I must confess to being thrown yesterday when the consultant at the new hospital I was referred to, used the words "serous" cancer. That was the first time it had come up. It was not used by the consultant at my original diagnosis ,either to me or in the copy referral letter he sent to the new hospital. He said at my diagnosis it was entirely possible I would be able to have just a hysterectomy with no further treatment and I would certainly be able to visit my family in Suffolk as planned at the end of November. He did of course say he was referring me to another hospital for treatment (The new hospital is really in a transport shadow and takes a good hour and a couple of transport changes to get there. There is really no available parking.)
Yesterday I was expecting an update on the result of the Cat and MRI scans I had at the original hospital. It took me a few minutes to realise the senior consultant I saw, was assuming I had been given these already. Then I had to press her to find out the stage assigned. I also felt my diagnosis had changed somewhere along the way from basic endometriod cancer to serous endometrial cancer and asked about this but she was vague. Apart from the Senior Consultant - not actually doing the operation - I have not met any of my team. I was told I will meet them on the day. I have not met a CNS at the new hospital. Does the Macmillan nurse fill that role?
My Macmillan nurse was very sympathetic but of course completely new to my case. I asked her for more information on the scans and staging. She checked in the paperwork she had but was clearly not familiar with it and again did not show it to me. I have not seen a single picture or slide of any scan. Does she even have access to them? I also tried to find out more from her about serous cancer treatments but again I feel it was played down..She said if the lymph nodes removed turned out to be clear, I would not need further treatment beyond observation. Yet it seems clear looking up serous cancer that it is a more aggressive type of cancer and is often followed up with radiation treatment and chemotherapy.
I do not see me going to Suffolk the week after the operation. Are yoj allowed to be driven long distances, does anybody know? I should have thought it risked DVT?
Thinking it over, what I want is more medical information so that I have a complete picture of my case. What the scans showed, how the diagnosis was reached (and if indeed it changed along the way), what are possible outcomes and treatments to expect after the operation. But who to ask? No point in suggesting my GP. - it is one of those practices where appointments are all three weeks ahead.
I am thinking I should go back to my Macmillan nurse at the new hospital. OR should I ask for a meeting direct with the surgeon who will perform the operation? I do have his name? What do you suggest? .
