Category: Uncategorized

https://www.sciencedirect.com/science/article/pii/S1462388926002279

When people talk about Lynch syndrome, the conversation often focuses on genetic testing, cancer screenings, and prevention.

But what about the emotional and physical impact of living with an inherited cancer risk?

A new study explored something that deserves more attention: **quality of life among people with Lynch syndrome.**

Researchers examined 288 adults, including Lynch syndrome carriers, non-carrier relatives, and individuals with and without a history of cancer.

What they found is worth a closer look:

Lynch syndrome carriers reported lower quality of life and greater symptom burdens.

Fatigue, insomnia, and pain were among the symptoms reported.

Participants with a history of cancer experienced significantly poorer physical functioning.

The study also explored whether machine learning could help identify individuals who may need additional supportive care.

If we value the patient voice in shaping the future of healthcare, why do we still struggle to hear it in the present?

Experts in our cancer, yet strangers in our own healthcare conversations.

As patient advocates, we are often called experts in our cancer areas, we contribute to research, challenge policy, sit at decision making tables and ask clinicians to listen to the patient voice. Yet, when we return to our own doctors, some of us find ourselves having to fight to be heard. Why?

https://lnkd.in/p/dHNdXT89

Being a good patient means doing what you can in concert with the medical system to maximise your quantity and quality of life. Here’s a list of ways to do:

1. Be on time for your appointments.
2. Be nice to everyone you meet.
3. Take your meds as directed.
4. Follow all prep instructions.
5. Get your tests done on time.
6. Do your screenings as required.
7. Be absolutely open and honest with your doctors.
8. Help your doctors help you by having a list of questions in advance.
9. Don’t be afraid to educate your doctors as needed.
10. When you need help, ask for it. (It feels good to help someone, right. Why deny that feeling to anyone else?).
11. If you’re not comfortable with something, say so.
12. If there’s something you don’t understand, say so.
13. Encourage your doctors to talk to each other.
14. Eat right, stay hydrated, rest when you must, and exercise when you can.

Please know that it’s perfectly okay to talk about cancer around me…

And it’s also perfectly okay to say the word “cancer” around me.

The sound of… and topic of… “the c-word” causes me no distress at all… as I processed the emotional gut punch and harsh realities that come with an advanced cancer diagnosis a long time ago.

Please know that it’s okay for you to ask me: “Frank, I don’t want to invade your privacy or anything, but I heard through the grapevine that you have cancer. So, how are you doing, man?”

In fact, broaching the subject is more than okay; it’s quite welcome… for at least three huge reasons:

1. Such an overture alleviates any worries I have about being a downer or burden on anyone.
2. Your willingness to engage with such a heavy subject opens a door that allows me to be comfortable sharing what’s really going on with me.
3. Most important, such reaching out is a powerful medicine for the utter isolation and loneliness of it all.

AI is another tool to use judicially. Not a replacement for the human connection and critical thinking.

Should Healthcare leaders should stop treating AI as a “plug-and-play” software purchase. AI is an operational transformation, not just a tool. We see too many systems try to “buy” their way out of clinical burnout without changing the underlying workflow.

https://lnkd.in/p/d2w7qswP

You want to help. You want to say the right thing. You want to show up in a way that matters.

Something I wish more people understood early on.

Your friend doesn’t need you to become an expert in cancer.

They don’t need you to have the perfect words.

Most of the time, what they really want is to feel normal again.

They need you to talk about the same things you always talked about. Sports. Work. Family. Whatever it is, that made your friendship yours before all of this showed up.

Sometimes your friend will want to talk about it. And when they do, listen. You don’t have to fix anything. You don’t have to respond with the perfect insight.

Because sometimes, the best thing you can give someone who’s surrounded by cancer is a moment where it doesn’t take center stage.

Just show up, be there like you always have been.

https://www.linkedin.com/pulse/what-your-friend-cancer-really-needs-chuck-stravin-x114f

Age at diagnosis among patients with cancer is a predictor of pathogenic germline variant prevalence, yet age thresholds often misclassify genetic risk.

Findings support broad-based germline testing beyond conventional age-based criteria, reflecting the burden of hereditary risk even among late-onset cases.

Across 32 solid tumour types in a pan-cancer cohort, they found enrichment of germline pathogenic variants among patients with subtype-specific early-onset cancer. Using age 50 as a testing cutoff misses most patients with inherited predisposition, supporting universal germline genetic testing for all individuals diagnosed with cancer.

https://aacrjournals.org/cancerdiscovery/article-abstract/doi/10.1158/2159-8290.CD-26-0971/788729/Universal-Germline-Genetic-Testing-after-a

The ItaLynch project is an ongoing, prospective, observational, multicenter Italian clinical trial designed to evaluate the feasibility of mainstreaming genetic testing for Lynch syndrome (LS)

Highlights

• •This is a prospective, observational, multicenter, multidisciplinary, Italian study.
• •Investigating the feasibility of a new diagnostic algorithm for LS.
• •A ‘Lynch alert’ in the pathology report is used as a clear warning to clinicians.
• Proposing a shift to an oncologist-led mainstreaming genetic testing.
• •This study encourages the establishment of multidisciplinary workgroups.

https://www.sciencedirect.com/science/article/pii/S2949819824000050

How well is cancer prevention implemented in Lynch syndrome?

Report surveyed 539 individuals with Lynch syndrome and found:

🩺 99% reported undergoing colonoscopic surveillance.
💊 Only 7% used aspirin specifically for cancer prevention.
💉 80% expressed willingness to participate in a preventive cancer vaccine trial after receiving additional information.

The key message: High engagement in surveillance and strong interest in innovative prevention, but a substantial gap in translating existing evidence into clinical practice.

https://www.thelancet.com/journals/langas/article/PIIS2468-1253(26)00216-5/abstract