A person close to me is coming up against a cancer service that is proposing to treat the illness (in their tried and tested ways) rather than treat the patient. A recent scan seems to have provided confirmation bias to a pre-scan predicted and preferred course of action, but they refuse to show her the scan and talk it through with her (she has some medical training so is familiar with these images). They are pushing more scans (more radiation), and another chemo course. She asks about a surgical alternative but is facing a brick wall. The fear is she is being labelled as a “difficult patient” who does not deserve their efforts to save her life. Without any new test her stage 3 status suddenly became stage 4, and she only found that out through the radiologist. Is there a service which provides an informed advocate who speaks the language of the specialist clinicians to attend appointments with the patient and ensure that a meaningful consultation takes place?
Hello Samul
I hope someone can answer your question in the affirmative, as this is something I feel I need too.
I’ve had unsatisfactory conversations with 3 oncologists who were resistent to discuss issues to the extent or depth I wanted, in order to understand better such topics as the different drugs (hormone therapies), my particular risks and my pathology results. Concerns over post-surgery physical symptoms were also summarily dismissed.
Thank you for asking the question; I will be watching this thread with interest …
Could you speak to PALS in the first instance? Or your BCC nurse?
First of all I’m sorry that you are both in this situation.
About a year ago I had some lingering worries over imagined consequences of my initial procedure which failed . I mentioned this to one of the BCNs at our local support group. A meeting was then set up for me with the Radiologist who had taken the images and performed the procedure which answered my questions and reassured me . I know it is not the same situation but if you want scans explaining then a Radiologist is your best bet . You do t say if the Radiologist who told her she is stage 4 was an Oncology specialist - I would have expected this to be communicated during a formal appointment by someone in the Oncology field.
I’m a Nurse and also have some knowledge which doesn’t always help in these situations even though you think it would as you know certain things but don’t know what you don’t know and can end up labouring under misapprehensions due to knowledge gaps - this happened to me and I think sometimes it’s almost better to start with no knowledge and learn from scratch . One thing I found out and that your friend needs to bear in mind is that you really can’t be your own Dr. or Nurse - sometimes you just have to be a patient.
They should be able to explain it better to her though by the sound of it - as someone has suggested it might be worth contacting PALS . You could ask for a second opinion or get a private consultation even if it’s just to go through everything . I would also suggest contacting MacMillan for advice and if there is some kind of advocacy service then they would know about it. Perhaps if your friend / relative were to contact the helpline here which will be open tomorrow from 8am and explain her situation in as much detail with as much information as she has then they may be able to advise her further .
I hope you and my person can both get the support you need. I worry that the pressures on the system are impacting on the clinical personnel and their capacity to have the time or resources to properly individualise treatment plans or access alternatives to the mainstream in ways that allow the patient to have informed collaborative control of their healthcare. I wish you good health and happiness.
Thank you. We shall explore these suggestions.
Thank you for your considered response and suggestions. Like most people, I grew up with the mantra that “doctor knows best”, and I’m not a doctor. I still put my faith in the medical profession generally, but I have had to become a bit more of a self-advocate, and advocate for others due to particular personal circumstances. At the risk of being classed as just another classic complainer who seeks every opportunity to knock the NHS (which I most assuredly am not), I have witnessed not only some of the best, but also some of the worst of the medical profession through my experiences with the infected blood scandal. I have also become cautious of the bigger corporate charities who rely on contracts to deliver their work. They can become mouthpieces for the official narratives instead of campaigners for patients whose experiences are less than ideal. My friend’s situation may well be best treated as is being asserted by clinicians, but their lack of openness to being questioned and reliance on paternalistic jargon to side-swipe the issues is at best unhelpful. Someone should be there to level the playing field.
I’m so sorry that anyone is in this situation.
I agree with @JoanneN PALS is good for acting on your behalf. You could do a formal complaint stating what has happened and how you feel let down. A second opinion is a good idea, this can be done on the NHS or private ( this is not always possible at around ÂŁ250 for one consultation). I have read on this forum that others have gone for a second opinion privately to have it confirmed that the NHS treatment plan is what they would have done. Bearing in mind a lot of consultants do private and NHS work, this may not be surprising.
The NHS predict tool is used to work out treatment plans for breast cancer on the NHS. You can check you own. Although it’s for early breast cancer not secondary, so may not be applicable but thought I would mention just in case someone else looks at the thread.
Sometimes you have to just speak up, during my chemo I had to complain and it wasn’t easy. My chemo brain wasn’t functioning properly but I preserved and took lots of notes. So when they said I said this and that, I could say no, you actually said this.
I hope it all works out 
You are right that the pressures on the NHS are eroding cancer care in particular.
Thank you for your good wishes 
and to all of you who have put forward your suggestions.