Anyone had CA125 blood test back higher than normal and then not had secondaries?
I’m waiting for urgent scan to check my ovaries after GP checked me out. The CA125 blood test came back higher than normal although not as high as the massive increase they can see apparently. My GP is discussing with my Onc and I can’t start Tamox this week like I was supposed to. Fingers crossed the backache is just me sitting badly and not the referred pain GP thinks it may be…
Der, it’s never straight forwards… Peed off…
Hi Katie, wish you well with test results, just want this back to the top so that someone may be able to give you some answers. Hope things work out ok for you.
Irene
Hi Katie
CA125 is not an indicator used for secondaries in breast cancer as a rule but elevated levels can be an indicator of ovarian cancer apparently. It can also be elevated for various other conditions “including pregnancy, endometriosis, uterine fibroids (benign tumors), pancreatitis, normal menstruation, pelvic inflammatory disease, and liver disease. Benign tumors of the ovaries can also cause an abnormal test result”
I do know of two people who had elevated CA125 but in both cases there was no serious conditioin underlying the result.
Hope your results come back clear too, the waiting is awful!
Fiona
Thanks Fiona
I meant to say Ovarian cancer/secondaries in ovaries as this is what GP talked about after examining me. I’ve had endometriosis and cycts before so have fingers crossed all ok. Good to know about the other 2 you know about…
Katie
CA125 can also be a marker for breast cancer. My CA125 was very elevated when I was diagnosed with breast cancer and since treatment has dramatically dropped down.
elinda x
Hi Katie,
Just wondering if you had your test results back yet? I’m in the same situation and have my pelvic scan this Friday. Then if that comes back negative, they’re going to request a bone and chest scan. Not TOO intimidating.
I have seen that the percentages are very low for ovarian cancer and that it’s more likely a cause of endometriosis or one of the other things mentioned. I’ve pretty much ruled out everything but the endometriosis or, of course, cancer.
How are you holding up? The waiting is absolute torture isn’t it. I hope you’re able to put your mind at rest soon with some good news!
Jillx
Hi Jill
I’m having my “urgent” scan this afternoon. It got lost in the post and then the 2nd one held up in the postal strike. Back ache hasn’t gone, just constant ache like tooth ache?! I’ve been trying to ignore it. Let me know how you get on.
Katie x
Got my results today, they came in last Friday but Doctors and I kept missing each other! I had a telephone message to say not to worry over the weekend and that they would speak with me Monday. Had an appointment today and I have a cyst on my right ovary that they want to watch for another month so I’m having another scan at the end of November. If its not gone or shrunk I have to go in. Soo still waiting - ger. It’ll all be nothing I’m sure, just normal cyst but it’s the waiting.
No Tamox yet, BCN wants me to go in for a chat on Thursday afternoon and apparently the Oncologist will be seing me when I go for radiotherapy on Weds… I’m talking to someone at Macmillon on Thursday to see if they can help with my general anxiety.
How did you get on Jill, have you had your results yet? Hope the news was good.
Take care
Katie
hey Katie - was thinking of you - grr about the having to wait again. Hope the Macmillan people can help too…good luck on Wednesday xxx
Hope everything goes well for you on Wednesday. I kept looking at the pictures on the ceiling whilst having rads at Southampton. You will see what i mean when you go !!
R xx
Oh by the way chipper (and Rachy) I’m on Linac A!
x
oh yes,the ceiling pics ! mine was Linac D ! xx
Hi Katie, I have been told there are NO markers for Breast Cancer so far. I had raised CA 125 and CEA levels and they can be very useful to have! When I get chemotherapy the markers are noticably going down. The numbers I had before chemo were in the tens of thousands and now that I am just completing Chemo again they are down to a number under 30. It prooves that the chemo has been doing its job. It is not the ONLY thing to consider for treatment but when I am feeling “not so good” it usually follows that my “markers” are on the rise. I wish you well Katie and hope all goes well in yur future treatment. I have had BC for 20 years now…and life is good again for me. LOve Val X
Val - I don’t understand your message. You say that there are no markers for breast cancer and then talk about CA125 and CEA - what do you mean?
Katie - I have had a long history of endometriosis before my breast cancer. When I had my scan they also found an ovarian cyst which they thought I would need removed. Luckily at my next scan 3 months later it had completely gone.
Good wishes to all
Elinda x
Hi Elinda, I am by no way an expert but the way it was explained to me, and this has been going on for 10 years now, is that they have not yet discovered a tumour marker that is specifically for breast cancer. The CEA and CA 125 markers are for other sorts of cancer. But what they have noticed is that for some reason these markers can become raised in BC patients. When I have been particularly unwell my markers have been sky high but afrer my chemo, they bocome reduced from the first session. The very first chemo I had reduced the markers by half. They told me there is a relation between the raised markers but to date there is no specific markers for BC. Sorry if I do not explain this very well but this is the best I can do with my woolly chemo brain…3 days to go…Love Val X
Thanks Val and Elinda
I’ve had endometriosis in the past too Elinda and I’ve got my fingers crossed that it’ll go…
I’ve had 2 phone calls from the doctors today - missed both!! - and the DR was busy when I called back, receptionist said he wants to talk to me and will call me as soon as he is free, sooo reassurance or worry?..
Much thought and I’ve decided going with the he’s ringing to reassure me
Val - thanks very much for the information. That makes sense, well as much as it can if you know what I mean! That must be why some doctors don’t use the marker and others do.
Katie it’s horrible waiting for phone calls from Drs - please let us know how you get on…
elinda x
Doc called me this evening. He said that they want to watch the progress of the cyst and the gynecologist will see me in January but that I am to see the oncologist inbetween to see if she wants to push for earlier treatment/removal and next steps, she’s been copied the report etc. V supportive and if I want to push for gyni or worried I can. He’s been really lovely and wants me to keep in touch with the surgery whenever I feel the need - take tissues if I want! Bless. Great that they don’t think I’m a pest and are so supportive. I’m seeing the BCN on Thursday to discuss and she will liase with Onc for me. Surgeon had said at the start of treatment about me having my ovaries removed any way so I’ll see what my team say.
I know that I’ll be seeing the Onc over the next 4 weeks any way as she needs blood markers checking again and reults of this and what the allergy bods say before she’ll agree the Tamox that I’m supposed to be taking. Still vague worry that it’s more of the big C but I know it’s small and they’re taking it seriously so will see what scan says at the end of the month.
Thanks for being there ladies…
Katie x x
Hi Katie
I was told that they can clearly distinguish between a cyst and cancer. I think the cyst is water filled (?) so it has a very different density when scanned.
So good that your Docs are so supportive, it does make a huge difference.
I had a hysterectomy and lots of other gynae and bowel surgery for endometriosis 18 months before my BC diagnosis. The gynaecologist left my ovaries so I wouldn’t go into premature menopuase but I really wish now that I’d had them removed.
What a lot of anxiety we have to go through!
take care
Elinda xx
thanks Elinda