Category: Uncategorized

Advocating for a National Registry for Patients with cancer-predisposing genetic alterations

Pilot registry in St. James’s Hospital for patients with a cancer-predisposing genetic alteration called the CAmPaiGn Study and are delighted to be actively recruiting patients.

While this is an important first step, we do not believe it is enough. We are strongly advocating for a national registry, as we feel this is both deserved and urgently needed.

If you have one of these alterations, please complete our PPI survey: https://surveymonkey.com/r/PKMSGD3

Every response will help strengthen the argument that a national registry is needed, wanted, and justified .

Young researchers from the ColoMARK network across Europe

n December 2023 PVCR and Bowel Cancer Ireland (previously Irish Colorectal Cancer Community) ran an in-person training workshop for 10 young researchers from the ColoMARK network across Europe. These 10 young researchers are now releasing a ColoMARK video series. 
These short videos offer a glimpse into their individual research projects on colorectal cancer detection and monitoring, showcasing the interdisciplinary and cutting-edge work being conducted within the ColoMARK MSCA Doctoral Network.

New videos are released weekly. 

Watch and subscribe to the series on their YouTube channel:
https://www.youtube.com/@ColoMARK_DN

Listen Very Carefully, I Shall Say This Only Once…

Picture this: You’re sitting in your GP surgery, desperately trying to convince your doctor that yes, you’d quite like a PSA test, thank you very much.

It’s 2025, and we’re still playing this ridiculous game where blokes have to practically beg for a simple blood test.

Prostate cancer is the most common cancer in men. One in eight of us….. will get it…..

So, dear healthcare policymakers, commissioners, and guideline writers:

Listen very carefully, because I shall say this only once – sort it out!
Men’s lives depend on it.

https://www.linkedin.com/posts/activity-7345045396571799552-B7hR?utm_source=social_share_send&utm_medium=member_desktop_web&rcm=ACoAABs3g3EBzKjRijqM-dZ6l7MG8TrOKYFA0ws

Organ Donation change -Ireland

Don’t Miss Your Shot: A Letter to My Newly Diagnosed Self

Key Takeaways
  • Lynch syndrome diagnosis necessitates proactive healthcare, including frequent screenings and prophylactic surgeries, to manage increased cancer risks.
  • The emotional journey involves anger and empowerment, transforming adversity into advocacy and resilience.
  • The narrative highlights the importance of seizing preventive opportunities and living intentionally, inspired by a loved one’s cancer battle.
  • Strong familial bonds and nurturing relationships are central to the protagonist’s journey, emphasising the legacy of courage and determination.

But here’s the thing: your anger doesn’t paralise you—it empowers you.

https://www.curetoday.com/view/don-t-miss-your-shot-a-letter-to-my-newly-diagnosed-self?fbclid=IwY2xjawK6F85leHRuA2FlbQIxMQBicmlkETB6S0xyT01CVGNNS3pubzNoAR4m-nT_i-D7mwh74RbJIE5aYnXmyd0Qfqo8m057fjiYJhH6v83ZyfganEMbRw_aem_HLd3dqOHPLv_g9yAaL1jdw

Manual For Men booklet

This booklet looks at how your lifestyle affects your cancer risk and how to spot cancer early. It includes details on testicular and prostate cancer. It also gives you tips on how to make the best of a visit to your doctor.

https://www.cancer.ie/cancer-information-and-support/cancer-prevention/mens-health

UCAN Ireland

United Cancer Advocates Network is a network of advocates across the Island of Ireland.

They represent a broad range of cancers and locations.

Traditionally they have been advocating in their our own disease areas, now they come together to speak as one voice on key issues that impact the whole cancer community.  

Their focus is on raising awareness and bringing solutions to resolve key systemic issues.

https://www.ucanireland.ie/

NCCP launches three HSE National Clinical Guidelines

The previous and current National Cancer Strategies recommend that the NCCP develop guidelines for cancer care to improve the quality of care delivered to patients.

https://www.hse.ie/eng/services/list/5/cancer/news/nccp-launches-three-hse-national-clinical-guidelines.html

To date, nine national clinical guidelines for cancer have been developed, with various updates throughout the years and further updates to continue.

National Clinical Guidelines play a pivotal role in shaping cancer care. They offer patient-centred, evidence-based recommendans that enhance the quality of care provided to patients. They also empower patients to actively participate in decisions relating to their care.

The NCCP recognises the importance of patient input and their role as key stakeholders in developing guidelines. Several patients were invited to contribute to the development of these guidelines which has helped to capture important quality of life issues and patient values.

The guidelines are intended for use by all healthcare professionals involved in multiple stages of the cancer pathway for the three most common cancers in Ireland. They will also be of interest to patients undergoing diagnosis, staging and treatment of these cancers, and their families and carers.

https://hli.ie/cancercare/guidelines