Blood tests - CA 125 and CA19-9 and frequency

Hi Glass Not Full 

I can't help with your question but noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list.

Have you been allocated a cancer nurse specialist (CNS), sometimes referred to as a key worker or Macmillan nurse, yet? If so, she should be able to help you with this question. If you haven't been allocated a nurse then give your consultant's secretary a call and she should either be able to give you the details of the nurse or find out for you if you need these blood tests.

Thanks.

My CNS isn’t very approachable unfortunately!

Sorry to hear that

Hi Glass Not Full 

Did you see the replies to some of your questions from the nurses in the “ask an expert” forum? She had put replies to your different questions in a single response to you-if you haven’t seen it, just let me know and I’ll be happy to give you a link to read it.

Sarah xx 

Disappointing but not the end of the world at this stage. But just means I’m having to rely on forums like these and all you kind people!

Thanks Sarah.

Yes, I have seen them thanks - they’ve predominantly signposted me back to my CNS though. Totally understand why but not ideal in my case as my medical team aren’t overly approachable 

That’s really unfortunate. I’m presuming you have tried both email contact and phoning, leaving a message if the nurse isn’t available? The nurses on Macmillan can only normally give general advice as they don’t have access to your records. Have you got any follow up appointments arranged with your team?

It can make such a difference if you have an approachable nurse, and the ladies in the support groups can only speak from personal experience rather than give any medical advice so I’d try to persevere with your nurse contact if you can. 

Sarah xx

I can only comment on the CA125. As a patient in a cancer hospital, this is done as routine whenever I  have a 3 monthly clinic,  or monthly as at the moment when I am on treatment.  Are you due to have any further treatment? 

Thanks.

I’m not sure yet - there is the possibility of chemo but we don’t know if it’s needed yet or not.

I know what my blood results were for both tests in Jan before I had surgery in Feb but I haven’t had any further bloods done since.

I had initially thought I would do - to see if the levels had dropped or not and to maybe help decide if chemo is needed or not etc. 

I wouod think that you would have them done ahead of any consultations.  Do you have an appointment set up to discuss the outcome of the surgery?