The Sunday Times NHS reform, beat cancer campaign england.nhs.uk/2014/03/24/cancer-campaign/ This campaign is backed by NHS England
I have just submitted my story -
In 2002 tests before a hysterectomy showed that I might have cancer. I informed the hospital and my GP that my mother had breast cancer in her early 50s, and it turns out that the marker that showed the problem is also a marker for breast cancer. I was 42 years old.
I went to my GP several times and repeated this information but my GP did nothing until August 2007 when I found a lump in my left breast. I had a 4cm tumour. September 2007 I had a mastectomy, was asked if I had any pain elsewhere and I told the surgeon about two sites of pain. Nothing was done beyond the response of ‘that is interesting’ and I was put on adjuvant chemo and told I had an 80% chance of being alive in 10 years time.
Eventually I got an oncologist to have an x-ray done of my right hip, but the report was never done so I had to ask 2 months later if anything had come of this because I was having a lot of problems and was walking with a stick, at the age of 47. The oncologist comment that the report had not been written which is why it had not been highlighted for the Dr to check it and she took one look at it and left the room. I was left looking at the x-ray which showed that the bone at the top of my right femur was marbled in appearance, and I instinctively knew this wasn’t good. I was sent for more x-rays and when I got back to the clinic I was sent straight up to orthopaedics and five days later, after scans, I had a right total hip replacement due to a 4" x 2" tumour which had caused a pathological fracture of my right hip.
A CT scan done in January 2014 shows that I probably have some progression into my liver, but I can’t get a date for a scan (which was marked Urgent) because the ‘only’ person who can do this scan at an Acute Hospital (Southampton General) is on maternity leave and won’t be back for a ‘few’ weeks. Repeated calls have not had any result.
I don’t think that my current treatment has worked for the last or 9 months but until the Jan 14 scan they have been telling me that my blood tests are normal (as they were when my right hip was in an advanced stage of collapse) so they do nothing. I don’t think they even register the symptoms I tell them about, and on occasion the onc has seemed to find them mildly amusing. My GP tells me to ‘go away and come back when things get worse’ even though I have Stage IV Metastatic Breast Cancer - there is no Stage V!
So much is said about early detection … but when are GPs going to start listening to their patients and move away from the assumption that you are “too young” to have cancer? Doctors are supposed to ‘first, do no harm’. They have not only harmed me, but condemned me to death. I have ZERO confidence in the medical profession and, quite frankly, the lack of any joined up thinking stinks! I understand that even with earlier treatment I may still have developed Metastatic Breast Cancer, as 30% of those with breast cancer ultimately do, but they did nothing about their own tests which showed I might have cancer. My GP ignored me until I found a large lump, and even then I was loathed to go to see her because she had told me so many times to ‘go away and come back when things get worse’. Incurable cancer IS worse!
Despite the high profile of breast cancer very little is done to help those of us with Metastatic disease because the early stage Pink Survivors don’t want to know about us, and we are not part of the positive success story that breast cancer is supposed to be. In Europe only about 5% of the funding for breast cancer research is devoted to the only stage of breast cancer that kills nearly 12,000 people in the UK each year.
I have an advocacy blog:
However no organisation in the UK seems to be interested in MBC and insists of calling it ‘Secondary’ BC as though it is in second place to Primary BC. Sadly it is very much in second place.