World MEN Conference 2016
This international scientific meeting on multiple endocrine neoplasia disorders is eagerly awaited by us as it only happens every two years and of course, because it focuses purely on our endocrine conditions. We were even keener to attend this year, given the involvement that patients had into the organisation and the running of the 3-day event. Our colleagues at the Dutch MEN patient group, Belangengroep MEN were heavily involved as a member of the organising committee, in developing a patient/nurse symposium running parallel to the main scientific sessions (which patients were also able to attend), in running the registration booth for the entire conference and in organising and hosting all the social events for the patient attendees. In addition, it was being held in a trendy venue (playing host simultaneously to a karma sutra conference!) and it was being held in Utrecht; an absolutely beautiful canal-based city. And so it was that all the stars were aligned for a brilliant conference!
The main scientific sessions kicked off on Thursday 29 September with ‘What’s hot in MEN1’ from AMEND Patron and Medical Advisor, Professor Raj Thakker (Oxford). Of course, hot topics in MEN1 included the slightly increased risk of breast cancer (at a mean age of 48), although more research is needed in this area. The French MEN research database has shown that symptoms of MEN1 tumours can arise earlier in life than previously thought (3% by age 5, 14% by age 10), supporting the recommendation in the 2012 MEN1 guidelines for beginning screening at an earlier age than originally suggested.
Dr Havekes (Maastricht) ran through the hot topics in MEN2/MTC. To date over 100 disease-causing gene mutations have been identified and Dr Havekes suggested that the whole gene may be sequenced in the future (rather than a specific area of the gene), since some people have proved to have more than one mutation, which may be linked to a worse outcome or more aggressive disease (including resistance to MTC drug, vandetanib). He emphasised that medication such as omeprazole (PPI) and glucocorticoids (hydrocortisone and fludrocortisone) can interfere with the results of calcitonin testing (hence the usual nil-by-mouth prior to this test). He also reminded the audience that DOPA-PET CT imaging is useful in locating MTC, but that it is underused and is under-reported in the American Thyroid Association (ATA) guidelines. Consequently, European radiologists do not endorse these guidelines.
The patient and nurse’s session began on Friday 30thSeptember with sessions on genetic counselling, nuclear medicine, somatostatin analogues and target therapies. One session saw Professor Dekkers (Leiden) invite feedback from the audience on where patients feel that future research should focus. I was keen to ensure that more thought is given to inter-disciplinary research (rather than that confined to endocrinology), particularly in addressing the significant impact on quality of life that ganglioneuromas in MEN2b can have. This would involve input from gastroenterology as well as endocrinology. I was pleased to be invited to give a presentation to the audience on issues surrounding starting a family, being a parent of a child with MEN, and talking to children about MEN, informing the audience on AMEND’s 2014/15 work to develop children’s information resources.
On Friday afternoon, all attendees we were treated to a fascinating session on quality of life in MEN1 in the main session. This began with an excellent interview of a brave MEN1 member of the Dutch patient group, Belangengroep MEN which led beautifully on to two separate presentations about MEN1 Quality of Life studies undertaken in the USA and The Netherlands (unknown to each other at the time). Quality of life in MEN1 patients had been compared to the average population in each country with very similar results; that of a significant decrease in quality of life in MEN1 (slightly more so in the USA than in Europe). Dr Cord Sturgeon (Chicago) who undertook the slightly smaller US study, commented that there was a high number of female respondents to his survey, which I suggested was likely to be down to sourcing the majority of the participants via patient groups (traditionally it is harder to engage male members than female members in patient groups!). Both groups answered positively to my question about whether their surveys would be extended to include MEN2 and MEN3 in the future – so if you have MEN2/3, watch this space.
On Saturday 1stOctober (our last day), the patient and nurse’s symposium listened to each of the European MEN patient groups as they described their aims, objectives, work and challenges. Professor Raj Thakker (Oxford) gave another round-up of MEN1 news and endocrine nurse, Nick van der Meij (Utrecht) discussed issues surrounding steroid dependency. I personally had a bit of an issue with the suggestion that those with adrenal insufficiency should not travel extensively in case medical care is sub-standard. My personal view is that patients should be encouraged to learn to self-medicate in order to gain confidence in travelling in the same way as anyone else. The Belangengroep MEN Chair, Carla Pietermann, then concluded the patient/nurse symposium with an elegant summary of the highlights.
Later in the afternoon, a session entitled ‘Back to the future – interactive discussions’ had us very curious. With a room full of clinicians, researchers, nurses and patients, a superb synopsis of the entire conference was given, both from the scientific sessions and from that of the patient/nurse’s symposium. Organiser, Professor Gerlof Valk, invited patients to speak up too and to give their opinions on foci of future research and on planned parenthood. It gave everyone much to think about, and in my opinion, after years of attending conferences, felt for the first ever as though we were all working together for the benefit of those affected with these conditions – hugely inspiring.
It was fabulous to have the opportunity to meet the new faces of patients from around Europe, AMEND’s lovely MEN2b members from Canada and India, and friendly physicians including Professor Raj Thakker, Dr Paul Newey, Dr Kate Lines, Dr Marion McAllister, Drs Bob Gagel and Nancy Perrier from MD Anderson in Texas, and many, many more. The evening social events were a great chance for us patients to let our hair down and get to know one another as we ate our way around beautiful Utrecht, or relaxed on a cruise around the city’s canals.
Huge thanks must go to the Dutch organisers, Professor Gerlof Valk, Dr Menno Vriens and Belangengroep MEN Chair, Carla Pietermann for organising such an excellent conference, for including patients and ensuring that their voices were heard, and for such wonderful hospitality throughout. Thank you also to all the Belgangengroep MEN volunteers who ensured that the conference ran so smoothly. We dearly hope that World MEN 2019 will continue in this vein when it goes to Houston, USA in 2019.
Adapted from the AMEND members’ newsletter December 2016. Author: Jo Grey, AMEND CEO