Awareness – post-diagnosis?

I have recently had a major progression of my Metastatic Breast Cancer into my liver. I have been thinking that I wonder if awareness actually works because doctors, and even oncologists seem to be so resistant to patients recognising symptoms.

There have been some high profile cases of young women developing cervical cancer about the age of 18 and having to fight to get recognition. One has since died. There is the case of Kris Hallenga who was eventually diagnosed with Metastatic Breast Cancer at the age of 23 but at first, and although she was aware that she had various symptoms, she still had a job to get the medical profession to take her seriously.

I have been aware that the Letrozole (Femara) has not been working for a while but although some of the signs that it has not been working are the reversal of side-effects that they list that you could get from a drug. My joints have not been as painful, my hair has gone thicker, I have more hair growing under my chin. Also increasing fatigue. But the medical profession?

I have changed GP surgeries having got fed up with those at the previous surgery asking “what do you want me to do about it?” and “come back if things get worse”, not to mention having to give a reason to the reception for deserving an appointment in the first place. To the first question … what do I want you to do about it … you’re the one with the medical degree and fancy letters after your name; you could listen to me and maybe even examine me and do some tests, rather than show me to door.

Oncologists and hospitals are not a lot better. My hospital is now running a policy of any onc seeing the patients. Because I have been stable for so long I now have my treatment at the local Hospice in the town where I live and have only had to go into the city every three months to be checked by an onc. I was supposed to be seeing the senior consultant, but haven’t seen him for about a year. In fact I only found out about this new policy when I say a third different onc and just as I was about to ask to see the other consultant, two doctors came up to talk to the co-ordinating nurse who then completely ignored me. After trying to get her attention I gave up and went back to my seat.

Surely Awareness should be for AFTER diagnosis and well are before? If you are on a drug that is working, and this is partly shown my scans and also because you are getting the side effects, why won’t they take any notice of the lack of side effects which are indicating that the course of treatment might not be working. But even making an onc aware of this are just dismissed, or that has been my impression. Even when a CT scan showed something in my liver on 22 Jan 2014 I didn’t get called back and only saw another onc on 4 March 2014 who basically just wanted to watch and wait because my blood tests were normal. They won’t use cancer markers with me so that option is not available, at the moment. I pointed out that my blood tests were normal when I had a pathological fracture of my right hip caused by a 4″ x 2″ tumour in January 2008. I had been ignored about this pain when I was dx as Stage II in September 2007. Based on this they never thought to do any other scans. Eventually my hip was so bad, and someone actually looked at an x-ray taken two months before, and I was sent straight from the chemo clinic to Orthopaedics Trauma and had a total hip replacement.

What right does the medical profession feel that it has to ignore the very symptoms that the medical authorities are so keen to get across to the public? Why do they ignore symptoms after dx, even when it is directly related to a medication and the subsidence of known side-effects which would indicate that it is no longer working.

It was interesting that I overheard a junior doctor in A&E a couple of nights ago, when I was taken in by ambulance (ER in the US) say that I knew myself very well, and the state of my disease, and also that my new GP has made a similar comment. Just a shame that my previous GP and the oncologists aren’t the same. What I find most unforgiveable with my previous GP is that I had told her about symptoms, pointed out that cancer markers done for my hysterectomy in 2002 (also breast cancer markers), told her that my mother had breast cancer and until I found a 4cm lump in my breast it was ‘go away and come back when things get worse’ alongside an attitude that I was fat and depressed. Hmmm. Of course it may have made no difference in the long run, but if someone had reacted at the time? My mother died 15 years after having breast cancer (only treatment was a mastectomy) but she died of something completely unrelated. Maybe that could have been me?


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