Disruptive Women in Health Care » Blog Archive » What Does It Matter to You: Patient Activation and Good Health Outcomes (on attitudes, knowledge, communication and abuse??)

Disruptive Women in Health Care » Blog Archive » What Does It Matter to You: Patient Activation and Good Health Outcomes

open access: Risk of Acute Myocardial Infarction After the Death of a Significant Person in One's Life - Clinical Perspective (study period 1989 and 1994/age/gender)

Background—Acute psychological stress is associated with an abrupt increase in the risk of cardiovascular events. Intense grief in the days after the death of a significant person may trigger the onset of acute myocardial infarction (MI), but this relationship has not been systematically studied.

"...... Although our study examines the MI risk associated with the loss of any significant person, our findings are consistent with prior studies showing that men are more vulnerable to the health consequences from bereavement than women¹⁵ and that younger bereaved people are more vulnerable than older bereaved people.² "

The Nature and Timing of Family-Provider Communication in Late-Stage Cancer:abstract

Online Poll Results (unscientific) Survey: conducted prior to Ovarian Cancer Debate conferences in Detroit/Toronto (results compiled for Ovarian Cancer debate purposes)

News - Penn State Biochemistry and Molecular Biology Colorectal Cancer month/Lynch Syndrome excerpt

"Lynch syndrome, previously referred to as hereditary non-polyposis colorectal cancer or HNPCC, represents the most common hereditary cause of colorectal cancer.
Approximately 1 in 400 to 1 in 500 individuals in the general population are estimated to have Lynch syndrome.

Knowledge, as they say, in this condition, is power. Not only should individuals with Lynch syndrome start their colonoscopies earlier (at 20-25 years of age) and have them more frequently (every 1-2 years), they should also be screened for stomach and small intestine cancer, urinary tract cancers involving the kidneys and ureters, and the hepatobiliary tract, including the gallbladder, bile duct, pancreas and liver.

Further, women with Lynch syndrome should be aware of the increased risk for both endometrial and ovarian cancer and offered the option of prophylactic surgery following childbearing."

March 2011: Hereditary Cancer in Clinical Practice | Full text | Lynch Syndrome - is breast cancer a feature?

Background

The debate on whether or not breast cancer is in the tumor spectrum for Lynch syndrome produces a conundrum for healthcare providers.

The classic tumor spectrum for Lynch Syndrome (LS) includes colon, endometrial, ovarian, stomach, small intestine, hepatobiliary, urinary tract and brain/central nervous system cancers. Muir-Torre Syndrome (MTS) is a variant of LS that is associated with additional skin lesions including sebaceous gland tumors and keratoacanthomas. MTS was observed in 28% of LS families when assessing for MTS skin lesions [1]. It has also been reported that 10-14% of individuals with MTS present initially with breast cancer [2,3]. An extensive study published in 2002 excluded breast cancer as part of the tumor spectrum associated with LS [4].

However, more recently it was reported that DNA mismatch repair (MMR) gene deficiencies were identified in 51% of breast cancers arising in MMR mutation carriers [5]. Another study reported a male with an MLH1 mutation who had both colon and breast cancer. The breast cancer exhibited somatic reduction to homozygosity for the MLH1 mutation [6].

Here we report two unrelated families in which the proband has a germline MMR gene mutation and bilateral breast cancer, and one family in which the proband had ovarian and renal cancer and her daughter, maternal aunt and cousin had breast cancer at age 47, 59, and 48 respectively.

This raises the question are these breast cancers associated with the MMR mutations or a breast cancer susceptibility gene and what testing should be offered?

Conclusion

Our findings indicate that breast cancer is part of the spectrum of tumors in LS families in which the breast cancer segregates with the other LS associated tumors.

Additional hereditary breast cancer gene testing may not be warranted in these circumstances. A future research goal is to perform IHC on the breast tumors from these families to determine if they show loss of expression of the MMR gene that is known to be altered.

....cont'd (full free access)

The Care Strategy for Families of Terminally Ill Cancer Patients Who Become Unable to Take Nourishment Orally: Recommendations from a Nationwide Survey of Bereaved Family Members' Experiences

Care for Caregivers: Groups Offer a Unique Support for Caregivers - Cancerwise | Cancer blog from MD Anderson Cancer Center

While friends and family may try to offer assistance and support, a feeling of "you don't know what it's like for me" is both common and reasonable.

news article: More than a million parents with minor children are cancer survivors

abstract: Parental cancer and the family. Kathryn E. Weaver. 2010; Cancer - Wiley InterScience

Sharing Responsibilities | Cancer.Net

Familial Risk of Cancer and Knowledge and Use of Genetic Testing

MAIN MEASURES: Familial cancer risk was estimated based on the number of first-degree relatives with a breast and ovarian cancer syndrome (BRCA)- or a Lynch-associated cancer, age of onset (<50 or >/=50 years), and personal history of any cancer.
CONCLUSIONS: These nationally representative data provide estimates of the prevalence of familial cancer risk in the US and suggest that information about genetic testing is not reaching many at higher risk of inherited cancer.

Cancer and the Family: The Silent Words of Truth -- JCO The Art of Oncology series

INCONCLUSIVE THOUGHTS: One of the aims of psycho-oncology is to explore, clarify, and accept different realities that are alluded to in the unspoken words of the family narrative, while also eliciting family stories of survival, adjustment, mutuality, belief, and hope. The psycho-oncologist is trained to understand the language of the patient and family members in their subjective appraisals of health and illness and then to encourage them to share their truths about being understood, heard, supported, and emboldened or discredited and stigmatized.

When Advanced Cancer Patients Won’t Eat: Family Member Responses

To read more:

A personal or family history of breast, colon or ovarian cancer may increase your risk for ovarian cancer

Family history includes both your mother and your father’s sides of the family