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BY ELIZABETH WHITTINGTON | APRIL 18, 2011
In the Winter issue, Kathy LaTour told the story of Sam LaMonte and Eileen Gould, patients who survived their cancer in part due to the radiation they received ("Cost of Living"). And while it potentially helped save their lives, it also carried some long-term side effects that they are both still struggling with.
Since that article published, CURE and Kathy (and even Dr. LaMonte and Dr. Stubblefield) have received letters, emails and phone calls from readers who wanted to share their stories and get more information. Many patients said the article helped them to understand why they were experiencing certain side effects, effects that for many survivors, were not fully explained during treatment.
Here are a few of the responses we've received:
I read with interest your article, "The Cost of Living," in your winter issue. I can attest to the complications of radiation. [...]Thank you so much for bringing the reality of long-term radiation effects to light. Thank you also for a wonderful supportive and enlightening magazine. --Amy
Thank you so much for the article about the late effects of radiation therapy for cancer. I received 35 treatments of high-dose radiation 20 years ago for breast cancer and have not had a good quality of life since. I have suffered for years with the "constellation of disorders" mentioned, to the point that I can no longer drive a car and must use a wheelchair most of the time. During these years, the medical profession did not acknowledge or validate that the source of my conditions was from the radiation. Thank you for bringing this to the attention of everyone today. It truly is "about time" that those of us who have had poor quality of life since high-dose radiation are now validated. --Elaine
In addition to the accolades the piece has garnered from readers and medical professionals, it was also recently named a top winner in this year's Awards for Excellence in Health Care Journalism. Kathy accepted her award during the Association of Health Care Journalists' annual meeting this past weekend. I hope you will help me in congratulating her on bringing such an important topic to the forefront for patients and survivors, and also to the attention of mainstream media.
To continue the discussion, we have invited Sam LaMonte to join us in an online discussion on the long-term side effects of radiation via either Facebook chat or Twitter. I do hope you'll join us in exploring this topic further. Stay tuned for details!
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BY ELIZABETH WHITTINGTON | JULY 29, 2010
I came across a recent blog on how the after-treatment phase (or re-entry if you want to compare it with a NASA moon landing) can actually be more complicated and fraught with more emotional issues than the actual treatment phase.
"Broken," a post from ChemoBabe, detailed what so many other survivors have felt once treatment ends.
"Maybe it's self-pity talking, but I feel like everybody is sick of my cancer and is ready for me to move on," she writes. "When people see me these days, they say two things. First: 'Wow! Look at all your hair! You look great.' And, 'How are you feeling? Are you getting back to normal?'"
After nine months, she says she didn't just put her life on hold during that time, she's changed and things aren't going to go back to the way they were.
The comments that appeared almost as soon as the blog was posted last night speak to the magnitude of the issue. Unfortunately, it's an issue that doesn't get mentioned a lot to newly congratulated survivors. They celebrate their last treatment and end of cancer and are expected to go along their merry way. When they get home, they discover that everything is not fine and are left struggling with these emotions--often at a time when the support network that rallied during diagnosis and treatment have packed up its bags and left.
We covered the psychosocial issues of the after-treatment phase back in 2008 with "Back to Normal." It may be time to revisit the topic again since it's such an important subject for new survivors.
Some things to remember:
1. The feelings of loneliness, sadness, and fear are normal and common among new survivors, but it doesn't make it any less serious. Just know that there are other people who have dealt with these emotions too and they would love to help you through this time in your cancer journey.
2. Just because you're no longer seeing your oncology team for treatment, it doesn't mean you can't use the social services they offered. Talk to your nurse who may be able to recommend resources, people to talk with, and advice. Survivorship clinics, which are popping up in several cancer centers across the country, may also have support programs for those out of treatment.
3. And this is for friends and family: When you're diagnosed and going through treatment, a patient may see a support network pouring out of the woodwork--friends, colleagues, parents of your kids' friends, your boss's sister, your medical team--all people who want to be there for the patient and help him or her get through treatment. Unfortunately, once the cake and balloons are gone after that final treatment, that support group may disappear when the patient, now a survivor, needs it the most. Don't think that everything is going to go back to normal once treatment ends. Continue to let them know that you're there for them.
How did you deal with the re-entry phase? Were you prepared for it emotionally? And if you have a few minutes, go to ChemoBabe's blog and share your advice on getting through this phase in her cancer journey. I think she would appreciate it right now.
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BY ELIZABETH WHITTINGTON | JUNE 24, 2010
While several small studies have suggested the benefits of yoga, ASCO's annual meeting highlighted the largest and most definitive study to date on the benefits of the therapy.
Researchers randomized more than 400 cancer survivors who had significant sleep issues to either simple monitoring or 75-minute yoga sessions twice a week for one month. The results, said lead author Karen Mustian, of the University of Rochester Cancer Center in New York, were remarkable.
The benefits of the intervention were seen across the board, reducing several common side effects reported by cancer survivors. Individuals in the yoga group reported less fatigue and daytime sleepiness, decreased use of sleep medication, and increased quality of sleep and quality of life.
"If you ask a cancer patient who is suffering with sleep problems...who is trying to work, raise children, take care of elderly parents, or live their life in a healthy manner and this is interfering with the ability to live their life...I think these findings are striking," she says. "The fact that we can reduce the amount of fatigue by almost half--42 percent--is huge as well because it's probably the most prevalent and troubling side effect reported by the greatest number of cancer patients across all diagnoses."
You can read the full article on the study here.
The fact the study was so prominent at ASCO, a meeting of oncologists, highlights the possibility that this may be something survivors may be hearing from their doctor soon. "This is a readily applicable approach that improves quality of life and reduces medicine intake in cancer survivors. This is a real positive," said ASCO president, Douglas W. Blayney, MD, at a press conference in May. "This emphasizes the increasing importance of ameliorating complications of therapy in long-term cancer survivors. There are literally millions of patients to whom this might be applicable in the United States."
What's so exciting about this study is that researchers really had the real-world patient in mind. Mustian noted they chose types of yoga that would be most readily available to people in as many communities as possible in the U.S. The two types of yoga--gentle Hatha yoga and restorative yoga--are also gentle on the body and focuses on various poses, breathing exercises, and mindfulness.
"Those gentle Hatha yoga poses are almost in every type of yoga," Mustian says. "By using that, we felt people would have a good chance of finding instructors after the study was done to teach them these poses."
While restorative yoga is less widespread, it's gaining in popularity. For most of the poses, pillows, blocks, towels, and other props are used to support the body. "You're in different positions, but you're fully supported by blankets and bolsters, and your eyes can be covered with eyepads. The idea is to completely let your body be supported by something else," Mustian says. "It focuses a lot on the restoration of balance and really paying attention to your body."
She recommends finding a yoga instructor certified by the Yoga Alliance, and if they have prior experience working with cancer patients and survivors, that's an added plus. She also stressed that these outcomes may not extend to other types of yoga, such as yoga in a heated room or vigorous yoga that raises the heart rate.
You can read more about the different types of yoga at Yoga Journal.
When CURE posted the results on our Facebook page, we discovered that many patients and survivors have already tried the integrative therapy. Here's what a few of our Facebook friends had to say:
"Yoga has kept me moving during a year of surgery chemotherapy and rads. I have good mobility after a partial mastectomy. Pain persists but the gentle yoga approach has allowed me to move as I am able. I see the difference measured in months as I continue to build strength and regain flexibility. It also is very calming to an agitated mind. I suggest a well trained iyengar teacher and not just someone at a gym."--Wendy
"I practice yoga when my body allows me to. As anyone going through chemo knows ... some days it just isn't going to happen. For me, I have intense bone pain following each treatment ... as that begins to subside, I find yoga to be a wonderful retreat ... stretching my legs in various poses and my arms absolutely LOVE being in plank ... feeling strong after periods of such weakness. I find yoga also helps me settle into my body and to notice what is good in both body and mind. I can't practice the full practice that I did before chemo but I find any little bit that I CAN do is wonderful. Sometimes it's hard to be friends with a body that hurts you so much but yoga is a constant reminder that my body is indeed my friend."--Michelle
Do you use yoga either during or after cancer? Did you notice a difference in your sleep or fatigue or general quality of life?
We'd love to hear your personal story of how yoga has affected your cancer journey and what you think of the study!
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BY ELIZABETH WHITTINGTON | MAY 31, 2009
The attention paid to the psychosocial effects of cancer by the medical community can mostly be credited to cancer survivors. One of the most common examples is the recognition of "chemobrain," a condition that was first raised by breast cancer survivors describing loss of memory, concentration, and other mental functions after treatment.
An interesting study presented on Saturday during the annual meeting of the American Society of Medical Oncology compared memory and thinking of breast cancer survivors who were taking Femara (letrozole), an aromatase inhibitor, with women taking tamoxifen. The BIG 1-98 Cognitive Function Sub-Study found that after five years of hormone therapy, postmenopausal women currently taking Femara had better overall cognitive function--or what scientists call chemobrain--than those currently taking tamoxifen. Data on whether the effect persists after treatment ends is expected next year.
In a separate ASCO session, which discussed the physical, psychological, and cognitive challenges of long-term cancer survivors, Janette Vardy, MD, PhD, from the Sydney Cancer Center in Australia, highlighted an important issue when talking about chemobrain--there is no consensus on its definition.
Vardy outlined several potential causes of chemobrain, including possible neurotoxicity of cancer or its treatment, cytokines, abrupt changes in hormone levels due to surgery or hormone therapy, genetic predispositions, and other causes. Vardy also mentioned anxiety, depression, and fatigue--common symptoms in cancer survivors--could also affect cognition. Paying attention to these symptoms and treating them could improve a patient's chemobrain.
A recent taskforce dedicated to cognition problems in cancer survivors has been formed to address many of these issues and more. The International Cognition and Cancer Taskforce (www.icctf.com) will hold a symposium next March in New York. It will be interesting to learn what research comes out of that meeting. I'll have to write myself a note so as not to forget it.
For more information on chemobrain, read What Patients Need to Know About Chemobrain from the Summer 2008 issue of CURE.
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BY ELIZABETH WHITTINGTON | MAY 29, 2009
There are few industries in the U.S. that aren't feeling the crunch of the sour economic times these days, and few people are 100 percent confident in their job stability.
So when a study published in the Journal of the American Medical Association showed that cancer survivors had a higher risk of unemployment than persons without a history of cancer, it made me wonder... has the risk changed since the current recession, which experts say started in December 2007? The study was based on about 36 studies conducted around the world between 1966 and June 2008.
The study found that survivors were 1.37 times more likely to be unemployed than healthy people (33.8 percent compared with 15.2 percent), and the risk was higher in survivors of breast, gastrointestinal, and gynecological cancers than compared with other cancers, such as prostate, testicular, or hematological cancers, which did not appear to have a higher unemployment risk than people without a cancer diagnosis.
In conclusion, authors offered a suggestion that "development of interventions involving clinicians and other professional to enhance participation in the work life of cancer survivors is needed."
After talking to a few legal experts for Unemployment Hits Cancer Survivors Harder, the news wasn't comforting. Apparently, discrimination is hard to prove if a survivor is one of many who are caught in rounds of layoffs. But knowing your rights, including disability rights and anti-discrimination laws, should help. If your employer doesn't know why you're fatigued all the time or you don't ask for a workplace accommodation for coming in late on treatment days, you may not be covered under these protections. In those situations, what you don't tell your boss can hurt you.
And aside from the legal aspect--any layoff is stressful, but for a person with a history of cancer, there are issues that may weigh heavier for survivors, such as health care benefits and paying off lingering medical bills. Cancer and Careers, a website for working women with cancer, has great resources for both men and women, including job-searching advice. The Cancer Legal Defense Fund has tons of information, webinars, and a toll-free number for those with questions about discrimination, disability insurance, employment rights, and more.
It was nice to learn that discrimination has decreased over the decades, and accommodations, legal rights, and understanding for cancer survivors has increased, but I'm sure everyone, especially those with a past cancer diagnosis, has that nagging thought in the back of their head of "What if..."--or worse, "What now?"
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