Hello, my Mum was diagnosed with 3a low grade fallopian tube cancer last year. She had a total de bulking, no chemo but is taking letrozole. Her CT scans have come back clear but the ca125 has now risen from 35 to 210 in 3 months ? I have read (everything) that the ca125 is only a marker. Has anyone else had experience of clear CT scans and rising ca125. Do CT scans get everything or should she ask for a MRI ?
Reading your stories is very humbling and much love to you all.
Catherine
Did she get covid vaccine?
Yes, she has had the two vaccinations
How long ago? The vaccine is causing many CA125 to raise for a short time then seem to resolve back down with time.
I believe sometimes, only from reading on here, that ct scans may sometimes not pick up low level disease and that a Pet scan may be better and show more. Perhaps you could ask her team if this is the case and if this would be beneficial for your mum? Alternatively you could always discuss with the ovacome team who I am sure will be able to advise what the next best step would be.
I would recommend asking for a pet scan
Sorry to hear this,I would also recommend asking for a pet scan as ct scans only pick things up once they are a certain size.
Thank you so much for the advice. x
Yes I'm as in agreement that a Pet CT is better. Although CA 125 is a market, a value of 125 cannot be ignored.
Hi Catherine
My CA125 is also rising alongside clear scans. I had ultra radical debulking in September last year and my CA125 was a constant 27 afterwards until I had my first Covid jab. Then it slowly rose up to 53. After I had my second jab it rose to 119, then 153 and the last blood test two weeks ago had it at 232. Both the oncologist and my consultant couldn’t say why this is happening. After I posted on here, I have had quite a few ladies on the forum come forward with similar issues. I contacted Target Ovarian Cancer who said that as the vaccination is still quite new, no research into this has been done yet but they have had many similar requests for information. I hope this helps, and send my best wishes to your mum.
Jan
Thank you Jan - this is most helpful, really appreciate you sharing. x
Hi Catherine. I can only concur with the other ladies in that maybe a PET scan could reveal more, even for low grade OC. Alternatively, could a keyhole 'look-around' / explorative laparoscopy be considered an option, to see if anything is going on inside?
My own low-grade recurrence was marked by a rapidly rising ca125. A PET CT scan showed activity in a few lymph nodes in my pelvic area and the following laparotomy (which I opted for, instead of a key hole approach) confirmed it was a recurrence in lymph nodes.
That doesn't necessarily apply to your mom though, and maybe/hopefully a clear scan means exactly that...
All the best, Maus.
Thank you Maus, I am going to suggest a PET scan to my Mum. I really do hope you have a successful treatment for your recurrence. Catherine x
Id get a second opinion things happen so quickly with ovarian push for more answers . Wish I'd have done that at the beginning of my journey . The CA125 might not be a true indicator with some woman but it certainly is with me. And reading other posts the suggestion of a pet scan is a great idea it did actually show a true picture of me which other scans hadn't . Good luck sending love & hugs to you both.SheilaFxxx
Thank you Sheila, yes we are the same, wish we had been more 'pushy' - we seemed to be waiting and waiting for some kind of diagnoses at the beginning. Thank you again and sending loads of hugs to you too. xx
Hello cath_koala,
I'm sorry to hear that you and your Mum are having a worrying time because of your Mum's CA125 level.
Your Mum's team will be able to advise on the suitability of a PET scan as while the scan may be suitable for some, it may not be for others.
Have you seen our low grade information booklet? Here is a link if you would like to have a look:
I hope this is useful. If you have any questions, please don't hesitate to contact us on 0800 008 7054, email support@ovacome.org.uk or send us a DM on the forum.
Best wishes,
Cathryn
Ovacome Support Service
Thank you Cathryn - Yes we read the booklet when Mum was first diagnosed - it was a great help and support.
Hi. As others have said often a rise in ca 125 occurs when the cancer is too microscopic to see on ct scan. And low grade is slower growing so the consultant may think it’s better to watch and wait. I have high grade but my onc says studies show that treating it earlier doesn’t increase overall survival, so I wouldn’t panic. On the other hand you can push for more explanation.
Hi Catherine. Can I ask if your mum is under a specialist centre? Low grade is so rare that often the local oncology units are not really aware of treatment for this.
My mum also has low grade, diagnosed in 2010. She was on letrozole for 5 years before being moved on to tamoxifen, then a trial.
Do you see your Mum’s CT reports? Was there any residual disease left? In my mum’s case, she only had one solid tumour which they could monitor on scan but there were active cells which would not be picked up as they are too small. That’s why a PET is recommended as it picks up the active cells. But obviously that is down to your mum’s team.
Charlotte
Hi Charlotte Thank you so much for your reply.
Yes my Mum us under a specialist at the Freeman Hospital in Newcastle. I did not see the CT scan as this time my Dad went into the appointment with my Mum. Mum opted to not have the chemo as it was deemed the full de-bulking had been a success. The CT showed no evidence of disease only some fluid around the spleen. However I will be (gently) advising Mum to ask for a PET scan - next appointment is Aug to see if the ca125 has risen again.
Hope you and your Mum are doing well and sending big hugs and love in these strange times.
Catherine
Hi again. Mum is under the Royal Marsden and I know there are many ladies at the Christie as well as there are consultants/professors who are experts in Low grade at these hospitals. Just for your info in case you want to explore other options in the future.
It is scary when you see a rise in CA125. We don’t ask for it any more but it’s been nearly 11 years since mum’s diagnosis - not that we are complacent!!
Take care of yourselves
Thank you so much Charlotte and what a warrior your Mum is - 11 years certainly gives me hope. Take of you and your Mum too. x
Rising CA125
Rising CA125
Diagnosed - Low Grade Ovarian Cancer 
Low Grade Ovarian 
Recurrence for clear cell ovarian cancer
