OC and Polycystic Kidney Disease and potential reoccurrence

[Fourbytwo93]

Hi all,

Wondering if anyone here has a kidney condition/impairment of kidney function as a pre-existing condition to OC. My lovely mum has managed her kidney disease throughout her adult life and now in stage 4 chronic disease with a function of under 30 eGRF.

HGS OC bulldozed into our lives in Dec 2023 and she swiftly had a radical hysterectomy in Jan 2024 under UCLH. Surgery fully removed all visible disease, reduced CA125 from 397 to 76 and she then went on to a cycle of 6 carbo only chemotherapy (adjusted dose based on her reduced kidney function). A few complications along the way so lots of gaps between chemo and finished up at 5 instead of 6. CA125 lowered to 51. No maintenance drug prescribed due to risk against kidneys.

Mum had her post chemo scan in late Aug 2024 and thankfully came back all clear. We’ve had an amazing few months of ‘normal life’ with little worry/anxiety and even managed to get away on a family holiday.

We’ve just had her 3 month check up and devastatingly have been told her CA125 has roughly doubled to 101. Doctor ordered CT scan immediately and we were back at UCLH two days later, now awaiting scan results which may or may not come before Christmas; no one has specified but hoping we’ll find out sooner rather than later. Scan was completed without contrast dye as it is a risk to her kidneys. As far as I know without any dye it is harder to spot any possible tumours. I feel like we should push for another scan with dye just in case. Any experiences of CT scans being clear but actually they are not?? What do the next steps look like?

The main thing on my mind right now is that I’m struggling to find much info on both of these diseases together. I’ve come across some studies that suggest chronic kidney disease can potentially elevate CA125 but we don’t know what mum’s baseline was before OC. It’s a bit of a niche and haven’t come across many who are already battling another chronic condition, would be very grateful to get some insight and hear of any relevant experiences.

Whilst I keep trying to remind us all that this could just be a ‘blip’ and that we’ve climbed a whole mountain and now equipped with so much knowledge and experience, I feel like I have so many questions and in limbo again. We could be teetering on the first reoccurrence and it’s just so disheartening. Hoping and praying it’s not but also trying to remain realistic and pragmatic. Any advice would be so appreciated.

Didn’t plan for this to be so long! Thanks for reading and wishing you all a wonderful Christmas xx

[DianaPrince_]

It’s normal to feel like you’ve barely caught your breath from the initial diagnosis and treatment only to face another possible battle.

For me focusing on the practical (tests, next steps, second opinions) can help channel anxiety into productive conversations with the care team.

I am not a doctor, or have any medical training but as far as i know CA125 is not an entirely cancer-specific marker. It can be elevated in conditions such as endometriosis, inflammation, infection, and—importantly—sometimes in advanced chronic kidney disease.

Because you don’t know your mum’s baseline CA125 before her ovarian cancer (OC) diagnosis, it can be tricky to work out how much of the rise is disease-related versus kidney-related.

A significant jump in CA125 (like from 51 to 101) is concerning, especially in someone with high-grade serous (HGS) ovarian cancer, but it does not always mean recurrence—simply that further investigation is warranted.

Oncologists often look at the rate of change and any trends over multiple tests rather than isolated numbers in cases where CKD or other non-cancer factors might play a role.

It is true that CT scans without contrast can sometimes miss small lesions or tumours compared to contrast-enhanced scans. However, radiologists familiar with your mum’s situation will do their best to interpret non-contrast images carefully. They may use additional sequences or scans (e.g., MRI or PET-CT without certain contrasts) to help compensate.

If there’s any ambiguity, the team could consider alternative imaging—such as MRI with gadolinium-based contrast (though that also has considerations in kidney disease) or a PET-CT (which uses a radioactive tracer rather than iodine-based contrast). It’s absolutely worth discussing these possibilities with your mum’s oncology and nephrology teams if there is uncertainty.

hope this helps x