Urgent help – rare adrenal cancer with IVC involvement – need advice on surgery and treatment

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Hello,

I am writing about my wife,  (age 39), who is currently in hospital in London.

She has been diagnosed with a large right adrenal tumour (around 8 cm) with tumour thrombus extending into the inferior vena cava (IVC) and hepatic veins. Doctors have told us it is an aggressive cancer, possibly adrenal cortical carcinoma, but final biopsy results are still pending as it is a rare case.

The situation is very complicated:

- No distant metastasis was found on PET scan (which gives us some hope)
- However, the tumour has grown into the major blood vessel (IVC)
- UK doctors are saying surgery is not possible and are planning chemotherapy only
- She is currently being treated for infection before chemo can start
- There have been delays in diagnosis, reports, and referral to specialist centres

We have received a second opinion from Apollo Hospital (India), who said this may still be potentially operable with complex surgery (adrenalectomy + IVC thrombectomy) in a specialised centre.

I am very confused and worried.

My questions:
1. Has anyone experienced similar adrenal cancer with IVC involvement?
2. Is surgery ever possible in such cases in the UK or Europe?
3. Should we urgently push for referral to centres like King’s College Hospital or Royal Marsden?
4. Is it worth considering treatment abroad for such complex surgery?

I am trying everything I can to save my wife. We have three young children, and this is extremely difficult for us.

Any advice, experience, or guidance would mean a lot.

Thank you very much.

  • Hi.

    So sorry to read about your wife.

    Welcome to our Community. I have had a look round for you and the only posts I can find on Adrenocortical carcinoma are in the Kidney Cancer Forum so you could try posting there.

    I'm afraid we can't give medical advice but if you feel your wife might get better treatment at a more specialist centre then I would push for a second opinion at a centre that has experience of this rare cancer.

    Hopefully somebody can add their personal experience in the kidney cancer forum so click on the link I made and just copy/paste your post there.

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

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    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

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  • Hi thanks you for your message and advise sure I will do that