Blog

Leveraging Electronic Health Record Data to Understand Gaps Underlying the Underdiagnosis of Lynch Syndrome

 LS predisposes to cancer in multiple organs, including colorectal, endometrial, upper GI, genitourinary, brain, and skin cancers.

Unfortunately, most individuals with LS remain undiagnosed4 and do not benefit from the growing medicines, equipment, and techniques available of early detection and prevention strategies that can prolong life, reduce cancer incidence, and thereby increase quality of life for individuals with LS.

In spite of the numerous diagnostic approaches to identifying individuals and families with LS, however, it is widely understood that LS remains underdiagnosed and thus opportunities for genetically driven cancer prevention remain missed.

The EHR(Electronic Health Record) can play an important role in identifying candidates for LS screening and advancing the clinical care of patients with LS. However, many limitations of the EHR need to be addressed and complementary approaches that incorporate input from all stakeholders are key to improving the lives of individuals with LS.

https://ascopubs.org/doi/full/10.1200/CCI.24.00032

ALTERNATIVES OR ADDITIONS

 “If you think about it, cancer loves stress and anxiety because the body becomes inflamed and therefore patients who engage in mental well-being tactics like counselling and exercise live longer, tolerate chemo more and have a better quality of life. However, anything other than that I do not know.”

It can be overwhelming and frankly too much when we get bombarded with leads on cures, from the potentially sound to the ridiculous and they are generally expensive. That’s why I love exercise, it does so much good, and it is potentially free depending on how you go about it. So please build up to that 150 minutes a week if you can. Ask your physiotherapist in your cancer centre if you need to get advice on how to start. It is never too late.

https://peakd.com/health/@clodaghdowning/alternatives-or-additions

What is palliative care?

Palliative care is  specialised medical care focused on quality-of-life issues for patients and their families with serious illness. Palliative care is helpful at any age or stage of illness and is beneficial when started soon after diagnosis.

Why is this topic important?

Palliative care is about helping people with serious illnesses feel better, mentally and physically. While it initially developed from end of life care, research increasingly shows the value of beginning palliative care earlier. By talking with patients about palliative care, doctors can learn about their patients’ preferences and are better able to honor those preferences throughout treatment.

Many patients mistake palliative care for end-of-life care or hospice and may turn down the opportunity to receive palliative care that could help them deal with the side effects of their cancer or treatment.

https://www.facingourrisk.org/XRAY/palliative-care-for-cancer-patients

Life after cancer: Navigating survivorship and mental health

Cancer doesn’t just take over a person’s physical body, but their very life?

In short, when it comes to journeying through cancer care, there seems to have been prolific, yet strangely finite, consideration of that path, ceasing when it comes to post-treatment.

Screening and diagnosis to treatment and remission have been covered, but what about what happens after that?

What about cancer survivorship?

The good news is that a shift in the state of affairs is occurring.

https://pharmaphorum.com/deep-dive/life-after-cancer-navigating-survivorship-and-mental-health

Talking to Loved Ones About Increased Cancer Risk

After learning you inherited a higher risk of cancer, you may want to share your news and feelings with friends and family. Ask your loved ones to listen and support you. Let them know this information gives you the opportunity to take proactive control over your health.

https://www.everydayhealth.com/breast-cancer/how-to-talk-to-family-and-friends-about-hereditary-breast-cancer-risk/

Did you know…

There are 3 different types of hospitals in Ireland:

  • Public hospitals run by the State through the Health Service Executive.
  • Voluntary public hospitals, are mainly state-funded but are sometimes owned by private bodies. For example, religious orders. … 
  • Private hospitals receive no state funding.

Funding……

https://www.irishexaminer.com/news/munster/arid-41383537.html

Public hospitals that are ultimately managed by

HSE (although the model is again currently in transition to RHAs). Voluntary hospitals that are managed by an independent board outside the control of the HSE, but still funded by taxpayers (https://foi.gov.ie/voluntary-hospitals/). And Private hospitals that operate independent of taxpayer funding. From a cancer perspective, the Dublin public hospitals are Voluntary Hospitals, and the cancer centres outside of Dublin are Public Hospitals run by the HSE.

Colonoscopic surveillance in Lynch syndrome: guidelines in perspective

The prevention of colorectal cancer through colonoscopy relies on identifying and removing adenomas, the main precursor lesion. Nevertheless, colonoscopy is not an optimal strategy since post-colonoscopy colorectal cancer remains an important issue.

LS is currently understood as a four clinically distinct syndromes with consistent genotype-phenotype associations. Since CRC lifetime risk varies depending on the mismatch repair gene involved, screening guidelines are evolving to become gene specific. 

Despite recent advancements, the definitive role of colonoscopy in LS has yet to be established. Current evidence of the variable effect of colonoscopy effectiveness depending on quality indicators in LS suggests that the full potential of colonoscopy has not been achieved. 

The coming years are going to be very exciting with the results of the CAPP-3 study that will establish the role of different doses of ASA as cancer prevention, as well as the results of the first trials evaluating the effectiveness and safety of preventive vaccines in LS 

https://link.springer.com/article/10.1007/s10689-024-00414-y#Abs1

Cancer treatments and side-effects

It’s very important to be aware of any changes and let your medical team know about them, even if they happen some time after treatment. There are treatments to help with most side-effects. 

https://www.cancer.ie/cancer-information-and-support/cancer-information/cancer-treatments-and-side-effects/chemotherapy

Walking a Fine Line as a Squeaky Wheel: Communicating With Doctors

https://raredisease.net/living/communicating-with-doctors

In a nutshell, I walk the line by knowing what my tolerance level is, choosing my battles, and using diplomatic, intentional communication.

Asking a direct question with respect took all the guesswork out of everything for me, and I feel much more secure in our patient-provider relationship.

Irish Cancer Society’s Research Skills Summer School 2024

2024 Research Skills Summer School in Tullamore!

FREE course, for anyone interested in developing their research skills to apply to attend -led by Dr. Emer Guinan and Dr. Linda O’Neill, is perfect for anyone eager to dive into research – no experience needed! Join one or both blocks!

Apply at: https://brnw.ch/21wLsWL

https://www.cancer.ie/cancer-research/researchers-hub/apply-for-funding/open-calls/irish-cancer-societys-research-skills-summer-school-2024