Set Back

Hey everyone.

*Warning…..not a positive post I’m afraid, but it’s been a difficult couple of weeks.

Last Monday, I received the news that my CA19-9 tumour marker has shot up to 1262 and I have only now been able to write about it as my mind has been all over the place. This is because this number is only 30 away from my initial reading on diagnosis back in August of last year (2020)

I had a small rise back in January but other than that, my tumour marker has consistently reduced since diagnosis, which was so encouraging. No wonder I was so shocked with this latest result.

What is a tumour marker?

Some types of cancer produce chemicals that can show up in the blood on a blood test. These chemicals are called tumour markers. These will have different names depending on where the cancer is.

CA19-9 (carbohydrate antigen 19-9) is associated with the following:

  • Bile Duct Cancer
  • Colon Cancer
  • Stomach Cancer
  • Pancreatic Cancer.

CA19-9 is used as a diagnositic tool in diagnosis and also used to monitor treatment. The normal range for CA19-9 is 0-37. Throughout treatment, these are used to give an indication of how successful chemo/radiation etc has been. If the munber reduces it could be that you have responded well to treatment and could show tumour shrinkage. A rise could mean that the tumour is growing or treatment is not successful. Sometimes, levels may stay the same and this could mean your disease is stable. (This is a positive even if a little dissappointing at the time)

Although I had expected to (but hoped not to) see a rise of some kind now that I’m on my 3 month break from chemotherapy, I definitely did not think there would be such a sharp rise. Throughout my journey, I have been keeping a record of both tumour markers and tumour size so that when I’m feeling defeated, I can refer back to it and remind myself how far I have come. You can see from the diagram below why I may be feeling slightly alarmed right now.

I had been assured that during my break from treatment, I would be “closely monitored” and should there be a deterioration in my condition, there were options available. With this reassurance, I had felt confident in the care I was/am receiving but unfortunately, I have not heard a thing.

Maybe it’s purely fear but I feel pretty let down right now. I’m not one to constantly phone with every ache and pain, far from it, but I made a couple of calls last week regarding the pain I am in……advice: “try some paracetamol.”

Nothing like being made to feel as though you’re making a fuss over nothing to lift the spirits!

After receiving the news regarding the sharp rise in tumour marker, I genuinely thought I would be getting a call pretty quickly to arrange options.

I haven’t

As a result, I am losing confidence in the team I was so happy to have overseeing my care.

Down times well and truly suck BUT I know better days are to come……