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New Surgery Technique Expands Treatment Options for Brain Tumor Patients

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For many patients with brain tumors or other abnormal tissue located deep in the brain, treatment options have been limited. Last year, Jill Colter, now 50, discovered that a brain tumor resulting from Stage IV melanoma had returned. “Several years earlier, I had treatment with surgery and radiation, but the tumor came back,” Jill said. Due to the location of Jill’s tumor and her prior radiation, surgery and further radiation weren’t possible to treat her tumor.

Jill Colter (right) celebrating her birthday with her mom.

Jill Colter (right) celebrating her 50th birthday with her mom, Elizabeth (left).

Colter was referred to neurosurgeon Alexandra Golby, MD, director of image-guided neurosurgery and clinical co-director of the Advanced Multimodality Image Guided Operating (AMIGO) Suite at Brigham and Women’s Hospital and a key member of the Center for Neuro-Oncology team at Dana-Farber/Brigham and Women’s Cancer Center (DF/BWCC).

“For many patients like Jill, traditional surgical methods often aren’t feasible because of the risks, and medications or radiation may not be effective,” explains Golby. “Due to these challenges, we have devoted years to researching other ways to reach these areas of the brain in order to help patients with brain tumors, severe epilepsy, and other neurological conditions.”

Golby recommended interstitial laser ablation, a new technique that uses image guidance (a GPS-like system for the brain) to direct a laser fiber to the precise area that needs to be treated. Magnetic resonance imaging (MRI) and specialized software are then used to measure heat treatment delivered through the laser fiber. Golby performed Colter’s procedure in the AMIGO Suite at BWH, which brings together all of the technological elements required for interstitial laser ablation. The AMIGO Suite is a state-of-the-art medical and surgical research environment that houses a complete array of advanced imaging equipment and interventional surgical systems.

Colter was able to go home one day after her procedure without interruption of her daily activities. In June, she celebrated her one year anniversary since her procedure and has had no recurrence. “I feel so grateful to have access to such advanced medical care, as well as a wonderful support network of family, friends, and caregivers,” Colter says. And, Colter is looking forward to celebrating another very important day this summer – her 51st birthday, a birthday she just happens to share with Golby.

This post originally appeared on Health Hub, a health blog from Brigham and Women’s Hospital


Adult Leukemia: Five Things You Need to Know

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More than 52,000 new cases of adult leukemia are diagnosed in the U.S. each year. Although it is one of the more common childhood cancers, leukemia is found more often in older adults.

As September marks Leukemia and Lymphoma Awareness Month, we look at some important facts about adult leukemia:

1.     What are the different types of leukemia?

Leukemia cells

Leukemia cells

Leukemia is a cancer of the blood. Main types of leukemia include:

  • Acute Lymphocytic Leukemia (ALL)(ALL) is a type of leukemia in which the bone marrow makes too many immature lymphocytes. Similar to AML, the white blood cells can be high or low and oftentimes the platelets and red blood cells are low. This form of leukemia is more common in children than adults.

 

2.     What are the symptoms of leukemia?

People with adult leukemia may experience fever, fatigue, bruising easily, shortness of breath, pain or feeling of fullness below the ribs, appetite loss, and weight loss.

 

 3.     What are the risk factors for developing leukemia?

While studies have shown men to be more at risk than women, some other risk factors include older age, smoking, having had chemotherapy or radiation exposure in the past, and having certain genetic disorders, such as Down syndrome.

 

 4.     How do doctors test for leukemia?

While test procedures vary based on the type of leukemia, the two most common procedures are the complete blood count (CBC) test and the bone marrow aspiration biopsy.

CBC is a procedure used to check the red blood cell and platelet counts, the number and type of white blood cells, the amount of hemoglobin in the blood, and the amount of blood made up of red blood cells. A bone marrow aspiration biopsy involves removing a sample of bone marrow, blood, and a small piece of bone by inserting a needle into the hipbone or breastbone. The sample is then examined for abnormal cells.

 

5.     How is leukemia treated?

Leukemia is treated differently depending on the type and specific diagnosis. The most common treatments include chemotherapy and stem-cell transplantation.

Patients may also consider treatment through a clinical trial. Dana-Farber currently has more than 30 clinical trials for adult leukemia. A national list of clinical trials is available at clinicaltrials.gov.

For more information on adult leukemia, visit the website for the Dana-Farber/Brigham and Women’s Cancer Center Adult Leukemia Program.

Understanding the New Treatment Guidelines for HER2-Negative Breast Cancer

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A new national guideline for the treatment of women with a type of advanced breast cancer known as HER2-negative disease balances state-of-the-art evidence with a need to tailor therapy to each patient’s circumstances and preferences.

Ann Partridge, MD, MPH

Ann Partridge, MD, MPH

The guideline, developed by a panel of experts convened by the American Society of Clinical Oncology (ASCO), will help clarify the choices facing patients and physicians in treating one of the most common forms of breast cancer. Nearly 80 percent of advanced breast cancers are classified as HER2-negative, meaning the cancer cells do not have excess amounts of the HER2 protein and don’t respond to drugs that specifically target that protein.

“Many different treatments are available for this form of cancer. Our panel conducted a detailed review of studies that have examined the effectiveness of these therapies,” says the panel’s co-chair, Ann Partridge, MD, MPH, director of Adult Survivorship and a breast medical oncologist in the Breast Oncology Program at the Susan F. Smith Center for Women’s Cancers at Dana-Farber Cancer Institute. “In many cases, there was no clear winner – no single chemotherapy agent that consistently outperformed the others. The decision on a course of therapy is one that patients and physicians should make together, taking into consideration prior therapies, side effects, other medical conditions, and patients’ preference.” The panel that developed the new guideline consisted of medical oncologists and breast cancer scientists.

The guideline is the latest in a series that ASCO is issuing for breast cancer treatment. These will serve as models of future guidelines for treating other forms of cancer.

“These guidelines are designed to assist patients and physicians, who face decisions every step of the way through cancer treatment,” Partridge remarks. “The guideline for HER2-negative breast cancer offers a systematic review combined with an expert consensus-based approach to treatment, with an emphasis not only on the efficacy of treatment but also on patients’ preferences and priorities.”

More details on the guidelines.

Woman Finds Inspiration for Jimmy Fund Walk While Traveling the Country

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Barbara and her friend, Betty, at the Jimmy Fund Walk finish line

Barbara and her friend, Betty, at the Jimmy Fund Walk finish line

It all began as a way to celebrate being 65 and healthy. Barbara Sirvis had been getting herself into the best shape she had been in since retiring as a college president. She wanted to recognize her accomplishment by doing something big, something that she couldn’t have done before.

After some convincing from her friend and veteran walker, Betty McEnaney, Sirvis had her challenge: the Boston Marathon® Jimmy Fund Walk presented by Hyundai.

That was year one, and Sirvis is now training for year four. But she no longer does it for herself; she does it for the patients and for everyone who has fought cancer.

Part of what makes Sirvis’s walk special is the names she collects for Walk Day. Sirvis lives in Vermont and winters in California, and every year she travels across the country in an RV with her dog. Along the way, she stops at campsites, meets people, and listens to their stories. Often, Sirvis finds people who have been touched by cancer, and she tells them she walks for the Jimmy Fund to support the cancer research and patient and family care at Dana-Farber. Sirvis collects the names of those who have been touched by cancer and adds them to the t-shirt she wears on the Walk Day. This year, she will have more than 250.

Barbara's Walk t-shirt, covered in names

Barbara’s Walk t-shirt, covered in names

Now an annual tradition, Sirvis spends the night before the Walk writing all the names on the back of her shirt. She reserves her sleeves for her donors’ names.

“It’s like everyone I walk for has my back as I tackle the 26.2 miles, and all my donors are at my shoulders, holding me up. I couldn’t do it without their support and encouragement,” Sirvis says.

For Sirvis, Walk day is the best day. In addition to the names she collects, Sirvis finds inspiration in the Walk Hero signs that line the route with stories of Dana-Farber patients. Every mile reaffirms her faith in the Jimmy Fund’s mission to support cancer research and care at Dana-Farber.

“A former colleague told me I would spend a third of my life learning, a third of my life earning, and a third of my life giving back. My job now is to give back, to walk, and to raise money for an organization that truly makes a difference,” Sirvis says.

BarbaraSivris4-2This year, Sirvis will have a special name to add to her shirt. In July, her 90-year-old mother was diagnosed with breast cancer and was treated near her home in North Carolina. The treatment, Sirvis says, has been a positive experience and her mother’s prognosis is good. In fact, Sirvis’s connection to the Jimmy Fund came full circle when she learned her mother’s nurse practitioner did her training at Dana-Farber. At that point, Sirvis says, she knew her mother was in good hands.

The Boston Marathon Jimmy Fund Walk presented by Hyundai will be held on September 21 this year and there is still time to sign up and lace up, to support a walker or to make a general gift to the event.

How Robotics are Improving Treatment for Head and Neck Cancers

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With robotic surgery (left), there is no incision and no scars, while open surgery (right) involves an incicsion from the lip to the ear.

With robotic surgery (left), there is no incision and no scars, while open surgery (right) involves an incicsion from the lip to the ear.

Head and neck (oropharyngeal) cancer is the sixth most common cancer in the U.S., with nearly 40,000 new cases diagnosed each year. Though tobacco and alcohol use can raise the risk of developing the disease, exposure to the human papillomavirus (HPV) poses an even greater risk. People who have had an oral HPV infection have a 50 times greater risk of developing head and neck cancer versus the general population. Currently, nearly three quarters of head and neck tumors test positive for HPV. A growing number of these newly diagnosed cases are among men in their forties and fifties.

Since the early 1990s, patients with head and neck cancers have been treated primarily with chemotherapy and radiation. Surgery has been avoided as a first line treatment because head and neck tumors can be difficult to reach, requiring invasive surgery that can affect organ function, lead to swallowing difficulties, and require a feeding tube.

Donald Annino, MD, DMD and Tom Thomas, MD, MPHDivision of Otolaryngology at Brigham and Women’s Hospital (BWH), now use state-of-the-art robotics to treat patients with head and neck cancer. Transoral robotic surgery (TORS) is a minimally invasive procedure that uses a combination of high-definition 3D magnification, robotic technology, and miniature instruments to remove a benign tumor or cancerous tissue from a patient’s throat (pharynx or larynx). Since offering the service in 2011, Annino and Thomas have performed over 45 procedures using TORS.

Unlike open surgery, no external incision is required for TORS. Instead, slender robotic arms and tiny surgical tools are guided to the tumor site through the mouth. There are four robotic arms – one equipped with a high definition 3-D magnification camera and three that act as the surgeon’s arms – each holding a different instrument, depending on the particular task. The camera gives the surgeon enhanced detail, true depth of field, and a panoramic view, and the robotic hands allow surgeons a greater range of movement versus the human hand. Enhanced visualization, precision, and dexterity provide important advantages when working in delicate areas of the throat.

“TORS has been a safe option for patients with head and neck cancer. It results in a shorter hospital stay and improved quality of life,” says Annino. Ongoing research, he adds, indicates that TORS also may reduce the need for radiation and chemotherapy later.

This post originally appeared on the Brigham and Women’s Hospital blog, Health Hub

Advice from Mother and Son on Facing Cancer Together

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Hearing the words “you have cancer” can be hard enough, but what is it like to hear them echoed for a loved one? Having two cancer patients in one family calls for extra strength from everyone involved.

The Perry family

The Perry family

Karen Perry was undergoing treatment for ovarian cancer when she and her husband Brian learned that their son Owen, then 11, had leukemia. He was hospitalized for five months at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center.

“My knees buckled when I heard the news,” recalls Perry. “Learning Owen had cancer was harder than learning I had it.”

The Perrys offer the following advice to other families in their shoes.

  1. Unless your family is at risk for certain cancers, don’t try to figure out how or why cancer struck twice. Most of the time, it’s not because of the water you drink. It’s just an unlucky coincidence. Move forward with a plan for both patients.
  2. Try to keep things normal for others in the family. We tried to maintain a routine for Julia, who is 14. One of us was always home at night with her while Owen was in the hospital, and she continued seeing friends on weekends. She had the hardest part, watching her mother and brother deal with cancer and lose their hair. “We were the supporting cast,” says Brian. “Our job was to keep Mom and Owen healthy.”
  3. Accept help. The support we received from family, friends, and neighbors was invaluable. People were excited to help. A hot meal appeared at our door every night. Friends offered to transport our daughter Julia to her activities when we were at the hospital with Owen.
  4. Understand that everyone handles cancer differently. “I knew I could control my reaction to having cancer, but not Owen’s,” recalls Karen. “He would deal with it in his own way.”
  5. Find a silver lining. Owen having cancer took Karen’s mind off her own situation.  For Owen, cancer was familiar. He had seen his mom go through it and carry on with a normal life, and he knew that he could, too. “We were cheerleaders for each other,” says Karen.

Karen and Owen Perry participated in the 2014 WEEI/NESN Jimmy Fund Radiotelethon. Watch a short video or listen to their story.

If you are a parent with cancer, learn how to talk with your children about your situation. If your child has cancer, seek support from your cancer center or community. Dana-Farber/Boston Children’s understands that cancer affects the whole family, and offers many types of psychosocial support.

What are the Main Types of Gynecologic Cancers?

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Close to 100,000 women are diagnosed with a gynecologic cancer in the United States each year. In recognition of Gynecologic Cancer Awareness Month, we’re taking a look at the main types of gynecologic cancers and their symptoms.

Cervical cancer

In cervical cancer, cancer cells form in the tissues of the cervix, the lower, narrow end of the uterus. More than 12,000 new cases are diagnosed in the U.S. each year. Unlike other gynecologic cancers, cervical cancer has a standard screening test, the Pap smear, during which a doctor takes a sample of cells from the cervix. Doctors may also test DNA for the human papillomavirus (HPV), which contributes directly to cervical cancer.

Symptoms of cervical cancer, including vaginal bleeding or unusual discharge, pelvic or back pain, or bleeding after sexual intercourse, may not appear until the disease is advanced. Women who have HPV, many sexual partners, or a weakened immune system, or who smoke cigarettes or had sexual intercourse at a young age, are at a higher risk of developing this disease.

 

The Gynecologic Oncology team from the Susan F. Smith Center for Women's Cancers meets regularly to coordinate patient treatment plans.

The Gynecologic Oncology team from the Susan F. Smith Center for Women’s Cancers meets regularly to coordinate patient treatment plans.

Endometrial (uterine) cancer

The endometrium is the lining of the uterus, part of which is shed during a woman’s menstrual cycle. About 52,630 women are diagnosed in the U.S. each year, 75 percent who are over the age of 55. Symptoms of endometrial cancer include abnormal bleeding or discharge, difficult or painful urination, pelvic pain, or pain during sexual intercourse. Women who take estrogen without progesterone, are overweight, have diabetes mellitus, or a family history of Lynch syndrome, or who take tamoxifen for breast cancer, are at a higher risk of developing endometrial cancer.

 

Ovarian cancer

Ovarian cancer can form in the tissue of the ovaries, which produce eggs and female hormones, or in the fallopian tubes, and it accounts for more deaths than any other gynecologic cancer. If women develop symptoms of ovarian cancer, which include abdominal pain, feeling full after eating, and abdominal swelling, they should see their gynecologist or primary care doctor. While there is no single effective screening test for ovarian cancer, pelvic exams, during which a doctor physically examines a woman’s reproductive organs, combined with an ultrasound, blood tests, biopsy, or a CT scan, can help diagnose the disease. The most common risk factors for ovarian cancer include a family history of ovarian and/or breast cancer, as well as other cancers, such as melanoma and pancreatic cancer,  the use hormone replacement therapy or fertility drugs, having never had children or infertility, and late onset of menopause.

 

Gestational trophoblastic tumor

A rare cancer accounting for less than one percent of gynecologic cancers in the U.S., gestational trophoblastic tumor is a disease where cancer cells form in the tissues created in the uterus following conception. These tumors can be difficult to find because they often look like a normal pregnancy; however, if a woman is experiencing abnormal vaginal bleeding or if she is pregnant, but the baby has not moved at the expected time, it may be a sign of trophoblastic disease. Doctors may test for gestational trophoblastic tumors with a pelvic exam, ultrasound, or blood test for the beta-HCG hormone, which is a sign of pregnancy. If a woman has symptoms of a tumor, but no HCG in her blood, it may be an indication of trophoblastic disease.

 

Vaginal cancer

There are two main types of vaginal cancer. Squamous cell carcinoma is the most common and spreads slowly near the vagina, but may continue to the lungs, liver, or bones. The other main type is adenocarcinoma, which forms in the glandular cells lining the vagina and is more likely to spread to the lungs and lymph nodes. Risk factors for this rare cancer (just 3,170 new cases per year in the U.S.) include being exposed to the drug DES (diethylstilbestrol) before birth, HPV, having a hysterectomy, or being over the age of 60. Women experiencing abnormal bleeding or discharge, pain in the pelvic area, constipation, a lump in the vagina, or pain while urinating or during sexual intercourse should talk to their doctor, who can perform a pelvic exam, Pap smear, biopsy, and other tests to determine the presence of cancer.

 

Vulvar cancer

Vulvar cancer, which accounts for four percent of gynecologic cancers, forms in a woman’s external genitalia, most often in the outer vaginal lips. One of the main risk factors for vulvar cancer is vulvar intraepithelial neoplasia (VIN), in which abnormal cells grow slowly on the vulvar skin over time. Other risk factors include having HPV or a history of genital warts. Women with vulvar cancer may experience abnormal bleeding or itching, tenderness, lumps or growths, or color changes or growths on the vulvar skin.

 

Successful treatment of gynecologic cancers depends on recognizing symptoms early and being evaluated by oncologists who specialize in gynecologic cancers. Survival rates for many of these cancers have increased through the years, and researchers from the Gynecologic Oncology Program at the Susan F. Smith Center for Women’s Cancers at Dana-Farber are continuously working on new treatment options, many of which have resulted in innovative clinical trials for these diseases. Learn more about gynecologic cancers, their symptoms, and treatment by visiting the Susan F. Smith Center for Women’s Cancers.

Real Superheroes: A Teen Talks about What Happens When Both Parents Have Cancer

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By E.R.

Seventeen-year-old E.R. reflects on both parents’ battles with cancer. For this post, E.R. and the family wished to remain anonymous. 

Simply put, the role of a parent is to take on more roles. From lab coat supermodel and expert peanut-butter-and-jelly chef to personal shopper and bodyguard; parents do whatever it takes to provide for (and entertain) their children. This is why, to children, moms and dads are the real superheroes. Whether they’re flying in to save the city or magically appearing on your bad days, they swoop in just in time, every time. But every superhero has their kryptonite. For my parents, it was cancer.

superhero tearing off his clothes -cool skinBoth of my parents battled cancer during the same three-year span. The first diagnosis came when I was 13 and the second when I was 14. This disease, as random as it is, chose to favor one of my parents over the other; this past March, my father lost his battle. Between 2011 and 2014, I saw my superhero parents take on a lot of new roles. They shared the role of caregiver not only for me, their only child, but for each other through treatments and tough times. I got to see my parents laugh about the seemingly impossible task of finding rice pudding in the hospital for my dad, and cry on the days when he was too tired to eat it. I learned that cancer markers can be atypical and unreliable, and sometimes even the smartest doctors are unable to predict the future. I met and heard about so many incredible people who made a difference for my parents, and learned about the gaps in our knowledge of this horrible disease and the damage it can do. But my biggest takeaway from the cancer experience is that my superhero parents are also human.

Cancer not only exposes these human qualities, but it shows them in the best light. When I hear people talk about the bravery and strength it takes to fight this disease, I find that some of the small victories often go unnoticed. Despite having to wear a big and uncomfortable back brace, my dad never missed an open house at my school, or a chance to show me the Excel spreadsheet he made of his tumor markers. Even though my mom had to put her career as a physician on hold to take care of my dad, she studied hard for her boards and passed with outstanding marks to renew her certification. Capes or not, I admire my parents for all that they have done and all they have taught me. In my 17 years the greatest lesson I’ve learned is that being human is not a weakness, but a strength.


Marathon Motorcyclists Roll for Dana-Farber

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Like many Dana-Farber Cancer Institute supporters, Fred Georgoulis walked 26.2 miles on Sunday in the Boston Marathon® Jimmy Fund Walk presented by Hyundai. It was Georgoulis’ second trip in recent months down this course; his last was on a classic Harley Davidson FXRS.

Bikes Lined Up

Motorcycles lined up for the Boston Motorcycle Marathon Ride

Georgoulis is the creator and director of the Boston Motorcycle Marathon Ride, one of the Jimmy Fund’s newest events. For the past two summers, on the second Sunday in August, he and more than 1,000 other motorcycle enthusiasts have ridden the legendary Hopkinton-to-Copley Square route of the Boston Marathon® , raising money for research and patient care at Dana-Farber in the process.

“The idea came to me after I did the Boston Marathon Jimmy Fund Walk in 2012, and then did the Halloween Witch Ride [for motorcycles] in Salem few weeks later,” says Georgoulis, a North Andover, Mass., retiree and father of four whose wife, Denise, is a breast cancer survivor. “I remember thinking, ‘Why can’t we do the marathon route on our bikes for the Jimmy Fund?’ How cool would it be to cruise down Commonwealth Avenue and Beacon Street with people cheering for Dana-Farber?”

Biker Fred Arm

Georgoulis’ “Boston Marathon – Jimmy Fund” tattoo

He asked his friends who rode, and while some were skeptical if he could pull it off, others thought it was a great idea. Then he called the Jimmy Fund, and they were supportive as well.

“During the course of the year we work with hundreds of individuals who conduct events on behalf of the Jimmy Fund and Dana-Farber, resulting in millions of dollars being raised,” says Brenda Goodell, director, Special Events at the Jimmy Fund. “They range anywhere from fishing tournaments to events like Fred’s. His motorcycle ride is unique and attracts so many participants – we are extremely grateful for his efforts.”

Although Georgoulis jokes that a career in the automotive industry did not prepare him for the job, he was soon knocking on the doors of North Andover businesses and police departments throughout New England to get logistical and other support. “I did all my visits in person, so people could look in my eyes and see how serious I was,” Georgoulis says. A Hopkinton company donated its huge parking lot as a starting point, and threw in food and portable restroom facilities, as well.

Aided by fellow volunteers Karen Kimball and Kevin Nee, Georgoulis worried that the inaugural ride, scheduled for August 11, 2013, might be postponed after the Boston Marathon bombings of that April. In the end it became even more powerful. Georgoulis read that the Jimmy Fund was the favorite charity of slain MIT police officer Sean Collier, and approached the MIT Police Department and Collier’s family about doing the ride in his memory – including laying a wreath at the Cambridge location where he was killed by the accused bombers. They agreed.

Biker Fred on Bike

Georgoulis on his bike with fellow Marathon Ride volunteer, Karen Kimball

“My son Nicholas is a police officer, and is 26 – the same age Sean was when he was killed,” says Georgoulis. “I was already honoring my wife and all those with cancer through the ride. By honoring Sean’s memory, I could also honor my son and other officers.”

The 2013 ride went off as planned, with more than 250 police officers and more than 1,000 motorcyclists – many of them cancer survivors — taking part. This year the ranks grew to more than 1,300, and Georgoulis is already planning his 2015 fundraising ride for the Jimmy Fund. The skeptics have disappeared.

What is Gestational Trophoblastic Disease?

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Donald P. Goldstein, MD, co-director and founder of the New England Trophoblastic Disease Center

Donald P. Goldstein, MD, co-director and founder of the New England Trophoblastic Disease Center

Gestational Trophoblastic Disease (GTD) is a rare disease where a group of tumors develops in the uterus after conception, leading to abnormal development of the placenta. It affects about 1 in 1,000 pregnancies. More than 80 percent of GTD cases are non-cancerous and all forms can be treated, with the majority of cases curable.

Physicians with the New England Trophoblastic Disease Center at Dana-Farber/Brigham and Women’s Cancer Center (DF/BWCC), affiliated with the Susan F. Smith Center for Women’s Cancers at Dana-Farber, have produced more than 300 original research reports and publications on GTD, which continue to help improve prevention, early detection, and treatment of the disease. The Center has also put together the largest gestational trophoblastic cancer registry in the United States, providing insight into the long-term effects of GTD treatment, including fertility.

Below, DF/BWCC experts provide some basic details:

 

Are there different types of GTD?

There are three main types:

  • Hydatidiform mole, or molar pregnancyA condition that occurs when fertilization of an egg results in an abnormal pregnancy. A complete molar pregnancy develops when a fertilized egg lacks maternal genes and grape-like cysts fill the uterine cavity. A partial molar pregnancy occurs when more than one sperm fertilizes a normal egg and results in a pregnancy with an abnormal placenta and fetus.
  • Choriocarcinoma – A highly malignant form of GTD that spreads rapidly and requires vigorous treatment. It can begin as a molar pregnancy or from tissue that remains in the uterus following a miscarriage or childbirth.
  • Placental-site trophoblastic tumor, or epithelioid trophoblastic tumors – A rare form of GTD that forms in the uterus at the site where the placenta was attached. These tumors less commonly spread to other parts of the body.

 

SOG_5551_13-2What are the risk factors for GTD?

Doctors are not always able to explain why a woman develops GTD, but risk factors can include:

  • Women who have had pregnancies after age 40
  • Previous cases of GTD
  • Diet low in beta carotene or vitamin A
  • Long-term use of oral contraceptives
  • Irregular periods
  • Women who have had miscarriages

 

What are the symptoms of GTD?

The most common symptoms of GTD are feeling pregnant and vaginal bleeding. Other symptoms can include:

  • Abdominal bloating
  • Nausea and vomiting more severe than in normal pregnancy
  • Fatigue, shortness of breath, and lack of energy due to anemia
  • Signs of an overactive thyroid gland (rapid heartbeat, warm skin, mild shaking)
  • High blood pressure due to pre-eclampsia

In some cases of choriocarcinoma, women may be symptom-free until the disease affects other organs.

 

Ross Berkowitz, MD, co-director of the New England Trophoblastic Disease Center

Ross Berkowitz, MD, co-director of the New England Trophoblastic Disease Center

How is GTD treated?

After the diagnosis, the uterine contents are removed by suctioning (also called dilation and evacuation). If the tumors are benign, the patient is monitored for six months. Older patients who have completed childbearing may undergo a hysterectomy to reduce the risk of malignancy.

If the GTD is malignant, treatment will depend on the stage of the disease and any risk factors. The three kinds of treatment commonly used for GTD include chemotherapy, radiation therapy, and hysterectomy.

Gynecologic oncologists are also evaluating novel, targeted therapies through clinical trials. A list of Dana-Farber trials is available here and a national list is available at clinicaltrials.gov.

 

Is pregnancy possible after GTD?

Most women who have had a single incidence of GTD can go on to have normal pregnancies.

After chemotherapy is completed, women should postpone pregnancy for 12 months while they are monitored to make sure the tumor does not recur.

For more information, visit the website for the New England Trophoblastic Disease Center.

What are the Different Types of Non-Hodgkin Lymphoma?

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Although lymphoma diagnoses are often categorized as either Hodgkin lymphoma or non-Hodgkin lymphoma, there are many subtypes of each disease, with more than 50 subtypes of non-Hodgkin lymphoma alone.

Most forms of the more than 70,000 new cases of non-Hodgkin lymphoma diagnosed in the U.S. each year can be broken up into two main subtypes: B-cell lymphomas and T-cell lymphomas. The subtype is based on whether the cancer cells develop in the body’s B-cells or T-cells, which are two forms of white blood cells. The maturity of the B-cell or T-cell also dictates the type of lymphoma that develops.

B-cell lymphomas

B-cells are a type of white blood cell that creates antibodies, which help fight infections. B-cell lymphomas make up approximately 85 percent of non-Hodgkin lymphomas, according to the American Cancer Society.

Some common types of B-cell lymphomas include:

  • Diffuse large B-cell lymphoma (DLBCL) – The most common type of non-Hodgkin lymphoma. DLBCL is a fast-growing lymphoma. Chemotherapy is often very effective in this type of lymphoma.
  • Burkitt lymphoma – A fast-growing type of lymphoma that occurs most often in children and young adults. It may affect lymph nodes or other areas of the body including the jaw, central nervous system, bowel, kidneys, ovaries, or other organs.
  • Chronic lymphocytic leukemia – A slow-growing form of lymphoma in adults arising from mature lymphocytes found in the blood, bone marrow, lymph nodes and/or the spleen.
  • Follicular lymphoma –  The most common slow-growing lymphoma in adults.  The disease is highly treatable and patients typically live many years with the disease.
  • Mantle cell lymphoma – An aggressive disease which presents in middle aged or older adults in the lymph nodes, spleen, blood, bone marrow and gastrointestinal system.
Linfeng Chen, PhD who led a research study on a type of B-cell lymphoma.

Linfeng Chen, PhD, led a research study on a type of B-cell lymphoma.

T-cell lymphomas

T-cell lymphomas are much less common than B-cell lymphomas. T-cells help control immune system responses and can attack foreign cells, cancer cells, and cells infected with a virus.

Types of T-cell lymphoma include:

  • Precursor t-lymphoblastic lymphoma/leukemia – A rare and aggressive disease that can be categorized as lymphoma or leukemia. It is categorized as lymphoma if too many T-cell lymphoblasts (immature white blood cells) are found in the lymph nodes and spleen with low-level involvement in the bone marrow. It is leukemia if lymphoblasts are found in the blood and bone marrow with or without lymph node and spleen involvement.
  • Peripheral t-cell lymphoma – A rare and fast-growing group of lymphoma that arises from mature T lymphocytes.

In general, symptoms of non-Hodgkin lymphoma can include swollen lymph nodes, drenching sweats, fever, weight loss and fatigue. These symptoms can vary depending on the patient and the diagnosis.

Treatment for non-Hodgkin lymphoma depends on the subtype, but doctors may use a combination of chemotherapy and immunotherapy with or without radiation therapy. New treatments are also being tested through clinical trials.

More information on the treatment of non-Hodgkin lymphoma is available through the Dana-Farber/Brigham and Women’s Cancer Center Adult Lymphoma Program

The Latest in Ovarian Cancer Treatment and Research

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Although ovarian cancer is often difficult to treat, research continues to yield results that are improving outcomes and quality of life for many patients.

Ursula Matulonis, MD; Susana Campos, MD, MPH; and Panos Konstantinopoulos, MD, PhD

Ursula Matulonis, MD; Susana Campos, MD, MPH; and Panos Konstantinopoulos, MD, PhD

“Ovarian cancer research and treatment is exciting today because there are so many resources available and we are no longer committed to just the standard chemotherapy,” says Susana Campos, MD, MPH, a gynecologic oncologist with the Susan F. Smith Center for Women’s Cancers at Dana-Farber. “People can really have fruitful lives even if they are living with ovarian cancer.”

Campos recently joined fellow gynecologic oncologist Panos Konstantinopoulos, MD, PhD, for a live video webchat led by Ursula Matulonis, MD, medical director for the Gynecologic Oncology Program at the Susan F. Smith Center.

The chat, which included questions submitted by patients and viewers, covered the latest research developments and treatment options for ovarian cancer, including advances in immunotherapy, PARP inhibitors and genetic profiling.

“I’m very excited about the different combinations of therapies that we are exploring,” Matulonis says. “It only makes sense that we combine these therapies to really tackle the different, innate problems in ovarian cancer.”

“We live in an exciting time in ovarian cancer research with a lot of novel drugs that are being developed,” Konstantinopoulos says. “I think there is a bright future for our patients who fight this difficult disease.”

View a recording of the webchat below:

Five Things Young Women with Breast Cancer Should Know

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While the majority of women diagnosed with breast cancer are age 55 or older, about 14,500 women age 45 and younger are diagnosed with breast cancer in the U.S. each year. In recognition of Breast Cancer Awareness Month, here are some facts about breast cancer all young women should know.

1. Breast cancer tends to be found later in young women

SOG_9339_12-2Since younger women are generally less aware of their risk and are less likely to be screened, breast cancers in young women (age 40 and younger) tend to be found later and in more aggressive stages. Exercising, maintaining a healthy body weight, reducing alcohol intake, regular monitoring through clinical exams, and reporting any new or concerning breast symptoms to a physician may help keep cancer risk at a minimum.

2. Genetic testing can help identify women who are at increased risk

While all women are at risk for breast cancer, women who have a family history of premenopausal breast or ovarian cancer or a family member with a mutation in the BRCA1 or BRCA2 gene are at a higher risk and should speak to their physician about genetic testing. Knowing the results may influence when, how, and how often women and their family members are screened for breast and other cancers, and whether it might make sense for them to consider medical or surgical risk-reducing strategies.

3. Breast and secondary cancers can occur after treatment

When treatment is finished, many patients want to say “It’s over.” However, there is a chance cancer can recur after treatment, or that secondary cancers unrelated to the first may appear. For young women especially, who have many years ahead of them, maintaining a healthy diet and exercise routine, as well as receiving proper, age-appropriate screenings, can help prevent cancer or detect recurrence early.

4. Breast cancer treatment can affect fertility

Young women who are treated for breast cancer with chemotherapy may be less likely to become pregnant, due to chemotherapy-related damage to the ovaries.  Young breast cancer patients may not have been considering a family yet, which can make fertility a difficult issue to discuss with family or significant others. Young women may want to consider freezing their eggs or embryos to increase their chances of having children following treatment.  This is an important issue for young women to discuss with their care team prior to treatment.

5. Treatment varies for each woman

Treatment for breast cancer varies depending on the type and stage of the cancer, but usually includes surgery, as well as chemotherapy and/or hormonal therapy and often radiation therapy. Many young women with cancer in one breast think that removing both breasts with a contralateral prophylactic mastectomy will improve their chance of long-term survival. However, removing just the cancer with a lumpectomy, followed by radiation therapy, is much less invasive and just as effective.

Some young women may also consider removing both breasts to prevent their chances of getting cancer later in life. While bilateral prophylactic mastectomies have reduced the risk of breast cancer in women who have the BRCA1 or BRCA2 gene mutations or a strong family history of the disease, this is a major decision and women should discuss all of their options and the potential outcomes with their treatment team before making any surgical decisions.

To learn more about breast cancer in young women, visit the Program for Young Women with Breast Cancer at the Susan F. Smith Center for Women’s Cancers at Dana-Farber. If you are a young woman facing breast cancer, consider attending Breast Cancer in Younger Women: A Forum for Patients and Survivors on Oct. 17, which will feature panel discussions and lectures on coping with breast cancer as a young woman.

New Drug Combination Shows Promise for Women with Recurrent Ovarian Cancer

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For many women with ovarian cancer that has returned after initial treatment, a two-drug combination can significantly extend the time that the disease is kept in check, according to a phase 2 clinical trial led by investigators at the Susan F. Smith Center for Women’s Cancers at Dana-Farber.

Joyce Liu, MD, in her lab

Joyce Liu, MD, in her lab

As reported in Lancet Oncology, researchers compared the drugs cediranib and olaparib, versus olaparib alone, in their ability to stall the advance of ovarian cancer in women with a recurrent form of the disease that responds to platinum-based chemotherapy agents. The investigators found that the median period before the disease began to worsen – known as progression-free survival (or PFS) – was nearly 18 months for women receiving the combined therapy, versus nine months for those receiving olaparib alone.

The results were even more striking in two subsets of study participants. In women whose ovarian tumors lacked mutations in the genes BRCA1 or BRCA2, the median PFS for those treated with the combination therapy was 16.5 months, vs. 5.7 months for those treated with olaparib only. In women whose tumors did carry BRCA mutations, the median PFS for the combined-therapy group was 19.4 months, vs. 16.5 for the olaparib-alone group.

The study enrolled 90 patients with platinum-sensitive, recurrent ovarian cancer. Half were randomly assigned to receive cediranib and olaparib (both in pill form), and half received olaparib alone.

Severe side effects to treatment, though relatively rare, were more common in the cediranib-and-olaparib group, with fatigue, diarrhea, and hypertension being the most frequent problems.

Cediranib and olaparib attack two markedly different vulnerabilities in cancer cells. Cediranib is an angiogenesis inhibitor that prevents tumors from forming new blood vessels. Olaparib is a poly(ADP-ribose) polymerase – or PARP – inhibitor that hampers cancer cells’ ability to repair damaged DNA, potentially sending them into a death spiral. Both drugs, used as single agents, had been shown to be active in women with recurrent ovarian cancers, and, as a pair, were found to be active and tolerable to patients in a phase 1 trial.

The study authors say it isn’t entirely surprising that the drug duo performed better in women whose tumors don’t carry BRCA mutations. The BRCA genes are involved in repairing DNA damage. When BRCA is hamstrung because of a mutation, a cancer cell is particularly vulnerable; when a second repair pathway is shut down with olaparib, that vulnerability can become fatal to the cell. This explains why olaparib has had promising results in patients with tumors with BRCA mutations – and why the addition of cediranib didn’t provide much further benefit.

In ovarian tumors without BRCA mutations, by contrast, a separate dynamic appears to be at work. Denying tumors sufficent blood with an angiogenesis inhibitor like cediranib reduces the amount of oxygen available to the cells, creating a condition known as hypoxia. With less oxygen, they may be more susceptible to the DNA-repair blocker olaparib. Hence, the combination of drugs is better than olaparib alone, the authors write.

“Ovarian cancer is the leading cause of death from gynecologic malignancy in the United States,” notes Ursula Matulonis, MD, medical director of Gynecologic Oncology at the Susan F. Smith Center for Women’s Cancers, who led the study with Joyce Liu, MD. “Although many patients benefit from initial treatment, most eventually will relapse. That has spurred a search for therapies that can be effective after resistance to initial therapies develops.

“In this study, we saw a remarkable improvement in progression-free survival with combination cediranib and olaparib in this group of patients,” she continues. “This approach merits further study as an alternative to conventional chemotherapy for this disease.”

Two, large-scale phase 3 clinical trials comparing the combination therapy to other drug regimens are slated to begin enrolling patients early next year, both supported by the National Cancer Institute.

Brain Tumor Survivor Shares Her Tips on the College Transition

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By Frannie Palmer

As a kid, I stumbled on my feet quite a bit. I had to use two hands on the railing while going down stairs. My parents thought I was just a little clumsy.

Frannie

Frannie Palmer

The truth was, a brain tumor was creating pressure on my cerebellum and causing my incoordination.

I was 6-years-old when I had surgery to remove the non-cancerous tumor. It wasn’t until I began applying for early decision admission to Wheaton College that I fully grasped how much it had affected me.

After the surgery, I had to re-learn how to walk and talk. My childhood was filled with multiple MRIs a year; I’ve lost count of how many I’ve had to this day. MRI appointments, now once every other year, are coupled with visits to the Stop & Shop Family Pediatric Neuro-Oncology Outcomes Clinic, a clinic for pediatric brain tumor survivors, where I update my team of doctors on the latest news of my life and any difficulties I may be facing.

Frannie 1I sometimes struggle with my balance. My information processing speed is a little slower than normal. And my overall neurological function can be labored. However, I also participate in horse shows, and made the Dean’s List both semesters I’ve been at Wheaton. I have to give myself more time to do my assignments, and I am frequently working with the dean of disabilities, but my professors and counselors pay close attention and help me keep track of my work.

During my senior year of high school, I had the privilege to hear students speak at College Night, presented by the School Liaison Program at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center. I was honored when I had the opportunity to speak at this year’s presentation, held on October 9, and share the lessons I’ve learned from my experience.

Here is some advice I can give to student survivors who are getting ready to make this transition:

  • Don’t be ashamed of your diagnosis. Being honest with people allows them to know who you truly are, and helps you build better relationships.
  • Be proactive about using resources offered on campus, such as counseling and the office of disabilities.
  • Accept the limitations you have. Whether it is academically or physically, learn to work with your own style of learning so that you may work to your fullest potential.
  • Always remember how far you’ve come, and never be afraid to go after what you want.

I believe survivorship is something to be proud of. It doesn’t define who I am, but it is a significant part of my character. Since I was so young when this journey began, I grew up knowing I was a little different. I knew, though, if I ever let it get in the way of achieving my goals, I would miss out on many opportunities.

I’ve realized I don’t know what I would be like if I’d never had the tumor, or the surgery. And I’m okay with that. I am proud of how far I’ve come. It makes me confident, stronger, and more resilient.


Should I Take Aspirin to Prevent Cancer?

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A steady drumbeat of research suggest that taking a small dose of daily aspirin over a period of years can reduce the risk of certain cancers.

In August, researchers from London’s Queen Mary University concluded that daily aspirin taken over 10 years reduced the risk of developing cancers of the digestive tract – colon, stomach, and esophagus – by as much as 40 percent, and had a lesser impact on the number of lung, breast and prostate cancer diagnoses. The leader of the research – published in the Annals of Oncology,  said “the evidence is that everyone between 50 and 65 should consider [taking daily] aspirin.”

PF_pillsFinal_100More recently, a team at Fox Chase Cancer Center in Philadelphia presented new research showing that low-dose aspirin helps suppress inflammatory pathways that feed prostate cancer cell formation. And another study in 2014 reported that daily aspirin could reduce the risk of ovarian cancer by 20 to 34 percent.

Yet neither the American Cancer Society (ACS) nor any other health organization currently recommends taking aspirin specifically to prevent cancer. For one thing, the studies don’t meet the highest standards of scientific proof: They  are all observational studies designed to look for preventive effects in heart disease. None have been prospective side-by-side comparisons of aspirin versus no aspirin for cancer prevention.

The biggest obstacle to recommending routine aspirin use is the significant risk of causing gastrointestinal bleeding, which can be fatal. The risk increases with age, especially after age 70. At this point, experts say, the benefits of aspirin on cancer risk aren’t great enough to outweigh the risks of harm. Leonard Lichtenfeld, MD, deputy chief medical officer at the ACS, said the evidence falls short of justifying routine aspirin as a cancer preventive. “But it rises to the level that people should have a discussion with their doctor,” he said.

The strongest data favoring aspirin as a preventive are for cancers of the colon and rectum, stomach, and esophagus. A 2010 review of four clinical trials revealed that over a 20-year period, taking low doses of aspirin was associated with a 24 percent reduction in colon cancer cases and a 35 percent drop in deaths.

However, a study by researchers at Dana-Farber and Massachusetts General Hospital has suggested that this benefit may be limited to individuals who are already at high risk of colon cancer because they have elevated levels of an inflammatory factor called TNFR-2in their blood.  Charles Fuchs, MD, MPH, director of Dana-Farber’s Gastrointestinal Treatment Center and senior author of the study, noted that TNFR-2 was the only one of three inflammatory markers that was relevant to colon cancer risk, showing that testing for specific biomarkers likely will be needed to identify patients who might benefit from preventive use of aspirin or other anti-inflammatory drugs.

This finding reflects a larger set of unanswered questions about aspirin as a cancer preventive: Who might benefit – people who are at low risk for developing cancer, or those at high risk? How long does it take for aspirin’s presumed protective effect to kick in, and how long must the drug be taken for maximum benefit?

Research continues. Meanwhile, patients should discuss the pros and cons of daily aspirin, as with any course of medication, with their doctor.

Themed Chemo Visits Help Breast Cancer Patient Cope with Treatment

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Cancer treatment is never fun, but Cheryl St. Onge figures if she has to go through it, she’s doing it with style — and smiles.

Each time the breast cancer patient arrives at Dana-Farber/Brigham and Women’s Cancer Center at Milford Regional Medical Center for her infusion visit, she wears a different themed outfit. One time she was a cowgirl with boots, hat, and a fringed vest; another time she came ready for a Hawaiian luau with the appropriate loud shirt and lei. Last month she was a nurse in scrubs.

Susan and Rita on "Margaritaville Day" (That's a  sports drink margarita)

Cheryl and Rita on “Margaritaville Day” (That’s a sports drink margarita)

The wardrobes are kept a secret from her caregivers and fellow patients, leading to much speculation as her visits near. Sometimes she leaves the theme up to her latest driver – a group of family members and friends rotate the duty of taking her to the clinic – while other times she dreams it up herself. In all cases, the ritual brings excitement and a lighter atmosphere to a place where both are welcomed.

“It started when I came in for my first infusion,” explains St. Onge, 58, a middle school assistant principal in Worcester, Mass. “I don’t want to make light of cancer, but I knew I couldn’t go through 17 infusions and not do something to change my attitude about them.”

That’s when St. Onge asked her nurse, Janet Rogers, RN, BSN, whether patients name their IV poles. Rogers said some do, and St. Onge dubbed her new IV pole “Rita.”

“I like to have a margarita now and then, so I figured this would be my margarita for the next year,” St. Onge says with a laugh.

Carrying this theme, St. Onge came in three weeks later with a margarita glass filled with Gatorade and a sombrero to honor Rita.

Cheryl brings "Hawaiian Day" to the clinic

Cheryl brings “Hawaiian Day” to the clinic

So began the ritual. On “Cowboy Day,” there were bandanas and sheriff’s badges for Rogers, Rita, and St. Onge’s oncologist, Natalie Sinclair, MD. When it was “Hawaiian Luau Day,” St. Onge wore the requisite loud shirt, attached a fake parrot to Rita, and everybody got leis. Rita even got to be a nurse with her own set of scrubs on “Health Care Appreciation Day” – when St. Onge also brought in breakfast for the staff.

Sinclair and Rogers both say St. Onge’s visits have had a transformative impact. “This is helping her go through it, but it’s also helping everybody else,” says Rogers. “The other patients ask when she’s coming in, and they love seeing what she and Rita are wearing.”

"Country-Western Day"

“Cowboy Day”

St. Onge raves about the care she’s received in Milford, where she is on a 51-week clinical trial for breast cancer patients with the HER2-positive protein. She loves the facility’s modern architecture, compassionate staff, and the fact it’s a scenic 15-mile drive from her Shrewsbury, Mass. home. She also feels good knowing Sinclair is in regular consultation with her colleagues at Dana-Farber/Brigham and Women’s Cancer Center (DF/BWCC) in Boston, and that she can take part in a clinical trial without traveling to the Boston campus. A number of trials in different cancers are underway in Milford, with more being added.

What’s St. Onge’s next theme going to be? She won’t reveal, but, she says, “If I can make one person happier seeing what I do to make myself feel better, then I will have accomplished something.”

Tips for Recovering from a Hysterectomy

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Clipboard, paper and pen. Stock shot.Hysterectomy, the surgical removal of the uterus, may be used to treat a variety of gynecologic cancers, including endometrial (uterine), ovarian, or cervical, or gestational trophoblastic  disease. Like any major surgery, recovering from a hysterectomy, which may also include removal of the ovaries, cervix, and fallopian tubes, takes time. Here is some advice from the Susan F. Smith Center for Women’s Cancers at Dana-Farber on recovering safely following a hysterectomy.

Balance activity with rest.

Walking is one of the best ways for the body to recover and heal. Start slow and always listen to your body. You may be more tired than you were before surgery, and may need to take breaks or naps throughout the day.

Avoid lifting objects heavier than 20 pounds for at least six weeks. Because of the procedure, and the pain medication that accompanies it, leg movements may be uncomfortable and your response time may be slower, so steer clear from driving for at least two weeks.

Eat a well-balanced diet.

A well-balanced diet is important for good health overall, especially when regaining strength following a surgery. Aim for 8-10 glasses of water per day and a diet of protein, fiber, and healthy fats, such as nuts, seeds, and olive oil. Increasing your fiber intake will also help with constipation problems that may follow surgery. If constipation does occur, you can take stool softeners or gentle laxatives to manage it.

Keep your wound clean.

Properly caring for your wound will help your incision heal while preventing infection. Wash the incision area with warm water and soap each day and pat dry, but avoid fully submerging in a bathtub for four weeks following surgery. Keep an eye on your incision for redness, swelling, tenderness, or drainage, which may be signs of infection. Talk to your surgeon if you see any signs of infection or have a fever higher than 100.5.

Avoid sexual intercourse while healing.

Sexual activity is not advised for at least eight weeks following surgery; your surgeon will let you know once it is safe to resume sexual intercourse. Do not put anything, including tampons, in the vagina until being cleared by your doctor.

You may experience body changes.

After a hysterectomy, it is normal to have vaginal discharge, often bloody in the first few days, for up to eight weeks. You may also experience symptoms of menopause, including hot flashes, night sweats, and vaginal dryness, if you had a total hysterectomy including removal of the ovaries. It’s also normal to feel depressed, have a decreased appetite, or feel more tired. If these feelings persist, speak with your surgeon.

Shifting from Pediatric to Adult Care: Advice from a Survivor

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By Catherine MacLean

The health care transition from pediatric to adult practitioners is an important process for any young adult, but it is especially critical for cancer survivors.

10303772_10203835242259109_3135826620775548914_n-2Typically, this transition takes place sometime between ages 16 and 21. I was diagnosed with aplastic anemia at age 4 and had a bone marrow transplant at age 10. My shift to adult health care began around the time I was 17 and was completed at about age 21. I am now 23 and in full control of my own health care. From my personal experience, here are some critical pieces of advice for making the transition:

1. Start slow and early

It will be much easier to take charge of your health if it’s a gradual process. Start with basic things that are easy to handle, such as calling the pharmacy to refill your medications, or making your own doctor’s appointments.

Don’t worry if you can’t do it on your own the first time –it’s OK to ask for help! As you develop independence, you’ll gain a sense of what your needs and preferences are, which will make life much easier when you have to find new providers and assume full responsibility for your care.

2. Know yourself!

You are the expert on your body, goals, values, and preferences. All of these have a place in your health care. Make choices based on what feels right for you. Don’t be afraid to try out different practitioners until you find a good fit, or make a choice that’s different from those you made in the past. And when something’s not right—speak up!

3. Know your history

As a survivor of a serious childhood illness, you come to adult health care with a medical history that is different from most of your peers. It is essential that you know your own history so you can participate actively in your care.

Sometimes, learning about your history can feel like a huge burden or bring up difficult memories and emotions. If you need to, take it slow as you collect information, and consider seeking support from a trained professional.

One of the most helpful tools I developed is what I call my “medical resume,” a one-page sheet that summarizes my entire medical history and current medical information, along with contact information for my past and present medical practitioners and myself. I give it to any new practitioner I see, along with their intake paperwork. If you decide to create a medical resume, consult with your doctors to understand what information to include.

Remember that when you move from one health care center to another, you will need to take your medical record with you. Call the office and ask for a copy of your record, and mention that you will be transferring to another provider. You may need to pick up a physical copy of your record or you may have access to your records via an online portal.

4. Have a team and a plan

Think carefully about the pediatric practitioners you have and what kind of care you will need as an adult. Sometimes your current practitioners work in hospitals or clinics with adult programs. You also may want to look for a survivorship clinic that can help manage follow-up care and screenings for late effects of your treatment. Build a team that meets all of your needs.

You also need a plan for the process of transitioning. Which providers will you transition first? What responsibilities will you take over and when? How will you get health insurance? Thinking through questions like these will help simplify the transition process and ensure nothing falls through the cracks.

5. This might be hard on your parents or guardians

The adults in your life spent a lot of time and energy making sure you got the best possible care, and they feel responsible for you and your health. Try to be patient if they seem reluctant to “let go.” Explain why it is important for you to take these steps and have age-appropriate care. One of the best ways to help them through this transition is to demonstrate that you have the skills to take charge of your care, or are working on developing them. Talk about expectations so you both know how to handle these health care decisions and your transition.

For more resources on healthcare transitions visit: gottransition.org. You can also visit Dana-Farber’s childhood and adult survivorship websites for more information. I also helped the Aplastic Anemia and Myelodysplasia International Foundation adapt this transition checklist that might help you start thinking about the process. 

New Clinic Focuses on Why Some Conditions Become Cancer While Others Don’t

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Thousands of people learn each year – usually after a routine blood test – that they have a condition that may develop into a blood cancer such as leukemia, lymphoma or multiple myeloma. The news is often followed by an equally surprising addendum: the condition won’t be treated until it becomes a full-fledged cancer.

Robert Soiffer, MD,

Robert Soiffer, MD, chief of the Division of Hematologic Malignancies at DF/BWCC and co-principal investigator at the BCPC

The lack of treatments for such “precursor conditions” places patients in an awkward limbo: seemingly healthy but waiting for their disease to progress to the point where it’s treatable. Scientists have puzzled over why some people with these conditions go on to develop cancer quickly while others never do, and whether treatment could arrest the disease at the precursor stage.

Advances in genomic technology have given researchers the tools to study the switch from precursor condition to cancer at unprecedented depth. By understanding the fundamental changes that occur in cells’ DNA – and when those changes occur – investigators hope to break the process down to its key components and, ultimately, develop targeted therapies capable of bringing the process to a halt.

To lead that effort at Dana-Farber/Brigham and Women’s Cancer Center (DF/BWCC), researchers have joined to create the Blood Cancer Prevention of Progression Clinic (BCPC), the first such facility in the United States. Comprised of experts in a variety of hematological (blood) disorders, the clinic has begun collecting tissue samples from patients with precursor conditions and from those with advanced disease. The samples will be analyzed to tease out genomic differences between early- and later-stage disorders, and identify which ones lead the march toward cancer.

“In cancer, we’re always looking to diagnose malignancies in their earliest stages, when they often can be treated successfully,” says Robert Soiffer, MD, chief of the Division of Hematologic Malignancies at DF/BWCC and co-principal investigator at the BCPC. “In many hematologic malignancies and disorders, precursor conditions provide this kind of advance notice. The challenge now is to use this knowledge to our advantage – to learn how to ‘read’ the tissue of patients with precursor conditions to determine which cases are likely to advance and which can benefit from early treatment.”

 

Multiple guises

Precursor conditions take a variety of forms and go by a variety of names.  Early myelodysplastic syndrome, a disease in which the bone marrow fails to make enough healthy blood cells, is often a precursor of acute myeloid leukemia (AML). Myeloproliferative neoplasms, growths that cause the bone marrow to produce too many blood cells, can also lead to AML. Smoldering multiple myeloma, which occurs when abnormal plasma cells arise in the bone marrow, is often a predecessor of multiple myeloma, a bone marrow cancer.

Irene Ghobrial, MD, co-principal investigator at the CBPC

Irene Ghobrial, MD, medical oncologist in the DF/BWCC Jerome Lipper Multiple Myeloma Center, director of the Michele & Stephen Kirsch Laboratory, and co-principal investigator at Dana-Farber’s BCPC

Beyond their common identity as heralds of cancer, precursor conditions differ in how likely they are to progress to cancer, how quickly they will do so, and how they behave from one patient to another. Smoldering myeloma, for example, has a 50 percent chance of progressing to myeloma in two to three years, whereas a condition known as monoclonal gammopathy of undetermined significance has only a one percent chance, annually, of advancing to a cancer such as myeloma, lymphoma, or Waldenstrom’s Macroglobulinemia, says BCPC co-principal investigator Irene Ghobrial, MD, medical oncologist in the DF/BWCC Jerome Lipper Multiple Myeloma Center and director of the Michele & Stephen Kirsch Laboratory at Dana-Farber. She and Soiffer are joined by David Steensma, MD, and Benjamin Ebert, MD, PhD, both of the DF/BWCC Adult Leukemia Program, as the new clinic’s co-principal investigators.

“At this point, we don’t have a reliable way of determining which patients’ conditions are likely to progress and which are likely to remain stable,” Ghobrial remarks. “We’re hoping that research at the BCPC will enable us to better determine who is at greatest risk of progression and are the best candidates for treatment.”

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