“As much as knowing more about your cancer can be debilitating, it can also be liberating. A well-informed patient can engage in substantive conversations with their doctors. It allowed me to participate in my care rather than having it done to me.”
Blog
The English National Lynch Syndrome Registry
Comprising over 9,000 patients with Lynch syndrome….Aims to improve the treatment of all patients living with the genetic condition.
Researchers from the Institute of Cancer Research (ICR), in collaboration with the National Disease Registration Service, the NHS Genomic Medicine Service Alliances and the NHS Regional Clinical Genetics Services, have set up the UK’s first-ever comprehensive database registry for Lynch syndrome patients to prevent cancer.
“By centralising patients’ genetic data, together with detailed information about the cancer diagnosis and treatments that these patients have received, researchers will gain crucial insights into Lynch syndrome… [unlocking] new opportunities for precision medicine and prevention, ultimately improving the lives of patients living with the condition.”
Lack of association between screening interval and cancer stage in Lynch syndrome may be accounted for by over-diagnosis; a prospective Lynch syndrome database report
Recent epidemiological evidence shows that colorectal cancer (CRC) continues to occur in carriers of pathogenic mismatch repair (path_MMR) variants despite frequent colonoscopy surveillance in expert centres. This observation conflicts with the paradigm that removal of all visible polyps should prevent the vast majority of CRC in path_MMR carriers, provided the screening interval is sufficiently short and colonoscopic practice is optimal.
Our findings raise the possibility that some CRCs in path_MMR carriers may spontaneously disappear: the host immune response may not only remove CRC precursor lesions in path_MMRcarriers, but may remove infiltrating cancers as well. If confirmed, our suggested interpretation will have a bearing on surveillance policy for path_MMR carriers.
#NoRegrets24
Challenges and opportunities for Lynch syndrome cascade testing in the United States
Individual barriers such as feelings of fear, guilt, and anxiety and limited knowledge about Lynch syndrome as well as interpersonal barriers including complex family dynamics and language barriers limit family communication about Lynch syndrome and prevent uptake of genetic screening for relatives.
Organisational and environmental barriers including a shortage of genetics professionals, high costs, and fears of discrimination also reduce cascade testing.
These multi-level barriers may disproportionately impact underserved populations in the United States, such as individuals with lower incomes, limited English-speaking proficiency, lower educational attainment, and inadequate access to health systems.
https://link.springer.com/article/10.1007/s10689-024-00374-3
What I Do When My Doctors Don’t Listen
As much as I want to believe my doctors are beyond brilliant and can do anything, they are people too. Much like me, they have good days and not-so-great ones.
What are the signs your doctor isn’t listening?
- Constant interruptions.
- Fidgeting.
- There but not there.
- Aggressive body language.
I make sure my doctor is listening by:
- Being prepared.
- Being courteous.
- Rewinding the conversation.
- As a last step, change doctors.
Rather than shrink back from having a “tough” conversation with a doctor, it is critical to do just that. Often these types of conversations, rather than ending a relationship with a doctor, strengthen it.
How I Deal With Scanxiety
Scanxiety is a term coined to describe the mix of fear, anxiety and stress associated with medical scans.
The anticipation of undergoing medical procedures only adds another layer of stress. The anxiety and discomfort during scans heighten my sense of vulnerability and helplessness. As someone who has witnessed the toll of cancer on my brothers, the death of my eldest brother firsthand triggers traumatic memories, intensifying the emotional turmoil.
By acknowledging and addressing my emotional needs, I’m learning to navigate the rollercoaster of anxiety with resilience and grace and looking forward to brighter days ahead.
Is a Lynch syndrome vaccine on the way?
The advances in vaccine technologies, such as in Lynch Syndrome, is a promising field of research that has the potential to reduce the risk of developing cancer, thereby preventing disease and modifying surveillance regimens for high-risk patients.
What To Do While We Wait for a Vaccine
While the possibility of a Lynch Syndrome vaccine certainly brings a lot of hope and anticipation, it’s important to continue other preventative measures in the meantime. It is recommended that Lynch Syndrome patients:
- Receive regular cancer screenings as advised by their healthcare providers.
- Discuss the option of prophylactic surgery to remove at-risk organs.
- Comply with medication management – such as Aspirin and Naproxen – that may be prescribed to help reduce the risk of developing certain cancers.
- Maintain a healthy lifestyle through diet and exercise, while avoiding smoking, excess alcohol, and other known carcinogens.
Regardless of whether or not you are diagnosed with Lynch Syndrome, it is important that everyone be aware of:
- Their family history of cancer.
- Signs and symptoms
https://colorectalcancer.org/article/lynch-syndrome-vaccine-way
A guide to LYNCH SYNDROME
Don’t wait, like me….until you develop cancer to discover that the predisposition to cancer called Lynch syndrome runs in your family.
Why does Lynch Syndrome increase the risk of some cancers?
In our cells, there are natural processes that defend us from cancer – from
repairing damaged DNA to destroying potentially dangerous cells. In Lynch
Syndrome, the ability to properly ‘proofread’ newly formed DNA is lost.
This means that any errors are not spotted or corrected. These errors can
build up, eventually affecting the bodily processes that usually prevent
cancer formation. When this happens, an individual is at a greater risk of
developing cancer.
Not everyone who has Lynch syndrome will develop cancer.
Easy read guide…..
Managing menopause after cancer
Managing menopausal symptoms after cancer can be challenging, and more severe than at natural menopause. Menopausal symptoms can extend beyond hot flushes and night sweats (vasomotor symptoms). Treatment-induced symptoms might include sexual dysfunction and impairment of sleep, mood, and quality of life.
Menopausal hormone therapy is an effective treatment for vasomotor symptoms and seems to be safe for many patients with cancer.
When hormone therapy is contraindicated or avoided, emerging evidence supports the efficacy of non-pharmacological and non-hormonal treatments, although most evidence is based on women older than 50 years with breast cancer.
https://www.sciencedirect.com/science/article/pii/S0140673623028027?dgcid=coauthor#fig2
Lynch Syndrome Ireland 