A Family With the Most Significant History of Breast and Ovarian Cancer in the US

 

Susan Winn’s family history of ovarian and breast cancer can be traced back to the 1860s. Susan’s adult daughters, Kathryn, Bridget and Maureen, were recently interviewed with CURE® (Cancer Updates Research and Education).

They explained that after their mother was found positive for the BRCA mutation, she decided to delve deeper into their lineage with the help of Dr. Henry Lynch of Creighton University.

Dr. Lynch studied the history of seven families including Susan’s, and was able to isolate the BRCA mutation.

After learning of her family’s extensive history relative to ovarian cancer and BRCA, Susan encouraged each of her daughters to undergo tests for BRCA. Two daughters, Bridget and Maureen, tested positive.

And Then the Treatment

Maureen told Cure that she met her husband before her BRCA-positive diagnosis. When the disease was discovered and Maureen had her surgery he was very supportive. Her husband has a chronic disease and they both understand that life is short. They both strive to avoid dwelling on the negative things in life.

Maureen said that the three sisters feel fortunate that they were included in Dr. Lynch’s study. By doing so, they became aware of the risks that their family faces. She understands that her grandparents did not have the same advantage.

Bridget described her own experience of having met her husband after her BRCA diagnosis and subsequent mastectomy. Bridget’s husband was “amazingly supportive” during the entire procedure and recovery.

Although Kathryn is BRCA-negative, she is extremely supportive of both her sisters. Kathryn explains that she has learned to take her health seriously and advocates visiting the doctor for anything that looks or feels suspicious.

Kathryn said that now that she and her friends are in their forties, they are starting to get mammograms. Her advice to women is to delve into family history to find out how many family members have or had breast cancer. This will give them some indication of their potential risk of getting the disease.

Sharing Their Story

Their mother, Susan, wrote a book years ago entitled “Chemo & Lunch.” The three daughters felt it was their turn to share their story with their own book entitled “Nipples Optional.” They decided on the title based on the options patients are given before a mastectomy which is that the nipples are optional.

When asked by CURE how they intend to speak to their children about the disease, Bridget was the first to answer. She said that her daughter is eight years old and the subject is often part of everyday conversation.

Bridget explains to her daughter how and why her body is the way it is. She does not dwell on the risk factors but feels this type of general family conversations will ensure that her son and daughter will not be subject to a lot of surprises when they are adults.

Maureen was the next sister to respond. She said that her children understand as much as possible for their age. Maureen said that it is very different to think of the disease with regard to her children and she is terrified at the notion.

Kathryn said that she has one biological son and one who was adopted. Kathryn intends to have her biological son undergo genetic testing. She admits that she would not have even thought about it prior to the study. Kathryn said that she believes that genetic testing will be a major part of their lives so the family does discuss it quite often.

About BRCA (Breast Cancer Susceptibility Gene)

The average woman may have one chance in eight in their lifetime to develop breast cancer. But the risk is boosted to four in every five chances (at an early age) for women who test BRCA positive.

It is this message that the three sisters promote in their book.

And Finally About Their Book

The sisters took turns discussing portions of their new book. Maureen explained that they have always discussed the possibility of documenting their experiences for their family, friends, and children so that they will have a better understanding of what the sisters have experienced over the past twenty years.

Maureen said that their book described Kathryn’s struggling with infertility for ten years and Bridget’s positive BRCA diagnosis as well as her own. Maureen said that in later years she experienced extreme bouts of anxiety.

The book covers their preventive measures and important issues concerning women’s health.

Bridget’s final advice in the book is for women to talk to their doctors and ask for genetic testing. She admits that being in a high-risk category may be intimidating, but testing can save lives.

Maureen adds that women should be vocal and pro-active concerning their health.


Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia four years ago. He was treated with a methylating agent While he was being treated with a hypomethylating agent, Rose researched investigational drugs being developed to treat relapsed/refractory AML.

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