Artist and Survivor Jacob Riley-Wasserman Inspires Flip4Cancer.com to Benefit Abramson Cancer Center

Jacob Riley-Wasserman has an eye for the interesting and unusual.

After completing his studies in furniture design at the Rhode Island School of Design, Jacob planned to start a graduate program at New York University when he began having difficulty swallowing. He was only 22.

“I had an endoscopy at Penn Medicine that summer, and went back to New York to begin to prepare for grad school,” Jacob remembers. “It was just before I was to start school again that I learned I had esophageal cancer.”

Jacob returned to his home in New Jersey to receive proton therapy and chemotherapy at Penn Medicine.

It was at the Roberts Proton Therapy Center where Jacob became fascinated by the treatment process. “I was amazed that this beam of proton radiation was hitting my tumor without radiating to other areas of my body,” says Jacob.

As a designer and artist, Jacob was especially drawn to the compensator blocks used to direct the proton beam to the treatment area.

“Compensator blocks are custom made to fit the patient and their particular tumor,” says Jim Metz, MD, vice chair of radiation oncology at Penn. “Before proton therapy begins, the blocks are created based on scans of the patient’s anatomy and tumor site. Each time they come in for therapy, the compensator blocks are placed in the beam line to shape the distribution of protons over the target area while sparing exposure to normal tissue.”

Jacob was so fascinated with the compensator block, he asked to take his home. Then, he had another idea.

“I thought it would be a cool thing to start offering to patients,” says Jacob. “So we are beginning a program in which patients take their blocks home after a small donation is made to patient education at the Abramson Cancer Center.”

Today, Jacob’s tumor in his esophagus is gone, but he is still undergoing treatment at the Abramson Cancer Center.

While on leave from school, he is staying busy in his workshop.

His most successful design is the Star Spangled Spatula. Crafted of solid walnut and stainless steel, the over-sized grilling spatula has been highlighted in national publications like the New York Times, Martha Stewart Living, and Fast Company. Jacob licensed it with New York based firm, Areaware, and it has been sold across the country in home stores including Williams Sonoma, Bed, Bath & Beyond, and shops in some of the nation’s prominent museums. There’s also a smaller vinyl version for kitchen use.

With the spatula’s popularity, Jacob has decided to donate a portion of the percentage he receives from its sale to the Abramson Cancer Center.

“My cancer diagnosis has been a huge blow but I’ve been trying to keep as busy as possible,” he says. “I like to be working and make stuff. I work with my hands. This has been my opportunity to be on top of that. I don’t just have cancer, get treatment, and sit at home. I’ve been using this as an opportunity to create -  the perspective on that is interesting.”

To purchase a Star Spangled Spatula, or to learn more about Jacob, visit www.flip4cancer.com

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“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!

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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

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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.

Hear from other patients and get the facts. The Cure is Within reach.

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Meet Rachel Kachnycz: Brain Cancer Survivor, Positivity Advocate

Rachel Kachnycz is a 24-year-old-woman from Ambler who, at 23, was diagnosed with brain cancer (grade III anaplastic astrocytoma). In this blog, she tells us about where she has come from, and how she is living her life full of positivity. Rachel blogs regularly at Live for Something.

Hello, it’s nice to meet all of you. I am Rachel Kachnycz, a 24-year-old woman from Ambler, Pennsylvania.

I started out my life under interesting circumstances. Both of my parents brought a child to their marriage: my father brought my oldest sister, Alice, and my mother brought my other sister, Ardy. My mom was a teacher in Philadelphia, my dad a carpenter turned manufacturers’ representative. I was the singular child of their marriage. When I was just seven years old, my mother was diagnosed with both thyroid and lung cancer. She died in 1998 at the age of 39. Her death was untimely to say the least. As a child, I understood how momentous a loss I had endured, but I simply had to soldier on through life.

My sole thought was to keep my life together, like a Jenga game, and not let myself fall apart despite losing many of my pieces. In 2011, I became a Bryn Mawr alumna, with a degree in linguistics and languages, specifically Mandarin Chinese and Japanese. I spent a summer in Qingdao, China studying Chinese, and I am waiting for my opportunity to visit Japan.


After finishing school, I was lost. I lived in an apartment and had a part-time job as a stylist at a clothing boutique, but I did not know what my next step would be. I found out there was a bigger plan for me when, on September 30, 2012, I was diagnosed with brain cancer (grade III anaplastic astrocytoma).

Though this diagnosis came to me as a shock, I think that in life we get that for which we ask. I needed something to make me put my silly anxieties and my entire life into perspective. I needed to truly appreciate the opportunity that I have here on this earth. Now I can say that I do.

Fast-forward to now, after a craniotomy and months of radiation and chemotherapy at the Hospital of the University of Pennsylvania, I am a cancer survivor with a duty to help people who are in similar straits. I have found that blogging throughout my cancer journey helped me to express myself, and I recommend recording your experiences as they occur.


It is all about the now. During treatment, I found out that I have a TP53 genetic mutation, passed on through my mother, which results in Li-Fraumeni syndrome, a disease that leaves me 25 times more likely to get soft tissue cancers, and more susceptible for my prior brain cancer to return. I have become an advocate for early screening and genetic testing. I am alive, and I have an obligation to myself to make the cancer experience less lonely for others.

The key is that I do not let the odds stop me. I truly believe that our attitudes define our realities. If I gave into the survival rates, I would be asking for illness to return. Instead, I focus on the things that make me happy and make me want to live a long life.

I volunteer with multiple programs: a pet adoption agency, the Li-Fraumeni Syndrome Association, and through Penn as a Proton Treatment Alumna, mentoring those going through treatment. I also tutor English as a second language, and help out with tutoring at the local elementary schools.

What I plan to do through my blog series is to show you that no matter what, the good in life outweighs the bad. Our minds, bodies, and spirits are one, and we must hone in on the positive. By being grateful for the beautiful moments in each day, we are truly living.

Rachel continues to write about her experiences on her personal blog Live for Something. 
To hear more patients stories from the Abramson Cancer Center, visit TheCureisWithin.com today.

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The Cure is Within: Lauryn's Breast Cancer Story

My mother’s sister, my aunt, had breast cancer and I started mammograms early because of her diagnosis. I had my daughter at 41, and nursed her for almost two years – so I missed a few mammograms in between.

At 43, I had my first mammogram since having my daughter, and that’s when I learned I had cancer.

I’ll never forget the moment in September 2012 when I got the call from my gynecologist, Dr. Bernadette Wheeler. My 2 year old was running around and I walked to a quiet place in my home to listen closely.

Breast cancer. Surgery. Breast removal. Appointments. These are the words I heard.

I brought my daughter to my parents’ home, who have always been extremely supportive, so I could have some time to myself to reflect on this news I’d just received. Soon thereafter, I met with Dr. Wheeler who helped me make an appointment with Penn breast surgeon, Dahlia Sataloff, MD. I felt more comfortable getting all of my care at Penn Medicine, and now at Penn’s Abramson Cancer Center.

Surgery – And a Surprise

On October 24, I was scheduled to have my left breast removed. I was scared, but ready to have this cancer taken out, and start on my journey back to health.

As I was lying in the room, getting ready for surgery, I heard a familiar voice. The curtain opened and there was my best friend, Lynette. She’d driven all the way from Savannah, Georgia to be with me on this day. I was elated. Her visit, and knowing she came all the way up to support me, was the best thing about the day.

The surgery lasted about six hours. I had reconstruction of the breast done at the same time, and everything went according to plan. I was healing well, and the nursing staff was excellent in preparing me for what to expect at home.

Next Steps - Chemotherapy

Because I had positive lymph nodes, I needed both radiation treatment and chemotherapy after surgery, but chemotherapy was first. Again, I felt most comfortable coming to Penn’s Abramson Cancer Center for all of my treatment, so for 16 weeks, I was a “frequent flyer” at Penn getting my chemotherapy.

It was a tough road. Treatments left me nauseous and tired. I’d taken some time off of work, which was helpful, and of course, my parents were there to support me and help me with my daughter. Robin Herzog, a clinical nurse practitioner at the Abramson Cancer Center, was a great source of support for me too. She encouraged me to never give up and really understood what I was going through emotionally.

Around this time, I also had genetic testing to see if I carried the BRCA gene mutation. It was important for me to know because I have a daughter, but thankfully, I did not carry the gene mutation.

The End in Sight

Once my chemotherapy treatments were over, radiation was next. I was able to have my radiation treatments at the Abramson Cancer Center located at Penn Medicine Valley Forge. It was convenient for me, and knowing that I was still being cared for by Penn Medicine I never had to worry about one doctor not talking to another, everyone was on the same team - my team.

Dr. Nagda was my radiation specialist, and after 23 weeks of radiation treatment, I am now, cancer free.

You know, at two, my daughter didn’t really “get” that I had cancer. We talked about how I was sick, and how I had a “boo boo” but I wanted her to guide the way and let her actions and questions tell me how much I needed to tell her.

But even at two, she was always there for me. Throughout my treatment, I wrote her letters – letters that told her how much she helped me, what it was like to go through treatment for breast cancer, and how one day she, too, will have the strength to fight anything life throws her way.

Penn Medicine's Abramson Cancer Center is leading the way in breakthrough cancer treatment. If you or someone you know has been touched by cancer, the power to find the Cure is Within.
Hear our stories and find out more today.

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Breast Cancer Survivor Says It's Time to Fight

Tomika Bryant

Tomika Bryant was diagnosed with breast cancer and treated at the Abramson Cancer Center in 2013. In this article, she discusses her diagnosis and how she learned to heal. She can be found blogging at My Mommy's Neighborhood and supporting other women at Pink Ribbon Stilettos.


Did she really say those words to me? I can hear her talking but it seems that she is speaking a different language. I know my daughter is reading out loud so maybe that is why I cannot understand her. I just let her know that I would need to call her back.

Once the cloud in my head cleared, she confirmed what I already knew. Somehow, I could feel something just wasn't right. Everywhere I looked it seemed like cancer was there. It appeared on TV shows, in books, people talked about it on the radio, and even my daughter wanted to donate money to the cancer society. And now it was inside of ME.

The diagnosis was Triple Negative. You would think hearing negative from a medical professional would be a sigh of relief, but not for me. I heard the words but I rejected what they meant and marked them return to sender. Further research highlighted it is an aggressive form that is becoming more common in women under 50. The main question that was stuck in my head, with tears in my eyes was, "What am I supposed to do now?” The first thing I needed to accept was this diagnosis is not a death sentence. It will only kill me if I let it and I have no intention of that happening. It was time to fight!

Tomika with her husband, Sy, and her son, Nadir and daughter, Eliza

The medical professionals, friends, survivors and literature produced various options for me to consider. After reviewing my choices, I realized that a bilateral mastectomy was right choice. I truly believe this is the best way for me to avoid a recurrence. When I made that choice, I knew my fight was going to inspire others that would follow me.

Another significant part of this process is having a group of professionals that you truly trust to help you along this journey. I received an overwhelming amount of support for the staff at the University of Pennsylvania. From my first consultation, the doctors (Dr. Julia Chou, Dr. Suhail Kanchwala, and Dr. Keerthi Gogineni) and supporting staff were open and welcome to answer each of my questions. I felt extremely comfortable and knew that I could trust them with this very important journey.

The healing, I learned is mental, physical and spiritual. Mentally, you must learn all that you can about the prescribed treatment plan and believe that you will beat this. Physically, you might have to push yourself beyond the norm. There will be days where all you want to do is sleep and just take your meds, but your body needs movement to recover. Pray, and have faith like you have never prayed before. These steps helped me enter surgery on July 26th with a clear mind and belief that I was going to be a survivor.

Strut Strong, Proud to be a Survivor

Pink Ribbon Stilettos was born based on my journey. Through this journey, I realized women do not receive all of the support needed for this mental, physical and spiritual fight. It has definitely made me stronger and increased my desire to help others. And now, Pink Ribbon Stilettos will help others Strut with Breast Cancer. Strut with confidence that you will be a survivor. Strut with strength that you will be a fighter. Strut with faith that this will only make you stronger.

Penn Medicine's Abramson Cancer Center is leading the way in breakthrough cancer treatment. If you or someone you know has been touched by cancer, the power to find the Cure is Within.


Hear our stories and find out more today.

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Hereditary Breast and Ovarian Cancer: A Previvor’s Perspective

Jane E. Herman, a BRCA2 mutation carrier, is the writer and editor at the Union for Reform Judaism. She also volunteers as an Outreach Coordinator in New York City for FORCE: Facing our Risk of Cancer Empowered and blogs regularly about her BRCA journey and other slice-of-life matters at JanetheWriter Writes…

With Halloween candy lining the aisles in my local drugstore just as kids are starting back to school and Christmas tinsel and lights not far behind, it should come as no surprise that pink yogurt lids have already made their annual debut in my grocery store’s dairy section, and pink pens are on sale at Staples.

Whoa…not so fast!

If you rush from today straight into October, you’ll miss National Hereditary Breast and Ovarian Cancer (HBOC) Week, which bridges Ovarian Cancer Awareness Month in September and Breast Cancer Awareness Month in October. HBOC Week was created in July 2010 when Rep. Debbie Wasserman Schultz (FL-20), who herself has been personally affected by HBOC syndrome, introduced House Resolution 1522, designating the last week in September as HBOC Week and the last Wednesday of the month as National Previvor Day.

This year, HBOC Week begins on September 29 and runs through October 5, with National Previvor Day on Wednesday, October 2.

As it does each year, the specially designated week honors individuals and families at significantly increased risk of hereditary cancer because of family history or the presence of a known BRCA (BReast CAncer) gene mutation. These mutations inhibit the body’s ability to fight rapid, unregulated cell growth and suppress tumors. (Here’s information about the basics of BRCA mutations.) HBOC Week also recognizes survivors of breast and/or ovarian cancer, as well as previvors—those who are at risk for these cancers, but remain disease free. In recognition of HBOC Week and the estimated 750,000 BRCA mutation carriers in this country, the majority of whom do not know they are carriers, let me give you a bit of a previvor’s perspective.

Each of us comes to the HBOC table with questions and views based on our own family history and where we happen to be in our own lives. In some families, ovarian cancer prevails; in other families it’s breast cancer. In still others, it’s both. Being a previvor is a blessing—and a curse—and each one of us takes a different path and a different timeframe to reach the decisions that are right for us. Some of us know immediately what we’re going to do. Others take months or even years to research and ponder the options before we reach our decisions, but even then may not act on them right away. Some of us have mastectomies prior to having children, deciding it’s better to forego breastfeeding knowing that we’ll be around to watch our children grow up. Oth-rs opt to complete our families quickly so we can move on to the prophylactic surgeries, while still others choose surveillance for years and years, and, if we’re lucky, don’t ever see the inside of an operating room. Some of us remove our ovaries and not our breasts, others do just the opposite. Our choices and our decisions are as individual as we are.

My Previvor Experience

My own family history unfolded in such a way that I was 47 before I learned I carry a BRCA mutation. Thus I was spared the fertility and childbearing issues that my younger BRCA sisters confront regularly. Within four months of receiving my test results (which was just after quickly losing my mom to triple negative breast cancer caused by a mutation she didn’t even know she had), I had a complete hysterectomy. Although the surgery and recovery were uneventful, I do still deal with the troubling effects of surgical menopause—nearly three years after the fact.

Initially unable to wrap my head around a mastectomy, I opted for surveillance to manage my breast cancer risk. That plan, however, quickly fell by the wayside when a baseline MRI showed a number of things that, according to the medical oncologist in charge of my monitoring, “weren’t perfect and needed further study.” The following week, I had an ultrasound, another MRI, and a needle-guided biopsy, all of which, thankfully, showed no evidence of cancer. Nonetheless, so many tests and so much anxiety in such a short span of time convinced me that I couldn’t live the rest of my life with the potential for a similar ordeal every six months. Within a few weeks, I had consulted a breast surgeon and a plastic surgeon, and had scheduled a prophylactic mastectomy with microsurgical reconstruction using my own abdominal tissue. The process entailed 12 hours of surgery, eight weeks of recovery, and a complication—necrotic tissue that had to be excised, leaving a sizable scar that’s still healing today, more than two years later. Nonetheless, I am pleased with the results, satisfied with my decisions, and extremely relieved that the threat of neither breast nor ovarian cancer hangs over me. At the same time, although my scars—both physical and emotional—fade a little bit each day, I’m not sure they’ll ever disappear completely.

This week, as we transition from Ovarian Cancer Awareness to Breast Cancer Awareness, instead of racing down store aisles in search of yogurt in a container with a pink lid, take a few minutes to acknowledge the many families—including some you likely know—whose members are at risk for hereditary cancer, remembering the unique struggles, challenges and triumphs we face as part of the HBOC community.

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Celebrating Father's Day With Stories of Hope

Father's Day is Sunday, and to celebrate all the men and fathers in our lives who are cancer survivors, we are sharing stories from fathers and sons.

If you are a father, or have a man in your life you'd like to honor this Father's Day, please join us on our Facebook page, and share your own words of inspiration.

"Forever filled with gratitude."

Frank McKee, Jr., talks about what it was like to watch his father overcome prostate cancer with proton therapy at Penn.

I’ll never forget the moment my dad told me he had prostate cancer. I was leaving work, getting ready to get in my car when he called. There was something ominous about his voice that told me I shouldn’t start the car – that I was about to hear some news that would affect me deeply.

He told me he had prostate cancer, and that it was found very early. He sounded calm and collected as he told me he was researching treatments for prostate cancer and had a good chance of overcoming cancer.

Despite his optimism, my heart began to sink. His diagnosis would forever change my world.

Read more of Frank's story here.
 

"I have found a major way to give back and educate others about this disease."

John Turino was diagnosed with colon cancer in 1996. A South Jersey resident, John is married with a son and is chairperson of the tri-state chapter of the Colon Cancer Alliance.

My story begins on May 15, 1996. I was experiencing extreme pain on my left side. I was sent to a radiologist for a barium enema, and X-ray to look at my colon, but the liquid was unable to pass through. A tumor had blocked off the descending colon and broken the membrane. The CT scan confirmed that I had colon cancer.

Read more from John here.  

"How do I tell my children? Their father’s mortality would suddenly jump out at them."

Robert Lustig, MD, is professor of radiation oncology at Penn Medicine, prostate cancer survivor and proton therapy patient. In this blog, he discusses his diagnosis, and how difficult it was to tell his kids he had cancer.

A few years ago I went to the urologist for a problem unrelated to my prostate. I was not at all concerned about prostate cancer as my prostate-specific antigen (PSA) was less than 1.

While my presenting problem was minor, the urologist felt a scar on my prostate and recommended a biopsy. Two days after the biopsy, I read the diagnosis, prostatic intraepithelial neoplasia (PIN).

Read more about Dr. Lustig's inspirational story here. 

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Survivor Strong: 4 Amazing Stories of Women and Moms from the Abramson Cancer Center

Mother's Day is next weekend, and to celebrate all the women and mothers who are cancer survivors, we are sharing their stories on our blog.

If you are a mother, or have a woman in your life you'd like to honor this Mother's Day, please join us on our Facebook page, and share your own words of inspiration.

Inspirational Women and the Power of Philanthropy

For three generations, the Barness family has been tireless advocates for cancer research and patient care in Philadelphia. Starting with the late Irma and Herbert Barness, continuing with sisters Nancy and Lynda Barness, and now keeping the tradition of philanthropy going, Jennifer and Daniel Stern, co-chairs of the Young Friends of the Abramson Cancer Center - the Abramson Cancer Center is grateful for the many generations who help sustain our mission.

This Mother's Day, help honor the courage and bravery of all women affected by cancer, and support life-saving research by making a gift in honor of the special women in your life.

I Survived Cancer, Now I Want a Family

Melanie Gaffney is a proud childhood cancer survivor, and a contributor to the Focus On Cancer blog. Today she is cancer-free, but lives with the after effects of her cancer treatments. In this excerpt from her blog, she discusses motherhood, what it means to her, and how she was worried she couldn't have children.

Before I ever pictured myself in the “what-do-you-want-to-be-when-you-grow-up” role, being a mom always foreshadowed any career or profession. I had a vivid concept/vision in my head about motherhood: the mother I would try to be, the hugs and kisses I would smother a child with, life lessons I would teach, even the sex -- I always envisioned boy and girl twins.

This was even after I was told that a baby, especially “babies,” might not be possible. I had come to terms with knowing that I might not be able to conceive, carry or deliver because of my cancer treatments and health limitations. I knew if I couldn’t conceive, I would adopt. I realized this about the age of 13. I know it sounds young, but I think when forced to battle for your life at a young age, your outlook and decisions about life tend to mature quickly.

Continue reading Melanie's story here.

Determined Not to Let Fear Rule Her Life

Sandy Cohen is the Philadelphia group founder of the national organization, FORCE, which stands for “Facing Our Risk of Cancer Empowered.” She founded the group after she tested positive for BRCA1 and wanted to create a resource in the Philadelphia area for other women who were BRCA positive and needs education and support. In this blog excerpt, she discusses her BRCA status. 


“I grew up with breast cancer,” says Sandy Cohen. “My grandmother died of breast cancer in her thirties, and consequently, my mother became obsessed with breast cancer, and worried she’d develop the disease herself.”

When Sandy’s mother developed breast cancer at 50, and passed away 4 years later, the cycle continued as Sandy became what she called “obsessed” with breast cancer herself.

She also became determined not to let fear of breast cancer rule her own life, and the lives of her two young children and family.

“Genetic testing for BRCA had just come out,” recalls Sandy. “And I decided to have the genetic testing after a lot of hesitation because I didn’t want to imagine my children going through life without a mother.”

Continue reading Sandy's story here. 

From Sun Worshipper to Skin Safety Advocate

Colleen Bronstein is a melanoma and breast cancer survivor, mother, artist, entrepreneur and a contributor to the Focus On Cancer blog. After her melanoma diagnosis in 1999, Colleen started her own business, Sun Threadz, which promotes skin cancer awareness and protection with clothing designed to protect skin from the sun’s harmful rays. 

For me, paradise had always been sitting on the beach in a comfortable beach chair with a good book and nothing but the sounds of the ocean to relax me.

As a child, I spent summers in Cape May – a tradition I continued throughout my life.
The Bahamas are only a couple hours away so every spring, we were on the beach soaking up the rays and just so we were sure we had every sun angle covered, we had a pool put in our backyard.

Unfortunately, I was unaware that my favorite pastimes could cause cancer.

Continue reading Colleen's story here. 

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Celebrating a Cancer-versary

Wedding anniversaries, birthdays, remembering the day you first did something special… these anniversaries are annual reminders of special dates, cherished memories, or proud accomplishments.

However, for people with cancer, there are dates they might want to forget-getting a diagnosis, experiencing a first treatment, or getting bad news.

In this blog, Carolyn Vachani, RN, MSN, discusses her own “cancerversary” and how she faces the annual reminder of her cancer diagnosis.

How do you cope with your own cancerversary?

Read more about Carolyn and her story here.

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Coping with Breast Cancer- Fear, Uncertainty and Insensitive Comments

Colleen Bronstein is a melanoma and breast cancer survivor, mother, artist, entrepreneur and a contributor to the Focus On Cancer blog. After her melanoma diagnosis in 1999, Colleen started her own business, Sun Threadz, which promotes skin cancer awareness and protection with clothing designed to protect skin from the sun’s harmful rays. 

Breast cancer – these are two words that can strike fear in the heart of every woman out there. Fear so great that your mind, body and soul are at the brink of total shut down.

I know this because this is exactly what I experienced the day I was called to come back for an ultrasound after the results of my mammogram. During the ultrasound your senses become so heightened and you are super vigilant to every movement the technician makes. You watch the technician’s face for that telltale sign that yes, there is a tumor in your breast. Then the doctor is invited in to review the ultrasound in motion and makes some suggestions and you know again this is not going to end well.

With the word cancer now attached to you, be prepared for the inevitable insensitive comments from family, friends and co-workers. Probably the most painful comment for me was “you know everyone is thinking this but not saying it – better you than me.” We cancer patients and survivors do not want pity but we do want and need respect for our own personal feelings. Simple gestures of kindness go a long way during difficult times, and I am thankful to family and friends who provided an extra measure of support.

My daughter is my rock, my inspiration, my heart and soul. She was with me every step of the way throughout my diagnosis and treatment. I would move heaven and earth for my daughter and that was my approach to surviving this terrible diagnosis. If you have someone whom you trust implicitly, let them into your life during this time, as they will provide love and comfort that you will need to help you through. They are silent heroes who when called upon are exceptional in giving their love and support.

Life goes on after your cancer diagnosis and you get back what you put into it. For me it is as full as ever, I was recently juried into a highly regarded art show; American Craft Council (ACC) Baltimore and Atlanta. The last time I did an ACC show was July 1999, the month of my melanoma diagnosis. I have a sun protection clothing company, a full time job, a newly married beautiful daughter, new son-in-law, husband and recently rescued Old English Sheepdog; Lewie who came to us by way of Houston,TX, he is a delight and a handful.

I am due for a checkup very soon and I am experiencing the anxiety that accompanies such visits. I do know this will lessen over time but for the time being it is something I must face every six months. I know this will lessen over time because this is my second cancer diagnosis, the first one in 1999; Melanoma. I feel more courageous now than I did for the first number of years after that diagnosis. For now I will be put through the paces and continue to grow stronger and braver.

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Life Worth Living: My BRCA Story

Carlette Knox is a BRCA-positive, breast cancer survivor. She underwent a bilateral mastectomy and chemotherapy in 2010 as part of her breast cancer treatment. In 2011, she had a prophylactic oophorectomy (removal of her ovaries), to decrease her ovarian cancer risk. She founded the website Life Worth Living, where she shares her experience with breast cancer.  In this blog post, she talks about her journey.

In December of 2009, at the age of 34, I was diagnosed with breast cancer. Cancer, unfortunately, had been a topic of discussion in our family for many years. My mother was diagnosed at the age of 35 and she experienced the devastating loss of her mother to this disease while growing up. We also witnessed 2 of my aunts lose their battles with cancer. I knew firsthand the impact this disease had on the women in my family; the need to attack this diagnosis head on was evident. I was introduced to the risk assessment program and with the help of a genetic counsellor underwent testing to determine my cancer risks. Receiving a positive BRCA result armed with me the knowledge needed to make informed treatment decisions, this is when my journey began.

It was March of 2010 when I had my bilateral mastectomy, learning about BRCA put into perspective my risk of breast cancer recurrence and ovarian cancer. My decision to remove the non-impacted breast tissue was supported by clinical trial data as well as my personal experience. Seeing the effects of this disease throughout generations of women in my family was not a tradition I was willing to keep.

It took me about 6 weeks recover from the surgery. It was not a comfortable experience, but what kept me going was the resilience to save my life! I started chemotherapy, undergoing 16 cycles, with the support of a great clinical team. When I felt like giving up they would encourage me to keep on going. The doctors and nurses along with the support of my immediate family and church members helped me to remain hopeful and full of faith which ultimately kept me going through this journey. After chemotherapy it was recommended that I also have radiation therapy since so many of my lymph nodes were positive, this was a walk in the park compared to the chemo. I finished up my treatment at the end of 2010 right before the New Year which was a blessing since my birthday is January 1st!

Research has shown that BRCA positive patients also have an increased risk of ovarian cancer. My gynecologic oncologist recommended an oophorectomy (prophylactic removal of the ovaries to decrease the risk of ovarian cancer). This was a very simplistic procedure done laparoscopically February 2011. While the procedure itself was minimally invasive the decision was not without much emotional turmoil on the inside. In my mind, this would change my landscape as a woman and at such a young age. Ultimately, after researching the effects of ovarian cancer, I embraced this option as a blessing not a curse.

Today, I am physically and emotionally better than I could have ever imagined. I don’t look or feel like any of what I went through. It may sound a bit crazy, but I’m grateful for the journey. My faith is stronger and as a result of this life changing experience I’ve been able to embark upon yet another journey.

“Life Worth Living” is the realization of my passion to raise awareness, empower and support those impacted by cancer and to broadcast the message of hope aspiring them to live.

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A Sister’s Journey: The Cancer Diagnosis

Cassandra Hogue (left) with her sister, Caroline at LIVESTRONG event.

“This was never supposed to happen to her, I remember thinking, outraged, as if she and I had been given some kind of special exemption from sickness and suffering.”

Joan Didion wrote those words in her recent memoir, Blue Nights, about her 38-year-old daughter who was seriously ill. Those, too, were my thoughts when my 58-year-old healthy sister was diagnosed with an advanced form of cancer that was particularly difficult to treat.  

“How can this be happening to her? How can this be happening to me? I cannot bear to lose my sister.” 

I am certain every family member of a cancer survivor has had similar thoughts. For me, shock and fear predominated my emotions for three months after her diagnosis.

“How could her doctors have missed this? Why didn’t they find this sooner?”

For six months she had not been feeling well and was losing weight. I was outraged, disappointed, frightened. I didn’t voice this to my sister, but she knew how I felt, and I knew how she felt. 

I tried to stay positive and stay focused on the tasks at hand. I began organizing her medical care. I made her appointments at Penn’s Abramson Cancer Center, where doctors thankfully saw her within two weeks. We waited for PET scan results to determine if the cancer had metastasized.

The next month was the seemingly endless round of medical tests, procedures, surgeries to insert a chemotherapy port and feeding tube and radiation therapy appointments. I did inordinate amounts of research to educate myself about the disease, the statistics, treatments, mortality rates, alternative therapies. I went to support groups and read up on caregiver roles, but I was still in shock, still expecting our special exemption from sickness and suffering. 

My sister told me one night when we were having a long honest talk. “Let’s make a pact that we can always cry together,” she said.

I cried a lot in those three months.

But then, I unexpectedly turned a corner. Maybe I just exhausted that leg of the grief cycle. Who knows?  I participated in the Philadelphia LIVESTRONG ™ Challenge Cycling event sponsored by the Lance Armstrong Foundation.  More than 7,000 people participated – many of them cancer survivors, family members of cancer survivors or had lost loved ones too soon.

I talked to so many people that day.  I heard many stories, so much suffering and so much strength. My sister came to every rest stop, with a great sign: “My sister is riding for me.” She had just started chemotherapy and radiation, and was wearing sun protection, but she looked great.  

I had to just get back on the bike and finish the ride….no time for crying now. 

And no special exemptions.

More next month…

Learn more about the LIVESTRONG ™ Cancer Survivorship Center at the Abramson Cancer Center.

Join the 2012 Penn Medicine/ CHOP LIVESTRONG ™ Challenge Team.

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