Tuesday, April 30, 2013


How children cope with parent’s cancer

By Karen Weintraub

 |  GLOBE CORRESPONDENT   
  APRIL 29, 2013
Marc and Maya Silver collaborated on “My Parent Has Cancer and It Really Sucks.”
RICHARD NOWITZ
Marc and Maya Silver collaborated on “My Parent Has Cancer and It Really Sucks.”
Maya Silver was 15 years old when her mother was diagnosed with breast cancer. Her mother was treated and the cancer hasn’t returned. But the experience stuck with Maya, now 27 and director of a nonprofit. A few years ago, her father, Marc, an editor at National Geographic who had written about being the husband of a cancer patient, approached her with the idea of collaborating on a book about teens whose parents have cancer. The resulting “My Parent Has Cancer and It Really Sucks” was published last month.
Q. What motivated you to write this book?
Maya: At first I wasn’t as keen as my dad about working on this book. The idea of spending at least a year of my life thinking about cancer and writing about cancer was a little unappealing. But I knew it would be an important resource, because I had nothing to turn to at the time [of my mother’s diagnosis].
Marc: When I wrote the husband’s book, the guys I interviewed knew what I had gone through more than some of my friends did. Unless you’ve lived it, you can’t really understand. By bringing in so many voices from teens and experts, [I hope we] let people know it’s OK to be scared, to be angry, to be in denial sometimes.
Q. What is distinct about the teenage experience of going through a parent’s cancer that’s different from the experience of a younger or older child?
Marc: Developmentally, teens are in the process of separating from their family and forming their own identities. When a parent gets cancer, it yanks them back into the fold. It can trigger a lot of emotions.
Maya: It introduces a lot more complexity. It’s not just sadness and grief, it’s guilt and resentment. It’s like this thing you don’t want in your life and you don’t want to spend all this time with your family.
Q. Did you learn something about your own journey with cancer while talking to teens for this book?
Maya: [When I was a teenager] I tried to avoid dealing with cancer as much as possible. Once my mom was better, I pushed it out of my life. But [in working on the book] I’d be sitting down with a teen or a group of teens and they’d say, “I felt this or I felt that,” and I said “Yes, I did, too!” Finally having someone to commiserate with, it was a really cool experience.
Q. Did you find some common threads among teens whose parents have cancer?
Marc: A lot of kids didn’t want to be singled out as being the kid whose parent has cancer. They didn’t want kids to give them constant sympathy. A lot of friends would say things that were well intentioned, but would end up ticking off the kid, like “Oh, I know how you feel because my dog had cancer, or my gecko died,” and it was like, no, it’s really not the same.
Maya: It was hard for teens to find friends who really understood what the teen was going through. Because of the limited experience teens have with these kinds of serious issues, they don’t really know how to talk to their friends about it.
Q. Do you have any advice for parents on how to help their teenagers cope?
Marc: It’s really important to talk to your kids, even if your kids don’t seem to want to know about the cancer. One teenager told me he felt like it was a guessing game. He could tell by the looks on his parents’ face when his father wasn’t doing well, but they wouldn’t tell him. The other thing is, you can’t check out of parenting. It’s really important to keep an eye on your teens. If you see things that would cause you concern under any circumstances, that should be cause for concern now.
Q. How has your close-up with cancer influenced your life as an adult?
Marc: Both our daughters have said to us that [they think they will] get breast cancer at some point. That makes me feel so sad. I hope and pray you don’t and I hope they have amazing treatments if that ever were to happen.
Maya: I felt that way for a few years . . . but I think [my sister, Daniela, and I] kind of backed off of that. We both value healthy lifestyles — at least try to increase our chances of not getting cancer.
Interview was edited and condensed. Karen Weintraub can be reached atKaren@KarenWeintraub.com.
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Monday, April 22, 2013


Low-Dose Aspirin Stymies Proliferation of Two Breast Cancer Lines

Apr. 21, 2013 — Regular use of low-dose aspirin may prevent the progression of breast cancer, according to results of a study by researchers at the Veterans Affairs Medical Center in Kansas City, Mo., and the University of Kansas Medical Center.
The study found that aspirin slowed the growth of breast cancer cell lines in the lab and significantly reduced the growth of tumors in mice. The age-old headache remedy also exhibits the ability to prevent tumor cells from spreading.
The lead author of the study, Gargi Maity, a postdoctoral fellow who works in the cancer research unit at the VA Medical Center, will present the team's findings on Sunday, April 21, at the annual meeting of the American Society for Biochemistry and Molecular Biology, which is being held in conjunction with the Experimental Biology 2013 conference in Boston. The senior author is Sushanta Banerjee, director of the cancer research unit and a professor at the University of Kansas Medical Center in Kansas City, Kan.
The role of aspirin, or acetylsalicylic acid, in preventing and treating cancer has intrigued researchers since the late 1980s, when an Australian study found that people who regularly used aspirin were less likely to develop colorectal cancer. Aspirin use also has been shown to reduce the risk of squamous cell esophageal cancer and prostate cancer.
Anecdotal evidence indicated that breast cancer was less likely to return in women who took aspirin to lower their risk of heart attack or stroke. But the science behind this relationship is not well understood.
The VA study found that aspirin may interfere with cancer cells' ability to find an aggressive, more primordial state. In the mouse model the researchers used, cancer cells treated with aspirin formed no or only partial stem cells, which are believed to fuel the growth and spread of tumors.
Banerjee, a professor of medicine in division of hematology and oncology, says first-line chemotherapy treatments do not destroy stem cells. Eventually, the tumor will grow again. "If you don't target the stemness, it is known you will not get any effect," he says. "It will relapse."
In lab tests, aspirin blocked the proliferation of two different breast cancer lines. One of the lines tested is often called triple-negative breast cancer, a less common but more difficult treat form of the disease. "We are mainly interested in triple negative breast cancer, because the prognosis is very poor," Banerjee says.
Triple-negative breast cancers, which will be addressed in a special thematic program at the ASBMB annual meeting, lack receptors for estrogen, progesterone and Her2. Aspirin also may improve the effectiveness of current treatments for women whose breast cancers are hormone-receptor positive. In the team's study, aspirin enhanced the effect of tamoxifen, the usual drug therapy for hormone-receptor positive breast cancer.
Aspirin is used in the treatment of a number of different conditions. Banerjee says its ability to attack multiple metabolic pathways is what makes it potentially useful in the fight against cancer. "Cancer is not a single-gene disease," he says. "Multiple genes are involved."
Aspirin is a medicine with side effects, including gastrointestinal bleeding. Researchers will continue to explore if the positive effects of regular use of the drug outweigh the risks. In 2012, the National Cancer Institute asked scientists to design studies that would illuminate the mechanisms by which aspirin and drugs with other uses appear to reduce the risk of cancer or improve the prognosis for those diagnosed with the disease. Banerjee says his lab will apply for one of the grants.
Other co-authors at the cancer research unit include Snigdha Banerjee, associate professor of medicine in hematology and oncology at KU, and postdoctoral scholars Archana De and Amlan Das.
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Saturday, April 20, 2013

Few breast cancer survivors meet activity guidelines

Breast cancer survivors are among the women who could most benefit from regular physical activity, yet few meet national exercise recommendations during the 10 years after being diagnosed, according to a study.

Prior studies and available evidence show a strong association between physical activity and reduced mortality, extended survival and higher quality of life among breast cancer survivors, according to background information in the study, which was published April 10 on the website of the journal Cancer Epidemiology, Biomarkers and Prevention. 

With 2.9 million breast cancer survivors living in the United States and another 80,000 added annually, there is considerable interest in the factors that promote health and well-being among these women, noted investigators with Fred Hutchinson Cancer Research Center in Seattle.

The researchers followed an ethnically diverse group of 631 breast cancer survivors ages 18 to 64 from New Mexico, Los Angeles County and western Washington for 10 years. Recreational aerobic activity was ascertained for each woman via interviews and questionnaires the year before diagnosis and again two, five and 10 years after enrollment in the study.

Prior to diagnosis, 34% of the women met U.S. guidelines. This percentage remained unchanged two years later. The percentage of women who complied with the activity guidelines increased to 39.5% at five years but dropped to 21.4% at 10 years. Fewer than 8% of the survivors met U.S. physical activity guidelines at all time points in the study.

The researchers based their assessment on U.S. physical activity guidelines that call for at least 150 minutes per week of moderate exercise or at least 75 minutes per week of vigorous activity. Researchers focused on 16 recreational physical activities: fast walking, jogging, running, hiking, aerobics, bicycling, swimming, tennis, golf, skiing, Nordic track, fast dancing, bowling, rowing, horseback riding and light calisthenics.

"The American Cancer Society recommends that cancer survivors exercise for at least 150 minutes per week," Caitlin Mason, PhD, the study’s corresponding author and a postdoctoral research fellow in the Public Health Sciences Division at Fred Hutchinson Cancer Research Center, said in a news release. "Most survivors may also benefit from strength training exercises at least two days per week.

"For survivors who have not been previously active, we advise that they gradually work up to these recommendations."

The researchers were surprised by the large drop in activity between five- and 10-year follow-up. After taking into account factors such as age and body size at diagnosis, they found that no other personal characteristics or aspects related to the type of breast cancer or its treatment were significantly associated with the drop in activity between the five- and 10-year reporting periods.

"It seems unlikely that this pattern reflects aging alone given the consistency and magnitude of the trend across all age groups," the authors wrote. "Whether this reflects a cohort effect or a unique aspect of the cancer survivorship experience is unclear."

All of the women were enrolled in the HEAL (Health, Eating, Activity and Lifestyle) Study, which investigates methods to improve breast cancer survival. Senior author Anne McTiernan, PhD, a member of the Public Health Sciences Division at Fred Hutchinson, is principal investigator of the multi-site study.

The authors acknowledge that levels of inactivity may be underestimated because the women included in the study tended to be a bit younger and were less likely to smoke, have advanced disease or have limits to doing physical activity compared with survivors who were not followed for 10 years.

The predictors of physical activity in this population remain poorly understood, according to the authors.

"Our inability to identify many significant predictors of long-term physical activity participation suggests that the factors influencing physical activity behaviors in breast cancer survivors are complex and may differ from those in the general population," the authors wrote. 

"Additional consideration of psychosocial factors and issues related to pain management, fatigue and specific treatment effects may help to better understand the unique issues faced by cancer survivors and their impact on physical activity participation."

The study abstract is available at http://cebp.aacrjournals.org/content/early/2013/04/10/1055-9965.EPI-13-0141.abstract. 
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Friday, April 19, 2013


You Don’t Have to Face Chemotherapy Alone

285 StrengthBy Diana Price
Patients undergoing chemotherapy for cancer often spend long days in an infusion room, receiving treatment. Though many treatment centers make an effort to create a welcoming environment and provide excellent care, the experience of sitting for hours can still foster a mix of anxiety and boredom that patients find difficult even in the ideal setting.
Many patients face chemotherapy alone, making treatment days even more challenging. Family members are often obligated to work or might live too far away to accompany the patient, and in some cases patients feel guilty about asking friends or family to step in.
The good news is that this need for companionship and support among patients facing chemo alone is not going unnoticed. The following profiles highlight several volunteer-driven organizations that are stepping up to ensure that patients are not alone at this challenging time, and they illustrate the powerful impact that these services provide.

Chemo Companions
When Marriann Gofonia was undergoing chemotherapy for breast cancer, her family, including her five daughters, and many friends made a point to show their support each time she went to the infusion center. Their tight-knit clan often filled the chemotherapy room at Banner Good Samaritan Medical Center in Phoenix, Arizona, with laughter and opened their arms to other patients who were receiving treatment. When Marriann passed away in 2009, her daughter, Alyssa Dinowitz, felt compelled to return to Good Samaritan to continue to share her family’s love with the patients who remained. “When my mom died, I felt an obligation to go back,” Alyssa says. “My heart was broken from her loss, but it was healing for me to continue sharing some joy—the patients were a gift to me.”
Realizing the uplifting impact that her visits had on patients who had no family or friends to accompany them to treatment, Alyssa founded Chemo Companions (chemocompanions.org), a nonprofit organization dedicated to bringing “comfort, conversation, laughter, and nourishing essentials to the chemo lounge.” With the mission to “make a positive impact on the lives of those undergoing cancer treatments by offering friendship and emotional support,” Chemo Companions matches patients in need of companionship with trained volunteers who offer their time and support during chemotherapy.
Three years since founding the organization, Alyssa continues to be inspired by the patients she meets and the depth of the connections that are made through the program. “I am humbled by the grace, dignity, and peace each of these patients embodies,” Alyssa says. “I have made lifelong friends.”

Chemo Buddies
Jill Kincaid, of Evansville, Indiana, was inspired by the transformative impact that friendship and simple hospitality can have on patients undergoing chemotherapy. After accompanying her sister, Karen, to chemotherapy while she was being treated for breast cancer, Jill saw firsthand the difference that could be made by reaching out and offering basic kindness and a bit of TLC to patients who were facing chemo alone.
Jill and Karen agreed that something needed to be done to ensure that all patients were offered these basic kindnesses. Together the sisters presented a formal proposal to the treatment center where Karen was receiving care (Oncology Hematology Associates [OHA] in Newburgh, Indiana) to allow volunteers to be present in the infusion center to provide companionship and practical support to patients, as Karen wrote at the time, “because no one should have to go through chemo alone.”
In February 2012, six months after Karen passed away, the program that the sisters dreamed of—Chemo Buddies (mychemobuddies.org)—was adopted by OHA. Since that time Jill has worked tirelessly to see her sister’s spirit live on through the organization’s commitment to bringing joy and comfort to patients. Jill spends five days a week in the infusion center at OHA, along with a dedicated group of volunteers who serve three-hour shifts, to provide general support (bringing blankets, snacks, or entertainment to patients), establish relationships, and connect with patients who are otherwise alone.
For Jill, the goal is simple: be a friend. “I tell my volunteers to act as if that person in the recliner is sitting in their living room—to treat them with the same hospitality as you would a visitor in your home. Above all, don’t see them as patients but as people. Chemo is a long day, and having a friend to sit and talk with is a major stress reliever. If patients are sharing conversation with you about something in their lives, they aren’t sitting there focusing on the cancer or their fears.”

Tigerlily Foundation Chemotherapy Buddy Program
When Maimah Karmo was diagnosed with breast cancer in 2006 at age 32, she quickly realized that she faced many issues related to the diagnosis that are unique to young women with cancer. “Young women diagnosed with breast cancer often do not expect this diagnosis at such a young age,” she says. “There is a lack of support for this demographic. They are often younger than other women undergoing treatment, have young children, and face issues with fertility, work/life balance, relationships, and just an overall lack of peer interaction.”
Many young women also find themselves facing chemotherapy alone. Friends may be too busy with their own lives, family may live far away, and spouses or partners may need to care for children or maintain professional responsibilities instead of accompanying the patient to treatment.
At the conclusion of her second round of treatment, Maimah founded the Tigerlily Foundation (tigerlilyfoundation.org) to help address the many needs of young women (ages 15 to 40) diagnosed with breast cancer. Creating a program to match patients with “buddies” who could accompany them to treatment and help provide support was a priority. In 2007 the Chemotherapy Buddy Program was launched. Young women who contact the organization can request a buddy by filling out an online questionnaire, which includes specific information about diagnosis and staging; they are then matched with a volunteer who has had a similar experience. “The program provides the patient with the opportunity to connect with someone who is going through or has gone through something similar, which offers important psychosocial relief,” Maimah says.
The Tigerlily Foundation Chemotherapy Buddy Program has matched more than 200 young women since it was founded; and, like all Tigerlily programs, it is available to women in all 50 states. The program is managed by Latina Starling, a survivor who began working with the foundation as a volunteer and was later herself diagnosed with breast cancer. “I personally became her buddy after the diagnosis,” Maimah says, “and in the three years since she completed treatment, she has continued to give her time tirelessly.” Maimah hopes that the buddy program will continue to benefit women across the country. “Nobody should have to face breast cancer without the support of someone else,” she says.
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A caregiver's advice: How to help a dying patient's family

By Cancerwise Blogger on April 18, 2013 8:15 AM | Comments (0)
hands CW how to helop.JPGBy LeAnne Gibbs

My husband, Francis, has stage IV colon cancer. Since his diagnosis, many people have asked how they can help.

Last week I shared advice on what to say and how to support a cancer patient and his or her family.

Here are a few more things we've found beneficial. 

I'm still me even though the cancer will take me/my spouse. Please don't let it take you from me/us.
We've needed time and space to deal with the bad news about Francis's cancer together as a couple and a family. 
I've asked for this on my personal blog and sometimes silence phones and unplug laptops.

We still feel a great need to pull the plug and pretend to be hermits now that we're home and reconnecting with friends. 
After all, Francis still has some recovery from the surgery alone, and the side effects of late stage colon cancer are new each day.
Francis has frequently commented about the pain of fading away and things related to it.  
I can identify only through the collective "we" and the current "I" that I know are fading away as well. 
Watching your spouse and the "we/I" I love fade away is painful enough, but then the things that make us who we are as individuals and who we are as a couple are also being lost. 
To say that we need to hear from and visit with family and friends is an understatement even in the most hermitic of moments. It keeps us sane. 
It allows us to focus on the good in life, provides us a break from each other -- yes, I still can get on Francis's nerves and he'll admit he can be a difficult patient -- and gives us the luxury of a laugh when we desperately need some comic relief.
"Let me know when I can take the kids/watch the kids/come play with the kids ..." 
This is the hardest for us. We probably worry more about how this is impacting them now and how it will affect the course of their lives in the future. 
It's what keeps me up at night and makes me most frightened about a future without their father.
We were fortunate to have a brief meeting with a psychologist at MD Anderson where we could discuss the children and how to do right by them. 
She encouraged us to keep caregivers to a very small number (three or four) and keep to their current routines as much as possible. 
These things help both our son and daughter feel loved and secure in a world that will be full of change.
I'm inclined to be extremely protective. It isn't because I don't want people to watch them or play with them, but because I want to protect them.
In all of my protectiveness, I also realize that what keeps Francis and me anchored to joy and hope for the future is the sound of Couper's little bare feet running across the hardwood floors between his room and ours, and the wrinkled-nose, five-toothed smile of Riley when she wakes from her naps or turns around and catches us watching her. 
Having them with us protects Francis and me probably as much as we protect them.

LeAnne and Francis Gibbs live with their two young children in Tallahassee, Florida. They share their journey with Francis's aggressive form of stage IV colon cancer on their blog, Our "Semi" Colon Life.
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Anxiety and cancer: My fear of upcoming scans

By Cancerwise Blogger on March 18, 2013 8:08 AM | Comments (0)
scanxiety by linda ryan.JPGBy Linda Ryan

As I get ready to go to Houston for a follow-up appointment, I'm havingscanxiety. It's that feeling of anxiety and worry that comes with doctor appointments.

For me, anxiety strikes when I'm about to have scans to measure or confirm my cancer is gone. That's when I start thinking about recurrence and how I could battle cancer again.   

Anxiety over cancer recurrence
Anxiety about my cancer returning isn't always at the front of my mind unless I'm headed for a scan or doctor's appointment. 

But I leave for Houston this coming Wednesday, so those thoughts are currently on my mind.

The feelings aren't there because I'm feeling any differently or have any concerns. They are there simply because going to the doctor brings my cancer close to the surface again. 

It's a reminder that I had cancer and that I fought hard, but it's also a stronger reminder that cancer is a part of my life.
Questions as I approach the one-year mark
I think about cancer a lot. 

Often, people say "don't say that" if I talk about cancer coming back. Nobody knows if it will or won't come back. I need to be prepared for it to come back in hopes that it never does.    

I'm close to my one-year anniversary of being cancer-free. It has been very similar to when a loved one passes away in the sense that the year has been measured by "last year I was sick for that" or "last year I wasn't sick for that event."

Now that I am approaching my one-year anniversary, I wonder if I will continue to measure time this way.

My friends and family know that I don't dwell on what I missed or how I felt during cancer. Sometimes I think it's harder to look back at those times than it was to go through them.   

Reminders of my never-ending fight
I recently went away with my friends for our annual trip. One day we rent bikes and go for a long ride. Part of our route goes over a long bridge. 

Last year, I had to walk my bike up the bridge. This year, I made it without walking, but I kept thinking about last year, which took place a week after chemo.

As I rode over the bridge this year, I marveled at how I'd been able to ride more than five miles after chemo. I couldn't stop thinking, "How did I do that?"

Reminders of that time bring the reality of my never-ending fight with cancer into focus.   

A waiting room bond
Sitting in the waiting room before a scan and a chemo appointment,  I met a nice woman who was there for a follow-up scan. She had fairly significant scanxiety. Like me, she was a young mother. 

We talked for quite a while and even chatted in the back after getting on our scrubs. I think it helped us both keep calm. 

Her scan was negative. 

She and I are now Facebook friends, and I enjoy keeping up with her life. Her life. Not her illness, her life.  

My new reason to be anxious
This time, I'm also anxious because I'll be travelling to Houston alone for the first time.  My usual travel companion, Barbara, will not be going with me this time.  

I will miss my friend.  I will miss our traditions and the places we normally go. I will miss the laughs and the rhythm of the trip that have become so familiar and comforting.

Linda Ryan thought she had checked cancer off her list. Having just run her first marathon, it was hard to imagine that her cervical cancer had returned after seven years. Cancer chose the wrong woman. She was ready to battle cancer for the third time with health, laughter and friendship. Follow Linda Ryan at MeStrong.net

Read more posts by Linda Ryan
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Survived Cancer? Now Look out for Cardiovascular Risks

Apr. 16, 2013 — Many people survive their cancers, but end up dying of cardiovascular disease (CVD). New research from Wake Forest Baptist Medical Center finds that CVD risk factors may be overlooked during survivorship care.
Kathryn E. Weaver, Ph.D., assistant professor of social sciences and health policy at Wake Forest Baptist, and colleagues surveyed survivors of breast, prostate, colorectal and gynecologic cancers in search of answers.
"Increasingly, we are concerned about cardiovascular health in long-term cancer survivors, and we believe this is a high-risk group that needs close attention," lead author Weaver said. "As part of good survivorship health, it's going to be increasingly important for health care providers to assess and address cardiovascular risk in cancer survivors."
For example, Weaver said there is data showing that early stage breast cancer patients are more likely to die of CVD than of breast cancer. There are many reasons why cancer survivors have higher CVD risks, she said, most typically because cancer shares many of the same risk factors such as smoking, low physical activity and obesity. Also, some of the treatments cancer patients undergo may put them at higher risk, she said.
The survey participants were recruited from two cancer registries. A total of 1,582 survivors who were four to 14 years beyond diagnosis were asked in a mail survey to assess CVD risk factors, including smoking, body mass index, physical inactivity, hypertension and diabetes. The researchers also asked the participants whether they had engaged in discussions with health care providers about making lifestyle changes through diet, exercise and quitting smoking.
With the exception of current smoking, CVD risk factors were more common among survivors than the general adult population. Of survivors, 62 percent were overweight or obese, 55 percent reported hypertension, 20.7 percent reported diabetes, 18.1 percent were inactive, and 5.1 percent were current smokers. Nearly a third of survivors with CVD risk factors did not report health-promotion discussions with their medical teams.
Weaver said they also saw significant differences for Hispanic and African-American survivors when compared to white survivors that are similar to those observed in adults without cancer. These two ethnic groups had a greater number of CVD risk factors, particularly obesity and diabetes.
"What we found is that cancer survivors do have more cardiovascular risk factors than the general adult population, and they often do not report talking with their health care provider about ways to reduce their risk through lifestyle changes like exercising and losing weight," Weaver said.
This study highlights the need for more awareness by cancer survivors and their doctors, Weaver said. "Our message is that cardiovascular disease risk should be assessed as part of a comprehensive survivorship care plan because of the risk for both poor heart disease and cancer outcomes," she said. "Cancer providers don't have to be solely responsible for talking to survivors about lifestyle factors, but, if it's noted as part of the wellness goals for that survivor, then risk factors are more likely to be addressed by the survivors' treatment team, including primary care."
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