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Ovarian cancer

A support group for anyone affected by ovarian cancer to come together, share experiences, and ask questions.


Posted by

Hello All - I was diagnosed with OC stage 4 in June 18, at my last checkup I asked if my cancer had never gone away, as after debulking op and chemo, the lowest my CA125 went down to was 38, six months later it has risen to 407, my CTscan is still NED. The registrar replied that my type of cancer is difficult to treat Refractory. I didn't ask what that meant, I think I was too scared to find out what it meant. Have any of you been told that your cancer is refractory and what is your understanding of the title? 


Posted by

Hi Lyn.

i don't have your experience but thought I'd point you in the direction of the ask an expert page, if you post a nurse will respond within two days, you could also try calling the helpline and asking to speak to a nurse on 0808 808 0000, you should be able to speak to someone on the same day.

Do you have a cns? They are usually a great place to start with follow up questions as they will know all of your history and treatment plan.

lots of love


Posted by

Hi lynn, I haven’t come across that word but thought it might be a good idea to call the ovacome nurse? They will know but they will also be able to give you advice on treatment options should you need it in the future - there’s loads of clinical trials at the moment looking at drug combinations, it can be good to know about these things in advance of appointments just in case.

wishing you all the best x