Tnbc and raised ca125??

Hey

I had a similar situation at the end of my treatment I finished my 6 months of chemo last June followed by a mastectomy in June then radiotherapy in October. 

I ended up with cysts on both my ovaries and had to be scanned twice and they just seem to have disappeared. I had one in November and one one in January. 

I had the same chemo as you and am sure I read that it can cause cysts on your ovaries amongst other things. I’m sorry I couldn’t help you with your response but everyone is different and we all react differently to Medicine. You are in the very best hands and I know it’s a very scary situation hopefully you’ll be more responsive to the AC chemo. I had AC first then carbo/taxi after. 

I hope everything goes well for you and wish you all the best.

xx 

I had my first AC yesterday, God I had a bad night and morning with acid reflux and nausea! Hadn't any side effects at all with carbo or taxol....wondered if I'd had ac first then may have had better response as it seems to be the rolls Royce of chemo but maybe having it post mastectomy will kill off any other cells from my body that may be lurking around so maybe it's 50/50.

Do you know out of my own curiosity what your ca125 level was?

Many thanks for your reply x

Bless you, it’s pretty strong stuff and I guess that’s why you can only have it every 3 weeks.

sorry I do not have any information on my ca125. It’s not something I had even heard of back then so never asked. Sorry I can’t help you there. Hope you start feeling better soon.

xx

I'm in Ireland and here it's given every 2 weeks generally, unless bloods dip it's rolled out 3 weekly.

No problem 're result...just curious...

Thank you again...x

Hello!

We were diagnosed the same week with the same cancer and same size tumour but I had my surgery before chemo.

Before I had cancer I had lady problems with wild periods, no periods and every symptom of menopause you can imagine. My CA125 was raised so I had pelvic scan etc and had a 5cm cyst on my ovary - no symptoms. I had womb biopsy etc etc and nothing. GP said she had been sure it would be cancer. Well yes it was cancer, just not in my downstairs, more in my upstairs but they don't check your breasts while they check everything else do they? You said yourself there are loads of reasons why it is elevated and while you are having chemo I wouldn't worry unless they do - but I would push for the BRCA testing just so you know. Mine was negative by the way. 

Chemo is definitely wreaking havoc in your body although it had a poor response on your tumour. Your lymph response was excellent even though it didn't work so well on the tumour which is really good news for you. My 4cm has 1/5 lymph involvement and vascular invasion which they said isn't so good. But the AC will mop up anything and is the main one for breast cancer so don't be too despondent. 

I know a woman who had a poor response to chemo, had a lumpectomy, more chemo and radiotherapy and she is still here 3 years later and doing amazing. I equally know a woman who had a complete pathological response and a mastectomy and radiotherapy and she has a recurrence after 2 years. I have decided TNBC is the fate of the universe and there is no rhyme or reason to it. All we can do is crack on with the treatment and hope for the best. 

xx

Thank you so much for your reply and reassurance. I have gynae appt tomorrow, so fingers crossed. I feel absolutely fine, no symptoms of anything and recent clear mri scan. My gp tells me she has a few women with raised ca125 in the thousands like me and no reason or cause for it. I'm hoping it's just an inflammatory response to recent mastectomy. They really should do these bloods at staging stage to spot trends. Oncology said they don't do them routinely so they don't know of any others it may have happened to. Yes the ac is strong, the rolls Royce of chemo seemingly, pity I wasn't put on it in the first place, deflating to be told you have a poor response to chemo regime. Anyway I've most of my journey over me with this TNBC, 3 more ac and radiotherapy. 

Again many thanks x