Given my recent luck, it’s quite unusual for an investigation to result in there being nothing to be concerned about. Today was my first appointment in the diabetes and endocrinology department for the follow up on my adrenal incidentaloma. It was 1.1cm on my August CT scan, and not mentioned at all on my November PET-CT.
The waiting room, unsurprisingly, had various diabetes amputees and people in very poor health. As ever when I attend the hospital, I am grateful I am otherwise in good health and don’t have mobility or other complications. One door was marked consultant and out came a middle aged lady, a young woman, and what I initially took to be a late teenage boy with straggly hair, an oversized hoody, and scruffy jeans and trainers. Mum with her daughter and son, I assumed. I was slightly suspicious when he went into a cupboard to get something for the young woman and started a conversation about her next appointment. The penny dropped that he was the consultant, the most unlikely looking consultant I have ever seen.
I guessed it was likely to be good news when I was picked up by the Registrar, not the consultant
The registrar started by asking if I knew why I was there. I told her the tumour had been found incidentally and they had asked me to take a catecholamine test to see if it was causing me to generate too much, or too little adrenaline, and that although it was highly unlikely to be cancerous I was hoping I was being screened for that too. This caused her to ask whether I had a medical background. No, I just research each stage of this journey before meeting with someone.
Next up, she recited back to me the three potential issues I had just given her. She then wanted to check me for stretch marks (still got some from my pregnancies but nothing new), my blood pressure (ok, and helpfully for this, I am not on BP medicine so nothing was being suppressed), and muscle strength (could I get up from sitting without help, could I resist her pressing on my arms, and yes I can easily do these things).
It would appear these things aren’t usually a problem unless they become greater than 4cm. The plan is to do a CT scan in February, so they can see how much it’s grown in 6 months, and take it from there. I told her I would be having CT scans every 3 months at oncology’s request, and wouldn’t that do? Oh no, endocrinology’s scan is specifically without contrast as they see the adrenal gland better that way. Yet oncology has the scan done with and without contrast. What a waste of resources, I can see myself being summoned for scans twice in a very short period. No wonder they don’t have enough people to turn them around quickly.
If I had the ability to reform the NHS, I would start by looking at how it could be made patient centric rather than hospital department centric. I am not sure there is anyone with a joined up view of my care, perhaps the closest is the medical oncologist. You get referred from department to department by letter, and each department worries about its own speciality. No one is taking a priority call that says don’t do that now as it might mess up the thing that needs to be done that is of higher overall importance. And of course tests are duplicated. In the end I do seem to have to become the specialist in my own illness and advocate for myself if I don’t think it is being joined up. I am lucky I am confident and able to do that.
Meanwhile the tiredness from radiotherapy has resolved quite quickly and I am feeling much better.
