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Uncertainty doesn’t have to be feared. It can be focusing.

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https://www.linkedin.com/pulse/dont-embrace-uncertainty-hindsight-before-marleah-dean-kruzel-ph-d–e6eke

A = Assess Uncertainty

What to ask yourself

When facing uncertainty, start by asking two questions:

  • Am I viewing this uncertainty as a danger or an opportunity?
  • What type of uncertainty am I experiencing?

How we appraise uncertainty can influence how we feel, process information, and make decisions. If we view uncertainty as an opportunity, it can foster hope.

What this looks like in my life

For me, living with an inherited mutation involves medical uncertainty about my future cancer risk, familial uncertainty about what my genetic results mean for relatives, and financial uncertainty related to managing my risk.

Recognizing the different types of uncertainty helps me identify the questions I need to address and the support I need.

R = Reframe and Respond

What to remember

Uncertainty doesn’t have to be feared. It can be focusing.

Research suggests that uncertainty can focus our attention and motivate us to seek information or consider our options.

What this looks like in my life

When I tested positive, I expected that knowing my genetic predisposition would be empowering. And it has been, but at the same time, I quickly learned just having more information didn’t reduce my uncertainty about if I would be diagnosed with cancer like my mother, my aunt, and my great-great grandmother.

I couldn’t control my future cancer risk. But I could learn about my options, work with healthcare professionals, and make informed decisions about managing that risk.

Strategies to try

When facing uncertainty, consider the following strategies from your toolbox:

  • Seek information in a contained amount of time.
  • Distinguish what is known from what is unknown.
  • Connect with a trusted person.
  • Find a decision partner.

There is no single strategy that works for every person or every situation, and almost every day, I use different strategies. I seek reliable information, talk with my healthcare team, and connect with others.

T = Take Action

What to do

Work through the uncertainty by taking one small step with the information available.

Taking action also means recognizing that decisions may need to be revisited as circumstances and information change.

What this looks like in my life

For me, that includes following recommended cancer surveillance and making informed decisions with my healthcare team. Surveillance helps me act on what is known about my risk, even though it cannot tell me everything about my future.

When navigating uncertainty, I often return to my mother’s advice:

“You make the best decision you can with the information you have at that time.”

How wise.

While we can’t make decisions with information we don’t have, we can make thoughtful decisions with what we know now, learn from those decisions, and adjust when needed.

So, next time you feel unsure, make ART:

Assess uncertainty.

Reframe and Respond.

Take action.

We don’t have to wait for certainty to move forward. We can embrace uncertainty now.

Patient Voice in Health Research

A Decade of Patient Involvement – PVCR’s 10 Year Anniversary Convention.

Over the past decade, PVCR has initiated and facilitated trusted relationships between those with a lived experience of cancer and researchers; supported the education and training of both; ensuring that research priorities reflect the lived experiences, needs and expectations of people affected by cancer.

As they mark 10 years of impact, they want to acknowledge the communities whose insights have shaped our work while also looking ahead, strengthening the foundations for the next decade of sustainable, trust‑based research partnerships.

Learn more about the event and register through this link: https://lnkd.in/dP6e5H-

Nouscom Raises €120 Million ($135 Million) in Oversubscribed Series D Financing and will Present Long-Term Cancer Interception Clinical Data in Lynch Syndrome Carriers at ESMO

Nouscom, a Swiss biotech company, has raised €120 million (about $135 million) from investors to move its experimental cancer-prevention treatment into a large, final-stage clinical trial.

What the treatment is: NOUS-209 is an experimental “vaccine” designed to train the immune system to spot and destroy cells that are cancerous or on their way to becoming cancerous. It’s “off-the-shelf,” meaning it’s the same product for everyone rather than custom-made for each patient.

Who it’s for: People with Lynch Syndrome, an inherited condition that causes DNA-repair genes to malfunction. It affects an estimated two million people and raises the lifetime risk of cancer substantially (for colorectal cancer, up to about 50% versus 2% in the general population). Right now, the only options are frequent screening, such as colonoscopies, and preventive surgery, which is invasive. Screening doesn’t lower the chance of getting cancer; it just helps catch it early.

The early results: In an early-stage trial, people with Lynch Syndrome who received the vaccine stayed free of advanced precancerous growths and colorectal cancer, as checked by colonoscopy. This held for 43 people at one year and 17 at two years. Their immune systems also showed strong, lasting responses, which got stronger with yearly booster doses. The company says this looks promising compared to what would normally be expected in this population. The numbers are small, and there was no comparison group, so this is an encouraging signal rather than proof.

What happens next:

  • The new money will fund a single, global trial intended to support regulatory approval. The US FDA has given the treatment “Fast Track” status, which is meant to speed up development and review.
  • The latest data will be presented at a major cancer conference (ESMO) in Madrid on 25 October 2026.
  • NOUS-209 is also being tested in combination with another drug in patients who already have advanced colorectal cancer.

Who invested: The round was led by M Ventures and Revelation Partners. New backers include Angelini Industries, the European Investment Bank and Neva SGR, and all existing investors took part.

Bottom line: This is a promising but still experimental approach to preventing cancer in people at very high genetic risk. The funding allows the key late-stage testing to begin, but it’s not yet an approved treatment, and the larger trial will show whether the early results hold up.

What are the Cancers associated with Lynch Syndrome?

GP’s and Early Detection of Cancer in Ireland

Your GP is usually the first stop if you notice something that could be cancer, and Ireland’s system works best when they can send you quickly for tests. That is where it often falls down.

GPs are the front door. Around 79% of people in Ireland saw a GP in 2024, averaging 4.4 visits each. Most cancers (about 85%) are found because someone has symptoms, not through screening. So a GP spotting the signs early, and acting on them, matters a great deal.

The wait after the GP visit is the problem. Once a GP suspects cancer, they refer you to a specialist clinic or for scans. Those services often miss their targets:

  • For urgent breast clinics, only about 7 in 10 women were seen within the 10-day target in early 2025. The goal was 95%.
  • More than 2,700 people waited longer than recommended for an urgent colonoscopy in just five months.
  • Where you live matters. At one Dublin hospital, only about 3 in 10 urgent breast patients were seen on time.

Vague symptoms are hard. Things like unexplained weight loss or tiredness don’t point to one type of cancer. Ireland has no national fast-track route for these cases. Northern Ireland has started trialling one.

Getting to a GP can be hard too. There are GP shortages in parts of the north-west, the Dublin commuter belt and some inner-city areas. Most adults without a medical card or GP visit card pay for visits, which can put people off going early. i

Screening is improving. Free bowel screening now covers ages 57–71, and it is due to be extended to ages 50–54. But fewer than half of eligible people take it up.

What’s next. The national cancer plan ends in 2026, and it met only three of its 24 targets. As of July 2026, no replacement had been announced, and a review was due first.

What this means for you: if you notice something unusual that doesn’t go away, get it checked early. If you’re told it’s nothing but it persists, it’s reasonable to go back and say so.

Does having Lynch Syndrome mean that I will definitely get cancer?

Financial toxicity of cancer remains

The Right to Be Forgotten legislation is progress, but its scope is specific: it relates to mortgage protection insurance for a principal private residence, subject to eligibility criteria, including five years in complete remission and a cover limit of €650,000, but it does not remove every financial barrier faced by people affected by cancer.

Financial toxicity is one of the lasting, often invisible consequences of a cancer diagnosis. It is the loss of income, the additional costs of travelling to appointments, parking, medication, nutritional supplements and ongoing care. It is the long term effects of treatment that can affect our ability to return to work, earn a living or plan for the future. It is the financial uncertainty that can follow us for years, even when we are fortunate enough to hear the words no evidence of disease.

https://lnkd.in/p/dEMQcnxs

If I am diagnosed with Lynch Syndrome, are my children and family at risk?

Some Peas & Q’s about Hereditary cancer

Full of information to help people better understand genetics and hereditary cancer.

if you want a copy now at www.genetionary.org