University of Pennsylvania Health System

Focus on Cancer

Monday, October 28, 2013

Biannual Amyloidosis Support Group 11/2/13

The Biannual Amyloidosis Support Group Comes to Penn Medicine

In partnership with the Amyloidosis Foundation, Penn Medicine's Amyloidosis Clinic will be hosting this year's Biannual Amyloidosis Support Group event. The event will featue a questions and answers segment with guest speaker Nishant Tageja, MD, Metabolism Branch of the National Cancer Institute/ National Institute of Health as well as the Penn Medicine doctors and staff of the Abramson Cancer Center Amyloidosis Clinic.


Topics to be discussed throughout the event include:
  • Announcements of new clinical trials and treatments with Brendan Weiss, MD, Penn Medicine Amyloidosis Clinic director and Nishant Tageja, MD
  • How LLS can help AL amyloidosis patients with Nancy Chumm, Patient Services Coordinator for Leukemia & Lymphoma Society
  • An informal discussion over lunch with speakers and participants
  • Nutrition and Physical Therapy for amyloidosis patients
  • Raising awareness with Lance Miller of the Chip Miller Foundation

Join us Saturday November 2nd, 2013 
from 10:00am - 2:00pm
Perelman Center for Advanced Medicine
3400 Civic Center Blvd, Philadelphia, PA 19104
Room SCTR 10-14-146AB
PARKING IN PENN TOWER IS FREE / WILL BE VALIDATED
Follow Signage - Complimentary Food Served -
RSVP for the Biannual Amyloidosis Support Group 

Friday, October 25, 2013

Focus On Brain Cancer Provides Knowledege and Support to the Brain Cancer Community

From left to right: Mike Saperstein, Rachel Kachnycz, Marnie Passaretti, Mark Kutner, and Dr. Steven Brem (moderator)
The brain drives everything we do and powers our emotional connection to the world, making a brain tumor diagnosis particularly harrowing with the potential to be incredibly isolating.

The Abramson Cancer Center of the University of Pennsylvania held its 3rd annual Focus on Brain Cancer Conference – and for many attendees, the need to be surrounded by the brain cancer community was the event’s greatest draw.

“My experiences with my support group, many of whom are here today, taught me to gather strength and hope from those around me,” said Lindsay Leiper, III, who is a six year survivor of a grade 4 glioblastoma. “I came today, on my birthday, to celebrate another year of life with my fellow survivors – and the men and women who saved me.”
Linsday Leiper listens on as fellow brain tumor survivors tell their stories

The Abramson Cancer Center's Focus On Cancer conference series is made possible through philanthropic and grant support as well as partnerships with advocacy and outreach organizations. The conferences are free and open to cancer patients and survivors as well as their family members and health care providers. The day provides patients with important and timely information from Penn Medicine’s expert faculty so they can to better advocate for their health.

The topics presented by members of our esteemed faculty included Penn’s new Center for Personalized Diagnostics, advancements in surgery of skull base tumors, promising clinical trials, and Penn’s extensive radiation therapies available through the department of radiation oncology and Roberts Proton Therapy Center. Penn Medicine’s promising advances in brain mapping and imaging was also a focus.

“Our 3D approach to tumor imaging informs neurosurgeons in ways never before possible, making the invisible, visible and giving them the power to map the safest surgery plan and increase positive surgical outcomes,” said Steven Brem, MD, director of neurosurgical oncology at Penn Medicine.

From left to right:  Rachel Kachnycz, Bill Staley, and Pam Staley
Bill Staley is a patient who knows the Roberts Proton Therapy cyclotron intimately. He didn’t just receive treatment from it, his company helped install it. A self-proclaimed "bad patient," Bill found it hard at first to accept help while sick. “However,” he said, “the treatment I received— from my doctors to the social workers to my fellow patients in my support group— taught me that I never knew how good care could be until I came to Penn Medicine.”

A highlight of the afternoon was the “Two for the Road—the Doctor Patient Journey” panel where patients shared important insights about what they have learned from their cancer journey.

It was during this panel that some of the most poignant and sage advice was delivered – by 24 year-old Rachel Kachnycz. “I am moving on as a survivor and giving myself the time and space to re-enter the world,” she said. “I am learning to be kind to my body and patient with myself. Cancer does not have to be your life— it can be a moment that you teach yourself to move on.”

She went on to say, “I know I speak for all of us here today when I say we plan to be the minority. We plan to survive.”

These conferences are made possible through philanthropic support. Help patients and families empower themselves with knowledge and support to battle cancer by making a gift today.

Support the Abramson Cancer Center at Penn Medicine here. 

Amyloidosis Treatment at Penn

Bringing together expert physicians from multiple specialties, the Amyloidosis Clinic at Penn Medicine is leading the way in the evaluation and management of patients with systemic amyloidosis. This Focus On Cancer post, with thanks to clinic director Brendan M. Weiss, MD, highlights the causes, diagnosis and treatment of amyloidosis.

What is Amyloidosis?

Amyloidosis is a rare and potentially life threatening disease that occurs when toxic proteins build up in your organs. There are different types of amyloidosis that can affect different organs, most commonly the heart, kidneys, liver, spleen, nervous system and gastrointestinal tract.

Causes of Amyloidosis

Amyloidosis is caused by one of over 20 toxic proteins that are produced by different sources in the body. Careful diagnosis to determine the correct protein source is necessary to decide on the correct treatment. The most common source of the toxic proteins are bone marrow plasma cells, a type of immune cell.

Amyloidosis Diagnosis, Treatment and Clinical Trials

As amyloidosis is both rare and complex, seeking a proper diagnosis is important, and may require seeing multiple specialists. After receiving a diagnosis, treatment options for Amyloidosis need to be personalized.

In addition, new approaches and new treatments are always emerging and our team at Penn Medicine has access to these options and the experiences in helping patients choose the most appropriate options.

The Amyloidosis Clinic at Penn Medicine

Growing awareness and the latest research have led to new treatment approaches which require a multidisciplinary team. The Amyloidosis Clinic at Penn Medicine brings together expert physicians from multiple specialties.

Amyloidosis treatment Penn Medicine draws on the personnel and resources of all relevant specialties including:
  • Cardiology: Heart failure management, echocardiography, endomyocardial biopsy, arrhythmia management, cardiac transplantation
  • Nephrology: Nephrotic syndrome management, renal biopsy, renal transplantation
  • Hematology-Oncology: Chemotherapy, stem cell transplantation
  • Neurology: Peripheral neuropathy evaluation and management

Additional specialists in pulmonology, rheumatology and organ transplantation are also available for
consultation. Whenever possible, initial meetings with the appropriate specialists are performed on the same day in Philadelphia.

For consultations, scheduling and more information on Amyloidosis, please contact the clinic by email, or call 800-789-PENN (7366).

The Amyloidosis Clinic at Penn Medicine is located in Philadelphia, at the Ruth and Raymond Perelman Center for Advanced Medicine and the Heart and Vascular Pavilion at Penn Presbyterian Medical Center. Ongoing consultations and care can be arranged at Penn Medicine at Cherry Hill and Valley Forge as well.

Interested in joining a support group?

Join Penn Medicine and the Amyloidosis Foundation
Saturday, November 2 from 10am-2pm for the
Biannual Amyloidosis Support Group

Find out more and RSVP today.


Can Men Get Breast Cancer?

We tend to think of breast cancer as only a woman’s disease. While it is true breast cancer affects mostly women, male breast cancer makes up less than one percent of all breast cancer cases.

The following types of breast cancer are found in men:
  • Invasive ductal carcinoma. Cancer that has spread beyond the cells lining the ducts in the breast. Most men with breast cancer have this type of cancer.
  • Ductal carcinoma in situ. Abnormal cells that are found in the lining of a duct.
  • Inflammatory breast cancer. A type of cancer in which the breast looks red and swollen and feels warm.
  • Paget disease of the nipple. A tumor that has grown from ducts beneath the nipple onto the surface of the nipple.
Treatment for male breast cancer is much like treatment for breast cancer in women. Surgery for breast cancer may or may not be followed by chemotherapy, hormone therapy and/or radiation therapy for male breast cancer.

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.

Thursday, October 24, 2013

What Are Some Risk Factors for Breast Cancer?

Risk factors affect the chance of getting breast cancer, Having a risk factor, or even several, does not mean that someone will get breast cancer. Most women who have one or more breast cancer risk factors never develop the disease, while many women with breast cancer have no apparent risk factors (other than being a woman and growing older).

There are different kinds of risk factors. Some factors, like age or race, can't be changed. Risk factors for breast cancer that cannot change include:
  • Gender. Being a woman is the leading risk factor for developing breast cancer. The chance of a woman developing invasive breast cancer sometime during her life is just under one in eight.
  • Aging. Risk of developing breast cancer increases as women age.
  • Menstrual periods. Women who have had more menstrual cycles because they started menstruating at an early age (before age 12) and/or went through menopause at a later age (after age 55) have a slightly higher risk of breast cancer.
  • Genetics. Between five percent and 10 percent of breast cancer cases are thought to be hereditary.
  • Family history. Breast cancer risk is higher among women whose close blood relatives have the disease.
  • Personal history. Women with cancer in one breast have a three- to four-fold increased risk of developing cancer in the other breast or in another part of the same breast.
  • Race and ethnicity. Caucasian women are slightly more likely than African American women to develop breast cancer, but African American women are more likely to die of breast cancer. Asian, Hispanic, and Native American women have a lower risk of developing and dying from breast cancer.
  • Dense breast tissue. Women with dense breasts have more glandular tissue and less fatty tissue and are at higher risk of breast cancer. Dense tissue and tumors have similar density, so tumors can be harder to detect in women with denser breasts.
  • Benign breast conditions. Women diagnosed with certain benign breast conditions may have an increased risk of breast cancer. Benign conditions include: Non-proliferative (non-spreading) lesions; Proliferative (spreading) lesions without atypia; Proliferative (spreading) lesions with atypia.
  • Lobular carcinoma in situ (LCIS). Women with LCIS have a seven- to 11-fold increased risk of developing cancer in either breast.
  • Previous chest radiation. Women who had radiation therapy to the chest area as treatment for another cancer (such as Hodgkin disease or non-Hodgkin lymphoma), especially before the age of 30, are at significantly increased risk for breast cancer.
  • Diethylstilbestrol (DES) exposure. From the 1940s through the 1960s, some pregnant women were given DES because it was thought to lower their chances of miscarriage. These women have a slightly increased risk of developing breast cancer. Women whose mothers took DES during pregnancy may also have a slightly higher risk of breast cancer.
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.

Wednesday, October 23, 2013

Breast Cancer Survivor Finds the Cure is Within at Penn's Abramson Cancer Center


Carole Gross is a fighter.

Eight years ago, she battled thyroid cancer.

She won.

But this year, a new fight was chosen for her – this time, the battle would be in her breast.

Within two weeks of her diagnosis of breast cancer following a routine mammogram, Carole had a lumpectomy at Doylestown Hospital, a member of the Penn Cancer Network.

“I’m a ‘get it done’ kind of person,” says Carole. “I just wanted it out so we could move to the next step.”

A mother of two, Carole was also working as a physical therapist with home health care division of Doylestown Hospital. Because of her busy schedule, she knew having follow-up treatment that included radiation therapy close to her home in Doylestown was essential.

She chose Penn Radiation Oncology Doylestown. It was there she met William Rate, MD, PhD, radiation oncologist at Penn Medicine.

“Dr. Rate was amazing,” she says. “He asked me about myself – he put me as a person before my cancer diagnosis. He just made me feel I was important – that I was comfortable with the whole process. And, he presented information to me in a very understanding and reassuring way.”

Dr. Rate explained how her radiation treatment would proceed, and ensured her he would be with her every step of the way.

He was.

When a scan showed something on Carole’s hip, Dr. Rate personally consulted with his colleagues and asked Carole if he could make appointments for her so she could focus on her treatments.

“Within a half hour of Dr. Rate’s phone call, all of my imaging studies and reports were sent to another specialist I could see for my hip,” says Carole. “Everything was seamless, but Dr. Rate made me so comfortable with the process.”

Carole’s treatments spanned her children’s summer break, and she was able to bring her kids with her to her treatments. She jokes that her kids felt comfortable, because they knew her mom was being treated so well.

“What could have been a very negative situation turned out to be positive,” says Carole. “As soon as we walked through the door, we were greeted like we were friends, or part of the family. They valued me as a person; they didn’t just see me as a diagnosis.”

Following her radiation treatment, Carole was diagnosed with chronic leukemia. Dr. Rate was still there for her.

“Dr. Rate continues to look at the ‘whole picture’ and the ways in which each treatment or piece of care I receive fit into my overall care plan,” says Carole. “Even though he was primarily treating my breast cancer, I found it reassuring he was a part of my entire course of care.”

Finally Carole adds: “His staff is amazing also and very personable and professional.

“Penn Radiation Oncology allowed me to have treatment at the Abramson Cancer Center within my own community,” says Carole. “It was a wonderful opportunity.”

“I wouldn’t have wanted my cancer treatment anywhere else.”
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.

Tuesday, October 22, 2013

Genetic Markers for Breast Cancer Can Be Passed Down On Father's Side


NBC News quotes the Basser Research Center for BRCA Director Dr. Susan Domchek in this piece on paternal transmission of hereditary breast and ovarian cancer risk. Breast Cancer Awareness month is an excellent time to gather your family history of cancer—on both mom and dad’s side-- and gain genetic counseling to determine if you may benefit from genetic testing and are at increased risk.

Read Sarah Lien’s story and watch the videos from NBC News here.

The Basser Research Center for BRCA at Penn Focuses on BRCA1 and BRCA2

The Basser Research Center for BRCA supports research on the BRCA1 and BRCA2 genes, harmful forms of which are linked to greatly increased risks of developing breast and ovarian cancer. The Center is named in honor of Mindy Gray’s sister, Faith Basser, who died of ovarian cancer at age 44.

The Basser Research Center for BRCA was established with a $25 million gift to the University of Pennsylvania from alumni Mindy and Jon Gray.

Emphasizing outreach, prevention, early detection, treatment and survivorship, the Basser Research Center for BRCA will contribute to all stages of research and clinical care relevant to BRCA-related cancers.

The breast cancer program at Penn's Abramson Cancer Center helps you understand your options. Learn the facts and request a consultation today.

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.

Monday, October 21, 2013

BRCA and the Arts


What does classical music have to do with hereditary breast and ovarian cancer?

This fall at the Jewish Community Center in Manhattan, the fifth season of PREformances with Allison Charney begins, with funds raised benefiting The Basser Research Center for BRCA of Penn Medicine’s Abramson Cancer Center and programs at the Jewish Community Center in Manhattan that promote early detection of cancer and care for those living with breast and ovarian cancer.

Given that one in forty carrier individuals of Ashkenazi Jewish ancestry carries a mutation in the BRCA1 or BRCA2 genes, the series also plays an important role in educating the community about hereditary forms of breast and ovarian cancer.

PREformances affords celebrated classical musicians the opportunity to try out new concert repertoire in front of understanding audiences prior to performing it in major venues.

Read the Examiner article on PREformances and hear Allison Charney sing here.

The Basser Research Center for BRCA at Penn Focuses on BRCA1 and BRCA2

The Basser Research Center for BRCA supports research on the BRCA1 and BRCA2 genes, harmful forms of which are linked to greatly increased risks of developing breast and ovarian cancer. The Center is named in honor of Mindy Gray’s sister, Faith Basser, who died of ovarian cancer at age 44.

The Basser Research Center for BRCA was established with a $25 million gift to the University of Pennsylvania from alumni Mindy and Jon Gray.

Emphasizing outreach, prevention, early detection, treatment and survivorship, the Basser Research Center for BRCA will contribute to all stages of research and clinical care relevant to BRCA-related cancers.

The breast cancer program at Penn's Abramson Cancer Center helps you understand your options. Learn the facts and request a consultation today.

Friday! Penn Women’s Cancer Conference

The Abramson Cancer Center is pleased to present the Penn Women’s Cancer Conference, a day-long conference dedicated to topics on women’s cancer including prevention, diagnosis, treatment, genetics and living well after breast cancer and gynecologic cancer treatment.

This conference was one of the first in the country to address the issues and concerns of breast and gynecologic cancer survivors and their families.

Whether at risk for women’s cancer, newly diagnosed or long term survivor, attendees received up-to-the-minute information including; the latest laboratory research, treatment advances, clinical trials, and survivorship issues.

There are two different tracts for the day including Focus On Gynecologic Cancers Conference and Life After Breast Cancer Conference.

Join Us for Focus On Gynecologic Cancers Conference

Date: Friday, October 25, 3013
Time: 7:30 am to 2:30 pm
Location: Hilton Hotel, 4200 City Avenue, Philadelphia PA

Register for Focus on Gynecologic Cancers Conference here.

Can’t Make the Conference?

Can’t make this year’s conference? Be sure to follow @PennMedicine on Twitter with the hashtag #OvarianACC to follow the day’s topics and discussions, or watch the live stream at pennmedicine.org/Abramson/ovarianlive.

Join us for the 21st Life After Breast Cancer Conference

Date: Friday, October 25, 3013
Time: 7:30 am to 3:30 pm
Location: Hilton Hotel, 4200 City Avenue, Philadelphia PA

Register for the 21st Life After Breast Cancer Conference here.

Can’t Make the Conference?

Can’t make this year’s conference? Be sure to follow @PennMedicine on Twitter with the hashtag #BreastACC to follow the day’s topics and discussions, or watch the live stream at pennmedicine.org/Abramson/womenscancerslive.

Friday, October 18, 2013

The First Mammogram

 
October 18, 2013 is National Mammography Day. In this blog, guest writer Erica Voll recalls her first mammogram. Mammograms are available throughout most Penn Medicine locations. To schedule your mammogram at Penn Medicine, call 1-800-789-PENN (7366).




I got the prescription for my first mammogram in the summer of 2011. It was at my 6-week postpartum checkup, and I was told to wait until six months after I was done breastfeeding and go get a baseline mammogram.

Baseline mammogram? But I wasn't 40!

I kept that prescription slip in my wallet for a good year before I took it out again. Every day, thinking in the back of my head..."I really should schedule my first mammogram."

But I never did.

Last November, I was back at my physician, who asked if I had gotten my baseline mammogram.  

Nope.

She gave me another prescription, but it wasn't until this May... about seven months later... that I made the call to schedule my appointment.

Why was I putting it off? Because breast cancer is scary. And having a test that tells you if there is something wrong with your breasts is scary. I was scared.

I remember as a kid, I had shown some concern about getting cancer. I guess I was upset, because my mom was consoling me and she told me,"But Erica, don't worry. Cancer doesn't run in our family."

But I know differently now. I know that only a small percentage of breast cancer is actually hereditary. I know women, young women with no family history of breast cancer are being diagnosed with breast cancer.

It was time I took to put on my big girl pants and go get my mammogram.

What to Expect at Your First Mammogram

We all have these images of a giant machine squeezing our boobs so they resemble a flat pancake. It seems scary, you lay it all out there to be... well, flattened.

Ladies, it was so easy.

There was virtually no prep. I made sure not to put any lotions, powder or deodorant on that day, so I would be clean for the test.

I am not sure what it was like in the "olden days of film," but my mammography suite was all digital. Typically that means faster photos, faster reads and more accurate reads.

I came in, stood up to the machine and did what the technician told me to do. In total, there were about six positions (three on each side) and the mammography session literally lasted about seven minutes (if that).

Then it was done. It didn't hurt at all. No squeezing or pulling. I felt fine.

In fact, I was so worked up over it and it was over so fast, I asked if there was anything else we could do while I was there, because I was not getting all worked up over... that!!!??!!

I mean, I had more pain breastfeeding than I did with that mammogram.

Results of my First Mammogram

Have you ever had a test or medical procedure, and all the while you find yourself looking at the technician for clues like, "Is it normal?" knowing full well that another person needs to read it and you most likely will not get results in a few days?

Yeah, that.

The time between getting a health screening or test and getting the results is like, the longest time ever. If ever there were things you didn't want to end, like long showers and important events like birthday parties and weddings, I would highly suggest doing all of these in the time between the test and getting results. You know, so it feels like it lasts forever.

But after only a few days, I did get my results - normal.

It felt good, and I felt lucky knowing that at the time I was opening my "your boobs look fine" letter from the mail, there were many other women who were not getting a good test result. In fact, it's estimated that every 3 minutes, a woman is diagnosed with breast cancer.

So now I have my baseline. I don't have to go back until I'm 40.

If you haven't had your first mammogram, what are you waiting for?

Get your mammogram at Penn Medicine.


Learn more today.


Wednesday, October 16, 2013

Breast Cancer News from ASCO 2013

Christine Wilson, cancer survivor, shares her experiences from the The American Society of Clinical Oncologists (ASCO) national conference in 2013. Every year in the first week of June, over 30,000 cancer specialists and researchers from around the world gather to present their latest findings on the prevention, diagnosis and treatment of science. At a recent continuing medical education meeting, experts from the Abramson Cancer Center summarized some of the most important research from ASCO 2013 for a packed room of over 300 local oncologists. 

In this blog, Chris presents information from Kevin Fox, MD, director of the Rena Rowan Breast Center at Penn Medicine

Extending Tamoxifen Therapy Beyond Five Years

Tamoxifen has proven remarkably effective in preventing recurrences of hormone dependent breast cancer, but it is also associated with some significant side effects. A major study done in Great Britain showed a slight advantage to extending tamoxifen therapy for 10 years, but also a higher incidence of pulmonary embolism and uterine cancer. The study reinforces the need for women with this type of breast cancer to talk to their doctors about their preferences.

Neoadjuvant Therapy for HER2 Positive Patients

Neoadjuvant therapy means treating people before their surgery. It is in Dr. Fox’s words, “a rich area for clinical research.” For patients with aggressive or high risk disease, it offers the prospect of attacking the cancer when it is in its earliest stage, for other women, it can provide a way of making breast conserving surgery possible. It also subjects women to additional treatment. The two major issues with neoadjuvant therapy are:
  1. Which women will benefit from this approach?
  2. How can the success of this treatment be measured. Most trials measure success in terms of disease free survival, progression free survival or overall survival, but these endpoints cannot be applied to neoadjuvant trials. The current outcomes measurement is called pathologic complete response, pCR, or the complete disappearance of all evidence of disease prior to surgery.
The bottom line for now is that, if the decision is made to give neoadjuvant therapy to HER2 positive patients, the regimen should trastuzumab and one additional agent. Questions remain, however, as when to use this therapy and how best to measure its success.

In another study, neoadjuvant therapy did result in changing the decision about the type of surgery from mastectomy to breast conservation in 43% of patients.

Sentinel Lymph Node Dissection

Sentinel lymph node dissection has now been established as standard for most women with breast cancer. Two studies presented at ASCO 2013 addressed issues related to this procedure.
  • The first determined that although microscopic signs of cancer can be found in 25% of sentinel nodes identified as negative when they are more closely examined, this finding has little clinical significance, and in Dr. Fox’s words “is not worth doing.”
  • The AMAROS trial randomized women undergoing SNL biopsy with a positive lymph node into either completion lymph node dissection or radiation therapy. The study found no difference in the axillary recurrence rate-which was very low in both groups--but did determine that women who had the additional surgery had twice the incidence of lymphedema as those who got radiation therapy.

The Natural History of Small HER2 Positive Tumors

HER2 Positive tumors are known to have a poorer prognosis, but the tendency has been not to treat very small tumors aggressively. A new analysis showed that patients with small HER2 Positive tumors do benefit from systemic adjuvant therapy.


The breast cancer program at Penn's Abramson Cancer Center has Expert Surgeons who perform the most complex surgeries and reconstruction with some of the best outcomes in the nation.
Learn the facts and request a consultation today.


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.

Tuesday, October 15, 2013

I Was The One - A Story of Breast Cancer and Survivorship

Liz Barker is a mother, a wife, a writer and a breast cancer survivor. In this blog, she remembers he diagnosis at 34 years old - while pregnant with her son. 

What are the odds of being the One?

We know the basics: Breast cancer will, on average, strike one out of 9 women. What we don’t know is who that unlucky “one” will be. Is there a certain typecast to be that “one?"

Unfortunately, as was the case with my diagnosis, there is often no stereotypical reason to be the “one.” In 1991, I became that “one.”

At the time, I was a healthy 34 year old with no family history of the disease. To make matters worse, I was also 5 ½ months pregnant with a healthy baby. Imagine the shock factor!

Initially, I was advised at another health system to terminate this healthy pregnancy “to save my life” and “to live to be a mother to my toddler son and a wife to my husband.” This doctor did not know my back story though, and why his rash recommendations were a double whammy to me.

One year prior, we had just buried our 3-year-old daughter Lauren, who endured a tragic death from a hospital infection after surgery. Lauren had Down Syndrome. What were the odds of my first baby having Down Syndrome, a genetic defect, when I was only 29, and again, no family history?

With odds like this, I should have been playing the lottery.

Champion By Choice

After the shock of the breast cancer diagnosis wore off, and with the help of my supportive family, I got a second opinion with cancer specialists, rather than act on the advice of that local surgeon. The plan was for me to have the mastectomy and begin a course of chemo one month later, when I began my third trimester of pregnancy. Chemo during the last trimester would not be as detrimental because the fetus’s vital organs would already be formed. I was told that my son “might be slow or might be small.” I didn’t care because after losing Lauren, my heart was broken and I did not want to give up on this healthy baby.

Surgery went fine. I only had two lymph nodes that were malignant. I tolerated chemo well enough both during and after pregnancy while juggling my toddler and then my newborn. In retrospect, I don’t know how I pulled this off, but I wasn’t working, that’s for sure.

My son Bryan was born perfect, at eight pounds even, despite being induced at 38 weeks. But, of course I worried about the long-term effects of the cancer and chemo on him, and of my continued good health. I was determined to survive and to enjoy my family. I ate healthy, I walked and exercised, and I stayed positive. After my traditional medical treatments and reconstruction, I then went through a homeopathic care plan with a doctor of naturopath. The homeopathic remedies were dispensed to cleanse my body of the chemo toxins and to build up my immune system. I also took advantage of my employer’s disability insurance that allowed me a respite to do these things and to heal my mind/body/spirit. I am forever thankful to them for supporting me through this very difficult time.

Today, at age 56, I am a 22-year cancer survivor. Bryan graduated from University of Pennsylvania this past spring and won a full scholarship for graduate school to obtain his PhD in neuroscience!

And, he has been a varsity athlete for years. So much for the “slow and small” prediction about him… There isn’t a day that goes by that I am not thankful for having him.

Two years ago, at would have been Lauren’s 25th birthday, I wanted to do something special to honor her. With the help of so many wonderful people, I hosted a very successful fundraiser to benefit handicapped children and The Arc. The event created such good karma for me that I was inspired to dust off my long time “book quest dream,” writing my personal story to inspire others. The apt title is Changed by Chance…Champion by Choice. I plan to be published soon.

Please visit my blog at www.changedbychance.com to learn more about me and my amazing story. Namaste.




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.

Monday, October 14, 2013

Is "Less" More When It Comes to Breast Cancer Treatment?


Carla S. Fisher, MD, is an assistant professor of surgery at the Perelman School of Medicine and a breast surgeon. Dr. Fisher sees patients at the Rena Rowan Breast Center. In this blog post, Dr. Fisher discusses ductal carcinoma in situ, or DCIS, and why sometimes when it comes to treatment for breast cancer, less is more.


In 2011, I wrote an article for this blog about the evolution of the surgical treatment of breast cancer. I discussed the progression of breast cancer surgery from a deforming procedure to breast preservation with better outcomes. As I considered what to write about in 2013, I was immediately drawn to a story I recently listened to on National Public Radio (NPR).

The story was entitled “When Treating Abnormal Breast Cells, Sometimes Less Is More” and it discussed two women’s very different decisions for the treatment of their ductal carcinoma in situ, or DCIS.

DCIS is a very early form of breast cancer. On a staging scale of 1 to 4, DCIS represents stage 0.

Each year approximately 70,000 women are diagnosed with DCIS and it accounts for approximately 1/3 of all breast cancers that are diagnosed.

Like invasive breast cancer, the surgical options for patients with DCIS include lumpectomy and mastectomy. Treatment for DCIS can also include radiation and a medication called tamoxifen.

In the story that I mentioned, one woman chose to undergo bilateral mastectomy (removal of both breasts) as treatment for her DCIS and the other patient elected to forego surgery altogether and was being treated with tamoxifen only. Treating DCIS with tamoxifen only is currently not the standard of care but has been suggested as a possibility for certain types of this early stage of breast cancer.

I mention this story on NPR because it reminded me of our continuing evolution in the surgical treatment of breast cancer. Treating any form of breast cancer with medication only would have been unheard of even 50 years ago!

How do these changes in surgical (or non-surgical) management occur? These changes do not (and should not) happen quickly. They require large groups of patients followed for many years on clinical trials. While new treatment options are exciting, they require close observation and follow up to make sure they are safe and effective.

At the Abramson Cancer Center, we have over 20 clinical trials for women with breast cancer. Our clinical trials include everything from intraoperative imaging of breast cancer to surgical vaccines to radiation using proton therapy. Patient participation in clinical trials is always voluntary but it is what has allowed us to transition from “radical mastectomy” to “breast conservation” surgery.

When it comes to breast cancer treatment, we have shown that “sometimes less is more." As we look to the future, we know that the advances in the treatment of this cancer will only continue to improve. I look forward to that.

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.
The breast cancer program at Penn's Abramson Cancer center offers hope with the most advanced therapies and clinical trials available in the region.
Learn the facts, request a consultation today.

Friday, October 11, 2013

The Center for Personalized Diagnostics From ASCO 2013

Christine Wilson, cancer survivor, shares her experiences from the The American Society of Clinical Oncologists (ASCO) national conference in 2013. Every year,  cancer specialists and researchers from around the world gather to present their latest findings on the prevention, diagnosis and treatment of science. At a recent continuing medical education meeting, experts from the Abramson Cancer Center summarized some of the most important research from ASCO 2013 for a packed room of over 300 oncologists.

This is a summary of the information presented at ASCO by Chair of the Department of Pathology and Laboratory Medicine, David Roth, MD, PhD, about personalized diagnostics and medicine at the Center for Personalized Diagnostics

One result of the rapid advances in understanding cancer biology has been the discovery of numerous genetic mutations that either cause or are associated with specific cancer types. These mutations are the basis for targeted therapies, cancer treatments that block the abnormal activity of these mutated genes.

The new Penn Medicine Center for Personalized Diagnostics (CPD) provides state of the art genetic screening that is fast, cost effective and focused on improving the ability of doctors and patients to make decisions about when and how to use targeted therapies. CPD testing is now available for acute myelocytic leukemia, melanoma, brain tumors and lung cancer, with plans to expand to colon cancer and a wide spectrum of cancer types in the near future.

The CPD tests for a wide spectrum of gene abnormalities allowing for the identification of both the more common mutations as well as those with a low prevalence, “the one-percenters” as Dr. Roth calls them. Test results are reported as either actionable--meaning that targeted therapies exist, or variances of unknown significance (VUS). While finding these VUS mutations may not help today’s patients, they are important for future diagnostic and treatment. CPD tests only for genes that influence the diagnosis, treatment or prognosis of cancers--not those which predict cancer risk.

For more information, visit the Penn Medicine Center for Personalized Diagnostics.

Thursday, October 10, 2013

2 Free Events and Webinars from Penn Medicine and Oncolink

Join Penn Medicine and Oncolink for two free presentations about healthcare coverage including the Affordability Care Act and Medicare Open Enrollment on Friday, October 25.

Both events take place at Penn Presbyterian Medical Center (PPMC).

What People with Cancer Need to Know About Medicare Open Enrollment

  • Date: Friday, October 25
  • Time: Noon to 1:30 pm
  • Location: Penn Presbyterian Medical Center (PPMC), 51 North 39th Street, Heart and Vascular Pavilion Auditorium, 1st floor
Medicare Open Enrollment is the one time a year that Medicare recipients can make changes to their coverage. This workshop will help you understand the terminology, out of pocket expenses, communicating with your insurance company and much, much more. If you are looking for ways to maximize your coverage and minimize your costs, this workshop is for you.

This workshop will be presented by Christina Bach, oncology social worker at Penn Presbyterian Medical Center and OncoLink.

Light refreshments will be served and parking in the Penn Presbyterian Medical Center garage will be available for $2.00.

Please call 215-662-8785 to register or for more information.

The Impact of the Affordable Care Act for Cancer Patients: It’s a Game Changer

  • Date: Friday, October 25
  • Time: 2 to 3 pm
  • Location: Penn Presbyterian Medical Center, 51 North 39th Street, Heart and Vascular Pavilion Auditorium, 1st floor

How does the Affordable Care Act make care more accessible for those with a chronic illness or pre-existing condition? This workshop will help you understand the basics of the law, the types of plans offered and how they will be managed, how to compare costs and get coverage and debunk some of the common myths.

This workshop will be presented by Christina Bach, oncology social worker at Penn Presbyterian Medical Center and OncoLink.

Light refreshments will be served and parking in the PPMC garage will be available for $2.00.

Please call 215-662-8785 to register or for more information.

View it on the Web

Can’t come in person?

Visit www.oncolink.org/webchat to join the workshop live from the Internet or watch a replay later.

Wednesday, October 9, 2013

Knowing Saves Lives - Watch a Special BRCA 1/2 Information Session Here


Bracketing Previvor Day on October 2, the Basser Research Center for BRCA held two programs to educate the Jewish community about the increased incidence of BRCA1/2 mutations in individuals of Ashkenazi Jewish ancestry.

For those who did not make the New York City or Philadelphia events, Central Synagogue has provided access to the program.

Watch the video below, or on YouTube to hear experts including the Basser Center’s Susan Domchek, MD, discuss breast and ovarian cancer risk and management of individuals who carry mutations in the BRCA1 or BRCA2 gene.


This summer, Penn Medicine's Basser Research Center for BRCA reached out to more than 1,500 Jewish congregations around the United States to promote awareness around BRCA gene mutations which are frequently recognized as risk factors for Breast and Ovarian Cancer.  Penn Medicine hopes to encourage discussion around increased incidences of BRCA mutations among people of Ashkenazi Jewish. Read more about Basser's outreach here.

Tuesday, October 8, 2013

GU Cancer News from ASCO

Christine Wilson, cancer survivor, shares her experiences from the The American Society of Clinical Oncologists (ASCO) national conference in 2013. This summer, 30,000 cancer specialists and researchers from around the world gathered to present their latest findings on the prevention, diagnosis and treatment of science. At a recent continuing medical education meeting, experts from the Abramson Cancer Center summarized some of the most important research from ASCO 2013 for a packed room of over 300 local oncologists.

Most experts would characterize this year’s meeting as one in which the progress reported was important, but largely incremental. Today, the advances that we see in cancer treatment are the result of a rapidly emerging understanding of the biology and genetics of malignant cells, and the ways in which they interact with our immune systems and neighboring tissues. That new knowledge has lead to the development of targeted therapies that are changing the ways in which many cancers are treated. This same research is also revealing the incredible complexity of thousands of diseases we call cancer. A discovery in one critical area more often than not opens new, unexpected doors, and raises new questions.

Genitourinary Tumors

David Vaughn, MD

Dr. Vaughn reported progress for three different cancer types:
  • Prostate cancer
  • Renal cell cancer
  • Testicular cancer

Prostate Cancer

Treating Bone Metastases:

When prostate cancers spread, it is often to the bone. Bone metastases cause pain and weakness and can lead to fractures. A major clinical trial, called TRAPEZE, studied several approaches to treating prostate cancers that have spread to the bone and are not responsive to hormonal therapies, and who are receiving chemotherapy with docetaxel. The trial found that
  • A radioactive substance known as Strontium-89 improves bone related progression free survival--the time until the cancer begins to grow again.
  • Zolendronic acid, which is widely used to treat bone metastases, does decrease the number of bone related events
  • Neither of these approaches improves overall survival--the time to death

Duration of Treatment for High Risk Prostate Cancer

For men whose prostate cancers are at high risk of recurring or spreading, standard treatment is 36 months of androgen deprivation therapy (ADT). This therapy is effective but also causes side effects including weakened bone and possible cardiovascular problems. A Canadian trial demonstrated that 19 months of ADT is as effective as 36--which means that men with high risk prostate cancer can get the full benefit of this treatment with fewer side effects.

Renal Cell Cancer (Kidney Cancer)

What is the Right Sequence for Drugs in Metastatic Renal Cell Cancer?

Today, there are a number of agents available to treat renal cell cancers that have recurred or spread. Some of these drugs target different genetic mutations or pathways that have been identified as drivers for this kind of cancer. The RECORD-3 clinical trial confirmed that sunitinib, an agent that inhibits the VEGF mutation remains the standard of care for first line therapy of metastatic renal cell carcinoma. Everolimus, which targets the mTOR pathway, can be considered for patients with poor risk disease and those who have heart problems that make it impossible for them to sunitinib and other drugs known as TKIs.

Testicular Cancer

What is the Role of Active Surveillance for Stage I Testicular Cancer?

The majority of patients diagnosed with testicular cancer have early, stage I disease. Treatments for this type of cancer are very effective with an almost 100% cure rate. After surgery, there are several options for follow up treatment, including what is known as active surveillance--regular checkups and observation. Two new Danish studies demonstrate that active surveillance is as effective as treatment for men with stage I testicular cancer, whether it is seminoma or non-seminoma.

Monday, October 7, 2013

Shoe Shop to Benefit Breast Cancer Research at Penn

On Thursday, October 10, 2013, from 6 to 9 PM (ET), QVC® is scheduled to air the 20th Annual QVC Presents “FFANY Shoes on Sale,” a charitable shoe sale to benefit breast cancer research and education institutions.

This October, the multimedia retailer will once again join the Fashion Footwear Association of New York (FFANY) to offer nearly 100,000 pairs of shoes from over 80 brands at half the manufacturer’s suggested retail price* with net proceeds benefitting breast cancer research and education institutions, including the Abramson Cancer Center of the University of Pennsylvania.

Since its inception, QVC Presents “FFANY Shoes on Sale” has generated more than $41 million for breast cancer research and education. Of that, over $4 million has gone to breast cancer research at Penn Medicine’s Abramson Cancer Center.

"Over the last 11 years, this event has facilitated multidisciplinary collaboration between basic scientists and clinical researchers,” says Angela DeMichele, MD, MSCE, associate professor of medicine and co-leader of the Breast Cancer Research Program at Penn. “With the incredible support of FFANY and QVC, we are able to make an immeasurable impact in the prevention, detection, treatment and survivorship of breast cancer. These discoveries have helped to provide support to our patients and their families in our community and around the world. We are excited to continue our relationship with FFANY and QVC as we move forward in this fight against breast cancer."

In addition to the scheduled broadcast on October 10, shoppers can contribute to the cause by purchasing the “Shoe of the Day,” offered each weekday from 7 to 9 AM (ET) on QVC during the month of October. They can also shop the online collection offered on QVC.com where additional styles can be found, beginning October 1 and continuing throughout the month, while supplies last.

Breast Cancer Research at Penn Medicine

Penn’s Breast Cancer Research Program brings together investigators from diverse disciplines and focuses their collective energies on understanding, preventing and treating breast cancer.

The breast cancer research program features a broad cross-section of interactive investigators involved in many areas of breast cancer-related research.

Learn about breast cancer research at Penn in the following areas:
Learn more about breast cancer treatment at Penn Medicine.

*Manufacturer’s suggested retail price is based upon supplier’s representation of value. No sales may have been made at this price.

Friday, October 4, 2013

"It Seemed Like Breast Cancer Was Always There" - A Previvor Shares Her Story

Photo courtesy of Katie Bradford Osborne
Pamela Badolato lives in Berwyn with her husband, 4 year old son, 2 year old twins, and newborn baby. Despite having four children aged 4 and under, she loves spontaneous adventures and having new experiences with them. Pamela is the Associate Publisher of Main Line Parent and Philadelphia Family Magazines.
 
I remember sitting in our kitchen, and hearing my mom trying to explain to my sister and I that she found a lump in her breast. At 9 years old, breast was still a word that made me giggle- yet I knew this conversation was no laughing matter. Just 10 months prior my great aunt was diagnosed with breast cancer, too. And I knew that her mother, my great grandmother had died of breast cancer. From then on, it seemed like breast cancer was always there- someone my mother worked with, the sister of a family friend, etc. Maybe we kept finding the breast cancer survivors… or maybe somehow they kept finding us.

Nearly three years ago I made the decision to get tested to see if I carry the same genetic mutation that my mother tested positive for since we have a strong family history of breast cancer, and my mother was just a few years past being diagnosed a second time. I never considered that the test results would be negative, not because I’m a doom and gloom person but because I just felt it. It’s like I could feel the mutation coursing through the branches and leaves of my family tree, right into my DNA. For many years I did not want to be tested, did not want to know that I was for sure a ticking time bomb for cancer. I planned to live healthily, and make choices that could help to keep cancer at bay. But then my OB/GYN talked to me about the test and my risks, and with a 2 year old and 6-month-old twins at home I knew right then I couldn’t risk anything. I had to know. I had to do whatever I could to be their mom for the rest of my hopefully long life.

Photo courtesy of Kara Raudenbush Photography
I met with a genetic counselor to learn more about BRCA genetic mutations with my husband, and we decided that I would begin breast and ovarian cancer surveillance with ultrasound, blood work, mammograms, clinical breast exams, and MRI while meeting breast surgeons and researching reconstruction options. With a BRCA genetic mutation there is also ovarian cancer to consider, however I was too young for consideration to remove my ovaries and fallopian tubes based on my family history and age. I made the decision to go ahead and have a prophylactic double mastectomy in May 2012. That spring I wasn’t feeling well, with several symptoms on the ‘watch list’ for ovarian cancer so I went to see my doctor. The ultrasound revealed that my ovaries were just fine, and in fact I was not ill- I was pregnant!

My surgery has now been postponed, and my new daughter is 9 months old. I’m enjoying being able to breastfeed her, as that is something I would have been heartbroken not to be able to do if I had gotten pregnant again post-surgery. As a nursing mother my surveillance options are limited, which is a risk because I cannot have mammograms or MRI. I'll revisit my surgery decision in the spring of 2014, new research comes out all of the time and my team of doctors and I can re-evaluate my options. I share my story because people think breast cancer happens to women over 50, or that the genetics of breast cancer got blown out of proportion when a celebrity announced her decision recently. I am a real person, a young person, who has a mother who was diagnosed with breast cancer twice before the age of 50, whose great-grandmother died at 47 from breast cancer .

We cannot change our DNA or history, but I can help change my future and do what I can to be around for my four children, my husband and my family.
 
The breast cancer program at Penn's Abramson Cancer Center offers Genetic Testing and Counseling for patients and families at increased risk for cancer and related genetic mutations.
Learn the facts and request a consultation today.

Thursday, October 3, 2013

Jewish Hereditary Breast and Ovarian Cancer Event 10/6 in Philadelphia

As one in a series of Jewish community educational events, Penn Medicine’s Basser Research Center for BRCA is collaborating with Living Beyond Breast Cancer and Congregation Rodeph Shalom in Philadelphia to sponsor the Breast & Ovarian Cancer Symposium on Sunday, October 6, 2013 from 10:30 am to 12:30 pm.

Inherited Breast and Ovarian Cancer: Why Jewish Families Are at Heightened Risk

Susan M. Domchek, MD
Susan Domchek, MD
The symposium will focus on the Ashkenazi Jewish population's increased chances of carrying a mutation in the BRCA1 and BRCA2 genes. Mutations in these genes place people at a greatly increased risk for both breast and ovarian cancer.

To explore this topic, CBS3/CW Philly 57’s Stephanie Stahl be moderating a panel of breast and ovarian cancer experts. Presenting on the panel will be Susan Domchek, MD, executive director of the Basser Research Center for BRCA.

“With proper genetic counseling, testing, education, and screening, women and men with BRCA mutations have the power to dramatically reduce their risk of developing these cancers and to catch them early when they are most curable,” says Domchek, also an oncologist at Penn Medicine’s Abramson Cancer Center. 

“We wanted to partner with synagogues to build on the strong trust that rabbis have already formed with their congregations. These religious leaders are in a position to empower their congregations to learn about their risk and take decisive steps to prevent and detect cancer in their families.”

The Sunday October 6 event is free and open to the public, and no tickets are necessary.

To RSVP and learn more about the Hereditary Breast and Ovarian Cancer Risk – What You Need to Know, the panelists attending and other details, visit the official event page.

Read More About BRCA in the Jewish Community

We encourage you to read more about these events at the Focus on Cancer Blog, from the official Penn Medicine press release as well as an inspirational blog post from the Union for Reform Judaism.

This program has been made possible by a generous grant from Women of Vision of the Jewish Women’s Foundation of Greater Philadelphia

Wednesday, October 2, 2013

Previvor Day Celebrates Knowledge, Power and Life

This week is Hereditary Breast and Ovarian Cancer Week and today is Previvor Day. All week, we are featuring information about hereditary breast and ovarian cancer as well as information about Penn's Basser Research Center for BRCA 1 and BRCA 2.

“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.

Sandy with her children.
“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.”

Sandy tested positive for BRCA1, the genetic mutation that increases a woman’s lifetime risk for breast cancer up to 80%, and also carries with in an elevated risk for ovarian cancer of up to 45%.

“I was shocked,” says Sandy. “I sort of expected it because breast cancer affected my family, but I was still hopeful I wouldn’t have the gene mutation.”

Sandy is a Previvor.

What is a Previvor?

A previvor is a survivor of a predisposition to cancer. Previvors have unique needs from people with cancer such as active surveillance and screening tests and often need to make treatment decisions based on their risk for inherited cancer.

In 2010, Congress declared the first-ever National Hereditary Breast and Ovarian Cancer (HBOC) Week and National Previvor Day.

The goal of HBOC Week and Previvor Day is to raise awareness about hereditary cancer. HBOC Week marks the transition between National Ovarian Cancer Awareness Month and National Breast Cancer Awareness Month and recognizes anyone affected by hereditary breast or ovarian cancer, including women and men with BRCA mutations, people with a family history of cancer, breast and ovarian cancer survivors, and previvors, individuals who carry a strong predisposition to cancer but have not developed the disease.

Sandy is the Philadelphia group founder of the national organizaion, FORCE, which stands for “Facing Our Risk of Cancer Empowered.” She founded the group after she tested positive for BRCA1and wanted to create a resource in the Philadelphia area for other women who were BRCA positive and needs education and support.

Knowing Risk = Empowerment

“When I first found out about my BRCA status, I felt like a walking time bomb,” says Sandy. “Yet, knowing my own risk for breast and ovarian cancer became very empowering for me. I became educated about my options for early treatment and surveillance, and I could take actions to lower my risk.”

Sandy underwent a double mastectomy, completely removing and reconstructing her breasts, which lowered her risk of breast cancer by approximately 90%. She also underwent an oophorectomy, removal of her ovaries, which further reduced her risk of breast cancer and lowered her risk of ovarian cancer by approximately 70%.

“These decisions were not easy for me, and they are not easy for any woman,” says Sandy. “But today, being a Previvor is a lucky status for me. I feel lucky that I could make informed decisions that could lower my risk for breast and ovarian cancer.”

The Basser Research Center for BRCA at Penn Focuses on BRCA1 and BRCA2

The Basser Research Center for BRCA supports research on the BRCA1 and BRCA2 genes, harmful forms of which are linked to greatly increased risks of developing breast and ovarian cancer. The Center is named in honor of Mindy Gray’s sister, Faith Basser, who died of ovarian cancer at age 44.

The Basser Research Center for BRCA was established with a $25 million gift to the University of Pennsylvania from alumni Mindy and Jon Gray.

Emphasizing outreach, prevention, early detection, treatment and survivorship, the Basser Research Center for BRCA will contribute to all stages of research and clinical care relevant to BRCA-related cancers.

The breast cancer program at Penn's Abramson Cancer Center helps you understand your options. Learn the facts and request a consultation today.

Tuesday, October 1, 2013

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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