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Cancer of the ear canal - coping with the effects of surgery

Patricia is 65 and was diagnosed with squamous cell cancer of the ear canal and temporal bone in 2007. She tells us how she’s coped and passes on some tips.

Patricia Lintott

I never dreamed it could be cancer

In 2006, a troublesome ear infection that I’d had on and off for 40 years flared up. My GP treated it for 6 weeks, but it didn’t clear up. She sent me to the local ENT clinic, where I had a biopsy. In May 2007 I was diagnosed with ear cancer. They said that without surgery I would be dead in a couple of months, because the cancer was spreading quickly. Even then, I only had a 50% chance of survival. I did hesitate about the operation but when my daughter told me she was expecting her first baby, we were determined I would live to see it.

Specialist surgery

Luckily, my nearest cancer centre is one of only 2 in the country with a base skull surgery team doing specialist ear surgery. They have 6 consultant surgeons including a neurologist, an ENT surgeon, a maxillo-facial surgeon, a plastic surgeon and a vascular surgeon. I needed extensive surgery, which only 10 other patients in Sheffield had had. They explained the risks involved to my daughters but I didn’t really want to listen, so I went to get a cup of coffee. I knew I would be facially disfigured, would lose my ear and might not survive.

When we got home, we thought of Simon Weston, the Falklands War survivor, and sent him an email. We got a great response from his website, www.simonweston.com, which helped me to realise that there are others who have endured worse and come through it.

I spent the time before my appointment with the surgeons as if they were my final 6 weeks. I sorted out my funeral, got my affairs in order, said my goodbyes, and visited my son in Spain. I even had a birthday party!

The surgery

The operation took 30 hours. I had my ear, surrounding tissue and part of my jaw removed. The space left was filled with replacement tissue taken from my abdomen, and a skin graft. I had 10 drips and drains. I was in intensive care for 5 weeks, then on the ENT ward for 5 days. My recovery was slightly hampered by my M.E. (myalgic encephalomyelitis) but I really wanted to get back home. M.E (sometimes called chronic fatigue syndrome) is a medical condition which can cause severe fatigue, muscle pain, and mental fogginess which isn't relieved by rest or sleep. 

Side effects

My surgery was experimental, and I had some problems that the surgeons didn’t expect. The whole of the right side of my face dropped and my mouth is now at an angle. I can’t get any dentures to fit my lower jaw. Because nerves were severed, I have paralysis in my face (Bell’s palsy), right neck and shoulder. I have a lot of phantom pain around the site of the ear. On top of this, my abdominal wound burst and, following emergency surgery, I now have a much larger tummy. This affects me almost as much as my face.

I have had some reconstructive surgery which has helped a little. My team in Sheffield are keen to do a lot more, including giving me an artificial ear, but I don’t want this. I just want some surgery to rectify my lip and get my teeth sorted so I can eat properly. I am under the care of a separate plastic surgeon and he has done one operation which helped to lift my face and I am hoping he will sort out my lip.

Because of my age there is a risk that any plastic surgery might not be successful. And to be honest, I have had enough of operations. I just want to get on with my life.

Managing my side effects

One of my first priorities was to be able to eat and drink properly. I had to start with supplement drinks, then purees and soft foods. It took about a year to get my swallowing up to about 80%. After a lot of trial and error, I can now eat most things. One time I fancied some bread, so I got some breadsticks and crumbled these up and that gave me the taste of bread. Another time my daughter cooked roast pork and crackling and so I dipped the crackling in apple sauce and licked it, which gave me the taste of the crackling.

As the whole of my upper body on my right side has been affected, I wear a brace which helps with movement. I also pop a shoulder pad under my bra strap on the right side to balance me out a bit. Buying clothes is difficult but I go out on my electric scooter, see what I might like and then order it on the internet in several sizes to see what fits. I shop online for groceries too and they deliver right to my kitchen!

For the arms of my spectacles, I have worked out a kind of hair band system using elastic with holes in. I can more or less keep them on.

I don’t mind going out and I only wear a hat if it’s very cold or very hot. I am lucky to have thick hair that covers my ear. I know people stare at me, but it doesn’t bother me. I am still here after all.

I do have a carer, partly due to my M.E. and partly because of the paralysis. They help me with washing and dressing and make sure I have enough to eat.

Blessed

I was depressed after my surgery, because of my lip drooping and difficulties eating. But on the whole I feel blessed. My faith is very important to me and helps me through dark times. Through my cancer centre, I have helped others in the same situation. I have lost some friends since my surgery who can’t cope with how I look, but I have made new ones. It’s always better if people say they can’t cope with your scars. I don’t mind if people ask directly about my face - I prefer them to be honest. My grandson just wanted to see the hole where my ear was!

In some ways I feel empowered by my surgery. My disfigurement almost makes it easier for me to talk about my experiences. People say to me that the way I have coped since my surgery has changed their outlook on life. That means the world to me.

I wish there was higher profile for my type of cancer and the facial disfigurement that results from the treatment. You can cover up the loss of a breast. You can’t cover up your face.

Factfile

  • Squamous cell cancer of the ear canal is very rare. The cancer starts in the skin cells inside the ear
  • Squamous cell cancers will often spread. The cancer can spread to the temporal bone, local lymph nodes, the parotid (salivary) gland, and the carotid artery
  • A squamous cell ear cancer is usually treated with surgery. Sometimes radiotherapy and chemotherapy are used too
  • There are 2 UK charities who support people with facial disfigurement - Changing Faces and Let’s Face It

More information

On CancerHelp UK there is detailed information about

Sharing your story

The 'Your tips and stories' section of CancerHelp UK provides tips and support for people currently coping with cancer and treatment. You can use the Your tips and stories contribution form to tell us how you coped, so that other people with cancer, or their families, can gain help and support from your stories.

Some people help Cancer Research UK by sharing their stories in other ways – talking to the media, appearing in a Cancer Research UK advert, speaking to volunteers or being featured on our website. Read more about sharing your story

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Updated: 7 April 2010