Apr 02, 2013 - 10:09 am
Hi, everyone! Thanks for all your information and advice after I was first diagnosed. Last Friday I received trans-oral robotic surgery at the Mayo Clinic. They removed lymph nodes on both sides of my neck, did biopsies of the tongue, tonsils and adenoids, and removed my right tonsil and part of my left all for the purpose of finding for the primary site of the cancer by testing the tissue that was removed. My squamous cell cancer had showed up in my lymph nodes through a PET scan and needle biopsy but they could not find the original source, which is why they recommended surgery. The first night after surgery was awful. I did not sleep at all because of painful swallowing and a very dry mouth. Things got better after that and I was discharged Monday afternoon after 3 nights in the hospital.
The news immediately after the surgery was good and bad. The good news is the surgery went as planned and there were no complications and the lymph nodes were encapsulated so that the cancer had not spread to surrounding tissues. The bad news is none of the initial pathology reports obtained during the surgery found the primary site of the cancer. Fortunately, after further pathology work over the weekend on the biopsy samples, the pathologist reported yesterday that they had found a small amount of cancer in the back part of my tongue. This is really great news because they can tailor the radiology treatments better because of this information and, therefore, the long-term complications are likely to be less severe and my recovery time a little shorter.
Lessons learned for others who may be getting oral surgery and tonsils removed:
1. Ask for a misting mask to dampen the throat. I started using one in the middle of the first night and it diminished the discomfort a bit. It was still awful, but you will get through it and feel better, so you just have to endure the hard part at first.
2. Get up and start walking as soon as you can after surgery. All the doctors and nurses recommended this and said it would speed my recovery and make me feel better. Sometimes when I just felt like sleeping or dozing, I would remember this and get up a make a lap around the hallways. This made me more alert and I felt better than when I went longer periods of time without walking around. Someone will need to walk with you at first to make sure you don't fall. Later you can use the IV stand for support since you will have an IV in most of the time in the hospital.
3. A feeding tube was place during my surgery (a tube down my nose into my stomach.) Even though it was a little annoying, I highly recommend it. This makes it possible to continue to get good nutrition at a time when it is very hard to take in food through the mouth. Even liquids are hard to swallow. They were also able to give me some of my pain medicines by grinding them up and giving them through the feeding tube instead of taking capsules by mouth, which would have been hard.
4. I learned that it is easier to swallow thicker liquids and soft foods than water and other thin liquids. I learned this at the end of my second day. I wish I had known this earlier. I was trying to drink plenty of water and I could only take little sips and it usually took three swallows to get the sip down. I found that applesauce, yogurt, a milkshake and a frappucino from Starbucks all went down easier than water. Tasted better too!
My next steps are to recover for a few weeks and then get fitted for the mask and start radiation therapy. My Mayo Clinic surgeon recommends doing radiation only, without adding chemotherapy. I am going to go to a different cancer center for radiation because the Mayo Clinic is too far for me to drive every day for my treatments, so I will see what my oncology radiologist recommends.
That's my update for now. Now I feel like I can start contributing my own experience and advice to the discussion board. to pay back all of the great support and information I received from all of you when I was a newbie.