University of Pennsylvania Health System

Focus on Cancer

Monday, March 31, 2014

The Basser Center’s Homologous Hope in Times Square

“DNA Comes Alive in Penn Medicine’s Basser Research Center for BRCA” reads a video billboard in a glittering Times Square, alerting New Yorkers to the exciting unveiling of the Homologous Hope Sculpture at the Basser Center.

Focusing on hereditary forms of cancer caused by mutations in the BRCA1 and BRCA2 genes, the Basser Center now welcomes visitors with a nearly one-ton sculpture, replete with LED lights that glow through the glass walls of the Perelman Center for Advanced Medicine late into the night.



Modeled to resemble a portion of the BRCA2 protein responsible for the all-important function of DNA-repair that helps the body stop the development of cancers, an image of the sculpture lit up Times Square, pictured above.

Find Your Strength from Within at the 5th Focus On Integrative Medicine and Wellness Conference


Penn Medicine's Abramson Cancer Center invites you to a free educational program to learn and experience integrative approaches designed to help you find your strength from within.

Our special guest speaker is Reverend Blane J. Newberry, Pastor of Fellowship, Enon Tabernacle Baptist Church.


Date: Friday, April 25, 2014
Time: 7:30 am - 2:30 pm EDT
Location: Hilton Hotel, 4200 City Avenue Philadelphia, PA

Register for the 5th Integrative Medicine and Wellness Conference here.

Sessions are interactive with time to ask questions.
  • Learn about research findings.
  • Time to network with others.
  • Receive program vouchers or participate in raffle drawings for free integrative services.

Available Workshops

  • Acupuncture
  • Creativity as a Source of Well-Being
  • Look Good...Feel Better® - American Cancer Society
  • Mindfulness Meditation
  • Physical Therapy
  • Reiki and Massage
  • Spirituality & Faith
  • Storytelling
  • Yoga

Who Should Attend

  • Newly diagnosed, in treatment, or survivors of cancer
  • Family members, caregivers, health care professionals
Register for the 5th Integrative Medicine and Wellness Conference here.


Friday, March 28, 2014

5 GI Symptoms No Woman Should Ignore

When it comes to gastrointestinal conditions, symptoms can be as mild as a nagging stomach ache, or as serious as a sharp pain that lasts all day.

“Any symptom that lasts more than a few weeks, or causes interruptions in sleep or your daily schedule should not be ignored,” says gastroenterologist, Farzana Rashid, MD, at Penn Medicine Radnor. “However, there are several symptoms that should never be ignored, as they could be the sign of a more serious problem.”

Dr. Rashid says the following gastrointestinal (GI) symptoms should never be ignored:

Blood

GI bleeding is not normal and needs to be evaluated. There are many different causes of GI bleeding including an ulcer, hemorrhoids and cancer. “Anyone experiencing blood in the stool or blood in vomit needs to be formally evaluated,” explains Dr. Rashid. “At Penn Medicine Radnor, physicians perform procedures like endoscopy, colonoscopy and capsule endoscopy, which uses an encapsulated camera to view the GI tract, in order to evaluate and diagnose GI bleeding.” These procedures are also available on Saturday mornings to accommodate patients.

Change in Bowel Habits

Farzana Rashid, MD,
Women who notice a change in bowel habits should seek evaluation.“If you are passing less frequent stools than you were, or if you have diarrhea that lasts longer than two weeks, you should be evaluated by your health care provider,”says Dr. Rashid. “Diarrhea can be a symptom of something simple like a change in medications or an infection, or more complex like celiac disease or inflammatory bowel disease.”And when it comes to constipation, what is normal? “The answer depends,” says Dr. Rashid. "You know your body the best. There is no rule that states you must have a bowel movement once a day, but if you notice you are going a lot less frequently than you are used to, you should see a physician.”

Long-Standing Heartburn

Since the advent of over-the-counter medications that treat heartburn, many women have become used to self-medicating to treat their frequent heartburn. “Over-the-counter medications are okay, but if symptoms are not getting better in a few days, you should seek medical attention,” says Dr. Rashid.

That’s because long-standing heartburn can be a symptom of something more serious. Long-standing heartburn from acid reflux can cause other problems down the road. “It’s also important to understand that prolonged uses of some over-the-counter medications can have certain side effects including the possible increased risk of bone fractures,” adds Dr. Rashid. Generally speaking, if you are experiencing frequent heartburn, see your doctor.

Difficulty Swallowing

If you have problems coordinating your swallowing, difficulty getting food from your mouth down your esophagus, or you feel like food keeps getting stuck in your chest, it’s important to consult with a physician. “Difficulty swallowing or getting food through the esophagus into the stomach can mean there is an inflammation or some sort of narrowing or blockage within the esophagus,” says Dr. Rashid. “An upper endoscopy or a barium esophagram can be done to see what is going on. Also, Penn offers swallow studies, which are useful for patients who have problems coordinating their swallowing.”

Anemia

When most people think of anemia, or low iron in the blood, the first thing that may come to mind is diet. While having a balanced diet rich in iron can help raise low iron levels in the blood, there may be other causes of iron deficiency. “Women experiencing frequent and/or heavy menstruation may develop anemia,” says Dr. Rashid. “But anemia can also be a symptom of bleeding or malabsorption within the GI tract.” In other words, even adjustments to one’s diet may not have an effect if the body is losing blood or isn’t absorbing the nutrients. “Symptoms of anemia include feeling tired, dizzy, having heart palpitations, or being short of breath,” says Dr. Rashid. “A blood test can determine if someone is anemic; however, only GI testing can determine if there is a cause within the GI tract.”

Gastroenterology Services at Penn Medicine Radnor

At Penn Medicine Radnor, there are seven gastroenterologists experienced in gastrointestinal disorders, including colon cancer evaluation, irritable bowel syndrome, gastroesophageal reflux disease, GI bleeding and celiac disease. Dr. Rashid says a multidisciplinary approach to care at Penn means patients benefit from the expertise of all specialties within the health system. Patients have access to radiology services, pharmacy, and laboratory testing on site at Radnor. “Women who come to Penn have access to nationally recognized leaders not only in gastroenterology, but in all specialties,” she says. “We all work together, which means more comprehensive care under one roof.”

Learn more about gastroentrology at Penn Medicine.

This article originally appeared in the Penn Health for Women Newsletter and on the Penn Health for Women blog.

Thursday, March 27, 2014

From Desperation to Hope— One Man's Mission to Give Back

“Dr. Weinstein is a wonderfully confident surgeon, but he is also a tremendously caring person. During our first meeting he put his hand on my shoulder and said he would make things better—and he certainly did.”- John Mills
John Mills with Dr. Weinstein

John Mills was raised to believe that life is an adventure, and that as long as he was dedicated to his goals, he could do anything. Little did he know, one day he would need to apply these life lessons towards beating cancer.

In February 2013, Mr. Mills was diagnosed with a malignancy under his right jaw bone. He was told it was advanced and very serious—and that he needed to consider getting his affairs in order.

But a glimmer of hope arose when his diagnosing Ear, Nose, and Throat physician, as well as several close friends, recommended he see Gregory S. Weinstein, MD, FASC, Co-Director of the Center for Head and Neck Cancer at Penn Medicine’s Abramson Cancer Center (ACC).

“Those first few months after I was diagnosed, and before I found Penn, were incredibly difficult,” Mr. Mills said. “But my walk out of Dr. Weinstein’s office, where he told me the chances of my cancer returning after surgery was 18 percent was one of the best moments of my life. With every step, I went from desperation to hope.”

The promise of a pioneering surgery

The source of Mr. Mills’ reversal of fortune? TransOral Robotic Surgery (TORS), the revolutionary minimally invasive surgery utilizing the Da Vinci® robotic surgical system that was developed by Dr. Weinstein and Dr. Bert O’Malley at Penn Medicine.

The TORS surgical approach uses a robotic device to remove previously un-reachable tumors of the mouth, voice box, tonsil, tongue, and other parts of the throat – which for many years was only performed by radical surgery that left patients with serious long-term problems – difficulty swallowing, talking and eating. The surgery reduces healing time, and significantly improves patients’ quality of life.

Now, almost a decade after the program was established at Penn, the vast majority of surgeons who have established TORS programs in the United States were trained by Drs. O'Malley and Weinstein.

“Drs. Weinstein and O’Malley aren’t just surgical mavericks, they are wonderfully kind human beings,” Mr. Mills stressed. “Their dedication and skill are matched only by their humanity and personability.”

Almost a year after his surgery, Mr. Mills’ prognosis for his cancer returning is at almost zero percent.

“If we all helped each other, the world would be a better place.”

Before his diagnosis, Mr. Mills had never been to Penn, and found the ACC to be a place filled with dedicated people, very deserving of any help he could give.

“Something magical is happening at the Abramson Cancer Center,” Mr. Mills reflects. “From the gentlemen who park your car to the nurses and social workers who guide you through your journey to the surgeons who operate on you, the positivity and collegiality that lives here is powerful medicine.”

Recognizing that his revolutionary surgery would not have been possible without the generosity of people before him, Mr. Mills believes that a monetary donation would be the best way to show his appreciation.

His generous gift will allow his medical team to give patients the same treatment, and hope, he benefited from.

“There were no better words than hearing 'no cancer.' But my road to recovery was a long one that I found both physically and mentally challenging. It takes a lot of work to get well and I want to make it easier for someone else. By giving back, I hope I can make a small difference.”

For more information on how to support TORS or the Center for Head and Neck Cancer please contact Caitlin Crowe at ccrowe@upenn.edu or (215) 746-2167.

Make a gift to the Abramson Cancer Center here.

Wednesday, March 26, 2014

"I am here today thanks to research and breakthrough discoveries."- Susan, Ride to Conquer Cancer Rider

Susan Ranck was recently diagnosed with gastrointestinal stromal tumor, a cancer so rare, there is not yet a cure. Not too long ago, her cancer was a death sentence but today, Ranck has hope.
“I am beyond grateful that funding from research enabled scientists to discover a drug that renabled me to at least control my cancer and now there are options to offset this terrible disease. I am here today thanks to research and breakthrough discoveries,” Ranck says.

Susan was informed about the Ride to Conquer Cancer and as her way to give back to Penn Medicine’s Abramson Cancer Center, and she immediately registered. Originally she was a bit worried by the fundraising goal, however Ranck is one of the top fundraisers, already raising over $5,000 and she does not plan to stop there.

“It’s amazing how easy the fundraising as been. I set a fundraising goal, which I thought might be a challenge but I will continue to raise that goal and fund-raise as many critical dollars as I can for this important cause,” says Ranck.
Susan Ranck, and her husband.

A Team Effort

“I sent an [outreach] email through the Ride to Conquer Cancer site, which was very easy to use. I used some of the verbiage from the suggested emails, but I think what hooked most people is using a personal reference: my story. Not everyone has a personal story to refer to but everyone knows someone who does, so I suggest people tap into that and make it personal. I sent an email to over 100 people, from my kids' teams, former co-workers, church friends, extended family, anyone I could think of!

Some people I expected to donate did but many more I didn't expect to reply literally came out of the woodwork with donations. It’s very inspiring to me! After the initial email, I followed up with people who might like to ride with me or at least take the “easier” route of donating and I posted the link on my Facebook page, giving updates every few days. I mention The Ride a lot in my daily conversations, which sparks people to ask for an email or offer them more information. It never hurts to ask!"

Making a Difference

This October, Ranck will cycle 150 miles and continues to recruit more people to join her. “I am excited to ride and it’s my hope that with more time and money, the researchers at the Abramson Cancer Centre will find a cure for my disease and all forms of cancer. I encourage everyone to join me as I know we can all cycle 150 miles and together we will conquer cancer!”

Learn more about the Ride to Conquer Cancer,
register for the ride, or donate to a rider or team.

Tuesday, March 25, 2014

Hereditary Breast and Ovarian Cancer: Community Events


2013 was a record year for BRCA1/2 in the news. With Angelina Jolie’s op-ed on her BRCA1 mutation and decision to undergo double mastectomy and news coverage of the BRCA patent case, hereditary breast and ovarian cancer gained a lot of press, more so than ever before. But now in 2014, there is still a need to keep conversations active, since identifying increased cancer risk is necessary to benefit from increased surveillance and risk reduction measures.

Individuals with BRCA mutations have increased cancer risks, most notably breast and ovarian, that must be managed differently. Penn Medicine’s Basser Research Center for BRCA is actively working with Living Beyond Breast Cancer in to increase awareness of BRCA1 and BRCA2, with programming made possible from a Women of Vision grant from the Jewish Women’s Federation of Greater Philadelphia.

While BRCA1/2 mutations are more common in individuals of Ashkenazi Jewish ancestry, people of all backgrounds can have BRCA mutations.

Learn More About BRCA 

Want to learn more about whether you, friends, or family members are at risk for carrying a BRCA mutation?

Register to come to Main Line Reform on Sunday March 30th (link) or Tiferet Bet Israel on Sunday, April 6th (link).

Emily Ko, MD, Discusses Treatment for Endometrial Cancer {Video}

Emily Ko, MD, is a gynecologic oncologist who specializes in endometrial cancer treatment. In this video, she shares her treatment philosophy with us, and how cancer treatment at the Abramson Cancer Center focuses on treatments for the whole person - not just the cancer.

Monday, March 24, 2014

Are E-Cigarettes Safe?

You’ve probably seen the ads – electronic, or “E” cigarettes that say they are an alternative to traditional tobacco products. But are they safer? Do they pose other risks?

We sat with Frank Leone, MD, MS, Director, Comprehensive Smoking Treatment Programs at Penn Medicine to talk about the trend in e-cigarettes.

What are e-cigarettes?

E-cigarettes as a class have been around for about 10 years, though individual brands have not been around that long. They are battery-powered devices that simulate tobacco smoking. An internal heating element vaporizes a liquid solution, which is inhaled and exhaled. Some vapor solutions contain a flavored solution, others have added nicotine.

It sounds safer than tobacco, is it?

In the short term, it probably isn’t that bad. Think about it. When you go see a theater performance, or a band perform, you might be exposed to “smoke” from a smoke machine. That smoke machine is using the same, or similar vapor as e-cigarettes. The vapor in e-cigarettes contains propylene glycol, a substance that is probably not best inhaled over long periods of time.

Short term effects of that smoke machine in a theater are probably okay, but what about the next 10, 15, 20 or 30 years? It might not accumulate in the lungs, but maybe the bladder or liver. It might do different harm than regular cigarettes.

Can e-cigarettes help people quit smoking?

E-cigarettes have the potential to be great if they can help people stop smoking, but the problem is it’s really not a way to quit smoking. It’s just substituting one smoking behavior for another.

In fact, in a recent study, researchers found that teens who used e-cigarettes were more likely to smoke real cigarettes, and less likely to quit than those that never used e-cigarettes.

Nicotine addiction is complex. People who are addicted to nicotine know it’s bad for them, yet they can’t stop. And those who aren’t addicted to nicotine can’t understand why smokers can’t quit. Even family members and friends have a hard time understanding nicotine addiction.

Quit Smoking with Penn

Penn Medicine’s Comprehensive Smoking Treatment Program works hard to help smokers and their families understand why they feel trapped and powerless to change. The team tries to understand the specific needs of every smoker, whether it relates to health, family, work, or other aspects of their lives.

The program is based on the belief that smokers deserve to quit comfortably, so the treatment tends to be aggressive with medications in a way that helps keep that “devil inside” quiet. Most of all, the team respects the problem for what it is. And they respect the people struggling to find a way out from under it.

Specialists in Penn’s Comprehensive Smoking Treatment Program have been fortunate to help thousands of patients overcome nicotine addiction over the years, and it’s amazingly rewarding. Patients keep in touch with the program throughout the years. Our staff answers their questions, provides them with support during difficult times, and helps them to get right back on track if they relapse.

The  Penn Comprehensive Smoking Treatment Program can help you with your nicotine addiction, even if you don’t feel ready to quit. The staff is happy to answer your questions and discuss your options. No hassle. No pressure. Just help. 800-789-PENN (7366).

Sunday, March 23, 2014

AP Quotes Basser Center Director Susan Domchek on Recent Oophorectomy Article

A recent article published in the Journal of Clinical Oncology confirmed the importance of oophorectomy for BRCA carriers and suggested a need for early oophorectomy for women with mutations in BRCA1, one of two genes known to greatly increase risk for breast and ovarian cancer. The article’s take-home message was that women with BRCA mutations benefit from risk-reducing oophorectomy, which confirms earlier published findings.

This article suggested that BRCA1 mutation carriers should have their ovaries removed by age 35, while current guidelines indicate ovaries should be removed by age 35 to 40 for carriers of both BRCA1 and BRCA2.

In a recent Associated Press article, Susan Domchek, MD, director of Penn’s Basser Research Center for BRCA weighed in on the recent findings, stating the importance of weighing the ovarian cancer risk and option of risk-reducing surgery alongside other decisions in a woman’s life:
“Thirty-five isn’t necessarily a magic number,” Domchek said. “If you are talking to a woman who hasn’t yet finished having her kids, it’s a completely reasonable thing to discuss the low risk of ovarian cancer by age 40 in the context of the other decisions that she’s making in her life.” 

However, Dr. Domchek adds her message for BRCA1 carriers: “By age 40, I will be nagging you about this again.”

Read the AP article, and visit Basser.org for more on BRCA screening, support and education.

Friday, March 21, 2014

Helping Your Children Memorialize Their Parent

Jessica Bemis Young Widow
Jessica Bemis is a full-time, working mom of two who lost her husband to testicular cancer in November 2011. Since then, Jessica has been sharing her story on her blog, Hope for Young Widows and working to bring awareness and hope to women and men who have lost their spouses to cancer.

In trying to find ways to celebrate Jim’s life I thought a lot about his favorite things to do, see, work, travel, etc. One way the boys and I have memorialized Jim each year since his death is by releasing balloons on his birthday. The boys write cards to Jim, and then we attach them to balloons and watch them disappear into heaven as if dad received them. It has helped the boys to have a connection to their father.

Some other ways to memorialize your spouse is by requesting that in lieu of flowers a donation be made to a charity or other organization in remembrance of the person; a tree can be planted accompanied by a plaque with your tribute; a trust can be set up to help surviving family members; etc. For us, we chose to memorialize Jim with an annual 5k race.

Jim was an avid runner; he had a passion for running and weight lifting. His dream was to own a gym one day. From spring through fall he would look forward to running in 5k races to support various charities. Jim had a great friend, Mike, who also enjoyed running or rather grew to enjoy running after a 5 mile run through Valley Forge Park. Mike reached out to me to discuss creating a 5k race in honor of Jim’s memory.

The event raises money for Bringing Hope Home, a local charity in the area. Bringing Hope Home helps families struggling to pay their bills while receiving cancer treatments. Aligning the memorial with Bringing Hope Home is a great way to give back to the community and honor Jim at the same time.

Here is Mike’s story…

As I grow older, I realize that some of the most life-changing events are the small but powerful interactions to which we often give inadequate meaning while we wait for the large things (marriage, children, career, etc.) to define us. You have all heard the word nudge. What does it really mean? While to many it may seem a small thing, a nudge is really a push, a stubborn unwillingness to give up, acquiesce, or settle for less than success. Jim epitomized what I call the powerful Tao of Nudge.

For those who knew him it is no surprise that, Jim was first and foremost a devoted family man; son, brother, husband and father. There are so many words that could be used to describe Jim: funny, loyal, determined, courageous, encouraging, forthright, caring, inspiring and loving. He brought these traits to bear in all that he did, whether it was work, running (one of his favorite pastimes), encouraging others, or hanging with friends and family.

Jim was the Tao Nudge in his triumphing repeatedly over adversity and teaching others to do the same, throughout his fight with cancer. Not only was his 18-month battle with cancer a fight he planned on winning, he remained a father, friend and a stubborn mule when it came to giving up or even getting upset at setbacks and nearly innumerable procedures. All the while Jim was an inspiration to me and surely many others. There was a moment, a run actually, that Jim and I went on as a training run leading up to my very first Valley Forge 5 miler..

Learn more about volunteering and registration for the 4Jim5K run.

Wednesday, March 19, 2014

New Art Installation Illustrates DNA Repair and Celebrates Hope for Patients and Families Carrying BRCA Mutations

Penn Medicine’s Basser Research Center for BRCA recently unveiled a sculpture that symbolizes the hope that the Basser Center brings to individuals and families affected by mutations in the BRCA1 and BRCA2 genes.


Created in a ribbon-diagram formation, the sculpture illustrates how a healthy cell repairs DNA that causes breast, ovarian and pancreatic cancers. It is an accurate depiction of the part of the BRCA2 gene responsible for DNA repair. The repair occurs in three stages, as illustrated by a light show within portions of the piece. Weighing more than 500 pounds, the sculpture has 600 LED lights and is suspended from a ring weighing nearly 400 pounds.


Tuesday, March 18, 2014

Should Drug Stores Stop Selling Tobacco?

Recently, the CVS chain announced that it will no longer sell tobacco products in their stores. Their decision comes at a loss, however, as CVS estimates their ban on tobacco products will cost the company $2 billion a year in profits.

We recently caught up with Frank Leone, MD, MS, associate professor of medicine and director of Penn’s comprehensive smoking treatment programs, to ask what he thought of CVS’s newsworthy decision.

What do you think about the decision CVS made to not sell tobacco products?

It's great. Honestly, it’s the kind of thing that suggests to me large corporate organizations have a tremendous capacity to influence societal norms. CVS is being extremely brave stepping out in front to say we are not going to sell cigarettes.

Do you think large corporations have a responsibility to not sell tobacco products?

Each of us has our own little piece of responsibility.

Though cigarettes were never lauded as healthy, by the 1940s and 50s rumors were all around that smoking was hurting people. Smoking was presented as dangerous, but it was also an adult's right to smoke. Pharmacies and corner stores had a hard time not selling tobacco.

CVS’s decision to not sell tobacco products brings the topic, front of mind, that we all have some level of responsibility. What we do or say
can influence the likelihood of increased tobacco use in the future. CVS is taking a stand, and they are going to accept their small part of their responsibility of the tobacco epidemic.

Should also stop selling other products that can affect health, like junk food?

These type of arguments deflect from the reality that nicotine is one of the most addictive compounds we know. Nicotine alters brain chemistry in order to change behaviors, irrevocably. We're not talking about whether or not it’s a matter of preference or self-determination, nicotine exposure causes more deaths, disabilities and disappointments than any other thing.

What do you think of CVS’s decision? Would you like to see other retailers ban tobacco?

Quit Smoking with Penn

Penn Medicine’s Comprehensive Smoking Treatment Program works hard to help smokers and their families understand why they feel trapped and powerless to change. The team tries to understand the specific needs of every smoker, whether it relates to health, family, work, or other aspects of their lives.

The program is based on the belief that smokers deserve to quit comfortably, so the treatment tends to be aggressive with medications in a way that helps keep that “devil inside” quiet. Most of all, the team respects the problem for what it is. And they respect the people struggling to find a way out from under it.

Specialists in Penn’s Comprehensive Smoking Treatment Program have been fortunate to help thousands of patients overcome nicotine addiction over the years, and it’s amazingly rewarding. Patients keep in touch with the program throughout the years. Our staff answers their questions, provides them with support during difficult times, and helps them to get right back on track if they relapse.

Call the Penn Comprehensive Smoking Treatment Program for help with your nicotine addiction, even if you don’t feel ready to quit. The staff is happy to answer your questions and discuss your options. No hassle. No pressure. Just help. 800-789-PENN (7366).

Monday, March 17, 2014

Trailblazer in Women's Sports Becomes Inspiration to Breast Cancer Community

“A breast cancer diagnosis takes you to a place that you cannot know unless you have been there,” said Rutgers University Women’s Basketball Coach C. Vivian Stringer. “Hearing the word cancer is like experiencing the death of a loved one.”

Coach Stringer holds many titles – mother, sister, daughter, widow, and inductee into the Basketball Hall of Fame. She is also a breast cancer survivor of almost 20 years and now, decades after her cancer journey began, she is a powerful voice of strength and hope within the breast cancer community.

Born a coal miner's daughter and raised in a town where people rarely traveled further than 50 miles, Coach Stringer became the first head coach ever to catapult three different college programs – Pennsylvania’s Cheyney University, University of Iowa and Rutgers University – from underdogs to the Final Four.

But Coach Stringer’s professional triumphs have continued to be eclipsed by personal tragedy. The year Cheyney went to the Final Four, her daughter’s childhood meningitis was misdiagnosed, leaving her with special needs. Her husband’s sudden death of a heart attack occurred the same year she took Iowa to the Final Four.

In June 1998, she was diagnosed with breast cancer.

Prior to her diagnosis, Coach Stringer missed out on two years of breast exams as she transitioned to her new role as head coach of the Rutgers Scarlet Knights. Her past experiences with nodules always turned out to be benign and she just didn’t give herself the focus she needed.

“At first I was so angry,” she said of her diagnosis. “I was angry at my body, and I felt like I had betrayed myself.”

Coach Stringer went on to feel fortunate that she was put in the hands of great doctors, and committed nurses, scientists, and researchers, like Gary Freedman, M.D. Dr. Freedman is a breast radiation-oncologist at Penn Medicine’s Roberts Proton Therapy Center.

“Over the years, Dr. Freedman has become a friend. He was patient, caring, and detailed with a dedicated focus on the work that needed to be done in order to get me well. His care wasn’t predicated on who I was or what I did, but that I was a person – scared just like anyone else.”

After her diagnosis, Coach Stringer’s first oncologist recommended she have a double mastectomy. But she was never convinced that the probability of recurrence with a double mastectomy was less than without the surgery— so she opted to keep her breasts.

“During my journey, I learned to utilize my resources, and that I didn’t have to accept a first diagnosis. It is so important for women to learn about their disease so they can better advocate for their health,” Coach Stringer said. “The most important thing to remember is that everyone has to make their own choices.”

Coach Stringer decided to keep her disease from the press and the public and initially did not tell her children, mother, or her team about her diagnosis— and only shared the news with her sisters, her assistant coaches, and the RU athletic director. Her sisters took time off of work to accompany her to her radiation treatments that took place after basketball practices.

“I remember sitting in the waiting room for my radiation treatment,” she said. “I remember looking at all the people who were wondering the same thing I was, how was it all going to end, but also being frightened to death about knowing the news, good or bad.”

Fortunately, she received solace from an unlikely source— a complete stranger who had experienced breast cancer. Lonni was a friend of a friend who lived thousands of miles away, who Coach Stringer began speaking with every night after her diagnosis.

It was only during those long, nightly phone calls with Lonni that Coach Stringer could let go and really talk about what she was going through.

“Though we never met before, I felt like I really knew this woman,” Coach Stringer said. “Speaking to someone who had experienced what I was going through lifted my spirits, and she got me involved in outreach and education.”

Coach Stringer slowly began telling her inner circle about her experience. When the mother of one of her players was diagnosed, Coach Stringer wanted to share, to tell her to have faith and that everything would be okay, but she just wasn’t ready yet. But when another member of the team was touched by breast cancer, she knew she could no longer remain silent.

Now Coach Stringer has shared her story with the world, both on the Oprah Winfrey Show and through her autobiography, titled Standing Tall: A Memoir of Tragedy and Triumph. She has found strength in helping others overcome the difficult moments in their lives, as she was helped all those years ago, by inspiring them with her story.

“Terrible things will happen. But we must remember that there is a reason, and while we might not know it, we are strong enough to handle it and provide a message of hope to others,” she said. “I am comforted in knowing that things are getting better, but we are not going to eradicate this disease unless we all kick in and do our part.”

Not only has Coach Stringer become a pioneer in women's sports, but she's also become an inspiration to cancer survivors everywhere.

For more information on how to support breast cancer research and patient care please contact Laura Ferraiolo by email lferr@exchange.upenn.edu or phone (215) 746-2948, or click here to make a gift.

Thursday, March 13, 2014

Lower Your Risk Of Endometrial Cancer

The majority of cancers that occur in the body of the uterus (womb) are endometrial cancers. The endometrium is the lining of the uterus. Endometrial cancer is the sixth most common cancer in women with over 320,000 cases diagnosed, globally.

Fortunately, the overall survival rate for endometrial cancer is relatively high, at about 69% at the five-year mark.

This disease produces symptoms at earlier stages than other cancers, which leads to an early diagnosis. One early symptom of endometrial cancer is spotting after menopause. This symptom in particular may be overlooked by women as a part of menopause, but it should not be ignored, even if it is just a drop.

The risk of endometrial cancer increases with age, with most incidences diagnosed after menopause. While we can’t stop ourselves from aging we can prevent the development of endometrial cancer, based upon the evidence from the Continuous Update Project (CUP). We can prevent 4 in 10 cases of endometrial cancer by being a healthy weight and being physically active.

Want to lower your risk, but don’t know where to start? Here are 7 keys to making healthy changes that last from AICR:

  1. Focus on individual changes. Studies show that choosing one or two behaviors to work on helps make those changes stick. For example, personally deliver a message to a co-worker instead of emailing them to increase the steps you take in a day.
  2. Ask for help. Your doctor can refer you to a registered dietitian (RD) and a certified exercise physiologist or sign up for AICR’S New American Plate Challenge a 12-week interactive weight loss program. This 12-week challenge offers 3 tiers of support. The free web version offers weekly emails with challenge information and weight loss strategies, access to online recipes, activity tips and a participant sharing forum.
  3. Go public. Set a specific goal for behavior change and tell others about it!
  4. Record  your progress. Make adjustments in your plan. Many websites or apps like Myfitnesspal are free and are designed to track your progress overtime.
  5. Treat yourself. Give yourself something you really enjoy when you reach a milestone on the way to your goal, such as a pedicure after running your first 5k.
  6. Accept setbacks. When attempting to make changes in your life, setbacks will occur. Developing a plan to anticipate and deal with setbacks will help you work through them without derailing your behavior change program.
  7. Be patient with yourself and your progress. Mark Twain once said, “The only person who likes change is a wet baby." By making gradual changes you are much more likely to keep them in the long run.

Carly Roop RD, CSO, is a registered dietitian 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.

Wednesday, March 12, 2014

Would You Shield Your Future Child From Cancer?

Of course we all would, if it were always straight forward. This is the title question of a recent Wall Street Journal Health segment online. Based on WSJ reporter Bonnie Rochman’s article on a family who used reproductive technology to avoid passing on a BRCA mutation to their children, the segment explores the issue of pre-implantation genetic diagnosis for hereditary breast and ovarian cancer caused by mutations in BRCA1 and BRCA2.

BRCA1 and BRCA2 mutations are associated with greatly increased risks for breast and ovarian cancer; as well as moderately increased risk for prostate, melanoma, male breast, and pancreatic cancers.

What is Embryo Screening or Pre-implantation Genetic Diagnosis (PGD)?

Pre-implantation Genetic Diagnosis (PGD) is a special form of in-vitro fertilization (IVF). This can be an option for individuals who carry a known genetic condition and wish to greatly decrease the chances of passing it on to a child. PGD is also known as "embryo screening" and is performed in a laboratory. This procedure is used in combination with IVF to test embryos (fertilized eggs) for a specific genetic mutation, such as a BRCA1 and BRCA2 gene mutation.

The testing is performed before transferring the embryo into the woman's womb. Only the embryos that test negative for the known mutation will be transferred. As the Wall Street Journal highlights, PGD for BRCA1 and BRCA2 and other diseases is a very personal decision and can be seen by many as controversial. Even the couple Rochman initially followed had different perspectives on using the technology.

BRCA Gene Mutation and Reproduction

The Basser Research Center for BRCA is actively researching the impact of BRCA1 and BRCA2 mutations on reproductive attitudes and behaviors. Basser researcher Clarisa R. Gracia, MD, MSCE is investigating the impact of carrying a BRCA mutation on fertility and reproductive decision-making.

“PGD is an option, so we tell patients about it,” says Rebecca Mueller, MS, CGC, CCRC, outreach coordinator for the Basser Center with a strong background in genetic counseling. “But it is a tentative conversation: We broach the topic, explain the option and let the patient take the lead. Some welcome the information and consider it an opportunity to end the pattern of cancer risk within their family. Others say that they or their kids may not be here had the testing been available and the conversation may end there.”

The Basser Research Center for BRCA aims to educate individuals who carry BRCA mutations about their options across the board. “Whether we are talking about genetic testing, cancer screening, prophylactic measures, treatment choices, or reproductive decisions, it is our goal to provide information and support to families facing BRCA” says Basser Center Director, Susan Domchek, MD.

Watch the Wall Street Journal piece online, 
and visit Basser.org for the latest in BRCA news, education and research.

#ColonCancerACC Twitter Chat 3/20

Currently, colon cancer affects 1 in 20 people. One in 20.

Symptoms like persistent stomachaches and pains, rapid weight loss and bloody bowel movements may be symptoms of colon cancer.

And sometimes, like Michele learned, there are no symptoms at all.

“[A colonoscopy] was the only thing I hadn’t done, and I really didn’t think much of it,” remembers colon cancer survivor Michele. “I felt great; there wasn’t a reason to get one other than I was 50 and it was recommended I get one at 50.”

Two months before her 51st birthday, a colonoscopy revealed she had cancer.

“I probably had colon cancer for years before I went for a screening,” she says, “but without the screening, I may have found out too late.”

#ColonCancerACC Chat on 3/20

Colon cancer is often beatable when detected and treated in its early stages. Colon cancer van even be prevented altogether when polyps are removed before they develop into cancer.

Join Penn Medicine and the Abramson Cancer Center for a Twitter chat on Thursday, March 20 from Noon to 1 pm ET, #ColonCancerACC as we discuss colon cancer, prevention, and the factors that increase your risk.

Our panelists will include:


Save the Date

Mark your calendars, pack your lunch. We’ll be sharing important information that could save your life.

#ColonCancerACC
Thursday, March 20
Noon to 1 pm ET
On Twitter

Spread the Word

Helping someone learn the importance of regular colonoscopies can save a life. Share one of the images in this blog post, post a message on your Facebook timeline, or share a tweet.

Facebook post

Are you at risk?

Join @PennMedicine and nationally recognized experts from @PennCancer for a Twitter chat Thursday, 3/20 from Noon to 1 pm ET when we will discuss what you need to know about colon cancer.

Share with a friend/parent/family member/loved one – it’s info you don’t want to miss.

Tweet

Knowing risk and prevention can save your life. Join @PennMedicine @PennCancer for #ColonCancerACC chat 3/20 at Noon ET.

Monday, March 10, 2014

“If I can save one person from being where I was, that makes me happy.” - Michele

Michele on her 2-year "cancerversary."
At 50, Michele was feeling great. She’d done everything she was supposed to do to take care of her health.

Annual physical exam? Check.
Mammogram? Yup.
Echocardiogram? Done.
Skin check for moles and skin cancer? No problem.
Bone density scan? Solid.

But the one thing she’d put off was getting a colonoscopy.

“It was the only thing I hadn’t done, and I really didn’t think much of it,” remembers Michele. “I felt great; there wasn’t a reason to get one other than I was 50 and it was recommended I get one at 50.”

Two months before her 51st birthday, on Valentine’s Day, Michele had her colonoscopy in central New Jersey close to her home.

Her doctor found cancer. That colonoscopy saved her life.

“He told me he found lesions, and that I needed to see a specialist surgeon,” says Michele. “I left there dazed and confused.”

Michele met with Dr. Najjia Mahmoud, MD, Chief of the Division of Colon and Rectal Surgery in the Department of Surgery at Penn Medicine, one week later.

“Dr. Mahmoud had a calming effect,” says Michele. “She spoke to me in a way I could understand the process for my situation, she actually made it sound easy – and that put me at ease.”

It was stage 3 colon cancer, and after her surgery at Penn, Michele had 12 rounds of chemotherapy under the care of Ursina Teitelbaum, MD, medical oncologist at the Abramson Cancer Center.

“I was so impressed with Dr. Teitelbaum,” says Michele. “I walked into that first visit with two pages of questions, and she went through and answered each and every one.”

Michele got through those chemotherapy treatments, but it wasn’t an easy road.

“Chemotherapy was tough, but I got through it with the support of my friends and family, and the determination I had to get through it,” says Michele. “I walked every day – even if it was slow – because I knew that’s what I had to do.”

Today, Michele is cancer-free and is an advocate for colon cancer awareness. She’s participated in the Undy 5000 race, numerous awareness events, and supports multiple organizations through volunteer work. This year again, she had Governor Christie proclaim March, 2014, Colorectal Cancer Awareness Month in New Jersey.

“If I can save one person from being where I was, that makes me happy,” says Michele. “It’s estimated that 1 in 3 people are not up to date with their screenings, and that 1 in 20 will be diagnosed with colon cancer. Those numbers alone should alarm people to take action.”

Michele reminds us she had no symptoms of colon cancer – no pain, no blood in her stool, and her annual blood work was normal.

“I probably had colon cancer for years before I went for a screening,” she says, “but without the screening, I probably would have found out too late.”

Learn more about colorectal cancer treatment at the Abramson Cancer Center. 



We're sharing prevention information and facts about colorectal cancer on our Facebook page all month long. "Like" us to learn more!



Friday, March 7, 2014

Live Online Video Colorectal Cancer Chat with Penn Medicine Experts 3/12

March is Colorectal Cancer Awareness Month. To learn more about screening, symptoms, treatments and the latest research, we’re teaming up with 6ABC for a live, streaming webchat at 6abc.com/pennmedicine

Colorectal Cancer - Did you know?

Colorectal cancer, cancer of the colon and rectum, is the second leading cause of cancer deaths in the United States.

You may be at a higher risk for colorectal cancer as you get older, but with education and screening, you can help reduce your risk.

Screening Can Save Lives

For those 50 years and older, getting a colorectal cancer screening can be life saving.

Symptoms like the appearance of polyps in the colon or rectum, persistent stomach aches and pains, rapid weight loss and bloody bowel movements may be key indicators. While these symptoms may be indicative of other ailments, colorectal cancer screenings can help you take the right next steps.

This March, Colorectal Cancer Awareness Month, be sure to ask the right questions, and get the facts.

Our Experts Answering Your Questions

Want to know more about:
  • Colorectal Cancer Screening?
  • Risk Evaluation?
  • Hereditary Risk?
  • Cutting Edge Treatment Options?
  • New Breakthrough Clinical Trials?
  • Survivorship?

James M. Metz, MD is the Vice Chair of the Clinical Division and Department of Radiation Oncology at the Hospital of the University of Pennsylvania, as well as the Associate Director for Clinical Services and Programs at the Abramson Cancer Center, and Najjia N. Mahmoud, MD is the Chief of the Division of Colon and Rectal Surgery as well as an Associate Professor of Colon and Rectal Surgery at Hospital of the University of Pennsylvania.

These Penn Medicine experts will be answering user-submitted questions in a live online chat.

To submit your questions and set up an email or phone reminder for the live webchat,
please visit 6abc.com/PennMedicine
.

Thursday, March 6, 2014

Equal Time

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 FORCE: Facing our Risk of Cancer Empowered in New York City and blogs regularly about her BRCA journey and other slices of her life at JanetheWriter Writes…

Earlier today, I promised my sister I wouldn't use social media to check in at the endoscopy center. And I didn't.

However, I did not promise her I wouldn't blog about my experience, but don't worry, I'll spare you the gory details.

Nonetheless, if I'm truly going to advocate for cancer detection and prevention, I can't do it just for this test; I have to do it for colonoscopies too. (As a BRCA2 mutation carrier, I am at increased risk of several types of cancer besides breast and ovarian. These include pancreatic and primary peritoneal cancer, as well as melanoma. Although some early studies suggested a possible link between BRCA mutations and increased risk of colon cancer, it has not been confirmed in subsequent studies.)

Read more about Jane's experience, and her colon cancer screening experience on her blog. 
 

Wednesday, March 5, 2014

Surgery for Colorectal Cancer

Cary B. Aarons, MD, is an assistant professor of surgery in colon and rectal surgery. In this blog, he discusses surgical treatment of colorectal cancer.

Colorectal cancer is the third most common type of cancer diagnosed in the United States.

Fortunately, the overall prognosis for treating colorectal cancer is quite favorable if it is discovered early. In fact, up to 90 percent of patients whose colorectal cancer is diagnosed and treated in the early stages can be cured.

The management of colorectal cancer requires a team approach. From the time of diagnosis, comprehensive treatment demands a coordinated effort between the patient, family, gastroenterologist, oncologist, and surgeon. At Penn’s Abramson Cancer Center, every patient receives a multidisciplinary approach to their cancer care, meaning every member of the team involved in their care works together under one roof.

Experienced patient navigators also assist patients throughout the course of their treatment.

The treatment recommended primarily depends on the stage of the cancer, or the extent to which the cancer has spread.

Surgery offers the only potential for curing cancers localized to the colon and rectum. Invasive cancers localized to the colon typically require a partial colectomy, a procedure in which the part of the colon with the cancer is removed. This procedure can often be done with a laparoscopic approach. The surgeon makes smaller incisions in the abdomen through which specialized cameras and instruments can be inserted. This minimally invasive approach often results in less painful, quicker recovery and shorter hospital stays with similar results to conventional open surgery.

For rectal cancers, your team may recommend chemotherapy and radiation prior to surgery to decrease the possibility of local recurrence after surgery.

Advanced cases of colorectal cancer that have spread to other parts of the body require chemotherapy. In select cases, there may be a role for surgery.

Learn more about colorectal cancer treatment at the Abramson Cancer Center. 



We're sharing prevention information and facts about colorectal cancer on our Facebook page all month long. "Like" us to learn more!


March is colorectal cancer awareness month – learn more.

Tuesday, March 4, 2014

Show Us Your Blue!


The Colon Cancer Alliance (CCA) is a community that provides hope and support to patients and their families, while saving lives through screening, access, awareness, advocacy and research.

Why should you wear blue? That’s the question the Colon Cancer Alliance (CCA) wants communities, businesses and individuals across the country (and even the world) to answer during its Dress in Blue Day™ program on Friday, March 7st.

The CCA’s National Dress in Blue Day takes place every year on the first Friday in March as the official kickoff to National Colorectal Cancer Month. The program promotes awareness of colon cancer, encourages people to get their colon checked and ultimately, is working to put an end to this often preventable disease. On this special day, thousands of people throughout the United States will be showing their support by dressing in blue and talking to people about colon cancer and screening.

Facts About Colon Cancer

Currently, colon cancer affects 1 in 20 people.

More than 143,000 Americans will be diagnosed with the disease this year and 51,690 people will lose their battle with the disease.

But there is good news: Colon cancer is often beatable when detected and treated in its early stages or can be prevented altogether when polyps are removed before they develop into cancer. Dress in Blue Day works to make sure everyone knows this – encouraging local communities, businesses and the general public to support awareness of colon cancer by dressing in blue and hosting educational events.

For more information about Dress in Blue Day and to access these free resources, visit www.dressinblueday.com. And this March, help us spread colon cancer awareness – it could save someone’s life!

Save the Date for the 2014 Focus On Colorectal Cancer Conference

Gain knowledge and take action by getting important information from our expert faculty. Receive hope and support by networking with others.

This year’s conference is intended to help those with colorectal cancer become active participants in their care through both the physical and emotional journey. Specifically, we will present sessions providing information tailored to the specific needs of those at risk, in treatment and survivors of colorectal cancer.

This event is FREE of charge. Breakfast, lunch and parking will be provided.

Date: Friday, June 20
Time: 7:30 am to 10:30 am
Location: Hilton Hotel, 4200 City Avenue, Bala Cynwyd, PA



Visit the Abramson Cancer Center on Facebook to stay up-to-date and learn when registration opens.
Don't forget to check back March 7th to see Penn Medicine friends and family wearing blue!

Sunday, March 2, 2014

How a Pair of Genes Changed a Life

“Muir-Torre is a hiccup in my genetic repair cells that creates a high risk of many types of cancer. But ironically, this genetic mutation also saved my life.” -Julia*, cancer survivor

Julia’s* cancer journey began in June 2009 when, at the age of 29, she was diagnosed with uterine cancer—a disease her mother Jane* battled and won years before. At the time of Julia’s diagnosis, Jane discovered she had Muir-Torre syndrome—a form of Lynch syndrome— an extremely rare genetic disease that makes its victims highly susceptible to cancer.

Further testing showed that Julia carried the MSH2 mutation, one of the two genes linked to Muir-Torre syndrome.

Julia found hope and answers about her rare genetic mutation at the Abramson Cancer Center’s Gastrointestinal Cancer Risk Evaluation Program from Anil Rustgi, MD, who identified her mutation and created a preventive care regimen, and from Steven Fakharzadeh, MD, PhD, a genetic skin disorder specialist who monitors her skin for mutations that can occur with Muir-Torre syndrome.

Julia’s story didn’t end there. During her treatments, and because of her MSH2 gene, she made the difficult decision to have a total hysterectomy. While this radical procedure took away her ability to have biological children, it led to a diagnosis of early stage ovarian cancer. Fortunately she did not need to undergo radiation or chemotherapy because both cancers were detected early in their most treatable stage.

“I was very lucky,” she explained. “Most women with ovarian cancer do not know they have it until it’s progressed.”

Today, Julia is cancer-free and actively spreading awareness about this complicated, rare genetic mutation that can be a precursor to cancer. She wants to pass on the most important lesson that she took away from her experience— knowledge and preventative care are the keys to survival.

She started with her family, and has already seen positive results. Her uncle who tested positive for Muir-Torre syndrome found a benign polyp during a colonoscopy. At 49, an age below the timeframe for routine testing, he is already benefiting from getting tested early.

“If I helped just one person think twice about their own family genetic makeup or current health status, then I know, despite everything, I made a difference.”

Read Julia’s personal account of her cancer journey here.

To learn how to support research efforts for Muir-Torre syndrome contact, Katie Dewees-Detzel at kdewees@upenn.edu or 215-746-1927.

*Pseudonyms

Saturday, March 1, 2014

Julia’s Story: How a Pair of Genes Changed My Life


My story began in June 2009 when I found out that the word “genes” can mean more than something you wear on the weekends. The symptoms that would lead me to a startling discovery started right before my 29th birthday. I had long, heavy menstrual cycles for months that were blamed on generic birth control or hormones. In a visit to my gynecologist a polyp in my uterus was found. With my mother’s history of endometrial/uterine cancer I figured my doctor at the time would look deeper into my symptoms. He didn’t. I waited a few months, but my conditions grew worse.

At the time, I was scheduled for surgery in February 2010 with no concerns that I had anything to worry about. I was house shopping with my boyfriend and looking towards our future. I was young, full of life, and nothing could happen to me, right?

Wrong.

Little did I know that my life was about to change. The words of my doctor will forever be burned into my brain as I sat at my desk on what was supposed to a typical work day and heard my doctor say, “The results came back that the polyp was covering your entire uterus and it's cancer.”

Getting to Know my Genes

Calming down from the shock, I had to tell my family the worst news of my life – that I also developed endometrial/uterine cancer. Despite my shock, fear, and anxiety I immediately sprang into action and became my best advocate. I did my research, and spoke to my mother about a rare genetic disease that she had recently been diagnosed in a recent biopsy – Muir-Torre syndrome (a form of Lynch syndrome) that knowingly affects 1% of the population.

My mother visited with genetic specialist, Anil Rustgi, MD, Chief, Division of Gastroenterology, Penn Medicine, and he and his team concluded that she in fact had this genetic mutation with a 50% chance of passing this disease onto her children. There have been two genes linked to Muir-Torre syndrome - MLH1 and MSH2. Once Dr. Rustgi knew of my uterine cancer he quickly had me tested and found that I possessed the MSH2 gene, explaining my recent cancer diagnosis. I met with Dr. Rustgi and began a preventive care regimen that I will have to follow the rest of my life.

My genetic mutation was explained to me as hiccups or misspelled words in my genetic repair cells creating a high-risk of many cancers. This includes an 80% chance of developing colon cancer, 60% uterine, and a greater risk of others such as stomach, bladder, urinary tract, prostrate, liver, ovarian, and various skin cancers.

Informed, Taking Action

With all of the new information about Muir-Torre I did not want to take any chances and by Spring of 2010, I decided to get a second opinion of my Stage 1 endometrial cancer. I had been placed on high doses of medication that was supposed to suppress the cancer long enough to possibly preserve eggs as I had not yet had children. Unfortunately, my condition was worse than expected and I had to make the decision to abandon my dreams of starting a family and prioritize based on my survival. My surgery was scheduled for two weeks before my 30th birthday.

My gynecological oncologist asked if I wanted to leave one ovary as a sliver of hope to still have children. Knowing the risks of Muir-Torre, I ended up making the best and most difficult decision of my life to remove everything in a total hysterectomy which included my ovaries. The moments before heading to the operating were the hardest as tears rolled down my face and I said goodbye to my parents and my supportive boyfriend of almost eight years. I felt like my life was over and I was scared to see where it was would lead.

After the surgery I had many complications and found out a couple weeks later that I also had Stage 1 ovarian cancer in my left ovary. The news was hard to digest, but thankfully my gynecologic oncologist at Penn’s Abramson Cancer Center and his team shared that I did not need to have radiation or chemotherapy due to both separate cancers being contained in their respective organs. I was very lucky as most women with ovarian cancer do not know they have it until it’s progressed.

Cancer Free

Today, I am now almost four years cancer-free and cannot express how proud I am of myself to have come so far. I feel as though my mother saved my life because without the knowledge of the Muir-Torre genetic disease my outcome could have been very different. Still, I face many side effects that challenge me every day including chronic stomach pain, weight gain, and the inability to have children. I require a yearly endoscopy/colonoscopy and urinalysis plus visits to the Abramson Cancer Center’s Steven Fakharzadeh, MD, PhD, Director of Genetic Disease in the Dermatology Department.

Dr. Fakharzadeh is a specialist in genetic skin disorders and he screens me for skin mutations that can occur with Muir-Torre syndrome. During some check-ups with those doctors I have had to undergo procedures, treatments, and biopsies adding to my already difficult situation. I know I will not ever be the person who I was, but I am fighting really hard to be the person I want be in the future. I never let the negativity consume me. I still live my life as much as I can and continue to add new milestones every day.

Awareness for Muir-Torre and for ovarian cancer have become very important to me. I’ve been involved in walks, seminars, and share my story with others in hopes of making a difference. I know I can still look forward to getting married, furthering my career, adopting or using a donor egg, and achieve my dreams and goals. I know my illness will always be a part of me, but it does not define who I am.

Lessons Learned

The most important lesson I took away from this whole experience is that instincts and preventative care are the keys to survival. Without knowing of my mother’s genetic disease, I might have thought uterine cancer was the only genetic link and not opted for a full hysterectomy which led to the ovarian cancer discovery. In addition, my mother and I have been encouraging our family to get tested to see if they too could be at risk. My uncle who actually tested positive would not have gone for a colonoscopy last year if he wasn’t aware of this mutation. His results showed a benign polyp at age 49, an age below the time frame for routine testing which would have put him at risk if he didn’t get tested early.

If I helped just one person think twice about their own family genetic makeup or current health status, then I can know that despite everything, I made a difference. The best advice I could offer is to stay positive no matter how much it tears you down, fight for the life you deserve, and be proactive because no one at any age, class, or race is invincible to cancer, disease, and illness. Who knew how much a pair of genes would change my life!

Julia found the individualized care she needed at the Abramson Cancer Center.
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