Hani Gabra talking about ca125 and what changes are measured and what they mean.

[Nicky100]

Hi beautiful ladies,

A few ‘ newbies’ have asked about worries over ca125 tests and what they mean etc.

I have attached a clip by Professor Hani Gabra who has done a series of short clips on YouTube that are worth watching and simply and clearly explain more about ca125 tests.

I hope it helps. He is a phenomenal Consultant.

m.youtube.com/watch?v=dSreU...(Not working as expected?)

Love to you all, Nicky xxx

[lesleysage]

This is great of you, Nicky. That whole team at West London Gynae Cancer Care Centre are terrific, I think.

Hope you are holding your own well.

Warmest wishes, Lesley

[Nicky100 in reply to lesleysage]

Thank you Lesley. I’m doing well thank you. Ca125 is low and I’m feeling better than the last 3 years. I’ve just come back from a trip to Africa which was a ‘travel-test’ for me to see how I felt. I hope you are doing OK? x

[lesleysage in reply to Nicky100]

Excellent news - which bit of Africa? And hope your body stood up to the 'travel test' well enough to allow you to do more, if you wish.

Christina & Alan removed my two tumours of clear cell, close to the aorta & renal artery, in Feb 2013 and although my oncologist at Addenbrookes chose to give me different chemo from that which Hani suggested, I have, so far, had no recurrence. Listening to experts about the behaviour of clear cell, I am pretty sure it was the skills of Christina and Alan that have given me my life. On the fifth anniversary, I sent them both a few bottles of wine and the whole team some chocolates as we are just delighted with what they have given to my life and hence to us.

My stamina and strength were very limp and flaky for a couple of years after finishing chemo (when I was just over 67), but with gentle and consistent exercise, I've 'plateau-ed out' this summer (at 72) so now hope to stay at this capacity for as long as I can. Many days feel hard work but what matters most is that my 'all round wellbeing' is simply the best it can be.

Keep enjoying who you are, Nicky.

Warmest wishes, Lesley

[Kryssy]

Hi Nicky. Thank you for posting. It's a shame he said the CA125 is not really a good indicator for prediction - like the mammograph for breast cancer I'm assuming he meant. One day perhaps there will be a similar test for all women and it will save many lives. My oncologist doesn't take my readings as an indication of what's happening inside me as he says that my PET scans are the most accurate way of monitoring me. Shame really as I just had a little drop of 30 points. I thought he would be really pleased about that but the scan showed that my main tumour had grown - not a lot - but enough to change chemo and try something else. Still, for a lot of girls, the numbers matter. Kryssy xx

[Janet235]

Well done for posting...there are still too many ladies on this forum ( perhaps mainly new) who either don't seem to read other people's posts with their result in the 100's or 1000's - like mine usually is!- or don't believe them with regard to the CA 125... I find I can't reply anymore to the posts of women with their numbers well within the norm range. I can't work out whether they are really spooked by anything regarding their diagnosis or whether the doctors are not doing a reassuring enough job in explaining the at times In / significance of the result, or putting it in perspective with their symptoms or 'proof' one way or the other by scans, what is really going on....

Am I being harsh?

Janet 🌈

[Cyndyc in reply to Janet235]

Thanks Janet. I was down to 21 in July and it just spiked to 177 here only two months later. I don’t see how a tumor could grow that fast and this has had me crying for days. I am wondering what a huge jump like that could mean. I did have double bowel resection and have had pain from that and the hysterectomy... now I am thinking it’s the cancer where before I figured it was scar tissue. Have you or anyone you know jumped that high so fast? In only 8 weeks? I thought it was more of a steady rise. And my platelet number is high too... 25 over normal. Am seeing the doctor this Thursday 😞.

[Nicky100 in reply to Cyndyc]

Hi Cyndyc,

I understand you are very worried. And it’s a scary time for you. I hope the Dr can answer your questions.

Your ca125 rise looks fairly steady to me, so ( even though it does not seem like it just now) , this could be a better sign. Mine jumped into the 3000+ in 2 months, so focus on the low numbers even though you are scared.

It sounds like you are being seen quickly and being monitored by a good team.

Good luck love Nicky 🌈

[Cyndyc in reply to Nicky100]

Thanks for responding Nicky. So I guess mine is a normal spike .. it just seems like such a big one... but 3000 would have had me paralyzed with fear so thank you for sharing this. This is all so new to me and I have only had this for not even a year. So have you decided to go another round of chemo? Could I ask how long you have been going up and down like this for you? I am also doing alternative treatment and increasing my dosages. Which helped me before.

Thanks so much in advance for your response. God Bless you.

[Nicky100 in reply to Cyndyc]

Hello ❤️

I totally understand your worries and why you are so scared and this is so normal to be frightened. I just want you to know what you are going through is normal and it is so easy to panic (I did for weeks).

I had a recurrence last year. The rise I mentioned above. But I researched/upped my alternative protocol which lowered my ca125, before more chemotherapy and surgery.

I was first diagnosed in Aug 2015.

Where are you based? Do you have local support there?

I am here if you need me or have any questions. I know you are scared. We are all here to help.

Nicky xx

[Cropcrop]

Thank you for sharing this Vicky, it’s very interesting. I do think we can sometimes get a little obsessive about the marker readings but often, alongside normal bloods, it’s the only test result we readily get to know about when going for routine check ups.

I’m thrilled you’re doing well and feel good too. Keep on keeping on lovely ❤️Xx Jane

[Lindaura]

I think this offers a more thorough understanding of CA-125:

youtu.be/2Cxz8Ij5lVs(Not working as expected?)

Best wishes,

Laura

[Colman in reply to Lindaura]

That was nice and easy to understand thanks for posting it.

Claire x

[Grace123]

Thanks Nicky and Laura for posting - very helpful.

xx Sundra

[thomas62]

Really glad you doing well Nicky. Hope you're now booking more holidays - near and far! Thanks both to yourself and Laura for posting re. CA125.

Gwen xx