Hi everyone. My father was just diagnosed with trimodal squamous cancer. There is a mass attached to his tonsils and possibly 1 or 2 lymph nodes affected. Next week is the PET scan. Surgery June 3rd followed by radiation. Everyone is so nervous and doesnt know what to expect. I have heard that the radiation is horrible. My father will lose his tonsils, some bone, teeth, and most likely a few lymph nodes. He is very impatient and stubborn and is having trouble dealing with everything. He is not one to sit around- always active and busy (he's 58). We aren't sure what to expect after the surgery and radiation. Any experiences or advice would be very appreciated.

The radiation is intense but manageable. Its important to follow all that the Drs. suggest you to do. I trie dot just think of it as the magic medicine doing its work to kill off the evil cancer cells that were stray arround my body. My neck was bured after awhile and I felt tired for abotu 2 months afterwards- but Iw as out functioning in the world pretty much the whole time. I had some days where i didn't feel so good. It takes awhiel to recover but it didn't completely wipe me out. I made myself go on walks to museums shopping weekend road trip etc and even golf in the begining before ethe effects got too tough.

I'd say there was a bout 3 weeks when it was at its worst and then I just started to get better and better everyday and that was exciting.

Good luck and I'm sorry that your Dad and family are going through this. Just keep him distracted and busy and well hydrated and nourished and it won't be so bad.

LOVE Kate

Renee,

This is the best possible support group you could imagine for him as most of us have had the exact or close to the exact treatment he will have.

It would be best for him to come on the site and ask his own questions but many let others ask for them like you. It's so easy to get all the info he needs to make informed decisions and to understand what's going to happen.

Tell us more about him and how he was diagnosed.

Hi, Renee, my advise to you is to read as much here as you can so that you are prepared and can reassure your family about what is going on during the next months. His surgery is going to "lay him low" for awhile and it sounds like he may not be the "Best kind of patient". The radiation will not be a picnic either and during that, he will need to follow a real regimen in order to get through it. Are you in the same town? The more you know, the more help you will be. Good luck, keep reading and keep posting. Amy

Hi Renee,

Are they going to include chemo. I think it is very important as it treats the whole body rather than just localized areas like radiation?

Steve

Renee241, How did they do the biopsy on your father? I have a cancer in tonsil and will be having surgery to remove left tonsil next Tuesday for a biopsy and radiation afterwards and then I am not sure yet. I also had a Pet scan, 2 cat scans and looking down my throat. I wish your Dad the best in his care and recovery. How was his cancer detected and what type Doctor is he seeing? I am also reading your post and would like to keep up with his progress. His case sound so much like mine. Bless you all and you will be in my prayers. Angel

Thank you everyone for your kind words and support. I am so sorry I have not been able to update. The past few months have been so draining for all of us that I have not spent much time on the computer.

On June 3rd my father underwent his surgery. It took all in all about 6 hours to complete. He had much removed - 4 lymph nodes, 3 inches of jaw, soft palate, some tongue, tonsils, tumor itself, teeth, soft tissue. He spent from Tuesday until Friday in ICU. Slowly drainage tube and catheters were removed and he was weened from the ventilator on Thursday and Friday. Probably the most difficult things for him was the constant need for suction in his mouth, learning to deal with the trach hole and the feeding tube in his nose. He was discharged on Sunday -less than a full week after his surgery. He was doing very well. He came home where my mom became a nurse overnight. She cared for his feeding tubes and also his trach. The feeding tube was left in for 2 weeks following the surgery. Unfortunately he developed an infection in his trach which caused the stoma to remain unhealed for about 4-5 weeks. He also had some problems with drainage and infection in his incision. This was taken care of with antibiotics and another surgery. July 15th he was operated on again to remove crystallization on the bone and correct the drainage issues. July 18th he had surgery again to insert his PEG tube. We had a scare that there was a possible bone infection in his jaw but after further testing it was diagnosed that everything was fine. We were so thankful. The bone infection would have mean iv antibiotics for at least 1 month - delaying radiation and chemo even longer. So, now we are heading to the home stretch. Chemo and Radiation will begin tomorrow. Chemo will be once a week for 6 weeks and he will have 36 radiation treatments.

I have heard that the radiation is hard and possibly worse to endure than the surgery itself - But everyone has a different experience. Hopefully all will go well and he will be finished in mid- October.

His spirits are good. Around the beginning of July he was not handling things so well. The second surgery took alot out of him and the possibility of a bone infection just made everything worse for him. But, now that he is progressing again and beginning treatments he is much happier and ready to fight this. It has been a rough summer. He only has 2 teeth right now and has a hole in his soft palate which makes it very difficult to eat. He is also numb on his whole right side. He is basically on a soft diet and still drinking the Ensure drinks daily to keep his nutrition up. Right now he is very active - working outside, remodeling a bathroom, etc. He is hoping that the radiation and chemo dont keep him in bed and in too much pain.

To answer your question about his diagnosis - This spring he had what he thought was an ulcer in the back of his mouth. After a week he made an appt with his PCP because it was getting worse and becoming very painful. He also began to endure constant earraches. The PCP felt it might be cancerous so an appt was made with an otolaryngologist. After waiting 3 months to get in to see a doctor (ridiculous!) the cancer was growing rapidly and putting him in constant pain. A biopsy (scrape) was done of the tumor along with PET, dental, MRI, and CAT scans and cancer was diagnosed. Surgery was scheduled for about 3 weeks later.

Thank you again. I will keep checking in. I hope that I may be of help to someone who is going through something similar.

How soon do the side effects from the chemo and radiation begin? Do the burns show right away and does the sickness start immediately from the chemo?

Sending my best to all of you!
Renee

Renee,

Much depends on him and how HIS body reacts to the concurrent Tx. What type of Chemo(s), How frequent the chemo is given and what type of radiation all play a part. Age and overall health also may play a part. Over the last 2 years posting here I have concluded that there is a small percentage that breeze through great. There is also a small percentage that have a horrible horrible time but the majority of us felt the effects about the 3rd to 4th week of radiation and were pretty miserable until the 3rd week post radiation. Lets hope he falls in the first group.