I've had a call from my consultant. The news is very good.
The PET scan shows no active cancer.
It is over a year since I finished treatment I have had a complete metabolic response. This means that treatment has stopped the cancer. It may be in my body but it is not active at the moment. This is the best possible news.
Regarding surgery, they have put my case to a national forum and asked for opinions. These were mixed, some said have surgery to mop up anything that may be remaining. Others said the the risks and harms of surgery would be likely to out weigh the possible benefits, especially as they cannot currently see the original tumour.
I don't need to decide about surgery right now. My surgeon is heavily on the side of watch and wait, but he is happy to speak to me to discuss the risks and benefits.
In the meantime I am continuing with the plan for CT scans every 4 months instead of every 3
I am so happy to be able to share my good news.
Wow how amazing. I’m new here. Only my second visit. I’m still a bit scared to read peoples testimonies. I’m sure I will become braver! I have a malignant tumour in my duodenum, undiagnosed since November, discovered about 3/4 weeks ago. Chemo starts a week Monday I believe. I don’t actually know because I have only seen one consultant for 10 minutes when I was in hospital and he visited me to say it looked malignant. I haven’t seen a doctor or anyone for months. A nurse told me over the phone I had inoperable cancer. I’m hoping for the best. I have no idea what is going on. It is so scary. They just dismissed me with a bag of drugs and a phone number. Apparently I’m seeing somebody next Friday. Sorry to go on. It’s a case of desperation my end. I’m sure it is for everybody. Thank you. Many congratulations. You must have been on a long hike towards where you are now. Well done! Julie.
You seem to have had a tough and lonely journey so far. If you read my bio you will see my journey. It looked bleak when I was told my cancer was inoperable, and because duodenal cancer is so rare there aren't many stats to go on, those that there are look grim, but I responded much more completely to my chemotherapy than expected.
It seems very hard to be told that you have inoperable cancer over the phone.
Good luck with your appointment on Friday, I found it was useful to write down questions before my appointment and to try to tick them off as they were answered. I had to attend most face to face appointments alone due to Covid, but I had my phone on speaker so that my husband could join in. It was useful having him there as there is so much information to take in, I would not remember everything said on my own.
Good luck and do keep in touch.