Hello gerrywoo, 

A warm welcome to our forum. I am so sorry to hear you had this kind of experience. There are organisations you can contact such as PALS if you feel you haven't been treated very well. You can find out more about this on this page.  

I hope this helps! 

Best wishes, 

Lucie, Cancer Chat Moderator

You seem to have been put through the mill, the NHS is usually better than this when my friend was told she had breast cancer they got her friend to sit with her and then the breast nurses explained just what it all meant. They told her the plan for her care and followed her up with phone calls and offered her time to talk. I would contact pals to explain your lack of care and how you feel. 
l hope you are able to get some support from the others on this site . 
take care l hope you are helped through this how about Macmillan they were good with my colleague when she was in your position,  her husband was a wet weekend and more concerned about himself. 
sending a hug

susie 

Oh bless you. Some staff are lovely and unfortunately some can not be so sensitive. This is not an excuse but as they see so many patients and it's "normal" to them plus the pressures of Covid, those of us who do suffer from anxiety or are sensitised due to trauma can be badly affected when we don't thoroughly cared for. PALS is a good point of contact but dare I suggest that counselling may be helpful? 18 months is a long time to be suffering over this and it could be that it is being compounded by the grief if loosing your husband and also your mother - sometimes what we think we are angry about is not just what we are angry about if that makes sense. The positive is, is that you don't have breast cancer and I am pleased that your screening did at least pick up concerns that were investigated x

Thanks to everyone for thoughtful replies - you are all right. In the end I benefited from NHS screening programme, and I am profoundly grateful and appreciative of this.

I do think that little things could change the experience of the investigations though - eg respect of patients' dignity and need for a little privacy by provision of changing areas. I've seen it in other settings so it can be done.

Acceptance and understanding from NHS staff of the intensity of the experience and anxiety engendered - I needed to feel "cared for" - I don't think this was a priority in the setting I visited and I understand why not in times of stretched resources. 

You are also right that lots of other very difficult life events have battered my coping abilities, and I am paying for counselling to try and understand and improve this area.

I still feel that my right to own information relating to my body is paramount, and I still feel very strongly that NHS often treat such information as if it belongs to them. The expectation that patients can just wait until the system is ready for them before information is disclosed reveals the differential status of patients and doctors. A brief scan of posts on this forum reveals the wholesale distress caused by these waits. Waiting is a necessary part of the investigation process whilst results are analysed - it should not be extended to suit consultant or hospital timetables, and I believe it would be possible for this to be massively improved.

Many thanks to you all for your understanding and warm support.

I completely agree. It is tortuous to have to wait and depend on timescales - everyone needs to be treated as an individual and recognise the mental toll and resolve this as much as possible. Sadly the body still does seem to be treated "impartially" a lot of the time and emotions seen as separate x