Bloody Hell - Angelina Jolie

[LtEveDallas]

Have just seen this on the news:

BBC News

Poor woman. Must be terrifying to be given 'odds' like those. What a terrible decision to have to make, but the right one I think.

[HesterShaw]

Ah. I hadn't seen that.

But I do agree with you. There is far too much, and it is growing, emphasis placed on women's breasts as merely decorative assets. Or even assets full stop. Koo Stark always refused to wear prosthetic breasts, and I admire her for it.

[edam]

Thank God for the NHS - the idea that testing for the genes alone in the US is £3k is horrifying.

I believe it took a dogged campaign in this country to make genetic testing routinely available for women with a family history of breast cancer, and preventative mastectomy. A key figure was Wendy Watson - who also went on to campaign against companies trying to patent the genes involved so that they would be able to make money every time someone was tested. She runs the hereditary breast cancer helpline, largely on a wing and a prayer and a team of volunteers.

[GetOrfMoiLand]

Poor Brad? Oh for FUCKS sake.

[GetOrfMoiLand]

I was just about to type that edam when I saw the poor Brad shite.

Poor numerous women who live with the knowledge that they have a risk of developing cancer because it is prevalent in their families, and they cannot afford/are not insured for the test.

Poor women who have been unable to have any kind of preventative treatment and have had any incidence of this awful disease.

Not poor fucking Brad Pitt.

That article was very well written I think. I had no idea that the procedures AJ and Michele Heaton had were so gruelling.

[GetOrfMoiLand]

Thanks for that link edam - makes very interesting reading. I am just going to extract a piece from that website about the genetic testing - which is something I never knew about and am astonished by.

"Gene Patent Challenges
Wendy sold her farm to fight to keep the two breast cancer genes from being ?patented? in 1997, initially challenging a multi million pound coordinated lobby in the European Parliament to legalize the patenting of human genes, and subsequently challenging Myriad's European and UK patent application. Testing by the company in the USA who own the BRCA 1 and 2 patents, costs more than three times as much as testing here in the UK. Manchester Regional Genetics claims this has saved them over £3.8 million already. Audited genetic testing figures from the CMGS, courtesy Dr Rob Elles, confirm a saving to date of around £8 million per annum, £55 million to date. (see separate table, genetic testing cost savings) Wendy Watson versus Myriad Genetics is now a teaching module / round table discussion in America!

Genetic Testing and Insurance*
The Helpline was instrumental in suggesting the current, highly satisfactory for all, moratorium in genetic testing and insurance. Wendy suggested a ceiling to which companies could not request test results, but requests over this ceiling could be subject to this scrutiny. This kept things fair for all; thus the moratorium was adopted and has been extended three times, now until 2014 - with both parties (insurance industry and patients) happy."

[Copthallresident]

Darkest Facing Cancer doesn't make you strong, and being strong doesn't make any difference to your chances of surviving it. As a fellow Mumsnetter put it so well it isn't "about people "fighting" cancer and some people "losing the battle", have you ever had cancer? I'm sure you mean well but it's not a personality contest, you don't live because you're tougher or stronger or braver than anyone else. People don't die from it because they didn't "fight" hard enough. If there is a battle to be fought it is between science and nature, and the patient is just the battleground. Some people will have all the treatments and take every possible supplement and do everything by the book and they will still die. They haven't failed in any way. And I'm not brave or strong, I'm just lucky that my cancer was caught in time, that there are treatments available and that I live in a country where I have access to those treatments."

For quite a lot of people with a dx it gets really annoying being told all the time that you are "strong" or even worse that you should be "strong" Perhaps even AJ feels that way?

[edam]

YY it's a real David and Goliath story. And for once, the good guy (woman) won. Sadly it seems companies were able to get a patent in the US, hence the prohibitive cost of testing.

However, I notice this story today - seems like good news for cancer patients, as the US patent may be restricted/largely overturned. Hopefully EU legislators will sit up and pay attention, I was horrified at the time that they would even consider allowing companies to patent human genes.

[Copthallresident]

Hester I admire that, wish I had the chutzpah to go without my prosthesis. The thing is when I have forgotten it, it hasn't been men who have stared, or even noticed , and I do by way of distraction have very long legs , it has been women who looked at me in horror Of course having forgotten it in the first place I am always unaware of why I am getting those looks until it is too late to say something but they are the ones with the issues, they shouldn't inflict them on anyone else.....

[GetOrfMoiLand]

The 'being strong' and 'fighting' cancer themes have always seemed to me to be the wrong terminology to use. I would hesitate in saying so because I have no experience of cancer but you explain it incredibly well copthall.

The gene patent issue is extraordinary. i have just been looking it up and seemingly although it is in teh supreme court the actual patents for these genes expire in 2014, hopefully the genetic test will be cheaper and more accessible then. But of course I expect the court case needs to continue to create a precedent for other genetic patent applications.

How can you patent a gene, ffs. So one company can 'own' a gene and all the tests related to it and no other company/institution would be permitted to research that gene. Bloody hell.

[Faxthatpam]

Cop - YY that use of the terms "fighting" and "strong" and "losing the battle" with regards to cancer or other terminal illnesses has always bothered me. So, my mum, who died of cancer, was "weak" and she "didn't fight hard enough" and "gave in" to the disease then? . It is the prolific use of this language - especially in the media - that really grates, even though mostly it is meant well. I can only imagine it is an added pressure for anyone suffering the lottery of a cancer dx.

[bkgirl]

She is not my favourite person but I was sorry to hear this news and wish her well. I thought she is still bugged with the Jennifer Anniston "thing" with the comments that her and Pitt are closer than ever. That said, I have met people who worked with Anniston who say she was quite unpleasant. Jolie herself has done excellent humanitarian work.

I hope their natural children are free from the gene - can boys be carriers I wonder?

[NotGoodNotBad]

I think it is certainly worthy of being a top news story - not because of her individual case as such, but because it highlights such an important issue.

[NorthernLurker]

Copthall - I think that AJ would probably agree with you that a different vocabulary is needed to talk about the situation of women who have been diagnosed with cancer. Her focus in the article is on the situation she was in, where she did have choices and was able to proceed to reconstruction as part of the same operative course.

What is 'brave'? What is 'strong'? I work in a hospital and the bravest, strongest people I've seen have been enduring their illness and then when they've had enough, have made the choice to stop a life prolonging treatment and move in to an end of life phase. I think the 'losing the battle' thing is nothing more than tabloidese. Best ignored.

[Punkatheart]

Don't get me started on all the cancer battle crap. It is NOT a battle. I am NOT fighting it. It will be a blend of good luck and fine medicine. People have no idea how much of a failure dying people feel, when this nonsense is applied. Hate the new Macmillan campaign as well. Brave does indeed have many guises and there have been wise statements made on this thread.

I would actually remove 'cancer' from the vocabulary. It's an invented word - there is indeed lymphoma, carcinoma etc. Cancer is a generic media term and has been embued with all sorts of emotion and fear now.

Sorry about the Katie Price slip - I literally plucked something random from the air and sod's law she actually had a rare form of cancer on her finger. So sorry to Miss Katie.

[Lighthousekeeping]

Good for Angie. I wish her the best.

It has crossed my mind though how these A listers can keep things out of the press when they want to. Three months of treatment.

Maybe now the Daily Fail et al will beable to stop asking "Is Angelina Jolie pregnant?" Every other bloody week.

I believe Sharon Osbourne has also had the same surgery?

[Chubfuddler]

Well a lot of the stuff that gets presented about slebs as gospel is invariably untrue, so it's not that surprising that with their resources they are able to keep important stuff quiet. Would you risk the legal wrath of Jolie-Pitt if you were a hospital worker who knew about this? In the wake of the KM hospital crank call I wouldn't.

[dippywhentired]

My mum died of breast cancer nearly 12 years' ago and I only just found out that she had the faulty BRCA2 gene. I am planning on being tested myself, having read that this gene raises the risk of cancer to between 50 and 85%. As someone I read about said, if you were told the plane you were about to take had an 85% chance of crashing, you wouldn't get on it. I was really struggling over the last few days, thinking I could be stuck between living with the constant fear of cancer, or going through major surgery to reduce the risk, and reading about AJ today has really helped. For me, having regular screening would not put my mind at ease as my mum's cancer was found early and she still died. I also have 2 small daughters, so feel i owe it to them to know whether I also have the faulty gene, which I could have passed on to them.

[edam]

Hey dippy, I hope the test comes back negative - but even if you do have the gene, I'm glad you are reassured that you do have options. The link I posted earlier to the family breast cancer helpline may be useful - the volunteers are all people who have been through this themselves.

Think this thread shows why it was important for Jolie to speak out - and it's interesting, that she did so in her own article, in a serious newspaper, which is being taken seriously.

[dippywhentired]

Thanks edam!

[ajandjjmum]

How worrying dippy - fingers crossed that the gene won't have passed to you, and if it has, that you have support in whatever decision you make.

[BelaLugosisShed]

One thing I'd really like to know is exactly what procedure she had for reconstruction, as she had no excess flesh to utilise and it was all done very quickly, especially as she mentions "tiny scars".

[uwaga]

Hi dippy, hope your test is negative but if not at least you have options.

I have the BRCA2 mutation and had a double mastectomy last December. I can honestly say that the fear of the surgery was far far worse than the surgery itself, and I say that as someone who didn't have an altogether straightforward experience. Like yours my mum's cancer was found early but she still died so screening was not a long term option for me. I have a young son and I will do whatever it takes to be here for him for a very long time.

I'm full of admiration for Angelina Jolie - she has used what is a very difficult and personal experience to benefit other women who may not know about gene testing or may be too afraid of the consequences to get tested. It is incredible to see the amount of coverage the issue has got today.

[uwaga]

Bela i think she had a two stage reconstruction using tissue expanders which are then replaced with permanent implants. No excess flesh needed.

[dippywhentired]

That's really reassuring to hear, uwaga. Do you mind me asking about your reconstruction as I must confess, what I'd potentially be left with scares me too?

[uwaga]

I've been lucky and I'm very happy with my reconstruction. Aesthetically they are better than they were before! Surgeons can do great things these days and most people should end up with a result they're happy with, even if it takes a few goes.

But really the most important thing to me is the knowledge that I have reduced my risk of breast cancer, the fear of which has cast a shadow over my life for the last 4 years. Even if my result had not been so good, I would still feel incredibly lucky.