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.
Participants highlighted several key challenges, including low awareness of CRC symptoms among younger populations, diagnostic delays linked to age and gender biases, and limited access to age-appropriate support services. Many participants reported significant quality-of-life (QoL) impacts related to disrupted careers, intimacy issues, and challenges managing family responsibilities during treatment. Psychological support, physiotherapy, and nutritional counseling were inconsistently available, with significant disparities across public and private healthcare systems.
Those of us going through or have gone through cancer can’t escape the utter dread you feel when that medical person tells you to your face you have cancer. Regardless of the type or severity of cancer, you hear that word in your ears, you feel that word enter your body, mind and psyche, your world stops. Your mind goes blank.
My progress and response to my ongoing treatment for inoperable prostate cancer has been extremely encouraging. I hope to be given great news around the second anniversary of my diagnosis next October. It’s by no means a given. I must stay focussed and positive. And I will. I am grateful for all I have despite that life-changing day nineteen months ago.
Cancer is a fucking curse. Cancer is a wrecking ball, physically and mentally. Be grateful if it never comes to your door. Be better in life. We’re not perfect, we all do and say stupid things, so we can all be better. But be better.
“Building greater resilience in hospitals can be achieved by increasing in-house compounding of SACT(Systemic Anti-Cancer Therapy) within dedicated aseptic compounding units (ACUs)”.
This “helps mitigate the risks associated with relying on outsourced supply chains, which are often fragile and vulnerable to disruptions”.
@mcacrthymt7 “The advantage of on-site compounding is that dose changes or treatment change decisions can be made in real time. Outsourcing to private companies in most cases means ordering SACT 2 weeks in advance. It increases inflexibility in the system. The objective should be to increase efficiency. Maximise onsite SACT compounding.”
Objective: This study evaluates the experiences, perceptions, and attitudes of people with Lynch syndrome (LS) towards faecal immunochemical testing (FIT) as an adjunct to colonoscopy for colorectal cancer surveillance.
Conclusions: FIT is widely perceived as an acceptable supplemental tool among surveyed people with LS, who appreciate its potential to reduce intervals between colonoscopies without compromising surveillance quality.
Ongoing patient engagement is crucial to addressing concerns about FIT’s reliability. Future research should evaluate long-term outcomes and explore diverse population perspectives to guide FIT implementation in LS surveillance.
Conclusions: In this study, we found that patient treated with ICIs have similar outcomes in the presence of germline vs. somatic MMR mutations in MSI-H CRC. The presence of an associated BRAF V600E mutation, which occurs in non-LS MSI-H CRC conferred worse outcomes.
https://ascopubs.org/doi/10.1200/JCO.2024.42.3_suppl.175
Immunotherapy increases the body’s ability to identify and attack these cells, and cancers that have high microsatellite instability actually help this effort. As the cells continue to mutate and replicate DNA several times, they create more and more proteins that the body doesn’t recognise as normal.
Before immunotherapy, MSI used to be very bad news for patients with advanced cancers. Because they can mutate rapidly, cancer cells can begin to differentiate from each other and change significantly. Cancer can, for example, gain the ability to metastasize to a different organ or better evade the immune system. With advances in immunotherapy, that prognosis is changing, but that is a very recent shift in just the last few years. Now we know that if you have cancer with MSI, even if it’s late stage, it has a good chance of responding to immunotherapy.
The implications of the decision to treat a terminally ill patient are multidimensional, but the ultimate goal should be to help patients with a peaceful life-death transition.
To that end, education and training of oncologists on end of life care, managing expectations of patients and communication skills are important, as is the role of the media in promoting the importance and complexities of navigating quality end of life care and discouraging the ‘war’ metaphor for cancer.
It is also the case that prescribing drugs in the last 6 months of life constitutes a substantial proportion of total healthcare costs, and we may be able to avoid some of these costs if patients better understand the benefit/risk trade-off offered by anticancer drugs tested in this population.
“There is wisdom in survival. There is wisdom in grief, in forgiveness, in having lived through things that could have broken me. That wisdom doesn’t belong in a drawer. It belongs in the world, where it might do some good.”
Cancer treatment is hard. Life when active treatment ends can be harder. In other words, the work continues. We all do this work and incorporating differently.
Lynch Syndrome Ireland 