My husband was diagnosed with cancer of the tonsils last summer with a T4 tumor. He went through chemo and radiation and all check ups were coming in good. Until yesterday.....there is some swelling in the area. The ENT doctor cannot see it but only feel it and wants to see him in a month. We got this news yesterday the same day that we were starting our vacation. He told us to enjoy our vacation but can't help to worry. Any ideas on this swelling?

Did your husband not have a tonsillectomy? Is the swelling in the tonsil? I'm anxious to hear....

Nicki

I have a little swelling at the original tumor site from time to time and also under the chin on the opposite side. There is also some texturing due to scar tissue. It's been just allergies or garden variety stuff but the big c recurrence thing always runs through my mind. We are still subject to all of the non cancer throat issues also (and probably acutely aware of them now).

I had the same treatment and the radiation fried the tonsils to oblivion along with the uvula and other parts of my anatomy. Tonsillectomy was never even suggested by my head & neck surgeon who is my primary care doctor at this point or the rest of my medical team. I aksed them about it and they felt it was not necessary.

I really don't know the state of my husband's tonsils - it was never really mentioned - he did not have a tonsilectomy. It is a good question for me to ask. The tumor covered the soft and hard palate and I beleive it is this general area where the swelling is. Garry - your response is encouraging. How long has it been since your diagonse and how often do you get this swelling?

I had a tonsillectomy and my pharnyx where my tonsil(right)was, and the scar that it left behind swell and hurt on and off. I am 6 months post. In fact it is swollen and hurting a little now.

My doctor at U Of C told me that it is normal as we are still subject to toxins and viruses in every breath we take. We also took quite a beating with the radiation. It still scares the hell out of me. I have quite a bit of lymphodemia or swelling under my chin from lyphadic fluid build up. When I wake in the morning it looks like I am storing walnuts. I have been given a device that makes me look like Jacob Marley. It is suppose to relieve that so the fluid finds a new pathway but it doesnt. I also do massage on it. That does help quite a bit. And yes I feel some texturing in my neck from scaring as well.

I have learned to live from scan to scan.
I used to go to the doctor if I had the slightest twinge but as we all know if its back its back. You cant change that. Sad but true.

If your last scan was clear then your good until the next one. Thats the way it has to be. Unless you have a lot of pain or trouble breathing etc of course.

Swelling DOES NOT mean the cancer is back.

Your (his) doctor should have perscibed a antibiotic to see if it was in fact an infection.

Go, live, have a great vacation, believe that you (he) are well. Enjoy every second.

Robert Hamilton

My original Dx was 10/02. The swelling comes and goes. I can't really link it to a specific event. It made me really nervous at first and the H&N surgeon doesn't have any concerns. The main thing is that is does come and go - If I had swelling that was constant, I would get it checked. Like Robert said, things are pretty screwed up there from the Tx. The main radiated area has always felt a little harder to the touch than the opposite side. I'm examined every 2 months anyway.

Enjoy your vacation - don't let this mess that up. Something as innocuous as post nasal drip could cause this.

Kennock, As noted in some of the above, swelling can come from lots of different things, not just cancer. I had my tonsils out and rad/chemo and radical neck dissection and have swelling and pain in the throat most all of the time. I think its just the "new normal" others have mentioned. Don't let this mess up your vacation. If there is something to worry about, the next checkup in a month will be soon enough. Enjoy! Will pray for you both.

Thanks so much to everyone for the help. It has been an enormous relief to me to read the replys. My husband can't bring himself to read the notes but I tell him what they say and we are encouraged. We aren't talking about the swelling or checking evey minute anymore and will live life to the fullest. We are leaving in a few days with all of our the kids to take our oldest to her first day of university!
Debbie

Debbie,

We all get some discomfort in the treatment area every so often. You husbamd should not have a problem reading comforting replies, they are helpful and may ease the stress he is currently experiencing. My last perceived reoccurrence in at the original location, left tonsil, was food caught under my gum. It was the worst pain and swelling I have had in a year and it lasted a week My dentist found it, after MSKCC put me on magic mouthwash! At least Sloan knew it was not cancer. None of us can tell you what it is or is not, but we have all been there..Show him the posts before you go away!

Glenn

I had SCC of the right tonsil, they gave me a tonsilectomy and a radical neck disection. I am curious as to why they didn't do the same for him. I wasn't given radiation at that time, dr saying he would save that for recurrance. 2 years later I have that recurrance in the parotid gland. Now I will get that radiation. I haven't had any swelling were the tonsil was since the surgery.

When the diagnose was made we were in such shock and now in retrospect and reading how all of you are so informed I realize I need to know more. At first the report sated that it was SCC of the pharynx- on both the soft and hard palate - and later we were told the tonsils - T4N0M0. He did not have surgery to remove the tumor as it would of been very extensive surgery without knowing if they could get all of it. Therefore he had 35 chemo/radiation treatments which has left him without working salivary glands - no saliva - and he is pretty much on a soft food diet. We were told that it was a very agressive treatment.

My cancer was very similar - right tonsil, stage III/IV, T3N0M0. They told me the same thing -that the surgery would be too extensive and result in very bad quality of life issues, besides they would have to radiate everything anyway. I went with IMRT and Cisplatin and it's all working out ok so far. I have over 50% of my salivary function back and am cancer free at 18 months post Tx. Tonsil cancer is in the oropharnyx area. You mentioned tonsils - did he have cancer in both?

I am curious to hear that doctor will save radiation for recurrence. I would think that radiation should be considered in the first round treatment to avoid recurrence. Like Gary, I didn't have surgery to remove my tumors. In fact my stage of cancer was more advanced than Gary's as it was a T2N3M0 classified as stage 4b. My team of doctors did not suggest surgery since it would involve a very extensive area and would definitely affect my voice which was very important to me since I am a school teacher. I had 48 rounds of radiation (at full dose)plus 4 rounds of cisplatin concurrently. I lost all my saliva since I was not given IMRT. Like some of the patients here, I was rather ignorant about my illness and in fact I didn't know what I should ask and what my rights were. I only put my life in my doctors' hands. And very luckily, I am still alive with almost everything back to normal except my very dry mouth and loss of sweet taste. A price to give.

Karen.

I guess teh saved the radiation because when I first was dxed the lymph nodes just under my chin came back positive for SCC. They couldn't find the primary at first. Decided to do a tonsilectomy and then thats when they found it. It was not extensive and seemed confined to the tonsil only. They believed that they got it all because of good margins. After the radical neck disection, there were 3 of 33 lymph nodes positive for SCC. Now you all have me wondering that maybe they should have radiated me then. I remember the Dr saying I would only have one shot with radiaiton and he felt at that time to wait since the primary was confined to the tonsil and he believed he got it all. I quess with this disease nothing is for certain nor is there any real set in stone treatment that quarentees success.

I was having a philosphical discussion with my Head & Neck surgeon last week at my 1 1/2 year check up about why some have recurrence and some don't and he bluntly stated that it's more luck involved than anything else.

Being a Christian however, I don't believe in the concept of luck but I can understand the randomness of the outcome of this dreadful disease. You can bet that there are multidimensional issues and, more than likely, a combination of them.

in a similar philosophical discussion with my sister's oncologist, he kept stressing that in his experience recurrence is more likely if the person is under a lot of emotional and physical stress, and that response to treatment is better when the person keeps a positive attitude. this seems common sense to me though i'm sure stress and anxiety are not the only factors involved. the pitfall of this view, of course, is that it places more burden on the persons with cancer so that somehow they could conceive themselves being responsible if they have a recurrence!

gita