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People and families affected by hereditary breast or ovarian cancer, related cancers or a BRCA mutation are invited to a June conference sponsored by FORCE, or Facing Our Risk of Cancer Empowered. Titled Joining FORCEs Against Hereditary Cancer and held in partnership with Penn Medicine’s Basser Research Center for BRCA, the international conference will take place June 18-20 at the Philadelphia Downtown Marriott Hotel.
Also welcome are patient advocates, researchers and health care providers who treat high-risk patients.
Presentation topics will include genetics, hormone therapy for previvors, treatments, prevention tactics, sexuality issues, fertility, lifestyle choices in survivorship, consequences of menopause, and insurance and legal rights. There will be opportunities for attendees to enroll in clinical trials of treatments for these diseases, including studies funded by Basser, and to consider becoming advocates to improve the lives of people with these hereditary gene mutations or cancers.
The event will feature a “Show and Tell Room” where women contemplating mastectomies can speak with those who have undergone the procedure and surgeons who perform it. Also on the agenda is an After-Hours Spouse Support Group.
The general registration price is $210, and one-day passes are $125. For more information, visit http://www.facingourrisk.org/getinvolved/ events/annual-conference/index.php.Actress Angelina Jolie told the world about the continuation of her cancer prevention journey on March 24, when she announced in the New York Times that she’d had her ovaries and fallopian tubes prophylactically removed.
Jolie, who wrote that her BRCA1 gene mutation increases the likelihood that she will develop breast or ovarian cancer by 87 and 50 percent, respectively, announced in a similar editorial two years ago that she had undergone a prophylactic double mastectomy.
In the recent piece, Jolie wrote that she had her ovaries and tubes removed after a cancer scare: A doctor told her that inflammatory markers in her blood, which could indicate the presence of cancer, were high. Although further testing did not reveal any cancer, Jolie decided due to her elevated risk and family history to go forward with the surgery, which put her into menopause.
“I did not do this solely because I carry the BRCA1 gene mutation, and I want other women to hear this,” Jolie wrote. “A positive BRCA test does not mean a leap to surgery…There are other options. Some women take birth control pills or rely on alternative medicines combined with frequent checks…The most important thing is to learn about the options and choose what is right for you personally.”
Valerie Harper, the Emmy Award winning actress who starred in the 1970s television shows “The Mary Tyler Moore Show” and “Rhoda,” was the keynote speaker at CURE’s Extraordinary Healer Awards ceremony, held April 23 in Orlando, Fla., on the eve of the Oncology Nursing Society’s 40th Annual Congress.
Harper, 76, is living with leptomeningeal carcinomatosis, a cancer that affects the meninges, membranes around the brain. The disease is a recurrence of the lung cancer with which Harper was diagnosed in 2009.
The actress, whose mother was a nurse, spoke passionately—and at times humorously— about the contributions of oncology nurses during the awards ceremony, also helping to present trophies to the winning nurse and two finalists. Those nurses, among many others, were nominated via essay by patients they had treated, or by the patients’ families.
“I have such a deep appreciation for nurses in general,” Harper said, “but especially for you guys and gals delivering what you do. It goes beyond technology and intellect to the heart you have to bring to it, the caring, the softness—a certain candor you have to have to face death. Only three people won the essay (contest), but I know it goes for all of you.”
Will Ferrell raised money for cancer by playing baseball March 12 in an event filmed by HBO that will appear in a “Funny or Die” special.
During the daylong event in Arizona, the comedic actor visited five ballparks to engage in spring training with 10 teams, with the goal of playing every position on the field. Among the teams he played with were the Chicago Cubs, Seattle Mariners, San Francisco Giants, Cincinnati Reds and Los Angeles Dodgers.
According to Major League Baseball’s website MLB.com, Ferrell anticipated raising nearly $1 million, partly through the auctioning on the site of memorabilia from his whirlwind baseball tour. Proceeds will benefit Cancer for College, which helps fund college educations for people affected by cancer, and Stand Up to Cancer, an organization that uses celebrity star power to highlight and raise funds for translational cancer research. Major League Baseball was a founding contributor to Stand Up to Cancer.Preserving the health of young adults is the goal of an effort on college campuses to quell the use of tobacco, spearheaded by Action on Smoking & Health (ASH).
In November 2014, the organization declared 32 colleges and universities to be “Free From Tobacco Money,” having financially divested from tobacco interests “as a way to fight the tobacco epidemic.” According to ASH, this makes it less likely that students will encounter, try and/or become addicted to tobacco products.
“Universities should not profit from tobacco addictions and death,” says Laurent Huber, executive director of ASH. “The money students spend bettering themselves should not be invested in projects that have such a negative impact on the health of students and of people around the world. By divesting from tobacco funds, these schools are doing their part in the fight against tobacco.”
Schools certified by ASH as tobacco-free include Brown University, Dartmouth College, Emory University Medical School, Harvard University, Johns Hopkins University, Northwestern University, Smith College, Stanford University, Tufts University and the University of Michigan.Integrative techniques such as yoga and laughter therapy are typically practiced in groups, but does it make sense to administer acupuncture that way? Sure, according to study findings presented in April at the Annual Congress of the Oncology Nursing Society.
The study on group acupuncture found that this lower-cost therapy helped to alleviate pain, neuropathy and digestive problems in people receiving outpatient treatment for cancer.
“Most studies of acupuncture have involved individual settings, but most of the data are with nausea and vomiting and hot flashes, and there are very limited data on neuropathy,” says presenting author Cindy Tofthagen, assistant professor in the College of Nursing at the University of South Florida. “There’s quite a bit (of study on acupuncture) for pain, but this is the first study that evaluates group acupuncture for cancer-related symptoms.”
Acupuncture is less expensive in a group setting because patients need to lie quietly after needles are inserted, allowing the acupuncturist to treat others in the interim. The acupuncturist involved in the study charges $75 for an individual session and $20 per person for a group session, Tofthagen says.
The study included 43 patients who underwent at least four group acupuncture sessions over as many weeks, and completed short assessments of seven cancer-related symptoms. The mean age of participants was 66.4 years, and they were primarily white, non-Hispanic and female.
Symptom improvement was not seen until the fourth treatment, when patients reported significantly less pain and numbness and fewer problems with digestion. While there were no significant improvements in sleep, fatigue or dry mouth, trends toward improvement were seen in all those areas. No reduction of headache was experienced.
“The next step is that we’re (testing) four weeks of acupuncture twice a week, because (the acupuncturist) feels that’s ideal,” Tofthagen says. “Then we’ll evaluate the results at completion and two months later, to see if there are any sustained effects once patients are off the program. If we can show some efficacy over time after the acupuncture is finished, that would be really useful.”
Group acupuncture clinics already exist around the country. An organization known as People’s Organization of Community Acupuncture, online at pocacoop.com, is dedicated to the concept, and may be able to help patients find group acupuncture providers in their local areas.On Feb. 5, Medicare started covering lung cancer screening with low-dose computed tomography (LDCT) for high-risk individuals, including current and former smokers. The decision to cover the procedure had been announced in November 2014, following months of consternation after the Medicare Evidence Development and Coverage Advisory Committee voted against coverage in late April 2014.
The decision allows Medicare beneficiaries aged 55 to 77 who are current smokers or have quit smoking within the past 15 years to receive LDCT screening once a year. This includes those with a tobacco smoking history of at least 30 pack years — meaning, for instance, at least a pack a day for 30 years, or two packs a day for 15 years. Individuals must have a written order for the test from a health care provider.
The Centers for Medicare & Medicaid Services (CMS) announcement came a little more than a year after the U.S. Preventive Services Task Force (USPSTF) finalized its “B,” or favorable, recommendation for annual lung cancer screenings with LDCT; that recommendation was for adults aged 55 to 80 who had smoked 30 pack years. USPSTF’s recommendation was based on results of the National Lung Screening Trial, which found that patients who received screening had a 15 to 20 percent lower risk of dying from lung cancer; results published in 2013 showed that targeting screening toward those at greatest risk produced the most effective results.
The possibility that Medicare could have opted against paying for the screenings had stirred controversy because, under the Affordable Care Act, commercial insurers are required to pay due to the B recommendation. A decision against coverage would have resulted in free lung cancer screenings being available to some older Americans with heavy smoking histories, but not to others.
“We believe this final decision strikes an appropriate balance between providing access to this important preventive service and ensuring, to the best extent possible, that Medicare beneficiaries receive maximum benefit from a lung cancer screening program,” says Patrick Conway, chief medical officer and deputy administrator for innovation and quality for CMS.
Lung cancer is the leading cause of cancer death in the United States.It could be a movie. A woman struggles through her cancer journey, facing triumphs and disappointments, often wearing a favorite colorful scarf after she loses her hair to chemotherapy.
When she’s done with her treatment, she passes her scarf to another woman living with cancer, along with a written account of her story. For the woman who receives it, the scarf is a reminder that she’s part of a sisterhood, of sorts.
“The idea started when, as a patient myself, I was sharing scarves and my story, and it was neat to see how it blossomed,” says Lara MacGregor, who was diagnosed with breast cancer while pregnant and now has stage 4 disease. She founded the nonprofit Hope Scarves in Louisville, Ky., three years ago, so far shepherding 2,000 scarves—at no cost—from woman to woman in every American state and in 12 countries.
Worn either on the head or around the neck, each scarf is dry cleaned upon its return to Hope Scarves, packaged with the stories of all who have worn it, and sent to a new patient seeking support. Scarves are sent to patients with similar cancers, in similar stages, as those who have worn them before. Women may be matched by age, by career — one dancer inheriting a scarf from another – or even, MacGregor says, by the hand of fate.
“We’d given a scarf to someone not knowing it had roses on it, and she was so touched because she had lost her mother and grandmother to cancer, and they all were rose gardeners,” MacGregor recalls.
Patients’ stories are included with the scarves even if they have succumbed to cancer, although recipients aren’t told about their outcomes. “We recognize that we have a unique opportunity to keep their story and encouragement alive through their words,” MacGregor says.
The organization is particularly in need of survivors to share their stories and/or scarves, so that enough will be available to meet the requests made by new patients. Survivors can arrange to do that by filling out an online form.
In addition, anyone is welcome to donate to the organization or invite MacGregor to speak; hospitals can get involved by ordering packages of stories and scarves to keep on hand for their patients.
Finally, scarves can be given as gifts. “It’s a meaningful, inspiring way to support someone you care about,” MacGregor says. “We want to do our small part to change the way people experience cancer, to make it a little less isolating and a bit more beautiful.”
In addition to the website, Hope Scarves can be contacted by email at firstname.lastname@example.org, or by phone at (502) 333-9715.Question: What should I ask my doctor about genomic tests that could help to diagnose or select a treatment for my cancer?
Len Lichtenfeld, MD: “Genomics” appears to be the word of the day. With all the excitement about what our rapidly advancing knowledge of the human genome means for cancer research and treatment, a few questions are currently front and center: Can we rely on the results that patients and doctors get back once they order a genomic-based test? Do we understand all the new information, and can we use it effectively?
Many of these tests — such as those approved by the U.S. Food and Drug Administration (FDA) to determine whether a patient is a candidate for one of the newer targeted therapies — have been proved through careful study to be reliable and clearly useful. For instance, one FDA-approved test, the Abbott Vysis ALK Break Apart FISH Probe, checks patients with non-small cell lung cancer for the ALK fusion gene. The presence of ALK predicts a response to the targeted drug Xalkori (crizotinib), and the genomic test was approved as a companion to that drug, since a positive test is required before it is prescribed.
Other tests also may be helpful, but have not gone through such a review process. There is no oversight for tests that are done only in a single laboratory, yet doctors and patients routinely rely on them to help chart the course of treatment. These are called “laboratory developed tests,” or LDTs. One such test is Oncotype DX, which looks at a panel of genes to predict whether a women needs more aggressive treatment for her breast cancer, and also evaluates recurrence risk in colon cancer and can help guide prostate cancer treatment. Cologuard, a test that looks at DNA in stool samples to screen for colon cancer, started out as an LDT but was approved by the FDA last year.
As we reported in the winter 2014 issue of CURE, LDTs are now the subject of scrutiny by the FDA, which wants to regulate the tests. The process is still in relatively early stages, and has already resulted in considerable discussion in the scientific and laboratory community. Some say such oversight is necessary to make certain a test is reliable. Others say oversight will stifle innovation, increase costs and threaten to slow down our ability to bring new and important discoveries to patients’ bedsides.
The jury is still out, since the regulations have not been finalized. But you should know that the fact that a genomic test is available doesn’t mean it always will make a difference in your care. You and your doctor should be absolutely comfortable with your decision to use the test, and with the laboratory that conducts it. And, be certain to know whether or not your insurance will cover the cost of the test, which could be substantial.
Don’t hesitate to ask. These are questions your health professional should discuss with you openly and honestly. There is too much riding on the decision to get the test, so understand its implications for your care before it is done.
Len Lichtenfeld, MD, is deputy chief medical officer of the American Cancer Society. Send House Call questions to email@example.com.
By Bill Aron
[SKYHORSE PUBLISHING, 2015]
What’s beautiful about cancer? The strength of the human spirit and the shining faces of those who have survived the disease.
Photographer Bill Aron has captured these aspects of the cancer experience in his book, New Beginnings: The Triumphs of 120 Cancer Survivors. The book includes compelling portraits of survivors and families of all ages and walks of life, along with vignettes about their cancer journeys. Its aim is to convey hope and inspiration.
One featured survivor, 100-year-old Sally Craigen, is quoted as saying: “I am a two-time cancer survivor, but I never stopped enjoying life — dancing and singing with the choir. I’m singing today. People would always say to me, ‘Sally, you don’t act like you have cancer.’ Yes, I’m hurting sometimes, but not enough to stop enjoying life.”
An environmental portrait photographer who has chronicled Jewish communities across the globe, Aron, who holds a Ph.D. in sociology, is himself a 20-year cancer survivor.
“This is a project by and for cancer survivors: their words, my photographs, in collaboration with their ideas and sensibilities,” he writes on his website, billaron.com/ new-beginnings.html. “This is their book.”
The project is a moving look at the positive new insights that can come out of the darkest times, and will resonate with readers regardless of whether they’ve been affected by cancer.