Thymoma treatment - GLUCOCORTICOID? - Any experience?

Hello, I'm Ricko and my dear wife is suffering from thymoma cancer. I'm here to seek some help and advice from anyone who has experience. Let's call her Jane, to keep this anonymous. Jane is 52 and has already had two operations to remove cancerous thymoma tumours, both on the NHS.  The first was keyhole by VATS, to remove one 7cm tumour and the second, earlier this year, was to remove 17 of the 18 small recurring tumours. The open thoracotomy was preceded by 4 rounds of brutal chemo that my poor wife found very hard to take. The one tumour they couldn't - or wouldn't - resect - was around her phrenic nerve. It was felt that damaging/resecting the nerve would affect her quality of life, so it was left. Two follow up scans show that the remaining tumour (about 2cm) is growing slowly and this is causing her great anxiety. A much smaller tumour is also present nearby 

Whilst the hospital is keeping a close eye on things, with scans planned for every three months or so, the options for further treatment seem to be limited to chemotherapy (ugh!), radiotherapy and immunotherapy. We hear that there was a similar case in Norway, where the patient refused further chemotherapy and requested to be treated with a steroid called GLUCOCORTICOID. It worked and he was cancer free after a year of treatment! Does anyone reading this have any experience of having received post-op thymoma treatment with this steroid, either on its own (it's often called PREDNISOLONE) or together with OCTREOTIDE LAR.

This is such a rare cancer that very few clinical trials have been carried out in the UK, so we are scratching around for any snippets of helpful information that we can garner, in order to be able to speak to our clinician about considering treament.

All answers will be read and courteously replied to. Thank you!

  • PS: Below is the link to the case study in a Norwegian medical journal about this  patient who was successfully treated.

    https://tidsskriftet.no/en/2023/06/short-case-report/thymoma-pleural-metastases

  • Hello Ricko and welcome to the Cancer Chat community.

    I'm very sorry to hear your wife has thymoma and for the stress and anxiety her remaining tumours are causing.

    This must be very difficult time for you both but hopefully some of our members who have thymoma cancer or have experience of taking glucocorticoid, prednisolone and/or octreotide will be along soon to share their experiences and advice.

    We also have a team of cancer nurses you can discuss this with on 0808 800 4040, Monday - Friday between 9a.m - 5p.m. Our nurses are very insightful and will do all they can to answer your questions and give you the information you're seeking.

    Our thoughts are with you Ricko and we're sending all our strength and support to you and your wife at this very challenging time.

    Best wishes to you both,

    Steph, Cancer Chat Moderator