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CANCER OF UNKNOWN PRIMARY FOUNDATION

OnHealthy

Blog

14 May 2018

OK, so this is not the most exciting topic we have ever covered but it is relevant! 25 May is the date that the new privacy laws come into effect (GDPR). You will have received many eMails from different organisations asking you to ‘opt-in’ otherwise the organization should not contact you again. We have eMailed all those on our ‘conferencesRead more

16 Apr 2018

CUPEM The immunotherapy trial, to which we have contributed £100,000 on behalf of our donors, is now awaiting only ethical approval. Merck are providing/funding the drugs. The trial’s initiator and lead, Dr Harpreet Wasan of Hammersmith Hospital and Imperial College London, writes: ‘We hope to recruit 77 patients in total to test the benefit of immunotherapy in CUP and hopeRead more

03 Apr 2018

The Australian authorities have been working on an equivalent to our NICE Guideline for CUP and their ‘Optimal care pathway for people with cancer of unknown primary‘ is now out in draft for public consultation in Australia. Two members of our Medical Advisory Board were members of the expert group developing the care pathway: Dr Richard Osborne and Prof PennyRead more

14 Mar 2018

On 12 June 2018 in Bristol there is a day’s event designed for those working in CUP MDTs to come together and share experiences. Topics include:  diagnostic challenges including developments in pathology, palliative care, clinical trials,  developing urgent referral pathways and patient surveys. The speakers are all practitioners and this is a great opportunity to benchmark your service delivery withRead more

21 Feb 2018

The 100,000 Genomes Project reached the halfway point, with 50,065 whole genomes sequenced, this week. This is a pretty impressive achievement by Genomics England. The figure will include some CUP patients. There is unlikely to be any immediate benefit for CUP patients but it promises to be an amazing resource for scientists trying to understand some cancers and other diseases.

21 Feb 2018

Following the 2016 external peer review of CUP services in England in 2016, we have been chasing the report. We’ve been pressing the Quality Surveillance Team (Specialised Commissioning, NHS England) for a year and have had various assurances, at different times, of its forthcoming availability. The latest response from the Deputy Head of Quality Surveillance Team of 20 Feb 2018Read more

09 Jan 2018

We have been pressing the Quality Surveillance Team to release the report on the external peer review that took place in 2016. The latest from the Deputy Head of the Quality Surveillance Team is that ‘The report will be available to NHS England colleagues and stakeholders at the end of January beginning of February 2018. It is currently being prepared.’

12 Dec 2017

ESMO have produced a useful patient-oriented guide on immunotherapy side effects ESMO-Patient-Guide-on-Immunotherapy-Side-Effects

22 Nov 2017 09 Nov 2017

An interesting short article in NEJM here . Particularly relevant as we work on the development of a Patient Decision Aid for CUP. The concluding paragraph gives a flavor: “Regret is typically viewed as a negative emotion. It is notable that existing patient regret scales have largely failed to assess for a positive impact of regret. However, awareness of regret canRead more