“I remember the appointment so vividly” – carrying the BRCA1 gene

Rebecca Hull

Rebecca Hull, 41, has had a preventative double mastectomy after discovering that she carries a faulty copy of the BRCA1 gene. She works for Cancer Research UK.

Seeing Angelina Jolie talking in the media so prominently this week does have a huge impact on people like me.

I think her announcement will make it easier for me to talk about my experiences, and I feel that I don’t have to justify my decision to people as much – it makes it more acceptable.

I grew up knowing my mum’s mum died in her late 40s of ovarian cancer and I was aware that mum had cousins who died from breast cancer in their 30s.

Then, in the early 1980s, when she was 38, mum had had breast cancer – and a mastectomy.

In 2006, she felt unwell again and, after initially being repeatedly misdiagnosed with IBS and then a chest infection, she was found to have ovarian cancer.

After some confusion, she was finally told she had advanced (stage 4) cancer, and she was given intensive treatment including carboplatin chemotherapy, surgery – and then more chemotherapy. She responded well initially, but the cancer returned, with shadows on the liver and lung.

She had more chemotherapy but the cancer returned again in 2008 – mum knew there was no beating it this time. She was 63 then and was put onto palliative treatment.

Having the gene test

At about the same time, I had been to the doctor for antenatal checks and, in passing, mentioned my family history. My GP took notice and referred me to the clinical genetics department at Guys Hospital in London. In early 2009 we discovered mum had a BRCA 1 gene mutation, so I had a blood test at Guy’s to find out whether I had a genetic risk of the disease too.

I was called back in April to be told I had inherited the BRCA1 mutation and I had a very high chance of developing cancer.  I remember that appointment so vividly, it was a pivotal moment and my life changed forever.

The hospital team at Guy’s were amazing – and I had a multidisciplinary team of specialists who were able to give me advice and support.

Over that summer, I had to tell my mum’s brother, and they had to think about taking the tests too. As it turned out, my uncle tested negative, so I’m the only one currently affected in the family, although I have two daughters and we currently don’t know their status. It was a huge relief that none of my cousins inherited the gene, but it has become a bit of an elephant in the room now that I am the only one.

While all this was happening, I was working and caring for mum, who was deteriorating. She died in October. It was a terrible time.

Rebecca Hull

Rebecca with her children

Having two children, and having seen family members die from breast cancer at the age I was, I decided that I had to have the surgery and, on Valentine’s Day 2010, I had a bilateral mastectomy with reconstruction at the same time.

It was an 11-hour operation and I had to go into intensive care afterwards. I ended up spending 10 days in hospital.

I was off work for three months and it has had a huge impact on my life.  And although the reconstruction didn’t quite go to plan, and I am still having revision surgery to correct this, I have no regrets.

I feel that I have two big challenges ahead of me still:

First, I have to tackle my ovarian cancer risk. This will involve more surgery, as there’s currently no screening programme or understanding as to whether screening would be effective.  In some ways, I am more reticent about this surgery as it comes with significant side-effects as a result of the early menopause that removal of the ovaries brings about.

But the second and probably biggest challenge involves my two daughters. They are both under 10 and there’s a 50/50 chance they will have inherited the BRCA gene. I must plan for how this could impact their lives, so they grow up aware but not scared.

It is going to be difficult but I’m hoping research will improve the situation as they grow up.

Research in the last 30 years has given us so much knowledge, and I hope that this progress will continue so that their future options will be better.

And I’m especially proud to work for an organisation like Cancer Research UK that has such a great track record of research into breast cancer genetics and prevention.

After all, Cancer Research UK scientists helped pinpoint the BRCA1 gene, and this has led to some huge advances in understanding breast cancers. I know that this work was too late for my mum, but it wasn’t too late for me. And I hope they will continue to make progress that will have a huge impact for my daughters too.

It can be hard at times knowing that this defect has caused so much loss in my life, and could create more havoc. But I do feel immensely grateful that I‘ve had options to manage my risk of developing cancer, and I am undoubtedly in a better position than my mum and the generations before her.

Rebecca

A sad day for public health – standard packs and the path ahead

Join our Plain Packaging Campaign

The 2010 film The King’s Speech was a national triumph. So at Cancer Research UK we’re dismayed to have to report that we’re not exactly rolling out the red carpet for yesterday’s Queen’s Speech.

In fact, quite the opposite.

The Queen’s Speech – which outlined the Government’s focus for the next year – has, shockingly, left plans to put tobacco products in plain, standardised packaging, on the cutting room floor.

The government has thus failed to deliver on a policy that would help protect children from a product that has no safe level of consumption.

So today, nine months since its consultation closed in August 2012, we’re left hanging, still waiting for the government to make a clear statement of its intentions.

In that time more than 150,000 children have started smoking – the beginning of an addiction that kills half its long-term users.

In light of this disappointing decision, we wanted to outline, clearly and simply, which organisations support this measure. Also we thought it worth exposing the vested interests of its opponents. This is all worth knowing, because this fight isn’t over; this is not “The End”.

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Government must put children’s health before tobacco’s profits

Girl looking at plain pack

Children are lured by tobacco packaging

Next Wednesday, in a ceremony full of tradition and colour, the Queen marks the formal start of the parliamentary year.

This will include a speech that sets out the government’s agenda for the coming session, outlining proposed policies and legislation.

We’ve been urging the government to seize this opportunity to replace the slickly designed tobacco packaging with packs of uniform size, shape and colour.

But we’re very concerned by today’s newspaper reports that the government is backing away from including legislation in the speech.

We believe it’s a grave mistake to allow the current situation to continue.

The public consultation on the future of tobacco packaging closed in August 2012 and we’ve been impatiently waiting since then to hear what this government will do about this issue.

Impatiently waiting because every day the government delays taking action sees more than 500 under 16s being lured into smoking, an addiction that will kill half of all long term smokers.

Tens of thousands of our supporters have added their voice to our campaign to protect children from tobacco industry marketing, so we know the public backs this measure. 

The evidence shows plain, standardised packs reduce the appeal of smoking, and experts from across the fields of health and law enforcement are fully behind the move.

You might wonder who could possibly oppose this measure. The answer is simple – the group with the most to lose, the tobacco industry and the groups they fund.

Because fewer smokers mean lower profits and less money in the bank for the industry.

If this government doesn’t act, the tobacco industry will get the green light to continue targeting our children with sophisticated and slick designs.

You may have also seen this Japan Tobacco International (JTI) ad popping up in national newspapers recently, part of the £2million advertising campaign that JTI are waging against the introduction of plain packaging.

Click to enlarge

Click to enlarge

We’ve written before about misleading and unsubstantiated ads from JTI, which have been banned by the Advertising Standards Agency.

When the tobacco industry is desperate enough to spend so much money on misleading the public, we know we must be on the right path. Private Eye magazine published its own spoof version of the above JTI ad, which we thought was too good not to share:

Reproduced by kind permission of PRIVATE EYE magazine www.private-eye.co.uk

Reproduced by kind permission of PRIVATE EYE magazine www.private-eye.co.uk

Indeed… we couldn’t have said it better ourselves.

Alan

New tricks for old drugs – blocking oestrogen to prevent breast cancer

Tamoxifen tablets

Can drugs like tamoxifen be used to prevent breast cancer?

Tamoxifen is one of the mainstays of breast cancer treatment. Since the early 1980s, it’s been given to women who’ve had breast cancer to try to stop the disease returning.

As a result, it’s saved the lives of millions around the world, and some regard it as the most important cancer drug ever developed.

But today this old drug returns to the spotlight, with a new study showing that tamoxifen and other oestrogen- blocking medicines can reduce the chances of healthy women developing breast cancer.

We’ve blogged before about the discovery of tamoxifen, and Cancer Research UK’s role in its development.

But until now it’s not been clear whether tamoxifen and related drugs might have benefits for healthy women. Today’s finding, by an international team led by Cancer Research UK-funded researchers, provides the best evidence yet that these drugs could be used to help prevent breast cancer in women at average and above-average risk of the disease.

This is hugely significant. If benefits are shown to outweigh the risks, offering women at high risk of breast cancer a drug to lower their risk, could potentially prevent many thousands of breast cancer cases in the UK alone.

Let’s look at their findings, and at what happens next.

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Misleading ads and public distrust – wising up to the tobacco industry

JTI advert that appeared in several national newspapers this month

JTI advert that appeared in several national newspapers this month

As we revealed last week, almost two thirds (65 per cent) of the public don’t trust the tobacco industry to make believable and independent arguments about how to reduce smoking rates.

This is particularly relevant at the moment. The public health community – over 190 health and welfare organisations, including Cancer Research UK – is calling for the government to introduce plain, standardised tobacco packaging to protect children from tobacco marketing.

But the tobacco industry – and its funded groups – continue to oppose the measure, despite clear evidence that standard packs make cigarettes less attractive to children.

As the campaign intensifies, with the appearance of a new series of national press ads, it’s worth looking at how the tobacco industry’s opposition has panned out so far, and how it’s built such a dire reputation.

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Cancer care in the new NHS in England

NHS logo

Changes are afoot in the NHS – what will they mean for cancer patients?

As of Monday (1st April) the Government’s reform of the NHS became a reality, with the Health and Social Care Act coming into force.

We’ve blogged a number of times about our views on the reforms as they took shape over the last couple of years, and more recently about our report on the state of cancer services during transition to the new system.

But now that the reforms are actually in place, and more of the detail has emerged, we thought we would take this opportunity to look at how the new NHS will work for cancer patients.

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News digest – Budget, bowel screening, Bluetooth, kids smoking and more

UK newspapers

Read our news digest

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