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Wednesday, January 29, 2014
This is such a tough subject for me.
Telling my boys about the death of their father was very difficult for me and it took me two days after Jim died to tell them about it. That day was one of the hardest days of my life.
We were in our living room, my mom was with us as well, and I sat the boys down and said I needed to talk with them about their dad. They sat on the floor with me and I said, “Dad isn’t coming home from the hospital, he is now an angel in heaven.” Matt, my youngest, asked, “Did dad die?” I said, “Yes.” I know they didn’t fully understand, at the ages of 3 and 5 years old what exactly death meant. There were times that they would ask to call dad in heaven.
Looking back, I learned that no matter the age, it is best to speak in black and white terms with young children. It helps them to better comprehend the situation. It helps them to understand the permanency of it.
Children experience overwhelming feelings when someone close to them dies – sadness, shock, anger and worry. The boys and I had to work together as a team to work through the reality of what had happened and manage the changes in their daily routine.
Last year on Jim’s birthday, I took the boys to the Memorial Garden at the church where Jim’s remains are located. I expressed to them that this is another place where you can come to feel close to dad. I always tell them that their dad’s love is in their heart—like when they do something that their dad would have done, like playing basketball, running, playing video games, drawing, etc. I share with them that connection they have to their father. I always want them to know that just because their dad isn’t physically here with us, that there is a connection to him, that they had a dad who loved them more than anything else in this world.
When talking to a child about losing someone they loved, for me, it’s about communication, making them feel loved, knowing they will not be judged for anything they say, that they can be angry, annoyed, upset, cry – it’s about creating that environment where they have support. And, asking them for ways in which they would like to remember their loved one, so that they feel a connection.
There is a book called the Invisible String. It is a fabulous book about how no matter where the person you love is located there is an invisible string to their heart from your heart. I highly recommend this book to help children to open up and talk about their feelings and gain an understanding of loss.
Wednesday, January 22, 2014
“Food, Nutrition and the Prevention of Cancer: A Global Perspective."
The recommendations for the general public are as follows:
- Be as lean as possible within the normal range of body weight.
- Be physically active as part of everyday life.
- Limit consumption of energy-dense foods.
- Avoid sugary drinks.
- Eat mostly foods of plant origin.
- Limit intake of red meat and avoid processed meat.
- Limit alcoholic drinks.
- Limit consumption of salt.
- Aim to meet nutritional needs through diet alone.
Nutrition to Prevent Cervical CancerSpecific to cervical cancer, there is some evidence that an intake of carrots may protect again cervical cancer. According to the American Institute for Cancer Research “The evidence, from case-control studies only, is sparse but consistent. There is limited evidence suggesting that carrots protect against cervical cancer.”
Additional sources of produce high in carotenoids include:
- Sweet potatoes
- Kale and other greens
- Sweet peppers
Nutrition to Prevent Ovarian CancerFor ovarian cancer, evidence suggests that consuming these non-starchy vegetables may decrease the risk of ovarian cancer:
Nutrition to Prevent Endometrial (Uterine) CancerFor endometrial cancer, a high percentage of body fat as well as weight gain in the adult years may increase the risk of endometrial cancer.
So clearly at the top on your priority is weight management - and just as your mother said “eat your vegetables."
The two work hand in hand as well as vegetables are a very high fiber, low calorie food which can provide cancer fighting compounds and assist with the feeling of fullness. Some easy ways to incorporate vegetables in your diet are:
- Breakfast: Top your cereal off with berries or make a spinach omelet.
- Lunch: Layer sandwiches with greens, tomatoes and cucumber. Have raw vegetables on the side instead of chips.
- Dinner: always include a colorful salad and aim to fill half your dinner plate with non-starchy vegetables like steamed asparagus, broccoli and carrots.
- Snacks: Try baby carrots, sugar snaps peas and sliced red peppers dipped into hummus.
Debra DeMille, MS, RD, CSO, is a nutritional counselor at the Abramson Cancer Center at Penn Medicine Pennsylvania Hospital. Dietitians at the Abramson Cancer Center provide educational programs about nutrition that are open to patients as well as the community. Cancer-fighting recipes on this blog are the product of the quarterly series "Cooking Nutritious and Delicious Foods," which promotes seasonal healthy foods with cancer-fighting properties.
Friday, January 17, 2014
These are just a few of the stories to surface around the recent warning letter sent by the US Food and Drug Administration to a Direct-to-Consumer (DTC) genomics testing company.
The warning letter stated that the company had not provided adequate evidence that the Personal Genome Service provides accurate assessment of disease risk. This news and related stories have popularized discussions that have been taking place within the walls of genetic medicine for quite some time.
“The variability of results from DTC testing is not exactly a new finding,” says Susan Domchek, MD, executive director of Penn Medicine’s Basser Research Center for BRCA. “Starting around 2010, researchers have illustrated similar discrepancies by sending batches of samples to DTC companies and publishing the results. It is widely understood that each lab looks for slightly different genetic markers and may interpret the same data differently.”
What is direct-to-consumer genetic testing? What do the tests look for? What are the risks and benefits to this type of testing?
Basser Center genetic counselor Rebecca Mueller MS, CGC, CCRC explains.
Q: What is direct-to-consumer genetic testing?
Q: What conditions do DTC tests look for?DTC tests have been marketed to test for everything from ancestry, to carrier status for recessive conditions, to disease risk, to paternity. Currently, the FDA is concerned about DTC testing for disease risk. These genetic tests for disease risk typically look at what we call SNPs or Single Nucleotide Polymorphisms.
Q: What exactly are Single Nucleotide Polymorphisms (SNPs)?These are small differences in the genome at specific places in the genetic code that are commonly found in people. Through studies of large samples of individuals, scientists have identified many, many SNPs that increase or decrease risk for different diseases within certain populations.
Q: Why do reported disease risks vary depending on the company doing testing?Many things contribute to disease risk—not just genetics. While we know that genetic variation contributes to disease risk, there are several reasons why results vary by laboratory.
First, many SNPs typically contribute to risk of any given disease and different laboratories may look at different SNPs.
Second, even if two laboratories are looking at the same SNP they may interpret results differently for a variety of reasons. For example, they may have different data about the baseline or average risk for a given disease in a particular population, and the increase or decrease in risk is based off of that data.
Regardless of what the genetic reports say, there are a few more things to consider: We have yet to define all the genetic variations that contribute to disease risks, so every test has important limitations. We also know that there are many non-genetic factors that affect disease risks significantly, so even a hypothetically perfect genetic test would have limitations. For example, you can lack genetic risk factors for obesity but still be obese.
Q: Are DTC companies doing BRCA testing?It is important to understand that most DTC companies do not comprehensively sequence genes, meaning they cannot rule out the presence of a mutation with the same precision as the laboratories used in medical settings. For example, one company tested people’s samples for three specific mutations within the BRCA1 and BRCA2 genes that are commonly found in the Ashkenazi Jewish population, but the company did not provide comprehensive genetic testing (also called full sequencing) of the BRCA genes. Individuals might think they had negative BRCA1/2 testing, when in fact they had very limited testing that is insufficient for ruling out a BRCA mutation.
Q: Are SNP test results medically useful?Many things contribute to risk for any given disease. Currently, family history and personal medical history and exposures are the best way to assess risk for many types of cancer. In some individuals, genetic testing of certain genes (not SNPs, but entire genes such as BRCA1 and BRCA2 and genes for hereditary colon cancer) can be very useful. These tests can be ordered by medical providers when indicated to shed more light on inherited cancer risk. Comprehensive testing of these genes is not available through DTC companies.
Wednesday, January 15, 2014
Move over frisee …heirloom vegetables are the hot new menu item this year as predicted by research company Innova Market Insights a recent Food Ingredients Europe trade show in Frankfurt, Germany. These vintage veggies include parsnips, salsify, artichokes and the already trendy kale.
ParsnipsParsnips are a member of the umbelliferae family of vegetables, related to carrots. In fact, parsnips look very similar to carrots but are lacking the beta-carotene that gives carrots their bright orange color. Large parsnips have a hard woody texture that softens when cooked or roasted yielding a sweet and nutty flavor perfect in soups, stews or just on their own.
Just 1 cup of parsnips provides 6 grams of dietary fiber which is almost a quarter of the daily amount of fiber recommended. Parsnips are also a good source of potassium which along with dietary fiber makes this veggie one heart friendly side. As well as a veggie that contributes to sweetness but not to spikes in blood sugar as a result of its high fiber content. Diets high in dietary fiber have also been linked to the prevention of some types of cancer. Parsnips are also a good source of vitamin C which may contribute to immune health by neutralizing free radicals in our bodies.
SalsifySalsify pronounced sal-suhf-eye is a root vegetable belonging to the dandelion family. It looks like a long thin parsnip, but can have black or white skin and is covered in grass-like sprouts. Some people call it the oyster vegetable because it has a mild oyster –like taste when cooked. It can be boiled, mashed or used in soups or stews. Salsify is also good source of dietary fiber, vitamin C, B6, riboflavin and potassium.
ArtichokesDid you know that artichokes are actually the immature flowers of a thistle plant? There are many varieties of artichokes such as Green Globe, Desert Glob, Big Heart, but the Jerusalem artichoke isn’t an artichoke at all, it is actually a member of the magnolia family. Artichokes contain the flavonoid silymarin, which has gained notoriety in the last few years for its role in providing protective support to the liver.
KaleKale will continue to trump iceberg in 2014. This versatile, nutrient rich green is packed with cancer fighting and anti-inflammatory properties, which certainly adds to its popularity. While quinoa was the grain to eat in 2013, ancient grains such as Freekeh and chia will be all the rage in 2014.
Adapted from "Food Predictions for 2014"
For more fun fact about your food check out 101 Foods That Could Save Your Life! By David Grotto
Monday, January 13, 2014
According to National Cancer Institute, there were more than 12,000 women who received a cervical cancer diagnosis last year.
About half of the women diagnosed with cervical cancer are between the ages of 35 and 55. The majority of cases are caused by exposure to the human papillomavirus (HPV), a common sexually transmitted disease. HPV affects up to 80 percent of females and males in their lifetime. Many cases of HPV clear on their own, but certain types of HPV can cause cervical, vulvar and vaginal cancer in females.
Cervical cancer develops in the cervix, the narrow outer end of the uterus that extends into the vagina. When diagnosed early, cervical cancer is generally curable and patients have an excellent chance of recovery. Penn Medicine physicians and scientists are working together to develop new ways to diagnose and treat cervical cancer.
Preventing HPVVaccines are now available that protect against four major types of HPV, including the two types that cause about 70 percent of cervical cancer cases as well as the two types that cause about 90 percent of genital warts.
The HPV vaccine is expected to be long-lasting, but because the vaccine does not protect against all HPV types that cause cervical cancer, vaccinated women still need cervical cancer screening (Pap tests and HPV tests). The vaccine does prevent HPV, but does not protect against HPV exposure before vaccination. The HPV vaccine is not a cure for HPV.
Condoms do not protect completely against HPV because they don't cover all of the potential HPV-infected areas of the body. However, condoms do provide some protection against HPV, and they protect against HIV and other sexually transmitted diseases.
Although penetrative intercourse is not necessary to get and spread HPV women can do the following to decrease their risk of cervical cancer:
- Stay up-to-date with recommended paps and exams.
- Avoid smoking
- Avoid early onset of sexual activity and sexual activity with people who have had several sexual partners.
- Use condoms
- Try to maintain a healthy immune system
- Limit the amount of sexual partners
Learn more about cervical cancer treatment at the Abramson Cancer Center.
Learn more about the Jordan Center for Gynecologic Cancer.
Learn more about the MacDonald Women’s Cancer Risk Evaluation Center.
Friday, January 10, 2014
Happy New Year from the Basser Research Center for BRCA.
Basser's quarterly e-newsletter reports on donors Herbert and Betty Adelman, the latest in BRCA research, the announcement of the Basser External Research Grant, upcoming BRCA educational events, and other important center updates:
Herbert and Betty Adelman live in Virginia and first read about the Basser Research Center for BRCA in the New York Times. A 1952 graduate of the Wharton School and part of a family personally affected by the BRCA gene, Herbert and his wife Betty decided to come to Penn to learn more about the Center’s vision and research goals...
BRCA beat eNewsletter
Wednesday, January 8, 2014
Jane E. Herman, a BRCA2 mutation carrier, is the executive writer and editor at the Union for Reform Judaism. She also volunteers as an Outreach Coordinator for the New York City chapter of FORCE: Facing our Risk of Cancer Empowered and blogs regularly about her BRCA journey and other slices of her life at JanetheWriter Writes…
Two weeks ago, in the midst of staffing the Union for Reform Judaism’s Biennial Convention in San Diego, I ran into a friend of my mom’s. She introduced me to the woman she was with as “Diana’s daughter.” Proud to wear the title, I was sad, too, that a BRCA mutation she didn’t even know she carried had cut short my mom’s life. Yet again, she was missing a Biennial gathering and one of the things she loved most about them—connecting and reconnecting with so many friends and clergy in her beloved Reform Jewish family.
The next day, I got to do something about that.
No, of course I can’t bring my mom back, but I was honored to speak—together with Susan Domchek, MD and Rabbi Marci Zimmerman—in a BRCA awareness session entitled “Hereditary Cancer and the Jewish Community: Knowing Saves Lives.” The session was the outgrowth of last fall’s high holiday BRCA awareness campaign sponsored by the Basser Research Center for BRCA that originally was the brainchild of Ellen Perl, a congregant of Rabbi Zimmerman’s and a breast cancer survivor.
Following opening remarks and a brief introduction of the panelists, Dr. Domchek provided a science-based overview of BRCA mutations, which are 10 times more prevalent among Ashkenazi Jews than they are within the general population. In addition to breast and ovarian cancer, she discussed other cancers associated with these genetic flaws, as well as the mutations’ autosomal dominant pattern of inheritance, which means that if just one parent is a mutation carrier, each child has a 50% chance of inheriting it from that parent. Short videos, detailing a few real women’s BRCA stories rounded out her presentation.
Rabbi Zimmerman then spoke about the important role synagogues can and must play in raising awareness about BRCA mutations within the Jewish community, as well as the critical role of clergy and members in supporting other members and families who carry BRCA mutations, especially as they confront the physical and emotional challenges that can come with them.
Then it was my turn.
My BRCA Story
Ditching my prepared notes, I spoke from my heart, telling the group that my sister and I only learned the details about BRCA mutations because our mother died. Shortly after her death from exceedingly virulent triple negative breast cancer, with sparse knowledge of BRCA mutations on the periphery of our radar, we opted to pursue genetic counseling and testing—not only because she’d died from breast cancer, but also because her sister had previously been diagnosed with the disease many years earlier. (Thankfully, with a mastectomy and chemotherapy, our aunt is a sprightly 86 today!) Although my sister tested negative for a BRCA gene mutation, my results were positive for one of the three Jewish founder mutations carried by one in every 40 Ashkenazi Jews. (When she finally was tested last winter, our aunt, too, turned up positive. Her two grown sons—fathers to three young teens between them—have yet to be tested.)
What if, I wondered out loud, my mom had attended a Biennial session like this one six or eight or even 10 years ago? Would she have connected all the dots in our family, beginning with her father’s prostate cancer in the mid-1980s, a decade before the BRCA genes even were identified? Would her sister’s breast cancer—like her own, diagnosed relatively late in life—have raised a red flag? Would BRCA awareness have changed the trajectory of her life or others’ in our family, including mine?
What if, I wondered to myself — afraid even to formulate the thoughts in my head—we hadn’t been so lucky? Although my oncologist believes there may be some genetic factor protecting the BRCA-positive women in our family from early onset breast cancer, what if that factor, whatever it may be, wasn’t there? With virtually no indication that a mutation was lurking in our family’s genes, we might have lost our mother decades earlier, cheating her and us out of a whole lot of life and love. No less scary, I might have been forced to relinquish my previvor status to a non-prophylactic mastectomy or oophorectomy, radiation, chemotherapy or worse…
In my family, we can’t begin to answer these “What if’s.” But now, with my own risks well under control, these unanswered questions compel me to write blog posts such as this one and to tell and retell my story often. It is my hope that this work of my heart will bring much needed awareness to other families whose members may, unbeknownst to them, be harboring BRCA gene mutations. It is my hope, too, that this information will reach them long before a mother, a wife or a sister dies and the survivors are obliged to confront the painful “what ifs.”
About BRCA and Ashkenazi Jews
Even though the majority of Ashkenazi Jews are not BRCA mutation carriers and only five to 10% of all breast and ovarian cancers are caused by these mutations, it is important to know the possible signs of these hereditary cancers. These include a family member with:
- Ovarian or fallopian tube cancer at any age
- Breast cancer before age 50
- Breast cancer in both breasts at any age
- Both breast and ovarian cancer
- Triple negative breast cancer
- Male breast cancer
Other signs of HBOC syndrome include more than one relative on the same side of the family with any of these cancers:
- Breast cancer
- Ovarian or fallopian tube cancer
- Prostate cancer
- Pancreatic cancer
If you suspect that you or a family member may be affected by hereditary cancer caused by a BRCA mutation, you may wish to contact a genetic counselor, who is specially trained to assess individuals’ personal cancer risks and help determine appropriate risk management strategies. The National Society of Genetic Counselors can help you find genetic professionals in your area.
Monday, January 6, 2014
After the terrorist attacks on September 11, 2001, the world became a very different place. For Ellen Saracini and her daughters, the events changed the course of their lives forever. Ellen’s husband Victor Saracini was the pilot of United Airlines Flight 175, the plane that flew into the second tower of the World Trade Center.
After that day, Ellen’s priority was helping her family heal, not her own personal health and well-being, and she went 10 years without an annual gynecologic exam.
It wasn’t until a close friend was diagnosed with breast cancer that she was inspired to regain control of her personal health. Ellen watched her friend struggle through her treatments and promised that she would schedule her gynecology appointment in her honor. While Ellen’s mammogram came back normal, her pap test did not, and further biopsy showed pre-cancerous cells in her cervix.
When thinking of where she would receive surgical expertise to treat her cancer, the only place she thought of was Penn. “I wanted to fight this cancer with all I had. My family has already experienced so much loss, and I knew I needed to see the best – the best was at the Abramson Cancer Center.”
Ellen found herself in the hands of gynecologic oncologist, Janos L. Tanyi, MD, PhD, assistant professor of obstetrics and gynecology at Penn’s Abramson Cancer Center, and immediately felt comfortable. He was responsive and compassionate; he gave her the utmost confidence when he said “I am going to get you cancer free.” And, Dr. Tanyi stayed true to his word.
Ellen’s surgical procedure did in fact show that she had cervical cancer, and Dr. Tanyi performed a radical hysterectomy. When she went in for follow up scans, what Ellen remembers most vividly was hearing the words, “cancer free.” After losing her husband, Ellen was extremely grateful her daughters wouldn’t have to fear losing their mother as well.
Little did she know, she was about to be faced with the prospect of losing her daughter.
For those unfamiliar with the geography of Penn Medicine, the Hospital of the University of Pennsylvania and the Perelman Center for Advanced Medicine, home of the Abramson Cancer Center, are located along 34th Street. After celebrating her own cancer-free diagnosis, and then hearing of her daughter’s, Ellen said this holiday season she and her family are celebrating their own, “Miracle on 34th Street!”
The message that Ellen wants to convey to others through her story is the importance of paying attention to one’s health. If she hadn’t gone in for her screenings, she may have caught her cervical cancer much later when it possibly wasn’t curable or when she may have needed a much different therapy strategy.
“It is important to take care of yourself – if not for you – then for your family, Ellen said. “Early detection and screening mechanisms saved my life, and gave my girls more time with their mother.”
For more information on how to support gynecological cancer research and patient care please contact Laura Ferraiolo by email email@example.com or phone (215) 746-2948, or click here to make a gift.
Thursday, January 2, 2014
Honey acts as a prebiotic in the large intestine which supports gastrointestinal health as well as aids calcium absorption. Last but not least, mint and cinnamon contain anti-microbial and anti-inflammatory properties making this the perfect side to ward off colds.
- 3 firm ripe pears, cut into 1-inch cubes
- Juice of ½ of a lemon
- 2 cups of cooked chicken breast, cut into 1-inch cubes
- 1 cucumber, peeled, sliced thin and coarsely chopped
- 4 tbsp, red onion, finely chopped
- ¼ cup white vinegar or white wine vinegar
- 1 tsp lemon juice
- 1 to 2 tbsp honey
- 1 tbsp olive oil
- 1/3 cup minced fresh mint
- 1/8 tsp salt
- 1/8 tsp black pepper
- 1 tsp cinnamon
- 4 large lettuce leaves
1. Drizzle fresh cubed pears with lemon juice. In a large mixing bowl combine pears, chicken, cucumber, and onion and set aside
2. Blend vinegar, lemon juice, honey, mint, salt and pepper in food processor/blender until smooth
3. Pour dressing over salad and toss gently to coat all the ingredients. To serve, re-toss gently, sprinkle with cinnamon and arrange on plates with beds of lettuce