Hello to everyone. I'm writing this so that it might help others who are similarly diagnosed. Hopefully, people will see they are not alone, and maybe get some ideas about various treatment options.
Background:
In November 2009 I was diagnosed with Breast Cancer. I had a mastectomy and lymph node clearance in January 2010, but in February 2010, further tests revealed that that the cancer had already spread to my skull.
Treatment:
Initially, Doctors at my local Hospital refused to give me chemotherapy and radiotherapy, and just wanted to give me endocrine therapy (Femera), and Bisphosphonates (as my cancer is strongly oestrogen receptive). However, in the past, I trained as a Nurse, and was aware of certain drawbacks to this approach. Firstly, I was aware that it takes at least six months for endocrine therapy to have any effect on bone secondaries, while cancer can spread throughout the body in four months . Secondly, I was aware that endocrine therapy sometimes has no effect at all (some research suggests in up to 50% of cases). Thirdly, having considered recent evidence, that suggests cancer is a disease that gains momentum, I formed the opinion that it is more beneficial to load the majority of cancer treatment at the beginning of the metastatic journey, rather than the end when it is has already gained control. In other words, it is more beneficial (in terms of prolonging survival), to throw everything at it, to nip it in the bud, rather than try to treat it once it has spread throughout the body. Fourth, in my case, Doctors could not find cancer anywhere else other than the skull (a situation that is referred to as oligometastatic ), and there has been some reesearch done by the Anderson Cancer Centre in Texas, that suggests that where spread is limited to an isolated area, it is still potentially curable (with very aggressive treatment). Finally, I was aware that in medical circles, that chemotherapy and radiotherapy are described as the 'Gold Standard' - and I wanted the Gold Standard.
Getting the right treatment:
Clearly, I wasn't going to get the 'Gold Standard' at my local Hospital, so I basically self referred to a London Teaching Hospital. Luckily, they agreed that the treatment I had previously been offered was 'conservative to say the least', and immediately started me on six cycles of FEC 75, and conventional radiotherapy to the mastectomy site, lymph nodes and neck.
The next step:
Happily, when I returned for scans, the skull mets had shrunk quite substantially. But as the aim was curative, shrinking mets was not good enough. Basically, they had to be destroyed once and for all - but how?. Conventional radiotherapy would not be an option, because to give it at a rate that would destroy tumours might also destroy my brain (because conventional radiotherapy also destroys healthy tissue). Surgery was also not really an option, because they would have had to remove half my skull, and graft bone from elsewhere. The only real option was Cyberknife Radiotherapy, because it is so highly precise, it does not damage healthy tissue, and can therefore be used at a rate that destroys tumours.
Fighting for Cyberknife:
A team of twelve Doctors (including three professors of Oncology), thus referred me for Cyberknife treatment, and another team of twelve Doctors (including Britains leading Cyberknife experts), accepted me for treatment. Unfortunately though, when the Hospital asked the South East Coast Specialist Commissioning Group (who handle all funding applications for Cyberknife in Surrey, Sussex and Kent), to approve funding, they refused. Basically they claimed that they had conducted and "extensive review of Cyberknife", and had concluded that it was neither clinically, or cost effective.
Getting Cyberknife:
Luckily for me I work in the Charity sector, and knew of a Charity that could help with funding. I contacted them, and they said they would help, if the Doctor agreed to accept me on a charitable basis. Luckily again, the Consultant in charge of my treatment, was prepared to persuade the Doctor concerned to accept my case on a charitable basis, and so within weeks of approaching them, an arrangement for funding had been made between the London Clinic, the New Victoria Medical Foundation, and Dr Gaya (who waived his fees).
Going forward:
A year ago, I had cancer in my breast, lymph nodes and skull. Now I do not. Yes it might come back elsewhere, but that's the nature of cancer. Even those with a stage one diagnosis, sometimes suffer recurrence. But what I know now is that having been blessed with the opportunity to have Cyberknife, I have to try to make sure that all NHS patients can get funding for this potentially life-saving treatment.
Fighting for Cyberknife:
Sadly, the South East Coast Specialist Commissioning Group have refused at least eight funding applications for Cyberknife. What is particularly sad, is that the so called "comprehensive review of Cyberknife" that they base their view on, doesn't actually exist. Instead the Group are basing their decisions on a Canadian Public Health Report, which, given that Britain has more experience of Cyberknife than Canada (because they didn't get it until 2009), just doesn't make sense.
Please help:
I hope that having read my blog, you will feel inspired to join me in demanding that funding is given for Cyberknife, to all who need it. The fact is that one in three people get Cancer, so you or your loved one's may need this treatment one day.
