CA125 Question

[Be-Positive]

Hi All,

I hope you are all well.

I am hoping you can help me with a random question...

So when you are diagnosed with OC you (ususally) have high CA125. I get that and am aware of this.

My question is if you get a reoccurrence, e.g. in Stomach, Bowel, Liver etc. would your CA125 be raised like it was when it was first diagnosed? I know they still always call the cancer OC but after a hystorectomy, I was wondering if the symptoms for it being in other places remain similar re blood tests?

My mum is stage 4 NED currently and have been reading up symptoms to be aware of for reoccurance. I want to make sure that if it does come back we are hot to the mark and get her in with the Oncology team. Our GP is also at our every beck and call so was thinking we could always get a blood test done for CA125 if any symptoms arise that we are slightly worried about in the future, I then thought I wonder if CA125 is something that would happen if her Ovaries are no longer there. I might sound really silly asking this question, sorry if I do.

Thanks for your help once again.

p.s. I am also living in the mind that it will never come back, however I dont think ignorance is bliss when it comes to this as much as I wish I could be. We need as much information as possible so we can catch the b*stard before it has time to blink! xxx

[Katmal-UK]

Hi. There are many that say that the CA125 is not a clear indicator but in my case it was raised for both recurrences . I have had a radical hysterectomy. I use this rather than wait for any symptoms (I have never had a symptom). Hope that's useful. Kathy xx

[Be-Positive in reply to Katmal-UK]

Thanks Kathy, that is very interesting. How often do you have your CA125 taken? The time in-between always sounds too long when it comes to catching it quickly...

Out of interest when you had your reoccurrences how was it discovered each time? xxxxxx

[Katmal-UK in reply to Be-Positive]

Hi. I currently hav e my CA125 done every three months, mainly because I am on a third trial drug. Both times the recurrences were picked up because my CA125 (currently under 3 but usually around the 7 mark) had risen outside of the 'norm'. Both my Consultants ( I'm under 2 hospitals.... long story) believe that for me the CA125 test is a good indicator.

[babsclunn]

Hi there

I am stage 4 also NED at moment my oncologist told me that if Ca markers are raised in initial diagnosis likely they will rise again on recurrence x

[Be-Positive in reply to babsclunn]

Thank you that is useful to know. My mums were raised to around 500 ish... How long have you been NED for?

[babsclunn in reply to Be-Positive]

My ca count was 1500 on diagnosis in November 2013 finished treatment July 2014 been NED for 15 months so far x

Ca at review last week was 7.5 so far so good x

[Ladyone1]

I might be being a bit naive here, but I was borderline stage 2c back in July 2013, had total hysterectomy before surgery my ca125 was 98 then went down to 13 and last blood test was around 13 again. My question is what symptoms do we take seriously for reaccurance, I know it's very rare according to my Dr for borderline to reaccur but as you know we all worry about it. Just lately I've started weeing a bit more and getting cramps similar to period pains, only been in last couple of weeks. Any advice xx

[Be-Positive in reply to Ladyone1]

Have you suggested going for a blood test? Worth a try as a first step I suppose. I am sure lots of women will let you know their advice. I did send my mum a list of key symptoms to look out for which are common symptoms, the thing is any small thing can make you panic when it may not even be related. I have just told mum to go and get checked however small it is. I hope all is well x

[Hidden]

HI Ladies, my first recurrence was difficult to determine, my marker wasnt high at all. However I had pain in the buttock area and couldnt sit down or sleep so Osteoarthritis was diagnosed first. Then I was sent by my best friend, my gp to a Rheumatologist and he ordered mri scan. So it was he who got report first that a recurrence was evident. I would suggest any continual pain unrelieved by paracetamol has to be investigated along with constipation and perhaps bloating and loss of weight. If in doubt, go to your gp and if he is looking out for you, he will make sure any thing unusual is checked. Mine did and that is why he is my bestie. Other recurrences would have been monitored by ct scans and treatment started when clinically well.

[Lily-Anne]

My recurrence for stage 1C was very vague, CA125 was 15 but I had bags under my eyes, something I had before initial diagnosis but went after surgery. Recurrent boil in an intimate place, which had been a problem prior to diagnosis and went for the three years of remission. Back again before CA125 rose. An occasional period like pain, which was weird after TAH, nearly three years post op.

Consultant wasn't really interested in the fact they weren't 'regular' symptoms. I had a raised CA125 of 47 before any investigation, CT returned as NED. Then CA125 102 so another CT which identified a tumor in my pelvis. So a slow burn but with symptoms unique to me.

Hope that helps

LA

[Ladyone1]

Hi Lily-Anne, thanks for reply, my period like pains come and go and I tend to fob it off, as with pains sometimes in bowel, strange ache up bottom, sorry bit blunt there, then Im OK for about week then get constipated for few days but again then I can go weeks feeling fine. I feel like I shouldn't bother doc with these little niggles, Hubby has suggested getting a blood test done privately if it helps. xxx good luck with your journey and really hope you get on OK at Addenbrookes x

[Lily-Anne]

Your symptoms sound a lot like mine, I'd ask GP for blood test, mine sent me straight away when I asked. Fingers crossed for Addenbrooks they said I can be referred as urgent. Oncology at Northampton Monday but not sure it's going to be a happy one lol.

LA xx

[Caroles1]

Hi Be-Positive

I was caught at stage 1 c ,had the tumour removed and a full hysterectomy and am checked every 2 months,my blood for my cancer markers,my stomach and my lymph nodes to see if it has spread. Also every 4 months by a gynaecologist internally.I had a lot of fluid which was drained, but the cancer cells were in it.

After the op I had chemo,3 weeks on one off for 6 months Taxol and Carboplatin

I can't tell you if the CA125 can tell if it has spread to somewhere else,all I can say is how I am being checked to be sure it hasn't spread.

If you see th b*stard,kick it's ar*se for us all !

Best wishes xxx