Just a Scared Mum

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Hi everyone,

this isn't about me but my beautiful daughter who was diagnosed last year with stage 4 and has been on levantanib and pembro, with remarkable success. All her mets disappeared, which was a true miracle. She was so ill when diagnosed that I thought we would lose her and the last eighteen months have been unspeakably difficult. Not least because her little girl is only two and a half.

Anyway, after developing pneumonitis, colitis, and the meds messing up her adrenal gland/hormones etc, the team stopped her immunotherapy but kept her on the TKI. There doesn't seem to be any chance of her going back on the infusions again, either, with this particular family of medication. So last week, in line with her treatment, she had a CT and got the results yesterday.

She was told that the cyst on the tumor had got larger and they would be deciding on surgery with an answer on Monday as to whether it's feasible.

Understandably, she hasn't been able to talk in-depth to me about this because, although surgery was always a hope, we didn't think it would happen quite so rapidly. Or at all, for that matter. And she needs time to process the results.

I'm aware of how major this surgery is, as she has a thrombus (between stage 1 and 2, I'm given to understand), but what is bothering me is the cyst. Is this an integral part of the primary or something that develops because of her treatment?

If anyone has any insight on the surgery or the tumors and how they respond, I would be so grateful for your insight and advice. I'm honestly a bit of a mess at the moment.

Thank you all. Blessings.

  • i am so sorry to hear. x

  • Hi Izzy58

    I'm sorry to read the story of your daughter's illness. It must have been a very worrying time for all of you.

    I think you may do better to post your question to a nurse in the 'Ask the Expert' section. On the forum, we cannot give medical advice, but only respond from our own experiences as patients. I haven't heard of anyone, or read of anyone, having a cyst on a tumour, but one of the helpline nurses will be able to respond to your questions. You could phone the helpline to speak to someone.

    I hope your daughter has a good outcome from the surgery, and is able to continue with her treatment going forward.

    Stay strong!


  • Sorry to hear this. It must be such a worrying time for you. Heart️  we're all here to chat with you if it makes you feel better. 
    im 7 days post op. Had my tumour full left kidney removed. 8 cm diameter. X 

    reach out ok xx