Tuesday, 15 October 2013

My friend Sally Becker emailed me yesterday evening saying that she had written an article in today’s UK press saying: I don’t know whether you'll approve. Sally is an extraordinary woman and as most of you know she was one of the six people honoured at the opening ceremony of the 2012 Olympic Games caring in the Olympic flag into the stadium. She is known as the Angel of Mostar for her work as a charity volunteer saving hundreds of lives in war-torn Bosnia. Four months ago she was diagnosed with breast cancer and underwent a double mastectomy, but she is refusing all further treatment. Here, she explains why she's taken this decision.
Being told I had breast cancer in May was devastating. A cancer diagnosis is a major setback for anyone, but it was especially difficult for me, as I knew it could have been detected sooner, which would have meant less aggressive treatment. I'd had a mammogram 18 months earlier after finding a pea-sized lump in my right breast, which also appeared slightly misshapen. I knew something wasn't right, but the X-ray and ultrasound scan came back clear and the radiologist reassured me everything was fine. I wasn't offered a biopsy, which would have revealed the cancer (for which I'd have been given a small lumpectomy). In women like me who have dense breast tissue, it can be harder to spot some cancers - but a biopsy with a physical examination and/or ultrasound (known as the triple test) can give an almost 100  per cent accurate diagnosis of whether a lump is cancerous. When I noticed further changes in the same breast earlier this year, I went back to the clinic. .. The area around the nipple was puckered and I knew this was a bad sign. I underwent two mammograms, an ultrasound and five biopsies and, two hours later, it was confirmed (by the same radiologist) that it was likely I had Invasive Lobular Cancer (ILC), a condition that starts in the milk-producing glands and makes up around 15 per cent of all breast cancer cases. However, it is one of the most difficult cancers to detect, especially if the tissue is dense, as on routine mammograms it is often 'invisible', presenting more like a spider's web than a single lump. Two months later I had a 6cm tumour removed. I chose to opt for a double mastectomy because, with this type of cancer, there's a higher risk of the disease appearing in the other breast. I was also concerned that a mammogram might not pick it up. The operation was a success and I also underwent reconstructive surgery, which is on-going. I was told I'd also need follow-up treatment because I had a 20 to 30 per cent chance of the cancer recurring. The oncologist advised having radiotherapy to my chest wall to kill any active cancer as well as chemotherapy to mop up any stray cancer cells elsewhere in my body - and then five to ten years of hormone therapy to prevent the cancer coming back. At first, I assumed I had no choice but to climb on the conveyor belt to cancer hell. But, after some research and realising that in my case the treatments on offer could do more harm than good, I jumped off. There are some breakthrough treatments out there, such as Tamoxifen, which have proven to help prevent cancer recurring. But they can have side-effects such as womb cancer, blood clots and bone disease - and I'm not brave enough to go there. When I told my oncologist about my decision, he just looked at me in despair. He's not the only one - to some family and friends my decision is both unfathomable and controversial, especially as I have a 14-year-old daughter Billie. Shouldn't I do everything I can to make sure I am around as long as possible to be with my daughter, I hear them ask? My answer to them is simple: I want to be there for her, but I can't do that while coping with the brutal and even dangerous side-effects of the treatments on offer.
My view has also been influenced by the experience of my cousin, a 48-year-old father of six, who was diagnosed with lymphoma (a type of blood cancer) last year. His family was desperately looking for a cure. He had chemotherapy, radiation, everything the doctors could offer, yet he was dead within months. His intensive treatment caused blinding headaches, fatigue, nausea and weight loss, among other debilitating side-effects. At times, his mouth and throat were covered with ulcers and he couldn't eat or drink without pain. It wasn't the cancer that killed him, but the drugs which battered his immune system and allowed a fatal infection to take hold. These anti-cancer drugs are actually cytotoxins, or 'cell killing drugs' which do not differentiate between good and bad cells. Not all chemotherapy is the same; some types have fewer side-effects, but for patients with my type of cancer, chemotherapy makes a difference of only 1 or 2 per cent to the chances of being disease-free after five years - so, in my case at least, there would be little benefit. I don't want Billie to have to watch me go down that road. A road where I'm going to end up feeling ill and in pain and looking like something out of a horror film. Where I am unable to take care of her properly because of the nausea and vomiting and fatigue that can continue for months after treatment. Right now, I am not at death's door. No one is saying I only have months to live. But even if they did, it wouldn't change my view. I have been very open with Billie and we have spoken at length about it. It's hard for her because she wants me to promise that the cancer won't come back and I can't do that. But we are both optimists - a 20 to 30 per cent chance of recurrence means a 70 to 80 per cent chance that it won't come back - and in the meantime, my hope is that some other treatment comes along. There are other, newer treatments being developed, but the law on medical negligence means new types of surgery or drugs can't be offered to patients for fear of litigation if anything goes wrong. The current law is stifling any real progress. Meanwhile, in many cases, doctors don't know if the standard treatments are going to save their patients. Around 115,000 women will still die from breast cancer over the next ten years. I believe people should be given a choice, not forced to have the same treatments they have been handing out for decades. The history of medicine shows that innovation often revolves around the individual doctor who has an idea and is inspired to try something new. For example, standard surgery for breast cancer used to involve removing tissue from the shoulder, the chest wall, ribs - anything and everything that could be removed without killing the woman. In the Twenties, Geoffrey Keynes, a doctor at Bart's Hospital in London, refused to follow this standard practice - instead he removed only the tumour and then gave radiotherapy. He was universally ridiculed, with 'lumpectomy' coined as a term of derision by his colleagues. Today, the lumpectomy is standard procedure. Yet if Keynes did that today, and a patient died down the line, he would probably be sued for medical negligence. Of course, we don't want to be experimented on by mavericks. However, when faced with a terminal illness that's not responding to standard treatment, doctors - with the permission of their patients and the approval of multi-disciplinary team of medics - should be allowed to try new drugs and surgery. Following the death of his wife, the novelist Josephine Hart, two years ago from ovarian cancer, Lord (Maurice) Saatchi put forward a Medical Innovation Bill that would allow just this to happen. This would mean that as long as they have approval from the patient and other doctors - and follow guidelines - doctors could try alternatives, such as drugs still undergoing trials, or a new surgical technique. I will be giving it my full support when the Bill is presented to the House of Commons on Friday, because it could benefit millions. 'Cut, poison and burn' has been the standard treatment for malignant tumours for half a century, and with cancer affecting 42 per cent of the population, I believe it's time we tried something else. Until such a time, I stick by my decision to reject current treatments, knowing that my life - however long or short it may be - will have some dignity and quality to it. For more information, go to saatchibill.tumblr.com

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