Hi,

I am Debbie, age 43, from the UK. I am married (11 years) with two sons age 10 and 6. I have never smoked, and only occasionally drink, but was diagnosed with cancer of the tongue in April 2003. I had an innocuos ulcer which wouldn't heal, and was picked up at a routine dental check - thank goodness! It turned out to be a Stage 2 squamous cell carcinoma. I had never heard of oral cancer.

I had an operation to remove 45% of my tongue and also a radical neck dissection (left side). They reconstructed my tongue from my left forearm. I recovered very well from surgery and felt TOTALLY positive that I would beat this.

The removed lymph nodes were tested and one was shown to have cancer cells. Because of my "young" age they advised radiotherapy - 33 sessions, maximum dose, as a "safety net".

Radiotherapy was a complete nightmare, and I was not prepared at all for the significant problems it caused. I got sever mucositis at end of week 1, and was admitted to hospital in wek 2 as I got pnuemonia. The rest of the treatment went by very slowly, and was agonising both physically and mentally. I found it very hard to see it through - but did so with support from my husband, mum, and lots of close frinds - and last but not least, my two little boys, who so desperately wanted me to "get better".

For about a month after the last session things got worse, and i thought I was going to die at one point, the pain and the bleeding was so bad. But of course I didn't!

Since then check -ups have been positive, and I have been told that I have a 90% chance of survival because it was caught and treated early.

So, why am I anxious and depressed? I try hard to think positively, and live with the serenity prayer every day. I try to live one day at a time and not worry about what might be.........

BUT, now I have a problem with my jaw and teeth. My lower jaw had to be cut in order for the surgeons to gain access to mymouth, and it was pinned back together. Now I find that my lower/middle 4 teeth are loose and wobbly. This has been the case for about 2 months now, but this week I am in pain with it.

THIS WORRIES ME!!!!!

Today, for the first time in ages, I have taken pain relief. The left side of my face is tender around the cheeckbone, and my chin is sore to the touch. I also have pain just in front of my left ear. I am very worried that the cancer has spread.

I am having an x-ray this week to look at my jawbone to see if it is healing well, but I don't think that would show up a tumour. I plan to call the hospital on Monday to tell them about this pain and swelling, but hoped that someone here would be able to share their experiences with me, or tell me that this is all "normal" and nothing to worry about. If I am honest, this is what I am hoping for from you.

I first found this site just after diagnosis, and found it to be the most helpful of them all. Lots of others deal with clinical information, but this is by far the best because real people are sharing their souls. I can't tell you how helpful that is.

If anyone here can help me to get through the weekend I would be very grateful. My usually understanding and supportive husband has gone quiet. I think he too is thinking "here we go again" - though he doesn't say it.

Please tell me that this is a normal side effect from treatment!!

Debbie
xxxxxx

Every person is different, but my husband just has gone through kind of the same thing. First of all we thought it was more cancer but it wasnt. His jaw has not healed back together. This is called non union of the jaw bone. When he gets pain and swelling all the way to his ear, it means (in his case) that he has an infection. He then takes strong antibiotics, the swelling and pain then go away. The Doc says since the bone is not together the infection comes from bactria in the mouth. The infection has not spread to his bone because we know when it comes and the doc are on top of it. Hope this helps, I dont know if it is the same thing but, my husband teeth also move as does his jaw. Any ? just ask.

Cheryl

Thanks so much for replying Cheryl. I know that everyone is different, and I will get this checked out, but at least I now know that it could be something else - and not cancer! They don't tell you about all of the possible problems the treatment might cause do they? I suppose if they did you would never have any treatment.

Anyway, I will let you know what happens.

Thanks again,
Debbie

Hi Debbie,

You and I have a similar life story, I have 3 sons and I was 40 when diagnosed (I am 43 now). I had tonsil cancer and 3 nodes positive with radiation. I didn't have the work on my jaw as you have. I do have jaw pain and some swelling from time to time in exactly the same areas that you describe. If I massage these areas too vigorously they become more sore. My guess is that the loose teeth are also a perfectly normal side effect of the surgery. (as long as they aren't too loose) I am not a doctor, but I agree with cheryl that you might have an infection. Yes you need to follow up with your doctors. If it is an infection it can get into the bone and cause more serious problems.

Most all of us have had to deal with the post treatment mental game of "do I have it or not" or am I cured or not. Of course it could be a return of cancer but I don't think what you are describing falls outside the normal long term side effects. NO you shouldn't WORRY about a return of the cancer. Worry will not help in any way. Be diligent in following up with the doctors don't let them take a wait and see attitude.

Back to your anxiety and depression. Both are absolutely normal responses to having your life shaken up by all this. I can tell you that the anxiety will get better over time and by working on "mind control" You can train yourself to have less effects from anxiety. Talking about it helps as well as meditiation, or other distractions.

As for depression, I like to think there are two kinds of depression. One you can work your way out of and the other needs some professional help and medications to restore the chemistry in the brain. Crying and sad feelings about the future (or potential lack of it) are common and in my view not necessarily a sign of more serious depression. These things also fade away as more time goes by. Right now you are in the period of time, post treatment, when I had a lot of difficulty. Just knowing that others have gone through this will help (it sure did for me) and I didn't find this OCF group of people till I was almost 2 years out of treatment.

Take care and stay in touch.

Thanks Mark.

Your reply has reassured me a lot. I think that sometimes I expect too much of myself, and think that things should be back to "normal" already - when of course there is a different kind of normal since the cancer.Nothing is ever quite the same is it?

I am working through the emotional stuff, and am taking anti-depressants to help me. As you say, this is a very difficult time. Dealing with the surgery and radiotherapy kept me active and focused on the treatment. It's only when the treatment is over that you start to think about other issues.

I spoke to my cancer nurse today, and now have an appointment to see my consultant tomorrow first thing. At least having someone look at me will reassure me. I spent the whole day in bed today. I hate that - losing a day when I could be living life to the full. But the pain is so debilitating, and sometimes it is best to take medication and sleep.

I'm so glad that you are doing well so long after treatment. It gives me hope for the future.

I will let you know what the doc says.

Thanks again,

Debbie

Debbie, don't ever blame yourself on lying in bed all day without achieving anything. Don't ever give yourself pressure that you must live every day to the full. It is not realistic even for a healthy person. You are already very lucky to realise that the time post treatment is more difficult than the time during treatment and seek help from anti-depressants to release stress and anxiety. I was not on the alert and got myself seriously depressed 2 months post treatment. I was admitted to hospital for almost a month to cure my depression and that period was the darkest one in my past life. Just want to assure you that things can really turn better and you will soon reach the end of the tunnel. Be patient.

Karen stage 4 tonsil cancer diagnosed in 9/01.

Went to see my consultant yesterday. Had an x-ray which showed that one of my teeth is "failing" from inside the jaw. I have been given antibiotics and go back next week to see what has happened. The severe pain I am getting is because of the tooth apparently. It was very bad again today.

But, at least it is not cancer!

I have spent today sleeping again, and still feel very drained and tired. I have decided that it IS okay to sleep the day away - when I need to. I'm sure that there will be future days when things are brighter and I feel better. On those days I will live my life to the full........

In the meantime I plan on relaxing and taking it easy until I sort out this pain. One day at a time.......

Thanks to everyone for their help and support.

hey we spend 1/3 of our life sleeping so living life to the fullest has to include sleep! (1/3 full)

So glad you have a non-"C" problem to put up with, take them in stride!