Information and support for those affected by AdrenoCortical Cancer
Our thanks go to the friends and family of the late Eileen Spencer for their donations to ACC Support UK in her memory.
Eileen sadly died of ACC on the 5th of November 2024 aged 87.
Her daughter, Margi Butler arranged donations in memory of her mum which totalled £300.
We send our condolences to Margi and anyone who knew Eileen along with our thanks for thinking of ACC Support UK.
This year’s Annual Patient Information Day, held by AMEND and including all those affected by ACC, will be held on Saturday 1st June, in central Birmingham. Come along and benefit from a 2-hour Q&A session with an expert in ACC, along with other, relevant and interesting informational sessions. Tickets are free but donations are welcomed.
This year’s award is made possible once again thanks to the Elliot Dallen Charitable Trust and their 3-year commitment of £10,000 per year for research into ACC. It was certainly encouraging to receive 3 excellent applications from UK researchers this year which made the judge’s jobs a challenge when selecting just one. However, we are pleased to report that the 2023 ACC Research Award has been awarded to Dr James MacFarlane and team at Cambridge University Hospitals NHS Foundation Trust for their project entitled, ‘Exploring CYP11B1 and CYP11B2 expression as a novel molecular risk stratification tool in adrenocortical carcinoma.’ Our congratulations to Dr MacFarlane and team.
Exploring CYP11B1 and CYP11B2 expression as a novel molecular risk stratification tool in adrenocortical carcinoma
Adrenocortical cancer (ACC) is an unpredictable disease. Even when scans suggest that surgery has successfully removed all the visible tumour there remains a significant risk of recurrence. A chemotherapy drug called Mitotane may be given after surgery with intent to destroy any remaining pockets of microscopic adrenal cancer cells. However, it is often associated with several unpleasant and potentially serious side effects including: the need to take steroid tablets due to low levels of the hormone cortisol, feeling or being sick, excessive tiredness and weakness and liver changes. A recent study (ADIUVO trial) has shown that many patients treated with mitotane do not gain any benefit in terms of their outcome. Our existing tools for matching patients with the most appropriate treatment (precision medicine) are limited for ACC. Enzymes are part of the machinery within the adrenal gland that produce hormones. The levels and function of these enzymes are recognised to change in ACC. There are two enzymes, involved in the final stages of hormone production, of particular interest to our group (CYP11B1 and CYP11B2). We hypothesise that the pattern of change can give information about how likely an ACC is to recur and could be used for risk stratification and to help guide management. A local pilot study has shown significant variability in the staining for the enzymes amongst 25 paraffin-embedded tumour samples. It appears that patchy or reduced staining for CYP11B1 portends a worse outcome. We suspect that staining a single slice of these large, complex tumours gives an incomplete picture – hence we propose investigating more slices (3-4) in more tumours (75-100) to be able to draw meaningful conclusions with appropriate statistical power. The relevance of these particular enzymes is that levels/activity can be investigated in the tumour prior to surgery via a specialised type of scan (11C-Metomidate PET/CT or 18F-CETO PET/CT). Our hope is that this study could provide a scientific basis for further work exploring the use of 18F-CETO PET/CT scans in the pre-operative setting to facilitate personalised treatment for ACC.
November 10th each year is NET Cancer Day, initiated by the International Neuroendocrine Cancer Alliance, of which AMEND (and therefore ACCSUK) is a member representing genetic neuroendocrine tumour syndromes. To better explain the link between NETs and RETS (rare endocrine tumours and syndromes), join us for our webinar, NETs in RETS, with Professor Karim Meeran on Thursday 9th November from 18:00-19:00.
On Thursday 9th November, 2023, Professor Karim Meeran from Imperial in London, will give an overview of the relevance of NET Cancer Day to the AMEND communities. This webinar is open to anyone affected by multiple endocrine neoplasia (MEN) or phaeochromocytoma and paraganglioma (PPGL) syndromes, as well as sporadic medullary thyroid cancer (MTC) and adrenocortical cancer (ACC).
Come and find out how neuroendocrine tumours and cancers are related to our rare endocrine tumours, cancers and genetic syndromes.
The presentation will be followed by a Q&A session for you to ask your questions to Professor Meeran.
This event is free and organised by AMEND.
>CLICK HERE TO REGISTER TO ATTEND
We are delighted to welcome Dr Cristina Ronchi to the ACC Support UK Medical Advisory Team. Cristina, a Consultant Endocrinologist and researcher who leads the Adrenal Tumour Service at Queen Elizabeth Hospital Birmingham, is already well-known to ACC Support UK, having been the recipient of 2 Annual Awards for ACC Research, including the 2022 Elliot Dallen Award. She has also attended our Annual Patient Information Day on several occasions and will do again this year to speak directly with ACC patients about diagnosis, treatments and research into this rare cancer. Cristina takes over the reins in the Medical Advisory Team from Professor Weibke Arlt, who moved to a new role at Imperial College in London in 2022.
AMEND’s 2023 Annual Patient Information Day, that welcomes those affected by ACC, will be held in central London, on Saturday 20th May. Dr Cristina Ronchi from Birmingham will be there to answer all your questions on ACC, and there are plenty of other interesting sessions to participate in. We would love to see as many of our members and friends there as possible. For more information on the programme and local hotels, as well as to book your spaces, please visit our dedicated webpage.
AMEND’s 2022 Annual Patient Information Day, that welcomes those affected by ACC, will be held at the Holiday Inn, 25 Aytoun Street, Manchester M1 3AE, on Saturday 7th May. We would love to see as many of our members and friends there as possible. For more information on the programme and local hotels, as well as to book your spaces, please visit our dedicated webpage.
