Gct recurrence

Hi I'm new to this. My sister age 39 had a 8cm sex cord stronal tumour on her Fallopian tube and 2cm tumour on rectum. She had surgery and started BEP but had an allergic reaction so was changed to taxol carboplatin, finished in May. She has 2 small children.

Scanned 4 months after chemo stopped and there a multiple nodules in the abdomen not suitable for surgery as per Gynae here in Ireland.

Is there anywhere you would recommend us to go with her for a second option. Or any other oncologist anywhere in the world that specialise in this area? She's now on maintenance weekly taxol and Avastin. All help very welcome thanks. Feel like there must be more we can do.

21 Replies

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  • Hi lovely and welcome to the family,

    If she can get there go to the Royal Marsden for a 2nd opinion there is a Doctor there who is amazing from what others have said xxd

  • Thanks for your reply. We are going to see Dr. JL in London next week. Have you heard of him. We could try the Royal Marsden also. Is there a specialist in gct there?

  • From what other ladies on the site say it’s the best place for ovarian cancer xxx

  • Hi there,

    So sorry to hear about your sister.

    I don't know where you are in the country, but I am in the west and been treated at UHL, my oncologist there said my cancer was also inoperable.

    I went to St James Dub for s second opinion to a gyno/oncologist and she was very helpful. If you could get referred there to Dr O'D.

    I hope this helps.

    Good luck,

    Ann Nora

  • Hi Ann Nora, my sister is with Dr. O'D. She is fantastic. I suppose we are just wondering if there is any other experts that we could go to see. It's so rare here and we are very desperate for my sister to see her children grow up they are 4 and 6 years old. X

  • Hi,

    I see then my next step would be the Marsden, the ladies here will guide you.

    Best of luck, I may need this myself.

    Ann Nora

  • Suzuki

    Can you help here, you have so much more information?

    Thanks

    Ann Nora

  • Hi Annnora, you could send Suzuki a private message. That way she should be alerted to the fact her expertise is needed. Go on the magnifying glass tick on there put in the person you want to contact then send her a private message good luck Take care Cindyxx

  • Thanks Cindy

    Thats what I will do.

    Hope your well.

    Ann Nora

  • Hi Ann Nora, I have just notice Suzuki, has responded to your post.

    What would we do with out the lovely people on here. Take care Cindyxx

  • Yes Cindy,

    Suzuki is good for us here in Ireland as she has a mountain of information.

    Ann Nora 🍀

  • Hi Ann Nora, that is what you need. I have read quite lot of her blogs & she does seem to be very knowable. Take cars Cindyxx

  • If you type '@'and then the members names without space between them it becomes a notification... suzuki !!

    Sx

  • Hi Sunfleury, that's a much easier way thanks for that👍Cindyxx

  • I would recommend Prof F at Hammersmith hospital

    LA

  • Hi, there just saw the post now, I am really sorry your sister has had a recurrence so soon. I would suggest a second opinion. I understand that the Royal Marsden is good. I will pm you

  • I’d say either the pioneering surgeon at Hammersmith hospital (assuming her case might be surgical) that Lily Anne has mentioned, or else either of the 2 ovarian experts at the Royal Marsden. My recurrence isn’t surgical, and I am now under the care of the Marsden, seeing Dr B, rather than Prof G.

  • Hi

    I'm so sorry to hear about your sister. I was diagnosed in 2015 (stage 4) and my recurrences have all been in the peritoneum with with multiple nodules only. I've also been told that surgery is not an option. I had the normal debulking surgery in 2015 and that time I had spread in the liver and spleen but the chemo prior the op got rid of those. I have really great faith in my team here in Dublin.

    I will pm you with some detail.

    Take care

    Juliet

  • I'm not at all familiar with Ireland I'm from the stars but do you have like a GYN Oncologist who could give a second opinion from just the GYN? That's what they did to me. My GP sent to GYN and then the GYN ONC for the surgery. So sorry you and your family are having to deal with this again. It is hard enough the first time. Well wishes and prayers for a better option and continued health.

  • Yes we have opinions from oncologist and surgical gynae here in Ireland. Just looking to get second opinion in London. Thanks

  • I'm so sorry your sister has gct. I do too. Most of my treatment has been at my bearest speciamist centre in Cambridge, plus an operation in the Norfolk & Norwich Hospital, where I went for a second opinion with a surgeon there. Di

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