Third recurrence and elevated AFP but nothing on scans? So confused and scared 😞

Hello all,

My mum was diagnosed with IIIC ovarian carcinosarcoma in June 2013. Various chemo and surgery later, she was clear. In October 2015 it returned, and she did further chemo then underwent the HIPEC surgery in March 2016.

Now, May 2017, her CA125 is elevated to 118 (up from 7 at her last test 6 months ago) and the PET/CT scan showed deposits on the peritoneal lining. It's heartbreaking, especially after the intensity of the HIPEC - we'd been really hoping that'd be the end of it. But she's started chemo again and we've just gotta get on with it, she's historically responded very well to it so we're hoping the case remains the same.

What's more concerning is her Alpha Feto Protein levels. These went from 500 at the first blood test less than two weeks ago, to 4000 today. But PET/CT scan showed nothing on the liver, lung or colon, which according to my limited info are what an elevated AFP can indicate. Her liver function tests were also perfect and she's actually physically feeling great.

Has anyone gone through anything similar and can shed any light on this? The levels are increasing at an alarming rate and her oncologist actually said "I don't know what this is". She's going for a second opinion of course as well as a liver specialist but I'm struggling with the wait, so would appreciate any advice at all from anyone here. I'm terrified, were all so scared and confused 😞

Thank you all in advance.

12 Replies

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  • Hi Mayski - I haven't faced this particular issue but just wanted to reply to let you know everyone here on this forum fully identifies with the fear and "rabbit in headlights " scenario - please stay strong for you and your mum - you sound a lovely caring daughter and together as a family you will get through what sounds to me like a bit of a blip which our esteemed medical friends can't explain - it happens.

    Your mum is feeling well so concentrate on that and try to enjoy your days - you're not alone with this! I'm sure someone will be along with experience of this - keep the faith! !

    Love Maz xxx

  • Hi Maz. Thanks so much for your message, I really appreciate your kind words. It certainly does make things seem less scary knowing we're not alone in this.

    I'm definitely keeping positive around her, it's when I'm alone and I let my brain wander that things start to feel terrifying. Just need to keep it under control!

    Lots of love, hugs and positivity to you xxx

  • hi

    I'm not familiar with AFP levels myself, but just thought I ask if she was checked for mets in brain and bones just because those are usually well hidden places and rarely checked...

  • She hasn't, no, but thank you for flagging. We hadn't thought of brain or bones so I'll definitely ask at her next appointment...

  • meanwhile you can search (google or on ncbi website) if APF levels are known to be related to mets to brain, bones and so on

    most doctors will say it's rare that ovca spreads to those places but if nothing can be found...I guess all possibilities have to be checked

  • I have to say I am not familiar with those proteins. I wouldnt go near Dr Google as he can frighten the living daylights out of us. You are right in having a second opinion for your mother but if her specialist doesnt know what is going on then we certainly dont. Maybe ring the Ovacome Helpline and see if the Nurse there can help you at all with your questions. In the meantime, be kind to your self, focus on good days your Mum has and not on the negative side of things. Wishing you well

  • Thank you suzuki. I definitely agree with you that Dr Google will do us more harm than good. I hadn't thought of ringing the Ovacome Helpline - thank you for the suggestion and I'll definitely try that.

    Wish it you all the best too.

  • I wonder if there's a germ cell component to her carcinosarcoma. I have germ cell ovarian cancer which they originally thought was mostly carcinosarcoma. My markers are ca125 and AFP.

  • Oh. That's a thought. It hadn't crossed our minds but that would actually make a lot of sense, wouldn't it? She's seen a liver specialist and he said there's nothing on the liver, and that potentially the AFP will go down with the CA125 if she responds to the chemo. So maybe that's it?

    I'll put it to her oncologist and get his views, but thank you so much! How are you doing?

  • Pretty good. They had misdiagnosed me with Carcinosarcoma and given me Carbo/Taxol but it turns out I only have Germ cell so once I get the right chemo, (BEP) there's a good chance for remission, even cure. Germ cell is often very treatable.

  • As a matter of interest, how was it discovered your diagnosis was wrong? I was diagnosed ovarian carcinosarcoma from a biopsy. Following my operation that diagnosis was confirmed with high grade serous elements.

  • I got my pathology redone at Memorial Sloan Kettering in NY when I joined a study there. It was originally done at Vancouver General in BC after my operation.

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