First of all I would like to introduce myself. My name is Lesley, and I am 56 years old, married with two grown up children aged 27 years and 20 years, and until recently I worked for a Charity.
In November 2009 I was diagnosed with breast cancer. In January 2010 I had a mastectomy to my right breast and lymph node clearance. Doctors discovered that 14 out of 24 lymph nodes were infected, and so carried out further tests to see if the cancer had spread. In February 2010, I was told that the cancer had already spread to the bone (three metastases to the skull), and was therefore, stage 4 and no longer curable. As a result I was told I would just receive palliative treatment (endocrine therapy to stop oestrogen production and bisphosphonates to help preserve bone), and that I would live for as long as the endocrine therapy continued to hold the cancer at bay (18 - 24 months).
To cut a long story short, I decided to get a second opinion, and was told that treating the cancer more aggressively would probably give me longer survival. So between March and September, I underwent a particularly aggressive form of chemotherapy, followed by conventional radiotherapy to the mastectomy/lymph node site, and neck area. Fortunately for me the chemo worked very well, and shrunk the skull mets (secondary tumours). Consequently as doctors couldn't find tumours anywhere else, a decision was made to try and finish the skull tumours off. Unfortunately, the options for doing this were limited by the proximity of the brain. Surgery was not an option, because it would have involved removing a large part of my skull, and conventional radiotherapy was not an option, because using it at a curative dose so close to the brain, would have damaged healthy tissue. So the only other option was a specialist radiotherapy treatment called Cyberknife - which in Ocotber 2010 was only available in the private health sector (4 NHS Hospitals have now purchased it and will be accepting patients by the end of 2011). Anyway, a team of doctors including 3 professors of Oncology referred me, and another team approved treatment, but my local PCT refused to fund treatment (they said they do not fund Cyberknife under any circumstance, due to cost). However, I was incredibly lucky, because a Charity by the name of the New Victoria Medical Foundation paid my clinic fees, and the Doctor in charge of treatment agreed to treat me on a charitable basis. So I became the first person in the UK to have Cyberknife for bone metastases (until then it had only been used for visceral tumours).
As a result of my experience, and the fact that Mount Vernon NHS Hospital are now accepting patients for Cyberknife treatment (and three more will follow by the end of 2011), I have started campaigning to stop PCT's refusing funding. It's crazy to have lifesaving technology available within the NHS, and now fund patients to use it.
If people would like to sign my petition the link is below:
www.gopetition.com/petition/42313.html
Thanks for reading this very long post.