Siblings have stomachs REMOVED to prevent cancer after faulty gene killed mum and sister
THREE siblings have had their stomachs removed to prevent cancer after a faulty gene killed their mum and sister.
Tahir Khan, 44, Sophia Ahmed, 39, and Omar Khan, 27, underwent the drastic surgery following extensive tests.
Doctors told them they all carried the same gene mutation known as CDH1 which can cause aggressive stomach cancer.
Their mother, Pearl Khan, 49, died six months after she was diagnosed with stomach cancer in 2002 and their 32-year-old sister Yasmin Khan died six years ago.
Pearl’s four surviving children were screened and tested for the gene at Addenbrooke’s Hospital in Cambridge over the last year.
Three of the siblings, who all live in Walsall, West Mids., came back positive so they each opted to have a full gastrectomy to avoid developing the deadly disease.
Mum-of-five Sophia, who runs a soft play centre with husband Fayyaz, 38, said: “In 2002 mum got very sick with stomach cancer and passed away in August.
“She was originally tested for IBS but was then diagnosed stomach cancer and passed away shortly afterwards.
“In October 2009 my sister was going to the doctors again with IBS but again was eventually diagnosed in December 2010. She had chemotherapy but died in February 2012.
“I read in Yasmin’s notes in hospital that they thought it may be genetic so I did some research and found out the hospital in Cambridge was doing a study with Cancer Research so I contacted them and went from there.
I can still eat and do everything, the only issue is maintaining my weight – but in comparison to having stomach cancer I can’t complain
“Everyone thought I was mad until we had the results come back and when we saw it was three of us out of the four, I knew it was worth it.
“I have nothing but positive things to say about it, I can still eat and do everything, the only issue is maintaining my weight and my vitamin deficiencies but in comparison to having stomach cancer and a few years to live, I can’t complain.
“I even had a baby after the operation, they thought I might be malnourished or the baby would be tiny, but everything was absolutely fine.”
Delivery driver Tahir, whose 21-year-old daughter Farah has also tested positive, said: “At the age where I was diagnosed there was a 90 per cent likelihood that the cancer would develop.
What is a total gastrectomy?
A total gastrectomy is a medical procedure where all of the stomach is surgically removed.
The surgery involves cutting part of the small bowel at the lower end of the duodenum (the shortest part of the small intestine) and extending it straight up to meet the esophagus.
The cut end of the duodenum is then reconnected to the small bowel.
The new construction needs time to heal and seal as leakage where the small bowel has been connected to the esophagus and small intestine can be lethal.
Permanent weight loss of 20 percent of total body weight is typical within the first 3-6 months.
It’s important to try and consume as many calories as possible to minimise rapid weight loss in the first few months following surgery.
“I watched my mum and sister wither away and I really did not want to put the family through that.
“They said I effectively had cancer but because it was contained in my stomach lining and I had all that removed, it eliminated it.
“I could have had only days, weeks, maybe a year maximum left before I would have been diagnosed with terminal cancer.
“There’s no doubt in my mind that having the tests and the procedure done saved my life.
At the age where I was diagnosed there was a 90 per cent likelihood that the cancer would develop
“I used to be 15 stone but now I’m only just over ten.
“I have to graze constantly because my body just can’t get the nutrients it needs otherwise.
“My brother, on the other hand, he still eats like a horse.
“I am worried about my daughter’s future, but I say to her we have all gone through it and are fine now, so whatever happens she’ll be OK.”
Office worker Omar said: “At first after everything with my mom and sister I didn’t want anything to do with hospitals or doctors or anything like that.
“But seeing Sophia go through the procedure and have a baby afterwards, I thought ‘I’ve got no excuse’.
“It was a really hard decision for me but it was the best one I’ve ever made.
“I still can eat whatever I like – burgers, steaks – the only thing I get is exhaustion and cold sweats but I’m still breathing and I’m so thankful for that.”
Any food goes into a small pouch that was made by connecting the oesophagus to the intestine.
Their other sister, Tracy Ismail, 49, came back negative so did not have the surgery.
Dr Marc Tischkowitz, consultant physician in medical genetics at the University of Cambridge, said: “This is a very rare, specific type of stomach cancer.
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“It’s a gene that carriers can have for their lifetime and means that they are at risk of developing cancer any time.
“We do offer total removal of the stomach as a preventative measure.
“It is a dramatic life-changing procedure and of course there is no way of knowing in all cases that the person who carries the gene will 100 per cent have developed cancer in their lifetime.”
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