I had my stomach removed to avoid cancer
After 11 members of one family tested positive for a rare gene that causes cancer, they all had their stomachs removed, it emerged last week.
Arlene Puckerin made the difficult decision to have her healthy stomach removed after discovering she carried a gene for a lethal type of gastric cancer.
Arlene, 22, who works in technical services, lives in Nuneaton, Warwickshire with her fiance, Simon Quinn, 29, an internet network administrator. They are getting married next year.
On my 21st birthday I received the most precious and unexpected gift. A letter from my mother, who I've missed so much since she died of cancer when I was 12.
There was a 50-50 chance I would carry the gene.
I was shaking as I looked at the familiar handwriting and opened the envelope she had left for me, along with a bit of money. It was a lovely, chatty letter, telling me how heavy I was when I was born, what my first words were, things we had never talked about. She said she'd always be there to look after me.
My grandmother told me the stomach cancer which killed my mother at 36 was hereditary and that I could carry the faulty gene.
In March 2004, on one of my regular visits to see my Nan, she sat me down and said there was something I needed to know. She said the stomach cancer my mother had was genetic; my grandfather died of it at 56 and my great-grandfather at 25 years old.
There was a 50-50 chance I would carry the gene and, if I did, an 80 per cent chance I would develop the disease. My Nan had known for years but didn't want the news to interfere with my studies.
I was in total shock. I immediately assumed the worst and that I would be next to suffer. I was worried about my boyfriend Simon's reaction. We had been together for only five months.
Even saying the word 'mum' was hard for me.
By the time I opened the letter from my mother, I had decided to be tested. Reading her loving words only reinforced my decision.
I had counselling over several months because it is such a huge, life-changing step to take. The first three or four sessions were very hard because the counsellor asked me about mum and I cried my eyes out.
I'd never talked about her before — even saying the word 'mum' was hard for me. It only took someone to say something like 'You smile just like your mum did' for me to be in floods of tears.
Mum deteriorated very quickly after being diagnosed with cancer and was admitted to hospital, so we went to live with my dad (my parents were divorced). The first time I visited her there I went to hug her and could feel her spine and ribs. But she was still Mum, bubbly and smiling.
Three weeks after our last visit, she died.
When she got more frail and was moved to a hospice the family decided that it would be too upsetting for us to see her. I understood instinctively that Mum didn't want us to remember her like that. Three weeks after our last visit, she died.
I've never regretted not saying a final goodbye because I don't have awful memories of what she must have looked like at the end. In my mind's eye I'm able to see her, laughing and cuddling us, like she was before the cancer.
Gradually, with the encouragement of the counsellor, I let it all out and it felt like a huge weight had been lifted.
I knew it wasn't going to be good news when I went to the hospital for the test result and both the genetic nurse and the counsellor were waiting there for me.
I didn't even have a chance to sit down before they told me the dreadful news. My Nan was with me and she was in tears and blamed herself, but it was hardly her fault. Simon was shocked, too.
One month later, I went to see the surgeons, Mr Gourevitch and Mr Whiting, at the Queen Elizabeth Hospital, Birmingham. They drew a diagram to explain what would happen if I had the operation, a gastrectomy.
My food would be channelled down my oesophagus into the small bowel but there were possible complications. The tubes that would be stapled together after the removal of the stomach could leak and that would mean another operation.
There was a chance I would never be able to eat solid food again. I was told I might have diarrhoea for the rest of my life. Plus there were the usual risks of major surgery.
I thought I was going to die.
There have only been around 50 to 60 gastrectomies done in cases like mine in the UK. They've done seven or eight on healthy people at the Queen Elizabeth.
Mr Whiting explained that I had been found to carry a mutation of the e-cadherin gene which helps hold cells together. When it mutates, it stops the cells adhering and you have a high chance of getting stomach cancer.
It was first discovered in a Maori family in New Zealand and was said to be the curse for selling land to the white man.
Unfortunately, this type of gastric cancer is very difficult to detect. The more usual type occurs on the surface of the stomach and can be seen through an endoscope.
But the type I would be prone to grows between the surface of the stomach and the muscle where it can't be easily picked up. By the time you get some symptoms; indigestion, weight loss, it may have spread to the pancreas and liver.
I decided I was going to have the operation on May 10, 2005. I went in the day before the operation and Simon visited. I was fine until I saw the anaesthetist and all the machines. I'd never had an operation before and thought I was going to die.
The next thing I knew, I was coming round. I felt very sick. My spleen was jammed up against my stomach so the surgeon had to be very careful.
My best memorial to mum is to lead a happy, healthy life
The loss of my spleen would have put me at extra risk of infection. Once my stomach had been removed, the team did what is called a Roux-en-Y reconstruction. They had been left with the end of the gullet, or oesophagus (down which the food passes to the stomach) and the top of the duodenum (the first part of the small intestine).
About 20-30 cms downstream, they divided the small bowel. They took one end up and joined it to the gullet and then plumbed the bit that was left into the side of the bowel 50 cms downstream.
This allows a passage for food and also a way for enzymes from the pancreas, which digest the food, to get to it.
Not that I was thinking about food as I came round. The first night I had diarrhoea and thought that this was the way it would be for the rest of my life. I was on a drip and not allowed to eat for four days.
My first meal was mushroom soup which caused me a lot of discomfort. It was explained to me that I would get full very quickly.
I had to learn how much I could eat without being sick. I lost a stone the first week I was in hospital and was given special cartons of milkshakes and powered food supplement.
Half a piece of toast would fill me up. I had to go back to hospital every week to be weighed and I was losing so much weight they threatened to take me back in.
A month after the operation, the doctors discovered my oesophagus was only two millimetres wide. Scarring had caused the oesophagus to narrow so they stretched it wider. I could eat after that but I needed it stretched three more times.
I've slowly had to learn what I can eat and what to avoid — like bread, porridge and mashed potato.
Strangely, although I didn't have a stomach, I felt as though I was getting a rumbly tummy when I was hungry — probably my brain telling me it was time for dinner.
I went back to work part-time, returning to full-time last November. I used to love going out for meals. Now I have to ask for a very small portion or the waiters think I'm being picky. Eating tires me out and I need to rest for an hour and-a-half after a meal.
Simon's been great. It has been a lot for him to deal with but our relationship has flourished. There are times when he's angry, though. When he sees my scar, which runs from just under the breast bone to the naval, he says: 'Look how you've been butchered.' I point out that at least I'm not now going to get gastric cancer.
We are getting married next March. We'll have a buffet and I've made sure there will be a few things I can pick at. There's no way I could have a sit-down meal.
My brother hasn't been tested yet and he says he'll wait until he's about 21, the age I was. Of course I'm worried about him. I did so well after the operation and didn't suffer any really bad complications.
Not everyone can expect such a good outcome. I talk to my brother a lot about it, all friendly banter, to encourage him. I'm keeping my fingers crossed that he'll test negative.
I intend to lead a normal life. I definitely want to have children. They can test babies in the womb for the gene but I wouldn't have that. By the time my children are older, there may be new methods of screening for this cancer.
I think of my mother a lot. She used to say everything happens for a reason. If she hadn't become ill, I wouldn't have known that I was at such a high risk of getting the disease.
My best memorial to her is to lead a happy and healthy life. |
