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.
Check out our merchandise shop for Christmas Cards, and a link to our online Teemill store containing a huge range of sustainable cotton clothing. All profits go to support our work.
The 2024 Elliot Dallen Award for ACC Research has been awarded to Dr Cristina Ronchi from the University of Birmingham for her project, ‘Circulating cell-free DNA-based biomarkers for longitudinal monitoring of patients with adrenocortical carcinoma’. Dr Ronchi has been awarded £10,000 from the Elliot Dallen Trust, administered by AMEND/ACC Support UK to continue her research looking to better predict which ACC patients are more likely to see recurrence of their disease. We send our congratulations to Dr Ronchi on this award. Read more here.
Registered members will have received an email regarding the AMEND AGM that was to be held at midday on Thursday 31st July. Due to insufficient numbers of votes to reach a quorum, the AGM has now been rescheduled to Wednesday 15th August, with the voting link remaining active up until 6pm on the 14th. If you have already voted, you do not need to do so again. If you haven’t seen an email, please check your spam/junk folder. Thank you in advance to all members who action the email as requested to engage in this important exercise in transparency as required by the UK Charity Commission.
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
The sun was shining on Saturday 20th May in London for our Annual Patient Information Day, and our venue beside the Regent’s Canal was the perfect place to receive all the members of our rare endocrine diseases communities who had booked to attend.
AMEND CEO, Jo Grey, began the proceedings promptly at 10am, giving an overview of the 20-year history of AMEND, of all the diseases we support, and of the plan for day. Next it was time for the 2-hour disease-specific Q&A sessions, for which we were grateful to our volunteer medical expert hosts, including Dr Cristina Ronchi who hosted the ACC session.
After a fabulous and varied lunch, with plenty of time for making new friends and catching up with existing ones, Professor Karim Meeran once again took the floor to discuss why blood test results don’t always reflect the way we feel – even rare endocrine disease patients can be floored by viruses! Psychotherapist from rareminds, Zubyda Azzam, then ran through some coping mechanisms for dealing with the uncertainties of living life with our diseases. Then Assistant Physiotherapy Practitioner, Carrie Beasley, ran through some simple exercises to get us moving again, particularly after surgery.
‘It was a good informative day and meeting and talking with others affected and unique like myself is really helpful and feel-good feelings Thank you.’
After another refreshment break, volunteer, Lizzie Dunn, ran an all-ability yoga session in a room with a wonderful view over the canal – very relaxing! At the end of the day, some attendees stayed on and met with staff and volunteers at a nearby pub to toast 20 years of AMEND. Cheers!
‘A fantastic day! So informative & lots gained. This is a great community with wonderful people. Thank you, Jo Grey & Team’
