Blood tests - CA 125 and CA19-9 and frequency

I saw the oncologist for the first time 5 weeks after surgery and then the surgeon who did the op a week later. No bloods before or after either of those appointments.

Oncologist arranging an MRI.

Just expected the bloods tbh - I’m quite interested myself to see what the levels are!

Absolutely. I would have expected it too. If this was happening to me, I would contact the consultant's secretary and ask if a blood test could he arranged. If this could coincide with your next appointment, all the better!

Indeed!

I did - she said if the consultant had wanted me to have a blood test then he would have arranged for one! She copied the request into my CNS - she hasn’t been in touch either so I’m assuming that the consultant isn’t interested in me getting any bloods at the moment….!

Goodness. I'm speechless!  

I might see if the GP will!

Not many people seem to get a CA19-9 blood test - I’m intrigued why I was tested in Jan. The results were very high - 908. Normal result is 37 and under apparently…

CA125 was just 256 by comparison!

I cannot imagine why you are not getting a further blood test, and I think I would want to pursue this. I know you said your CNS has not been very helpful, but your consultant’s secretary should have double checked with the consultant to make sure a test hasn’t been missed. At the very least your consultant should explain why you haven’t needed any more blood tests since you have asked about it.

Sarah xx

Thanks Sarah - I will chase again.

Inwonder if it’s because the surgeon says he believes he got all the tumour out?

He arranged a blood test in my appointment but that was just the genetic one so I suppose the CNS thinks if he’d wanted any others he’d have sorted it when he sorted the paperwork for the genetic one.

Theres also talk of me having a laparoscopic procedure for further biopsies etc so perhaps they don’t think bloods are needed if I’m having further procedures. 

I’ve no idea what the reason is, but sad to say sometimes things get forgotten about, and a CNS might have missed something-mistakes can happen.

I was having a non cancer related surgery last year and presumed I’d need a further blood test as I’d had very many of them in the preceding months before my op, and I’d always needed them prior to my cancer surgeries.

I chased this up a few weeks before my surgery and discovered I didn’t require a further blood test but was glad I’d checked and been reassured. 

I’m sorry to hear you might need more biopsies after already having surgery, but hope you’ll get all the information you need in advance!

Sarah xx

I hope you are doing well post surgery.  Thinking back to my own journey.   I had surgery - then bloods were not taken again until I started chemo - so bloods taken at the start and then each and every time I was due for chemo.  Now I am sitting in quarterly reviews - my CA125 is done each time.   I did wonder about the Ca19 - 9 because of the type of cancer I had but they've not mentioned doing that.   My CA125 was up prior to diagnosis - 106.   x

Hope you’re doing ok now.

What was your level prior to starting chemo? Had it come down from what it was prior to surgery?