By Mike Johnston 

My journey into the realm of male breast cancer began with a routine yearly physical exam in May 2009. I had noticed, and felt a twinge of pain in, a lump on my left breast, which I requested my physician take a look at. We conferred and he explained it may be a cyst, but insisted we examine it further, and I am so thankful he did.

The post-chemo party thrown by my sisters

From that moment on, my life started to blur. A mammogram quickly led to an ultrasound, which ended with a biopsy. The follow-up call to my physician confirmed the lump was breast cancer. As I left work early in a daze and waited for my wife, Paula, to get home, I had no idea how to tell her this terrible news. Telling my loved ones about my diagnosis and seeing the pain it caused them was brutal for me, and the worst part of my diagnosis.

After the initial shock wore off, I became determined and focused all of my thoughts on figuring out how to fix this problem. Through my son, Sean, who works in the Longwood area of Boston, I was put in touch with a new patient coordinator at Dana-Farber, and things finally started to slow down and come into focus for me. I called Dana-Farber on Friday and met my medical oncologist, Beth Overmoyer, MD, and surgical oncologist, Faina Nakhlis, MD, the following Monday, who diagnosed me with invasive ductal carcinoma. We created, and immediately began, an intensive treatment plan, which included a mastectomy to remove nine nodes, chemotherapy, radiation, and 10 years of tamoxifen medication.

My wife’s breast cancer awareness tatoo

The world of breast cancer is covered in pink, which many men may shy from, but my family and I embraced it. My sisters threw me a pink-filled party to celebrate the end of my chemotherapy treatment, and my wife even got a breast cancer awareness ribbon tattoo.

Five years later, I am cancer free, and more dedicated than ever to bringing awareness to male breast cancer. It is imperative that men understand that more than 2,000 men in the U.S. will be diagnosed with breast cancer each year. While it’s rare, it does happen and, unfortunately, many men overlook the symptoms until the cancer is advanced. I was fortunate enough to catch mine when I did, before it had spread too far and advanced too much.

Since my experience, I have spoken to many women and men alike who have experienced the life-altering news of a cancer diagnosis, and I am more than happy to aid them through the process like my new patient coordinator guided me.

Like many college students, Kelly Fabrizio has a packed calendar. A sophomore at the Massachusetts College of Pharmacy, Fabrizio is taking classes to become a research pharmacist. In addition to her studies, she works at a pharmaceutical company and is also applying for pharmacy technician jobs in Boston.  

Former New England Patriots player Joe Andruzzi visits with Kelly Fabrizio (center) and her mom while Kelly donates at the Kraft Family Blood Donor Center.

Although Fabrizio has a lot on her plate, volunteering is a big part of her life in Boston. When she moved from Connecticut to attend college, she made it a priority to give back to her new community.  This has included volunteering at a homeless shelter and soup kitchen, and organizing a fundraiser for suicide prevention awareness in honor of her friend. She also participates in the American Cancer Society’s Relay for Life every year, and works at a food pantry in her hometown. Many of her friends also join her to volunteer their own time.

“It feels great to know you’re making a difference in the community,” she says.

Fabrizio’s volunteering is also about giving back to a community that cared for her mother. While she was still in high school, Fabrizio made 2-hour weekend trips from Burlington, Connecticut to Boston to visit her mother, Deb, who was receiving treatment for pancreatic cancer in 2012 at the Center for Gastrointestinal Oncology at Dana-Farber/Brigham and Women’s Cancer Center (DF/BWCC).

During her mother’s treatment, Fabrizio saw first-hand how much Dana-Farber patients relied on blood donations from the Kraft Family Blood Donor Center. That’s when Fabrizio began making regular trips to the Kraft Center to give platelets, the blood component that allows wounds to clot and heal. More than a year later, she continues to donate platelets every two weeks. She even brings one of her friends with her, and they do it together.

“This process has made me grateful that I am healthy, but it also feels good knowing that you’re helping people,” she explains.

In addition, Fabrizio has volunteered her time to the Kraft Family Donor Center making donors feel comfortable with snacks and blankets.

Fabrizio encourages people, especially fellow college students, to donate platelets or whole blood and volunteer as much as they can.

“Donating is the easiest way you can help out. It doesn’t take a lot of time, and it could save someone’s life,” she says. “Volunteering also looks great on a résumé.”

Dana-Farber wants to know how college students, like Kelly, give back to their school or community. If you’re a college student, tweet @DanaFarber using #CareOnCampus and share ways in which you give back. You will be entered to win one of two $25 gift cards.

 Click here for more information on the #CareOnCampus campaign.

To schedule an appointment to donate blood or platelets, email BloodDonor@partners.org, or call 617-632-3206. For more information, visit the Kraft Family Blood Donor Center website. 

Lise Pass has been living with metastatic breast cancer for nearly a decade, but she prefers focusing not on her disease, but rather on her children – all 48 of them.

Lise (left) and Sami Pass with the family’s latest foster son.

In addition to a biological son and daughter who are now adults, Pass and her husband Harry have been foster parents to 46 boys and girls.

The way Pass sees it, being a foster mom has played as big a part in her getting through cancer treatment at the Susan F. Smith Center for Women’s Cancers at Dana-Farber.

“You have to empower yourself against cancer, to think of it as an uninvited guest,” says Pass. “You may need to live with it, but you can’t let it encompass you. I am a 55-year-old wife and mother who cares for children who need me. I am so much more than the cancer.”

Pass was aware of her family’s breast cancer history – two aunts and a grandmother all had the disease – well before she felt a lump one day in 2004. She quickly had an MRI, which revealed Stage III breast cancer.

Pass and her husband had already entered the world of foster parenting four years before her diagnosis. Taking in children on a phone call’s notice from the Massachusetts Department of Children and Family Services (DCF), they provided a loving home for weeks, months, or longer to kids whose birth parents could not care for them.

The Pass family celebrates TJ’s Bat Matzvah in 2011: (L-R) Doug, Sami, Harry, Lise, TJ, and Alie

“We were comfortable; Harry was working as a real estate attorney, and I was home raising our children Doug and Sami,” Pass recalls. “We were in a position to help others, and I wanted it to be something I could really lay my hands on. This was it.”

Although the Passes temporarily stopped fostering while Lise was being treated at Dana-Farber/Brigham and Women’s Cancer Center, they were back to housing children of all ages when she began having sharp pains in her hip two years later. The cancer had spread to her bones, and she was rediagnosed with Stage IV (or advanced) metastatic breast cancer. While treatable, metastatic disease is not curable.

By this point, teenagers Doug and Sami Pass had a little sister in TJ, a foster child the family had legally adopted, as well as an older one in Alie, who the Passes took in like one of their own when her family life grew too difficult. Friends hearing of Lise’s new situation urged her to refrain from future fostering; she refused.

Because of advances in metastatic cancer treatment at Dana-Farber, Pass was able to continue leading an active life. Under the care of a clinical team led by Hal Burstein, MD, PhD, she started a treatment regimen that included radiation, more surgery, and monthly chemotherapy infusions for five years. She still takes a nightly oral chemo pill.

“Our treatments for advanced breast cancer keep getting better and better, allowing women to lead rich, fulfilling lives even while getting treatment,” says Burstein. “Lise and her family are showing all of us how to lead amazing lives and inspire us to think of better ways to care for women with breast cancer.”

The Pass children share candle lighting duties on TJ’s big day.

Today, with one-year-old foster son “Baby J” to chase around, Pass says she’s feeling great. She also knows that the next generation of foster kids have another champion in Sami, who graduated from Connecticut College in May and has begun training as a social worker with the DCFS.

“People ask me all the time, ‘If your mom is sick, why is she going through all this again?’” says Sami Pass. “I don’t think she would be doing as well if she didn’t have the kids. They keep her going.”

Learn more about being a foster parent at http://www.mass.gov/portal/articles/adoption-foster-care-in-massachusetts.html, or by calling 1-800-KIDS-508.

Twenty years ago, scientists announced the discovery of BRCA1, which arguably has become the best-known cancer susceptibility gene in the world. When inherited in a mutated form, the gene sharply increases a woman’s chances of developing breast or ovarian cancer, often at an early age. The discovery has changed the way women with a family history of breast and ovarian cancer approach these diseases, helping them better understand their risk and the options for reducing it. It also presents them with complex choices about sharing genetic test results with family members who may also carry the mutated gene.

The hunt for BRCA1 began in earnest in 1990, after Mary-Claire King of the University of California at Berkeley discovered a genetic link to breast and ovarian cancer on chromosome 17. That set in motion a worldwide competition to scour chromosome 17 for the actual gene – dubbed BRCA1 for BReast CAncer 1. In August 1994, Mark Skolnick, PhD, of Myriad Genetics in Salt Lake City, announced his group had found BRCA1 and mapped its DNA sequence.

Huma Q. Rana, MD, clinical director for Dana-Farber’s Center for Cancer Genetics and Prevention.

While these discoveries led to the identification of BRCA1 – and, a year later, to a second breast cancer susceptibility gene, BRCA2 – their roots lay in research begun decades earlier by Dana-Farber’s Frederick P. Li, MD. With his colleague Joseph Fraumeni, MD, Li found that abnormalities in certain inherited genes explained why some families have a pattern of cancer across the generations.

Although only about 5-10 percent of women with breast cancer carry inherited mutations in BRCA1 or 2, those who do have these harmful mutations face a substantially elevated chance of developing a second breast cancer or ovarian cancer. About 12 percent of women in the general population will develop breast cancer at some point during their lives, research shows. By contrast, 55-65 percent of women who inherit a harmful BRCA1 mutation and about 45 percent who inherit a harmful BRCA2 mutation will develop breast cancer by age 70.

The picture is similar for ovarian cancer. About 1-2 percent of women in the general population develop ovarian cancer. Compatively, 39 percent of women who inherit a BRCA1 mutation and 10-20 percent who inherit a BRCA2 mutation will develop ovarian cancer by age 70.

The discovery of BRCA1 and BRCA2 has removed some of the unknowns about breast and ovarian cancer risk and clarified the choices available to women and men who test positive for harmful mutations in these genes. Those choices include more frequent breast exams; enhanced and early breast imaging/screening; surgery to remove the breasts as well as the ovaries; and medications such as tamoxifen, which, according to several studies, can lower the risk of breast cancer in BRCA1 and 2 mutation carriers.

In the years since the discovery of BRCA1 and 2, research has identified the role these genes normally play in cells, and how mutations disrupt that role, potentially leading to cancer. Researchers led by Dana-Farber’s David Livingston, MD, for example, have shown BRCA1 and 2 to be “tumor-suppressor” genes that help repair damaged DNA within cells. When a mutation interferes with such repairs, the accumulation of DNA damage can send cells on a course to cancer.

Research into the basic workings of BRCA1 and 2 has led to some promising approaches to treating breast and ovarian cancers. Recent studies by investigators at the Susan F. Smith Center for Women’s Cancers at Dana-Farber have shown that chemotherapy agents with platinum, combined with drugs known as PARP inhibitors, are effective at treating BRCA1 and 2-related breast cancer.

Testing positive for BRCA1 or 2 mutations can raise concerns not only about one’s own health but also that of relatives who may also have inherited the mutations. Many cancer centers provide genetic counseling services to help people work through questions about how – or whether – to talk with loved ones about testing.

Although not a common type of cancer in the United States, stomach (gastric) cancer is the second leading cancer death worldwide, and affects more men than women.

Peter C. Enzinger, MD, medical director for the Center for Esophageal and Gastric Cancer at Dana-Farber/Brigham and Women’s Cancer Center.

“The United States’ risk is much less because of hygiene and the safety of foods we eat, and more to do with overall health and genetic predisposition,” explains Peter C. Enzinger, MD, medical director for the Center for Esophageal and Gastric Cancer at Dana-Farber/Brigham and Women’s Cancer Center (DF/BWCC).

As November marks Stomach Cancer Awareness Month, here are some facts about stomach cancer:

1.) What are the risk factors of Stomach Cancer?

Although doctors and researchers don’t know the exact cause of stomach cancer, there are some factors that increase risk. They include:

• Helicobacter pylori (H. pylori) infection.
• Chronic stomach inflammation
• Pernicious anemia
• Eating a diet high in salted, or smoked foods, and low in fruits and vegetables
• Smoking
• Having a mother, father, sister or brother who has had stomach cancer.

2.)  What are the Symptoms of stomach cancer?

Symptoms of stomach cancer are often symptoms of other health problems that may not be as serious. Since there are no physical signs during the early stages, it is often diagnosed at a more advanced stage.

People who have stomach cancer might experience lack of appetite, difficulty swallowing, fatigue from anemia, discomfort or pain in the stomach area or feeling full early.

3.) How is stomach cancer diagnosed?

Doctors will first conduct a physical exam and discuss family history. He/she may also take a blood sample, known as a complete blood count (CBC) to check blood cell and platelet counts. An endoscopy, biopsy, barium swallow, CAT (CT) scan, and fecal blood test may also be conducted as part of a diagnosis.

4.) How is stomach cancer treated?

Treatment is based on the diagnosis and the stage of the cancer. Surgery is used for patients with most stages of stomach cancer. Doctors may also choose to use chemotherapy and radiation therapy.

Some patients also have the opportunity to take part in clinical trials and targeted therapies may be used for some types of stomach cancer with known genetic mutations. A list of Dana-Farber clinical trials is available here and a national list can be found at http://www.clinicaltrials.gov.

5.) Can stomach cancer be inherited?

When a close relative has been diagnosed with a type of hereditary colon cancer, known as Lynch Syndrome, or multiple close family members have been diagnosed with stomach cancer, a risk of hereditary stomach cancer exists.

Receiving cancer screenings and participating in clinical research are two ways to take control of the risk of stomach cancer. Genetic testing is also an option, where a blood sample is analyzed for alterations in genes. Alterations in certain genes increase the risk of cancer.

For more information on stomach cancer, visit the website for the Center for Esophageal and Gastric Cancer at DF/BWCC

The flu vaccine is the best way to protect yourself and those around you. But will cancer patients benefit from the flu shot given their immunity and treatment status?

It is safe for patients who have not had a stem cell transplant to get the flu shot, and are highly encouraged to ask their providers about their vaccination options. However, those who have had, or who are currently undergoing a stem cell transplant, should take extra precautions. During a transplant, a patient’s immune system is extremely weak. Therefore, each patient has a specific timeframe for when it is best to get a flu shot, depending on where they are in the transplant process.

Unlike many providers, such as local pharmacies, Dana-Farber uses an inactivated virus, which is safer for patients.  Patients are encouraged receive their flu shot at the Institute. If you are currently a patient and have been vaccinated in the past by Dana-Farber, you can easily make plans to be revaccinated.

Candace Hsieh, RN, says all patients should ask their health care team about their options, regardless of their status. “Every patient, and their treatment plan, is different, but any immunity is better than no immunity,” she says.

Proper hand-washing is a simple, but essential, way to prevent contracting and spreading the flu virus. You can also use alcohol-based hand sanitizer to kill germs. Antibacterial hand sanitizing stations are conveniently placed all around the Institute. It is also a good idea to stay home if you are ill, and always sneeze or cough into your elbow or a tissue. Throw it away afterwards, and avoid touching your nose, eyes and mouth, as germs spread easily that way.

In April 2014, John Barrett, a 71-year-old Dana-Farber patient achieved a long-standing goal. He officially became a certified personal trainer. The lifelong exercise enthusiast set out to help cancer patients with their own fitness goals, and after his certification, began an internship with Nancy Campbell, MS, an exercise physiologist in Dana-Farber’s Adult Survivorship Program. He now shadows Campbell on Monday afternoons during patient consultations

John Barrett (right) with Dana-Farber exercise physiologist Nancy Campbell, MS

“It’s really great for patients to hear from John and get his first-hand experience,” she explains. “He helps them stay motivated and consistent.”

Barrett always made exercise a mandatory part of his life. Time for running and strength training was always carved into his schedule. He completed the Boston Marathon four times, and trekked his way up to Mt. Everest Base Camp. Not even a shocking diagnosis of an uncommon form of pancreatic cancer, at the age of 69, was enough to stand in his way.

“My cancer diagnosis pushed me further, and made my motivation stronger,” he says.

Ten months after an operation in December 2012, which took away a third of his pancreas, stomach and gallbladder, a round of chemotherapy, and radiation, Barrett was back at it, biking in Beijing and hiking the Great Wall.

Every patient and diagnosis is different, but Barrett knows that the road to fitness starts with little changes, such as taking the stairs instead of the elevator or parking your car in the back of the parking lot so you have to walk more. “The most important thing is that you get back up, and keep moving forward,” he says.

Barrett has discovered that helping other patients and survivors live a more active and healthy lifestyle helps him as much as them. “I have found that I get more than I give.  I am optimistic about the human spirit and people’s resilience.”

By Ethan Hawes

Ethan on treatment day

“Having cancer in college doesn’t seem real.” That was my first thought when I received what would become life-changing news at the age of 22 as a senior at the University of Maine (Orono). My body went numb and tears started to form when my doctor told me I had multiple myeloma, a rare form of blood cancer predominately found in people over the age of 65. [Less than one percent of multiple myeloma cases are diagnosed in people younger than 35.] On that infamous July day in 2013, I went from a normal college student to an asterisk whose life was suddenly tipped upside down.

A few months prior to my diagnosis, while studying abroad in Spain, I felt a sharp, aching pain in my right hip region while training for and running the Madrid marathon. Each mile dragged on as I limped my way across the finish line. The pain was excruciating, but the blissful joy of accomplishing my goal masked any ailments. This was the last running I would do for quite some time, even though the most grueling of marathons was just around the corner.

A few months after returning home, I finally went in for an X-ray of my hip. When the doctor told me the neck of my femur was eroding and there was a fist-sized tumor in its place, I couldn’t believe it. I listened from a distance as the doctor said the tumor was potentially cancerous, as though I was looking in on someone else’s life rather than living my own. Quickly, I was brought back down to earth and my fight or flight reflexes went into overdrive.

Where earlier I had been focused on achieving my marathon goal, my diagnosis became my new focus in life. I quickly began an array of treatments at the Jerome Lipper Multiple Myeloma Center at Dana-Farber/Brigham and Women’s Cancer Center for my multiple myeloma, a disease that was completely foreign to me. I started with an intensive 10-day course of radiation followed by hip surgery, during which they placed a dynamic hip-screw going up my femur into my hip region. Then, on October 1, 2013, I began a three month course of chemotherapy known as RVD: Revlimid, Velcade, and Decadron. After another three months of maintenance therapy, all while I continued to attend class at the University of Maine, I was ready to embark on the most difficult journey yet: a stem cell transplant.

Ethan on marathon day

My stem cell transplant in June 2014 wiped away all of my white blood cells, essentially giving me the immune system a newborn baby. I was quarantined for two weeks as I anxiously awaited the return of some immune function. A week after I was cleared to go home, I became seriously ill with a fever and what turned out to be pneumonia. The doctors were very candid with me when they told me the seriousness of the matter; this was probably the scariest moment of my entire cancer experience.  I was at my lowest of lows both physically and emotionally.

Fortunately, while cancer has left me vulnerable and exposed, I made it across the finish line of this marathon, too, and I am now three months into remission. If there’s one thing that I learned from running a marathon with the unfriendly, hidden company of a malignant tumor, it’s that I, and anyone else who is unlucky enough to be diagnosed with cancer, can do anything. Cancer can be beaten in both the body and the mind. I’m looking forward to ending my experience with cancer on a high note, finishing my last semester of college in spring 2015 and completing another marathon – cancer-free this time – in the near future.

Lung cancer, which causes more deaths worldwide than any other malignancy, is revealing its vulnerabilities under a sustained assault from science.

Many of the most recent advances against the disease have a long pedigree at Dana-Farber. It was 10 years ago, in fact, that Dana-Farber scientists and elsewhere showed non-small cell lung cancers that carry a mutation in the gene EGFR are susceptible to a targeted drug. That discovery, which ushered in the era of personalized medicine for lung cancer, has lengthened the lives of tens of thousands of patients around the world. Today it is a standard procedure in many hospitals to test lung cancer patients’ tumor tissue for mutated EGFR and, if it’s present, to prescribe the targeted drug erlotinib or a similar agent.

Earlier this year, in fact, the American Society of Clinical Oncology recommended many lung cancer patients be tested for mutations in the EGFR and ALK genes.

Revolutionary as erlotinib has been in the treatment of non-small cell lung cancer – which accounts for about 85 percent of all lung cancer cases – it generally produces remissions for a few years before tumors become resistant and resume their growth. In 2005, Dana-Farber and other scientists reported that erlotinib-resistant tumors often carry a separate mutation in EGFR, known as the “gatekeeper” mutation. Spurred by this discovery, chemical biologists at Dana-Farber created a compound that targets that specific mutation. Tests showed the agent ­– called AZD9291 – can melt such tumors away in mice.  Earler this year Dana-Farber researchers reported on a phase 1 clinical trial in which more than half of patients with drug-resistant NSCLC had their tumors go into remission after taking a drug based on AZD9291.

In one recently opened clinical trial, investigators are examining whether two targeted drugs that have improved outcomes in advanced lung cancer can increase survival of patients with early-stage lung cancer that has been surgically removed.

Another area where Dana-Farber research is propelling new advances against lung cancer is immunotherapy – a form of treatment that uses the body’s own immune system to fight cancer. More than a dozen years ago, Dana-Farber scientists reported that a molecule called PD-L1 on cancer cells inhibits the immune system from attacking the cancer. Clinical trials have shown that blocking PD-L1 with antibodies can stop or slow the growth of non-small cell lung cancers in some patients.

Surgical procedures for lung cancer are improving as well.  One study is exploring the effectiveness of video-assisted thoracoscopic surgery, in which surgical removal of cancerous tissue is performed through smaller openings in the chest. Other studies are examining stereotactic radiation therapy, which focuses radiation more tightly on the cancer and may produce less harm to healthy, surrounding tissue.

Because lung cancer treatment is more successful when the disease is caught early, researchers are studying a variety of imaging and screening techniques. One such technique, called low-dose helical CT scanning, which uses X-rays to obtain multi-image pictures of the entire chest cavity, has shown considerable promise.

Much research aims to stop lung cancer at its source – which, in too many cases, is cigarette smoking. A variety of stop-smoking programs – some based in the workplace, some in community centers – are being tested across the country.

Metastatic breast cancer (MBC), also known as stage IV breast cancer or advanced stage breast cancer, ultimately affects approximately 20-25 percent of all people with breast cancer. There is no cure for MBC, but new developments in treatment and research are helping patients live longer and experience a better quality of life.

Eric Winer, MD

“There are women who live with MBC for many years, often five, ten years or more,” says Eric Winer, MD, director of the Breast Oncology Program in the Susan F. Smith Center for Women’s Cancers at Dana-Farber. “Although some women with metastatic breast cancer still face a shorter life span and may suffer numerous comlplications, we are trying to manage metastatic breast cancer as more of a chronic illness.”

Winer recently sat down for a live video webchat to discuss the latest in MBC treatment and research. The chat, which included questions submitted by patients and viewers, covered topics including clinical trials, potential risk factors, and managing symptoms of treatment.

Although research has improved life for many patients with MBC, Winer says that there are still many unanswered questions. It is important, he says, to continue to push for basic and clinical research around breast cancer and MBC. 

View a video of the October 23 webchat below. For more information on breast cancer and MBC, visit the website for the Susan F. Smith Center’s Breast Oncology Program.

Learn more about metastatic breast cancer research and treatment on Slideshare:

• Advances and Relevant Clinical Trials in HER2+ Metastatic Breast Cancer
• The Latest Research and Clinical Trials for ER+ and Triple-Negative Breast Cancer
• Breast Cancer Genomics and Precision Cancer Medicine
• Integrative Oncology and Breast Cancer

Is it fair that one person with Hodgkin lymphoma will be cured and another will die, simply because of what part of the world they live in? No, says Lawrence Shulman, MD, Dana-Farber’s director of the Center for Global Medicine and senior oncology advisor to Partners In Health (PIH). Shulman, who recently published his perspective in Nature Reviews Cancer, works with Dana-Farber and its partners Brigham and Women’s Hospital and Boston Children’s Hospital to bring cancer care to PIH sites in developing countries. He shares his experience in providing cancer care in Rwanda.

Lawrence Shulman, MD, (left) with Paul Farmer, MD, PhD, and others at the entrance to Butaro Hospital in Rwanda.

Q: What is the difference between providing cancer care in the U.S. and in a setting such as Rwanda?

A: One of the most striking differences has to do with the care team. The clinical team at the Butaro Cancer Center of Excellence is mostly made up of non-specialists. These internists, pediatricians, and nurses have undergone training in cancer medicine, and they provide care with structured support from specialists at DFCI. Also, no aspect of cancer medicine is taken for granted. This country suffered through a genocide 20 years ago and only began providing cancer care in 2012. The cancer ward at Butaro is the only affordable public cancer facility in the country, and is bursting at the seams with patients seeking care. Dana-Farber’s partnership with the Ministry of Health in Rwanda has enabled us to make a difference in the lives of these patients, and we are committed to doing whatever it takes.

Q. Is cancer more prevalent in developed countries such as the U.S.?

A. Cancer gets more attention in places like Boston, but actually the majority of cancer cases and most related suffering and death occur in low and middle income countries, least-armed to deal with this global crisis.

Q. What are the most common types of cancer seen in Rwanda?

A. One-third of our adult patients at Butaro have breast cancer. We see certain diseases more often in Rwanda than in Boston, such as a Wilms’ tumor. We generally see patients with more advanced stage of disease. Since there was little affordable cancer care in the country until recently, there was no reason for patients to seek care early on.

Q. When it comes to cancer in Rwanda and similar settings, isn’t prevention better than treatment?

A. Preventing disease is always better than having to treat it. But we cannot only focus on prevention because two-thirds of all cancers cannot be prevented. The medicines and procedures that would make a huge impact in Rwanda are often old and affordable. In fact, the very drugs developed in the basement of Children’s Hospital by Sidney Farber in the 1940s and 1950s are still not available to many of the world’s poor.

Q. What is needed to bring cancer care to the developing world?

A. To have a major impact on cancer mortality worldwide, we need the resources, organizational infrastructure, and political will to bring the diagnostics and treatments currently available in the developed world to the large portion of the world’s population who currently have no access and therefore denied the chance to survive their cancer.

Lung cancer remains the most deadly form of cancer in the United States, with nearly 160,000 deaths annually and more than 224,000 new cases expected in 2014. While many lung cancer diagnoses are linked to smoking, nonsmokers can develop the disease as well and should be aware of their risks.

Bruce Johnson, MD, is a medical oncologist with Dana-Farber’s Lowe Center for Thoracic Oncology.

Anyone can get lung cancer.

Although smoking is the leading risk factor for lung cancer, anyone with lungs is susceptible to this disease. Air pollution and exposure to asbestos, radon, chromium, nickel, arsenic, soot, or tar are also causes. Individuals who have been treated with radiation therapy to the chest and those with a family history of lung cancer are also at a higher risk.

Symptoms go beyond trouble breathing.

Symptoms of lung cancer include difficulty breathing, but extend to a cough that does not go away, chest discomfort, wheezing, bloody mucus, and hoarseness. Less obvious signs of lung cancer can include feeling very tired, loss of appetite, and unexplained weight loss.  Speak with your physician if you are experiencing any of these symptoms, even if you have never smoked.

There are several different types of lung cancer.

There are two main types of lung cancer – non-small cell and small cell. Non-small cell lung cancer is the most common type and develops when the epithelial cells that form the inside lining of the lungs grow rapidly and uncontrollably. Small cell lung cancer tumors affect approximately 15 percent of lung cancer patients and begin in the bronchi (breathing tubes) within the chest. These tumors often metastasize to other parts of the body, including the brain, liver, and bone.

Mesothelioma, while not technically lung cancer, shares many of its symptoms. In this disease, cancer cells form in the linings of the organs. The biggest risk factor for mesothelioma is exposure to asbestos.

Targeted treatment exists for lung cancer.

The discoveries of mutated genes in lung cancer tumors, such as EGFR and ALK, and better understanding of tumor biology, has made precision medicine a reality for many lung cancer patients, from those who smoke a pack a day to those who have never touched a cigarette. These targeted therapies, have extended the lives of lung cancer patients around the world.

Reduce exposure to cancer-causing elements.

While nonsmokers inherently reduce their risk of lung cancer by not smoking, they can further lessen their risk by avoiding secondhand smoke and reducing exposure to radon and other carcinogens. Radon, the leading cause of lung cancer in nonsmokers, is invisible and odorless, but can be detected through simple, inexpensive in-home testing. Other carcinogens, such as asbestos and soot, may be present for certain individuals in the workplace. While the government and employers have taken steps to lessen these risks, make an effort to lessen your own exposure when possible. Eating a healthy diet full of fruits and vegetables may also help lessen lung cancer risk.

The holidays are a time for celebrating with family and friends, but the season can bring challenges for cancer patients and those who have recently completed treatment. The stresses of cancer may leave them feeling out of touch or overburdened with traditional holiday responsibilities. If someone you know is in, or has recently completed, treatment for cancer, consider these tips for helping during the holidays.

• Let the patient take the lead. Some people will want to celebrate the holiday season as they always have, but others may want to step back and be less festive. Even if treatment is over, your loved one may not feel up to taking on all of his or her usual holiday responsibilities. Don’t pressure yourself or your loved one to maintain old traditions. Instead, ask them what they’d prefer to do, and follow their lead.

• Celebrate the holidays, but keep it loose. Discuss the holiday schedule in advance to help your loved one find a balance between having time alone and celebrating with friends and family. When you host activities, make it clear it’s okay to say no or cancel with short notice if they don’t feel up to coming.

• Lend a hand. Volunteering to do specific tasks can help any time of year, especially for people who are in active treatment. Ask if you can shovel the sidewalk, decorate the house, or shop for groceries. Let your loved one decide what he or she would like to do, then help with other tasks. (For more tips on how to help, visit Dana-Farber’s caregiver web pages and read the How to Create a Caregiving Plan PDF booklet.)

• Focus on the person, not their cancer. When writing holiday cards, aim for sentiments that remind the patient why they’re needed and loved. When shopping, try to find gifts that reflect him or her as a person, not a patient.

• Know when to ask for help. No matter what the season, reach out for assistance if you feel that you or your loved one needs support. At Dana-Farber, some resources to consider include support groups, getting guidance from a social worker, or simply talking with your loved one’s health care team. If your loved one has completed treatment, he or she may benefit from a meeting with the Adult Survivorship Program.

Remember, there’s no right or wrong way to celebrate the holidays. Whether you follow old traditions or make new ones, focus on keeping the season inclusive and positive. Make it a time to recharge, renew friendships, and celebrate your time together.

By Kiara Kharpertian

The fall season is sort of strange for me. Over the past few years, a number of important things happened during this season. In early October 2010, I was diagnosed with stage III breast cancer at the age of 25. Though I was rediagnosed stage IV in March 2013, by October 2013, exactly three years to the day that I found that original lump, my scans came back clean – no evidence of disease.

But six weeks later, in November 2013, an MRI revealed about a dozen small, scattered brain tumors.

Fast forward another year: October 3, 2014 – one day off my original discovery and clean scan date of October 4 – and I’m walking down the aisle to marry my best friend, a man who I only started dating a year earlier, when my roommates and I threw a “clean scan” party.

Kiara and her husband, Kai, at their wedding

My husband, Kai, and I deliberately decided on a fall wedding when, late last spring, we found out my brain tumors were growing back following whole brain radiation. We didn’t want to wait, in part because brain metastases are so unpredictable, but also because seeing that uncertain road ahead made us all the more determined to walk it together. Kai had already told me – not asked, but told – that I should marry him. It happened just days before we found my brain tumors. New diagnoses, new treatments, new protocols wouldn’t change anything. We made a loving, supportive team. And so I found myself embarking on a clinical trial and wedding planning in the same week.

A trip to Puerto Rico

You wouldn’t think that sitting in an infusion room at Dana-Farber’s Susan F. Smith Center for Women’s Cancers would lend itself to addressing hurried save-the-date envelops or sketching centerpiece designs, but that is exactly what I did over the next three months. I took my chemotherapy pills at home, but every three weeks I had an appointment with my oncologist and every six weeks I received an infused bone strengthener for some holes in my spine left by old tumors. The third floor dining pavilion in Dana-Farber’s Yawkey Center became my new workspace; between appointments one afternoon I designed my program, and went home that night and printed it. Planning everything during treatment seemed incredibly normal.

And I suppose that’s been one of my guiding mantras throughout this experience, from my first stage III diagnosis four years ago to the current war we’re waging against my brain tumors: be normal. I took one short medical leave after I was initially diagnosed, but since then I have remained enrolled full time as a doctoral student in the English Department at Boston College. I’ve made steady progress on my exams and, now, my dissertation. My professors and the administration at BC have been extremely accommodating and understanding and I feel I have a responsibility to honor that generosity with my own determination. And I try to approach the rest of my life’s pursuits – horseback riding, rock climbing, writing, being a wife, a friend, a sister, a daughter – with the same hard work. Just like anyone else would do.

So, in the end, planning a wedding during cancer treatment was extraordinarily, well, ordinary. I did what any other bride would do, albeit in a bit of a different setting. The extraordinary part was walking down the aisle (or grass, in my case) to see my husband smiling back at me and recognizing the amazing declaration we were about to make with the support of our family and friends.

The extraordinary part is also waking up each fall morning knowing that, despite what’s around this day’s leaf-bronzed, pumpkin-clad corner, I can make it to winter.

Ana Karen Ventura may be a long way from home, but it sure doesn’t feel like it.

Ana Karen Ventura enjoys her new digs

Ventura, 11, is an inpatient at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center, but her hospital room at Boston Children’s Hospital looks more like the bedroom of any tween girl.

There are posters of flowers and her favorite celebrities, paper butterflies hanging from the ceiling, and blue and purple lights strung around her window, door, and mirror. A colorful bedspread matches the shade of her new lamp, and a portable dresser has the credo “Bald Girls Rock!” highlighted on its top.

She just lost her hair, but Ana Karen can’t stop smiling as she shows off her new decor. “It’s even cooler than I thought it would be,” she says, looking at the “Ana Fight” flags hanging on one wall. Even cooler, her mother Mireya says, is how much the decorations help Ana Karen feel good about herself.

The Mexico native’s room was spruced up through the “Dec My Room” program, available to each child whose stay at the hospital is slated for three weeks or more. It is especially appealing to bone marrow transplant patients like Ventura who have weakened immune systems which restrict them to their rooms much of the time.

A mini-dresser with a message

“Having their room ‘deced’ – or decorated – gives kids more control and makes them feel more comfortable while they are staying here,” says Amanda Dean, MS, CCLS, a child life specialist in the Stem Cell Transplant Center at Dana-Farber/Boston Children’s. “It’s normalizing; it gives them a sense that they have a lot of their own stuff around them, not just the hospital’s.”

The initiative is funded by One Mission, a charitable foundation dedicated to enhancing the lives of pediatric cancer patients and their families. Each eligible child receives a sign-up sheet on which they describe their favorite hobbies, colors, and other interests; using these preferences, volunteers head to the stores and purchase items. While patients are away having a procedure or hanging out in the playroom, the volunteers come in and work their magic.

“Some patients and their parents cry when they come back and see it,” says Mary Malley, MS, CCLS, another child life specialist. “But that’s OK, because some of us are crying too.”

Decorated rooms vary dramatically based on a patient’s age and sex. A preschooler might opt for a Thomas the Tank Engine bedspread and pillows, while a teenager goes for shag carpets and lava lamps. The youngest patients, including those born with cancer, have activity mats, crib carousels, and other items normally found in a nursery. Siblings of all “dec” recipients are remembered with gift cards from One Mission.

A mother-daughter moment

“Stem cell transplant can offer a cure, but it is an intense process – so we do everything we can do to make this feel like a home away from home,” says Leslie Lehmann, MD, Medical Director of the Pediatric Stem Cell Transplant Unit at Dana-Farber/Boston Children’s. “Decorating their rooms helps tremendously. It also gives patients something they can control and gives staff a chance to better see who they were and what they love before they became patients.”

Raul Ventura says Dana-Farber/Boston Children’s programs including Dec My Room have helped his daughter Ana Karen “live a very special moment and experience, full of magic which represents happiness, strength, and hope.” He says the family wants to help with future initiatives.

In the meantime, although the Venturas are here for “one mission – the health of our daughter” – things like this make the challenge a little easier to handle.

“The love they show the children is incredible,” Mireya Ventura says. “We are so thankful.”

Gabriel Solis is a typical 3-year-old. He likes puzzles and swimming and singing. He shakes off colds like other children. Gabriel, however, is not like other children. He has a functioning immune system thanks to an international gene therapy trial for “bubble boy” disease whose early success was reported recently in the New England Journal of Medicine (NEJM).

Gabriel Solis

When Gabriel was 4½ months old, no longer protected by his mother’s immunity, he came down with a fever and pneumonia that landed him in the intensive care unit of the local hospital in the family’s hometown of La Serena, Chile. A few days later, he was stable enough to take the one-hour flight, tethered to a ventilator, to Santa Maria Clinic in the capital of Santiago. “I was getting very worried,” his mother, Carolina Riquelme, recalls through an interpreter. “The situation was getting worse and worse.”

In Santiago, Gabriel’s parents received the devastating diagnosis. Their only child had X-linked severe combined immunodeficiency (SCID-X1). His blood did not contain the T-cells that form the core of the body’s immune system. For the next five months, Gabriel lived in the hospital’s isolation unit. Left untreated, boys with SCID-X1 usually die of infection before their first birthday. “We were in a state of shock,” Riquelme says.

In April 2012, the family traveled to Dana-Farber/Boston Children’s Cancer and Blood Disorders Center for gene therapy.  The trial aims to cure the disease while avoiding the treatment-related leukemia that developed in one-quarter of patients in pioneering European trials more than a decade earlier. Gabriel’s stem cells were infused with a specially reformulated virus – a vector – designed to correct the genetic defect that causes SCID-X1.

Eight of nine boys recruited to the trial, including Gabriel, are alive between 12 and 38 months after treatment, with no SCID-X1-associated infections, the international research team reported in NEJM. Gene therapy alone generated functioning immune systems in seven of the eight. Genetic studies of the boys’ new T-cells, which are critical components of the body’s immune system, reveal that the reconfigured viral vector used to deliver the gene therapy did not lead to an expansion of cells with vector insertions near known cancer-causing genes, raising cautious hopes about the vector’s long-term safety. One child died of an overwhelming infection present at the time gene therapy began.

“Gabriel was critically ill on a ventilator at the time of diagnosis, and now he is thriving,” says Sung-Yun Pai, his pediatric hematologist-oncologist at Dana-Farber/Boston Children’s and lead author of the research published in NEJM. “Only a minority of babies with SCID-X1 have the optimal donor for standard transplant, a brother or sister who is tissue-type matched,” she adds. “For the rest, gene therapy is a therapeutic option that avoids the need to find an alternative donor and avoids complications of allogeneic transplant such as graft-versus-host-disease.”

Investigators will monitor Gabriel and the other patients for treatment-related leukemia for 15 years. In the prior European trials—which were the first to demonstrate gene therapy’s potential to successfully cure a disease—leukemia appeared two to five years after treatment. This outcome was one of several events that together slowed clinical progress in gene therapy for many years.

“Our goal was to produce a vector that would remain effective and at the same time reduce the risk of leukemia,” said corresponding senior author David A. Williams, MD, the Dana-Farber/Boston Children’s leader who is principal investigator for the gene therapy trial’s U.S. sites and corresponding senior author of the NEJM paper. “The efficacy data from our study is clear: The vector does work to correct the disease. And by a surrogate endpoint, we have improved the treatment’s safety, although it’s too early to say that we’ve completely eliminated the long-term risk of leukemia.”

After a single round of treatment, six of the seven boys for whom the gene therapy was successful had achieved the trial’s primary efficacy endpoints—a T-cell count greater than 300 cells per microliter of blood and good response to a test that measures T-cells’ ability to react to pathogens. The seventh boy received a second round of gene therapy and remains healthy despite having relatively low T-cell counts. The eighth surviving patient was successfully treated with a conventional hematopoietic (blood-forming) stem cell transplant after gene therapy failed to stimulate T-cell production.

“Gabriel is living a normal kid’s life,” his mother says. “We thank God and the doctors from Boston Children’s. We’re Catholic, and we believe God put the doctors and this therapy in our way.”

Sidney Farber, MD

In the 1940s, children diagnosed with leukemia had a grim prognosis; there was essentially nothing doctors could offer to treat the young patients, other than cortisone therapy to help with side effects of the disease.

But in 1948, Dana-Farber founder Sidney Farber, MD, believed a drug that blocked folic acid would shut down the production of abnormal bone marrow associated with leukemia. After a trial of this drug proved effective in a group of young patients, Farber published his discovery to the New England Journal of Medicine. Although it was met with some skepticism, it would prove to be the first of many important advances spearheaded by Farber.

In this recording from March 8, 1951, Farber discusses research in the treatment of acute leukemia. The talk was given as the Linsley R. Williams Memorial Lecture, which is part of the “Lectures to the Laity” series produced through the New York Academy of Medicine and New York Public Radio.

Mastectomy bra with a space for a prosthesis.

For many women with breast cancer, a mastectomy, or removal of the breast, is a necessary part of treatment. Although breast reconstruction is available to most women, some choose to use prosthetics to replace the missing breast(s). If a patient decides to use prosthetics, there are special types of apparel, known as mastectomy clothing, which can help provide comfort and a natural appearance.

Here are some common questions around prostheses and mastectomy clothing:

What is a breast prosthesis?

A breast prosthesis is an artificial breast that is used to simulate the natural breast and body shape. Depending on the type of surgery (lumpectomy or mastectomy), a woman can have full or partial breast prostheses to balance her appearance. The prostheses are typically made out of silicone, foam, or fiberfill and they are worn inside a bra or attached to the body with special adhesive.

Mastectomy bras

What is a mastectomy bra?

A mastectomy bra is a special bra that is designed to hold weighted breast prostheses. The bras can come in a variety of colors and styles and can usually be fitted at the same time as a breast prosthesis fitting.

How soon after surgery can I be fitted for my breast prosthesis and mastectomy bra?

Usually, the fittings take place 6-8 weeks after surgery. It is important patients receive permission from their physicians to move forward with a fitting.

Will my insurance cover my breast prosthesis and mastectomy bra?

Most insurance companies will cover costs for the prosthesis and mastectomy bras, and Medicare will cover them as medically necessary. Patients should get a prescription from their doctor stating their diagnosis and the need for a right or left breast prosthesis and prosthetic bras.

Swimsuit with space and support for a prosthesis

Is other mastectomy clothing available?

There are several brands that offer clothing specifically for patients who use breast prosthesis. It is possible to find almost any type of clothing – tank tops, t-shirts, dresses and swimsuits – that have built-in bras to offer extra support and room for prostheses.

Some articles of mastectomy clothing, such as lingerie and swimsuits, provide pockets to insert prostheses. Post-mastectomy swimsuits often have extra support for prosthesis and rise higher in the back, so a woman can wear a mastectomy bra with the suit. Special water-friendly prosthetic forms are also available, with fast-drying, breathable fabric.

Mastectomy clothing – tank top

More information on mastectomy clothing – including fittings, consultations and product availability – is available through Dana-Farber’s Friends’ Place. Visit the Susan F. Smith Center for Women’s Cancers at Dana-Farber website for more information on breast cancer treatment and research.

Mimi Gallagher never missed a gynecologist appointment. Her maternal grandmother died from ovarian cancer in her early 70s, and Gallagher, at 46, was well aware of her risk. Despite her diligence, and years of worry-free trips to the gynecologist, the mother of two was diagnosed with stage III c ovarian cancer.

Mimi with her husband and two daughters

Troubling symptoms in July 2012, including bloating, constipation, and lethargy, led Gallagher to visit her gynecologist, primary care physician, and a gastrointestinal specialist, but, she says, “Ovarian cancer was never on anyone’s radar.” However, a vaginal ultrasound soon confirmed her cancer, and she was referred to a surgeon who removed all visible signs of cancer.

Gallagher and her husband were shocked: “Within four days, I went from a stay-at-home, active mom to a cancer patient about to undergo a nine-plus hour surgery.

After surgery, Gallagher received four months of intraperitoneal chemotherapy, during which chemotherapy drugs are injected directly into the abdomen through a catheter. Panos Konstantinopoulos, MD, PhD, at the Susan F. Smith Center for Women’s Cancers at Dana-Farber was her oncologist. Gallagher made it through this intensive therapy with the support of her husband, friends, and daughters, and finished active treatment on December 12, 2012 – now her lucky number.

Like many who receive a cancer diagnosis, Gallagher was kept up at night by one question: “Why did this happen to me?” To find out, and assess her risk of secondary cancers, Gallagher had genetic testing done and found out she carried the BRCA gene, which increases the risk of ovarian and breast cancers.

While Gallagher was relieved to point a finger at something for her diagnosis, and soon underwent a preventative mastectomy to reduce her risk of breast cancer, there was a downside.

Dr. Konstantinopoulos and Mimi

“It’s a terrible piece of news given that I am a mother of two teenage daughters and knowing that I may have passed this gene on to them,” Gallagher says. Her daughters are 16 and 13 years old.

“The thought of them being diagnosed with ovarian cancer sends chills down my spine; it just cannot happen. We must find better diagnostic tools where we can catch the disease in its earliest stages.”

Life after cancer is different, Gallagher says. While her blind faith in reaching old age has been taken, today she is cancer-free and dedicated to aiding research for ovarian cancer – for her sake and that of her daughters.

Gallagher recently shared her story with Dana-Farber physician-scientists and women’s cancers supporters at the Susan F. Smith Center Executive Council Luncheon. Watch her full story.

Erin Silva, RN

Erin Silva, RN, BSN, has formed very strong connections with her adult patients at Dana-Farber/New Hampshire Oncology-Hematology (Dana-Farber/NHOH) in Londonderry, New Hampshire. However, the 30-year-old oncology nurse rarely saw the full impact of cancer on their children.

After a stint at summer camp, she has a much better idea.

Silva spent a week in late August as nurse for the MIT chapter of Camp Kesem, a non-profit, student-run organization that offers free camping experiences to children ages 6-16 whose parents are living with or died from cancer. “Kesem” means “magic” in Hebrew, and the network of 63 Kesem camps throughout the United States mixes traditional camp activities, like sports and arts and crafts, with special bonding exercises to bring magic to families coping with cancer.

While at Camp Kesem MIT, held in Hartford, Maine, Silva fixed the bumps and bruises for about 50 boys and girls, along with helping them work through much more intense challenges.

“One night we had an empowerment campfire,” explains Silva. “The counselors stood up and told why they went to camp; some of them had lost a parent to cancer. Because they saw their counselors talking, many of the kids felt comfortable enough to stand up and share their stories as well. One 7-year-old girl talked about losing her mother at age four, and kids who were the oldest of several siblings spoke of taking on more of a parenting role. I saw such strength from the kids, it was incredible.”

Erin having some fun at camp. Photo credit: Camp Kesem

Every Kesem camper and counselor has a nickname, and Silva was dubbed “Wonder Woman” because she has a keychain with the superhero’s likeness. “It was embarrassing at first,” she says with a laugh, “but I think it fit my role as camp nurse, helping make everyone better.”

A Merrimack, New Hampshire, native, Silva was first introduced to oncology nursing when she spent a day shadowing her mother, a case manager for an oncology floor at Southern New Hampshire Medical Center. She instantly knew she wanted to pursue it as a career, and says she loves bonding with her Dana-Farber/NHOH patients because of their optimism.

Erin works on arts & crafts. Photo credit: Camp Kesem

“They are the most positive people I have ever met,” she says. “It’s uplifting to me to be part of their lives, and helping bring about even more positivity in them is something special. They teach me every day.”

Now she has an increased understanding of what her patients’ children may be going through.

“It’s amazing how much pressure and responsibility a lot of these kids feel to help take care of their parents,” says Silva, who hopes to reprise her camp role next summer. “Maybe by helping my patients understand this more I can make things easier for everyone.”