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

Venu 2 months ago

4 replies
18 subscribers
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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.

Beesuit 2 months ago

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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Venu 2 months ago in reply to Beesuit

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

KarenSteveB 1 month ago

Hello, I was diagnosed in February 2924 with Adrenal carcinoma cancer. At the time my oncology team said I was terminal as the tumours had spread into my interior artery and heart but luckily my Endinctonlogust new of a specialist team in Sheffield based between the Royal Hallamshire and Royal Northern I was pretty much the same as your wife and the Sheffield team said as long as there was no further spread they would consider me for surgery . Luckily the PET scan showed no further spread and I proceeded to go see the team in Sheffield . The specialist team is headed up by Prodessor Newell Price whio is a specialist in all Endocrine and Professor Saba who was the specialist surgeon who arranged an MDT to debaulk my tumours in March 24 I had the surgery and this team were amazing they managed to remove all the tumours present and I could nt be more thankful to them . I then proceeded to be passed back to my oncology team in hull were I have just completed 2 years of adjuvent Mitotane and am now going into the regular scan and check up stage at the moment I have had no reoccurrence Please before you start chemo and think of going to India either get your doctors to contact Professor Newell Price or contact him yourselves. They truly are miracle workers .I wish you all the best and good luck

Kind regards

Karen

KarenSteveB 1 month ago in reply to Venu

No problem I wish you all the best xx