PPI is becoming mainstream in research and is now a key determinant when awarding funding grants. Patients are seeking empowerment through true partnership and should be consulted at the very earliest stages of defining the research question. This will help to ensure trial success.
Author: Lynch Syndrome Ireland
When a patient’s survival is dwarfed by the logistics of treatment, oncologists need to talk about ‘time toxicity’
Time toxicity may be less pertinent when treatments offer a significant survival benefit or align with the patient’s goals. No choice is inherently wrong provided it is made with sufficient information.
“Left to ponder the opportunity cost for everyone involved, I imagine a day when patients will be spared the lament of time toxicity because oncologists like me will have embraced it as a plank of our counsel. It won’t be the easiest thing to talk about but by doing so, we will be serving the best interest of our patients.”
Can a vaccine help prevent Lynch syndrome-related cancers?
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.
Living well with and beyond Cancer
Irish Cancer Society 2022 Annual Free Conference
Attend in Person or Online
Family Cancer History is important
Faecal immunochemical testing (FIT) in patients with signs or symptoms of suspected colorectal cancer (CRC): a joint guideline from the Association of Coloproctology of Great Britain and Ireland (ACPGBI) and the British Society of Gastroenterology (BSG)
Executive Summary of Recommendations
FIT in Primary Care
1. We recommend that FIT should be used by primary care clinicians to prioritise patients with clinical features of colorectal cancer for referral for urgent investigation
2. We recommend that a FIT threshold of fHb ≥10μg Hb/g should be used in primary care to select patients with lower gastrointestinal symptoms for an urgent referral pathway for colorectal cancer investigation
3. We recommend that patients should not be excluded from referral from primary care for symptoms on the basis of FIT testing alone
Advice for clinicians where patients have not returned a FIT test
4. We suggest that clinicians should follow up patients with no FIT result to encourage them to return a sample or, where the kit has been lost or inadequately submitted, offer a further test
5. We suggest that patients who decline to return a FIT test should be counselled that evaluation of their symptoms is incomplete, and be encouraged to complete their test
6. We suggest that where no FIT result can be obtained, clinicians should use existing national and local guidelines to assess risk of colorectal cancer
Safety Netting
7. We recommend that some patients with symptoms of suspected colorectal cancer may be managed in primary care if fHb <10μg Hb/g, and provided appropriate safety netting is in place
8. We suggest that patients with a fHb <10μg Hb/g but with persistent and unexplained symptoms for whom the GP has ongoing clinical concern should be referred to secondary care for evaluation
9. We recommend that safety netting protocols should incorporate advice and strategies for the diagnosis of colorectal and extra-colonic cancer, as well as other serious gastro-intestinal conditions
Diagnostic accuracy of FIT for CRC with suspected cancer signs or symptoms
10. FIT is a triage tool to identify those patients with symptoms of suspected colorectal cancer who should undergo further colorectal investigation
11. We suggest that FIT be utilised for people with iron deficiency anaemia within primary care to inform urgency of referral
12. We suggest referral of patients with persistent / recurrent anorectal bleeding for flexible sigmoidoscopy if fHb <10μg Hb/g
13. There is currently insufficient evidence to recommend variations in the fHb threshold for referral from primary care according to patient related-factors
14. There is currently insufficient evidence to confirm whether diagnostic accuracy is impacted by the type of FIT analyser used
15. There is currently insufficient evidence to recommend including FIT in a risk score with other clinical features to identify patients with symptoms of suspected colorectal cancer
16. We suggest that FIT may be used to stratify adult patients aged younger than 50 years with bowel symptoms suspicious of a diagnosis of colorectal cancer
Investigation in secondary care
17. Colonoscopy is considered the standard method of investigation, however other methods of colorectal imaging may be appropriate in some patients
18. We recommend that for patients with symptoms of a suspected diagnosis of colorectal cancer, CT Colonography is equivalent to colonoscopy for detection of colorectal cancer (the choice of modality should be determined by the local expertise and availability)
19. There is currently insufficient evidence to support use of a specific quantitative FIT threshold to recommend the selection of CT Colonography versus colonoscopy
Acceptability
20. On the basis of limited evidence, clinicians and patients consider FIT as an acceptable test for symptomatic colorectal cancer in most circumstances
21. We recommend that services should consider ways of promoting a high proportion of patients to return FIT kits
Discrimination
22. We recommend that clinicians actively prevent discrimination at any stage of the diagnostic pathway as symptomatic FIT testing is rolled out, with a focus on equity of access and application to all patients with lower GI symptoms
Implementation
23. We recommend that FIT, as a diagnostic triage tool, can be implemented safely at primary care level, and that a programme of education be developed to facilitate implementation of FIT in primary care
Have you been diagnosed with Lynch syndrome?
FORCE(USA) has compiled resources and information to help people make informed decisions and receive support.
People diagnosed with Lynch syndrome have an increased risk for colorectal, endometrial and other cancers. Options are available for cancer treatment, screening and prevention for people with Lynch syndrome.
https://www.facingourrisk.org/portal/people-with-lynch-syndrome
Cancer Prevention with Resistant Starch in Lynch Syndrome Patients in the CAPP2-Randomized Placebo Controlled Trial: Planned 10-Year Follow-up 
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.
ThisisGO.ie
Another brilliant resource now available for women living with/beyond and with a predisposition to cancer.
Phase 3 live now
-400 women are diagnosed with Uterine cancer every year. 70-80% diagnosed are living with obesity.
Log on to https://thisisgo.ie/?fbclid=IwAR13F4M_K4vkAjBjD__7C7zDvxQdpgWuSW-IQnmA3JX9LePG9QDh9qay_X8 for accurate info.
Quite simply, people need to take bowel cancer seriously. Give a $#*! about your bowel, it could save your life…
Bowel cancer deaths can be prevented through the early detection and removal of polyps.
“We want to prevent polyps turning into early-stage cancers,” Bowel Cancer Australia Medical Director, Graham Newstead AM said.
Lynch Syndrome Ireland 