Update on rising CA125

[N-A-58]

Hi ladies. I hope you’re all as well as you can be.

My mum had a repeat of her ca125 and it’s gone up again. So in jan it was 10, May it was 15 and now it’s 18. Upward trend.

My mum finished 1st line treatment in July 2019. Was diagnosed with HGS stage 3A in Jan 2019.

My mum feels well, with only a slight discomfort that’s getting better in her abdomen.

My question is, I’ve read ca125 can fluctuate for various reasons, but those reasons appear to be for women that have their reproductive organs. So for example, it can’t be fibroids etc causing this rise, because she doesn’t have a uterus.

What reasons, post surgery, can the levels rise that aren’t cancer?

Thank you in advance.

From an overly anxious daughter to a wonderful mum.

[Katmal-UK]

Hi, sorry you have this worry. Sounds like that the rise is slow and still well within normal range. Do you know what your mums CA125 was at diagnosis. Mines never been particularly high but is a good indicator. xx Kathy xx

[N-A-58 in reply to Katmal-UK]

Thank you for your reply.

I just feel so alone in all of this. I don’t tell my mum how worried I am but my brother and I terrified. Our dad passed away 30 years ago, so it’s always been us 3. He said to me today, ‘who will I ring when I have kids’, because we don’t know how long my mum will have left. No one knows but with a raising ca125 we predict it might be more treatment, and how long will that last.

I’m rambling now, I just feel I have no one to talk to and express all of this.

My mum had a raised ca125 of 133 in October 2018 and then two weeks later it was 166. Two weeks after that it was 163 so they did 3 ultrasounds and a ct and didn’t see anything. Had ovaries and tubes removed early Jan 19 and found the cancer then so not sure of it’s level then but it was definitely raised to at least 166.

I was telling my brother about you today and your journey and being 12 years down the line. Long may it continue xx

[Katmal-UK in reply to N-A-58]

I wish I could give you both a big hug, both my parents had cancer so I have been through what you are going through now. Please dont give up hope..... my parents lived for years, I was given a couple of years yet im still here.... If your mum does need treatment then it will be a platinum as she has gone more than 6 months since completion of first line and therefore not platinum resistant. What you need to remember is that not all remissions are the same, your mums next could last a lot longer. I hope your mum gets on ok, please keep us updated xx

[N-A-58 in reply to Katmal-UK]

Thank you! I really appreciate the positive words. We are phoning the CNS nurse tomorrow to see what we should do next. They aren’t overly concerned because of it being within the normal range but that’s two blood tests and two rises and I think they should repeat the bloods again. Think they suggest 2/4 weeks but we’ll see. I really needed your messages tonight. You are an inspiration and so helpful on this site. Thank you thank you thank you xx

[Katmal-UK in reply to N-A-58]

Awww your very welcome, Please do let us know how your mum gets on. We are here for you on the forum if you need a virtual hug, to rant or if you have any question xx

[kadabra12 in reply to N-A-58]

I had stage 3 ovarian cancer which was also in my tubes and also my omentuim had speckles and a 1cm tumour top of my rectum and my ca125 markers were 1100 plus pre op. Im currently havong chemo and tbey have gone down to 9. Normal range is under 35 and even over 35 they are not worried as 80% of ppl can be over and still be cancer free

[Iwillbeatit]

I am sorry to hear about your mum I understand you being anxious. I am in the same position my CA125 was 9 in October , 20 in January and 43 in may. due to covid restrictions no bloods done in June next bloods next week so i too am anxious about results. They would not book a scan till it was over 35 which is what is deemed as normal. I had a scan last week and so i am waiting and for results. I am sorry at this time I cannot answer why they are rising but when I get the results I will let you know as I seem to be ahead. I pray it's not the cancer spreading.

[N-A-58 in reply to Iwillbeatit]

sorry to hear you’re going through a similar journey. It’s crap and I hate it.

I hope things turnaround for you. Please keep us updated.

[Iwillbeatit in reply to N-A-58]

I will please do the same and enjoy time with your mum.

[bamboo89]

There are other causes for a raised CA125 - recent surgery, inflammatory conditions, abdominal issues, bowel diseases, liver problems, even heart problems. All the time it is below 35, its not much to worry about - the time to worry is if it starts doubling, so maybe it gets to 35, then 2 weeks later its 70, and 2 weeks after that its doubled again...

It's an odd thing, CA125; last year, my oncologist asked what I'd done between my previous test and the most recent one, because the CA125 had suddenly halved (it was going up because I had increasing cancer activity in lymph nodes showing on scans, so was around 80 I think, then it halved). I hadn't taken anything or done anything different I was aware of. Over the next few months, the chart they make of it showed the anomaly was the highest reading,not the one that had dropped, because from when it halved, it slowly rose in a steady fashion over the next 4 months. So the real question was, why the spike to 80... no explanation at all, no idea, I hadn't done anything different that I was aware of, although I had had a chest infection at the time it rose to 80, so possibly that was the cause.

Anyway, don't worry about a couple of points increase - your worrying won't change the outcome, it will only make you miserable and anxious, something that is better put off for when you know something serious is going on. Try to enjoy the time you have now with your mum... good luck.

Miriam

[N-A-58 in reply to bamboo89]

Thank you for your message. I hope your coping well with your journey.

The ca125 isn’t a reliable factor but it’s so hard not to get hung up on it. I

[vipervictoria]

I can understand your worry, but usually when the cancer is active the rise in CA125 would be larger - typically a doubling after 3 months. There could be all sorts of reasons behind it - I've had a similar pattern of a slow rise, which isn't a recurrence but probably due to a hernia repair tearing slightly.

[N-A-58 in reply to vipervictoria]

Thank you for your message. So glad to read yours wasn’t a recurrence, I hope it isn’t for my mum too. I will keep you all updated.

[AusTig]

My ca125 on each recurrence has risen consistently with numbers like this. My doctors were concerned that this was a trend and so waited a little while to check the trend and then did petscan. Numbers are so different for each of us. It may be nothing but you might ask them if a check is needed.

[N-A-58 in reply to AusTig]

Thank you. We have phoned the CNS nurse and she is speaking with the doc tomorrow to see what we should do next. I suspect another ca125 in a few weeks before my mums 3 monthly review.

[AusTig in reply to N-A-58]

Yes, that is the way I have gone each time. Waiting is the hard part, particularly in this time of Covid 19. In 2018 they wanted to wait a month or so before checking market with view to having a scan. Fortunately we had a holiday booked so off we went with little time to worry. This time it has been harder as there have been very few distractions.