Family curse

13 July 2011Last updated at 19:31 ET Josie Bellerby

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Josie has to decide whether she wants to know if she is likely to get breast cancer

A teenage girl whose family has “been cursed” by hereditary breast cancer for generations faces a dilemma – should she be tested for a mutated gene which could cause the disease?

“It’s not so much that I’m scared to get the test, or I’m scared for the operation,” stated Josie Bellerby, an 18-year old from York.

“It’s a decision. If you go and get the test done you can never take it back, so it’s just whether or not you want to risk feeling like part of your body might kill you.”

Josie has two sisters, Lucy and Emma, and the possibility that any of their daughters has a faulty gene has been difficult for parents Julia and Jules.

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I could not bear to lose a daughter to cancer”

End QuoteJulia BellerbyJosie’s mom

Julia said: “I lost my mum to cancer, I could not bear to lose a daughter to cancer. That just doesn’t feel like something I could cope with at all.

“It just makes me sad because it is all becoming kind of real now. This thing that I so dreaded when I went through it myself, that you’d all have to face it and here it is, it is actually happening.”

“They shouldn’t have to be thinking of things like breast cancer, at their age,” stated Jules.

Josie wants to go drama college next year, but fears that if she has the test, the results might affect her plans.

“I never thought about the future. The furthest in the future I thought about was when is my next audition or, when are my exams coming up?

“I feel like I am possibly being forced to grow up a bit faster because of this thing.

“I think it shocked our family quite a lot because we always just thought ‘Oh, do you know what? We do not need to think about this,’ but actually you do and it’s happening sooner than we granted for.”

If someone carries the mutated genes BRCA1 or BRCA2, it can mean they have an up to 80% chance of developing breast cancer.

For each individual there is a 50/50 chance of carrying the gene, so for Josie and her two sisters, getting the same result is unlikely.

Her mom Julia worried that the other sisters’ test results could have a knock-on effect. “It’s nearly like, it’s like Russian roulette, so if Lucy and Emma do not have it then you might think ‘Oh God it is bound to be me’.”

But Josie stated she was prepared for that game of chance. “The chances of three girls possibly carrying a gene and for then none of them to have it just seems like illogical.

“Me and my sisters are so close now, it scares me sometimes. (But) the results of the test may make us either drift… make two drift apart or two come close… which affects that bond,” she said.

But at 23, Josie’s huge sister, Lucy, decided to have the test.

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Josie: My Cancer Curse is on Thursday 14 July at 2100 BST on BBC Three

Lucy said: “I’m definitely not ready 100%, I do not think I would ever be 100% ready… but I think I’m at a place where I can cope with it.”

But Josie feared her own decision could be changed by her sister’s results.

“If I do not handle it very well with Lucy, then how am I going to handle it when it’s actually me that is going through it?” she said.

The middle sister, Emma initially decided not to take the genetic test. She started the process but felt she was too young. But she has since reconsidered.

Receiving test results positive for the mutated gene often starts a process of decision-making about other things – like whether to have preventative surgery or partake in drug trials.

Mother Julia had known straight away what she would do. “I knew long before I had the test that if I had the gene, I would have surgery. And my instant reaction was just get rid of them (my breasts), they can kill me, let’s get rid of them.”

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If it’s not a good result and I have BRCA, then, I’ll cope with it because you just do just suck it up, get the news, and deal with it”

Professor Gareth Evans, from the Genesis Prevention Centre stated the clinic was developing new treatments to take away BRCA1-related risk.

We are starting to actually treat people with Tamoxifen,” he said. “So that is an old drug, that is nothing new, but what is new is that this is being offered as a preventative.

“Tamoxifen has been shown, with five years treatment, to reduce the risk by 40%.”

And a group of drugs called “Parp” inhibitors are also being trialled at the moment.

“A Parp inhibitor is a drug that specifically targets cells which have lost the BRCA1 gene. We can actually kill the cells before they become cancerous. Now, if the drugs work perfectly it will normalise your risk of getting breast cancer, because it will effectively take away the BRCA1.”

These options helped Josie decide that she wanted to take the test.

“If it’s not a good result and I have BRCA, then, I’ll cope with it because you just do suck it up, get the news, and deal with it.

“It doesn’t need to be something that rules my life. It doesn’t need to be something that I think about every day, I could still be me.

“I can still have a laugh and enjoy being young, but just be a tiny bit more responsible, and just be a tiny bit more aware.”

Josie: My Cancer Curse is on Thursday 14 July at 2100 BST on BBC Three or watch again on BBC iPlayer.

More source:

The Family Curse | Free Music, Tour Dates, Photos, Videos
Family Curse | Facebook
Family Curse
Signs Of A Generational Curse In Your Family! « Penny Maxwell

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