What stories and what science do we find and share online when we are striving to connect with other “patients” or “carers” like us?
In this podcast, Stefania takes the case of two family cancer syndromes (BRCA and Lynch) to explore the way social media can shape everyday coping with the diagnosis of a rare or little known health condition.
https://offtheshelf.org.uk/event/digital-media-use-for-health-and-illness-dr-stefania-vicari/
“Being research active, in my opinion, is fundamentally about our willingness and diligence, as patients, to ask questions and seek high quality evidence either as a patient, a health professional, and from an organisational standpoint.
As patients we need to ask for the evidence. We should be able to read about the findings in plain English. We must be part of a meaningful and informed conversation. We should have guidance on the questions to ask about whether to take part in research. We must be kept informed about the progress of individual studies. We should be able to find out how to get involved with researchers to inform, shape, and influence all aspects of the process. A research active patient might be described as purposely enquiring about evidence to support their own health.
For health professionals it may be about asking how research can assist in all stages of the patient pathway. It is where research moves from being a last option to a helpful guide. … A research active health professional might then mean being fully engaged with research as a means of benefiting patients through networking with colleagues and the public.”
Would you like to share your views on treatments for depression for patients with cancer?
Regular bowel screening and aspirin reduce colorectal cancer among patients with LS but extracolonic cancers are difficult to detect and manage. This study suggests that RS reduces morbidity associated with extracolonic cancers.
Taking a supplement of 30 grams of “resistant starch” a day – about the amount in two slightly unripe bananas – reduced the risk of multiple forms of cancer in people with Lynch Syndrome
The clinical trial will investigate a preventive vaccine designed to recognise multiple mutated proteins frequently found in patients with Lynch syndrome.
They are hoping to immunise patients who are cancer-free with those shared foreign mutated proteins so that the immune system will be prepared, if a patient develops a tumour, to reject it.
Prevention Relevance:
Regular bowel screening and aspirin reduce colorectal cancer among patients with LS but extracolonic cancers are difficult to detect and manage. This study suggests that RS reduces morbidity associated with extracolonic cancers.
The recommendations from the EHTG and ESCP for identification of patients with Lynch syndrome, colorectal surveillance, surgical management of colorectal cancer, lifestyle and chemoprevention in Lynch syndrome that reached a consensus (at least 80 per cent) are presented.
https://academic.oup.com/bjs/article/108/5/484/6287132?login=false
Depression is highly prevalent in those diagnosed with cancer and is also associated with poorer prognostic outcomes. Mindfulness-based interventions are effective in reducing depressive symptoms and improving quality of life in patients with cancer. The objective of this review was to investigate whether mindfulness practices can improve survival and, if so, what mechanisms of action may contribute to these outcomes.
https://acsjournals.onlinelibrary.wiley.com/doi/10.3322/caac.21733
Management guidelines for Lynch syndrome may require revision in light of these different gene and gender-specific risks and the good prognosis for the most commonly associated cancers.
Most people with Lynch syndrome are well, but someone with LS has a 40-70% chance of developing colon cancer, and women also have a similar risk of cancer of the womb. All those with LS have an increased risk of many other types of cancer. The genetic mutations which cause Lynch Syndrome can be passed on from one generation to the next, with a 50% risk of a child inheriting this condition.
The programme has four main aims:
1) Effective diagnosis and identification of people with LS in the UK
2) Improve understanding of the biological mechanism of cancer development of people with LS
3) Develop additional tests which facilitate the prevention and early diagnosis of cancer in people with LS
4) Reduction in the variation of – and improvement in access to – care for people with LS in the UK
Lynch Syndrome Ireland 