"Being left in the dark over cancer diagnosis"
About: Addenbrooke's Hospital / Colorectal surgery Addenbrooke's Hospital Colorectal surgery CB2 2QQ
Posted by Bewildred (as ),
I was sent to Addenbrookes by my GP after he found an abdominal lump during a physical exam. I had requested to see my GP after suffering from bad heartburn for over a decade, worsening in the last two months. My heartburn had not been taken seriously before, but this had now become extremely painful and was not relieved by drinking Gaviscon etc.
I was sent an appointment to attend the colorectal cancer clinic - no one had formally discussed with me before that this might be cancer.
I attended the colorectal clinic where a nurse repeated the physical exam of my abdomen but could find nothing. She told me I would be sent for a CT scan. I duly received an appointment, had my CT scan and went home. This had taken a couple of weeks. One day at home I answered the phone as it rang, and found myself talking to a nurse from the colorectal cancer clinic, who told me (in hushed, 'poor you' tones) that a lump had been found on the edge of the scan - not at all in the area my GP had initially sent me to the clinic to have investigated (although 'your bowels are not good, but that is a secondary issue') and my results had been reviewed by a multi-disciplinary team.
She also told me that someone from the clinic would be in touch directly to organise a gastroendoscope appointment with me. The tone of her voice and the way she emphasised continuously that 'we don't know for sure yet' left me thinking I had gastric cancer of an advanced state and she had just given me a death sentence. Given I was two weeks away from selling my house, moving to the other side of the country and starting a new job, this was not good - but there was no real sense of urgency.
I duly waited for someone to contact me about the endoscope appointment. And waited. And waited. Finally, after a week of waiting I called the clinic to find out if I had an appointment, and was told 'yes' - the next day. Because of this, I received no instructions about how to prepare for the examination, no letter to take to the clinic for my appointment and no directions on how to get there. I was told the issue was caused because 'our booking system has changed and everyone is on holiday'. I suggested it was lucky that I had called and chased my appointment, or else I would be registered as a DNA - this did not go down well.
I duly had my endoscope, and biopsies were taken. I spoke to the consultant who carried it out, who obviously couldn't give me a diagnosis until the cytology had come back. After a week of anxiety between the colorectal nurse calling me with the CT results, and the panic about not being sent my endoscope appointment, I was feeling pretty wiped out as you can imagine, so the care he took to talk to me was a highlight.
Since then I have still not had ANY letter, call, or hint about what the results of the biopsy were. I am still in the dark as to what I might have growing inside me. I have received no letter about ongoing care, or any care plan at all. I am still waiting to hear ONE MONTH later.
Come on Addenbrookes ,this is cancer we are talking about and you have left me in the dark twice now. I would like to know what is going on, and to have someone apologise - without making excuses, if that is possible?