome.

Marica

Zenda, welcome to the site. Sorry you had need to find us. I had a tumor in my right tonsil as well. My treatment plan was to use cisplatin chemo and radiation to shrink the tumor, this after a tonsilectomy, then a modified radical neck dissection to remove the infected lymph nodes. I had 35 lymph nodules removed and there was no evidence of any cancer surviving the rad/chemo treatments. They were clear of cancer. After my neck dissection, I had two drain tubes that were left in for 3 days for one and 7 days for the other. They had to reduce the amount of drainage fluid to a certain level (which I don't remember how much, I'm sure your doctor could tell you) before they would allow the tubes to be removed. Since then, my only issue has been a loss of strength in the affected shoulder due to the 8 oz. or so of tissue removed to get clear margins. Hope this helps.

Hi Zenda,

We are at similar points in our treatment. I had a tonsillectomy last November followed by modified neck disscetion in January. I start combined chemo/radiotherapy Monday 28th Feb.

I had 2 drain tubes which were in for about 4 days. I still have swelling on the neck and a feeling that someone has a grip on my neck/shoulder. I am told this is expected and will only get worse with radiotherapy.

Good Luck

Chris

Chris,
I had and still have that feeling of someone gripping my neck and shoulder. I finished radiation 19 months ago. I remember about 2 weeks after surgery was when I first noticed it, when I started moving around more. I got very depressed over it. After radiation it really wasn't that much worse and now I really only notice it alot first thing in the morning. It is tight and I wish it could feel the same way it used to, but you really will adjust to it just fine.
Take care both of you,
Minnie

Thank you Marica, Kirk, Chris and Minnie for your welcomes. The good news is my neck swelling is continuing to drain, if slowly. I too had the J-P drains in the hospital. The swelling is just a "blip" along the way. Lots of stiffness in my neck and shoulder too and I do daily exercises including the fingers up the wall crawl to keep my mobility.

Chris: Good luck to you with your radiation/chemo. My simulation is March 1 so should start soon thereafter. You're in my prayers.

Zenda,

My daughter had SCC of the base of the tongue. Her surgery was quite similar to yours. She had the mandibulotomy, neck dissection and part of her tongue removed. She also had a flap, but it wasn't a free flap. Heather had drainage similar to yours from a fistula that had developed several weeks after her surgery. He wasn't 100% positive, but her surgeon felt that she must have developed a leak in the floor of her mouth where the sutures were. He felt that saliva was leaking through the break in the suture line, which caused the continual drainage.

In Heather's case, she had a recurrence, so the fistula never healed. I do remember another member here who had a similar circumstance. When she completed treatment, her fistula healed. I don't remember if she had surgery to correct it or if it healed on its own, but I do remember that all was well in the end. At one point, she had stated that she had a small opening under her chin during the entire radiation treatment. If you want to do a search in the forum archives, her member name was nettypoho and the posts would have been made sometime during November 2002. Hope this helps.

Rosie

Rosie, I am so sorry that you lost your daughter. I'm a Mom and Grandma too. Thank you for taking the time to get in touch with me. Your information was helpful.