Hi there. My friend had breast cancer some years ago, was treated and given the “all clear” it has now metasized to her liver, lungs, lymph nodes and chest. Regular scans and bloods were the norm and chemo was successfully stopping growth. Recently she had a massive seizure and was told after a scan that it has gone to her brain. The scan didn’t pick it up as, incredulously, they only scan the torso not the full body even though breast cancer is known to metasize in the brain. At present we don’t know the treatment that will be offered. My point is that if people can afford it then please pay for a full body scan if the NHS refuse. It is not expensive. Therefore, treatment can start before the tumours start causing the seizures which is something I never want to see again.

I could not agree more with what you say. Sadly since my last post my mum passed away - it’s been just over a year since she died and there is not a single day that I haven’t cried and not a second of any day that I don’t miss her and my heart breaks. I feel so angry with the people who claimed to be helping her- it is very wrong that a ct head scan is not performed when investigating metastatic disease. Even more frustrating is the fact that her2 positive cancers are known to metastise to the brain.  I am an advanced practitioner with 20 years nursing experience and I did not know that heads were not scanned- despite us being told that my mother was having a full body scan- she also underwent a PET scan and still this wasn’t picked up. In the October before my mum died I asked her oncologist could she have brain mets as her mood and behaviour had altered, she had gone from being a happy go lucky lady full of fun and spirit to someone who was withdrawn and lacked motivation. I was told NO and that my mum was depressed. When we found out the true extent of her disease my mum lost all faith in those that claimed to care for her. My mum had been a district nurse for 53 years and had worked right up until her second diagnosis. I asked her one day why she didn’t tell the oncologist the things we had discussed prior to her appointment- to which she replied “what’s the point they don’t listen”. To hear someone of my mums constitution say something like this broke my heart. To get to the point (I’m sorry for rambling) my mums brain mets had been there a long time - they were extensive , had she been we been made aware that a ct head was not routine I would have insisted it be done. Despite being told that my mums behaviour had changed this still did not raise any red flags:  had my mum known that she had brain mets I know categorically that she would not have put herself through chemotherapy- she would have opted for radiotherapy to her brain and would have tried to enjoy ehayntime she had left. I feel so very angry and feel that oncology services are letting patients down- the term full body scan implies head as well when this is not the case. I have spoken about to this many of my colleagues including GPS and they all believed that head ct scans were routine for cancers known to metastasis to the brain. My beautiful mum endured unnecessary chemotherapy because she was not fully informed of what wasn’t being done. I would urge anyone in this or a similar situation to ask for a CT head scan, it’s too late for my beautiful mum but I hope that if just one person who reads this does ask for a scan then all of the pain and suffering both my mum and I am going through now won’t have been in vain. It is absolutely appalling that they are not done and oncology services are failing their most vulnerable patients .

I’m so sorry, I’ve only just seen your response. For some reason I’ve not been able to sign in.

I absolutely concur with everything you have said. 

Sadly my friend died exactly a month after her seizure surrounded by everyone who loved her. 

We still haven’t really reached acceptance of her death even though it was expected. It made us realise that even if you know death is imminent it is no easier to bear.

I don’t know what your position is at the moment but send much love to you and your family x

I’m so sorry, I’ve only just seen your response. For some reason I’ve not been able to sign in.

I absolutely concur with everything you have said. 

Sadly my friend died exactly a month after her seizure surrounded by everyone who loved her. 

We still haven’t really reached acceptance of her death even though it was expected. It made us realise that even if you know death is imminent it is no easier to bear.

I don’t know what your position is at the moment but send much love to you and your family x