I think medicine embraced pain assessment and pain treatment in a way that overcompensated for our ineptitude at mitigating suffering.
Tambre Leighn's insight:
Personalizing pain and putting the patient before the disease...wonderful article for survivors to read for insights into ways to be a strong self-advocate and design their doctor/patient relationship.
Cognitive issues related to cancer treatment might finally have some answers.
Tambre Leighn's insight:
Some great tips and insights into chemobrain. We must, in cancer survivorship, begin to approach side effects of treatment with the same kind of perspective as cardiac care...that rehabilitation is possible.
"(BPT) - When Ginny Knackmuhs beat early-stage breast cancer and had routine checkups during the years that followed, she thought the disease was behind her. But in 2009, she was shocked to receive another diagnosis of breast cancer. This time it was metastatic, the most advanced kind.
“I went through a lot of the normal stages that people experience,” says Knackmuhs. “You're angry. You're guilty. You're trying to figure out why this happened to you. I was in denial a long time.” During that time, Knackmuhs had difficulty finding resources that addressed advanced breast cancer.
To raise awareness of metastatic breast cancer (MBC) and support patients like Knackmuhs, MedImmune Specialty Care Division of AstraZeneca has launched the My+Story online resource center at www.mymbcstory.com, which houses tools and information tailored for women living with advanced breast cancer. The site also contains links to patient support groups that have specific programs for patients with MBC: Living Beyond Breast Cancer (LBBC) and Metastatic Breast Cancer Network (MBCN).
Exercise has both mental and physical benefits. As always, check with your doctor before doing so. It can seem counter-intuitive to get up and do physical activity when suffering from fatigue, but the right amount and right kind of physical activity can actually boost your energy. Start out with reasonable efforts and increase over time, paying attention to how you feel during and after your activity. Get an exercise buddy or set up other accountability to get started. Keeping a journal can help track improvements over time. For more coaching tips for survivorship, check out my blog on wellbeyondordinary.com and use search terms to find what you're looking for!
"Gary Edick knows the isolation of being the anomaly.
In the six years that he has battled breast cancer, he has never met another man with the disease. He tried reaching out to a support group but didn’t feel welcomed by the women. He’s not a fan of pink Octobers.
However, he is making a one-man stand. Edick, who is dying, wanted to go public with his story so other men would know that breast cancer strikes regular guys and to make them aware of the early symptoms he ignored.
“I don’t want more men to die,” said Edick, a former fighter pilot, Cleveland Browns fan and avid golfer who lives on the course at Temple Hills in Williamson County with his wife.
He does not know exactly how long he ignored the flaky skin that had caked around a nipple — maybe a year — before it started to invert. It didn’t hurt. It didn’t itch. His physician noticed the inverted nipple during a checkup. Follow-up tests confirmed Edick was one of the less than 1 percent — the proportion of breast cancer victims who are men.
We must put an end to stigmatizing rare cancers such as male breast cancer, metastatic disease and lung cancer. It is often through irreverance such as FeelMyBalls.org and TheBoys.org that barriers are broken along with the silence. Stigma impacts funding for treatment improvements and often impacts awareness regarding prevention.
Gary Edick's efforts to share his story are valient and courageous. Pass it on to the men in your life. This former fighter pilot is an incredible role model and is on a mission, this time, to save lives. Please share!
A super cocktail of six natural compounds found in turmeric, vegetables, fruits and plant roots can kill breast cancer cells without harming normal cells, found a study.
The study led by Madhwa Raj, Research Professor in Obstetrics and Gynecology at Louisiana State University Health Sciences Center, found that the combo killed 100 per cent of sample breast cancer cells without toxic side effects on normal cells. “One of the primary causes of both the recurrence of breast cancer and deaths is a small group of cancer stem cells that evade therapy,” said Raj."
Researchers involved in epidemiological studies looking at the potential contributions to breast cancer risk have not been able to provided conclusive evidence…
Tambre Leighn's insight:
"...new findings show that eating a high-fat diet beginning at puberty does speed up the development of breast cancer and may actually increase the risk of cancer similar to a type often found in younger adult women."
Parents...get educated about the implications of a high-fat diet. What if changing what's on your dinner table meant possibly reducing the potential for breast cancer for your child?
"Options International presents Advocacy in Action, bringing together the influential leaders of the cancer advocacy community to address core issues that impact metastatic breast cancer patients today.
Joining Selma Schimmel as co-moderators are Elyse Spatz Caplan, Director of Programs & Partnerships at Living Beyond Breast Cancer, Shirley Mertz, Board Member, Metastatic Breast Cancer Network, Maria Wetzel, a research advocate who works with the National Breast Cancer Coalition and Musa Mayer, an advanced breast cancer advocate who runs the website, AdvancedBC.org."
Selma Schimmel is a leader in the cancer community tackling the topic of the unique needs of patients with metastatic breast cancer. Every doctor/patient communication experience is important but for those who must "co-exist," as described by Selma, with metastatic disease, requires a different approach.
Great video on the range of doctor/patient relationships patients may want and challenges such as geographical location, finances and more.
"Yesterday, an investigation by Reuters revealed that Wellpoint routinely drops coverage of women with breast cancer. According to the report, Wellpoint used a computer algorithm that automatically targeted every policy holder recently diagnosed with breast cancer. The software triggered a fraud investigation and the company would then search for any pretext—say a late payment or a reportedly missing form—to drop them.
Unfortunately this type of behavior on the part of an insurer isn’t unusual. Each year tens of thousands of Americans lose their health insurance after being diagnosed with an expensive or life-threatening illness. The practice, known as “recission,” has been well documented by government regulators for years. Last year, a congressional committee said that Wellpoint was one of the worst offenders.
But what’s particularly troubling in this case is that Wellpoint is run by woman. Angela Braly has been its chief executive for the last five years and had to have known that this was going on under her watch. And it is puzzling that the company would target breast cancer patients when Braly has championed women’s health issues and has received accolades for improving the care and treatment of women with breast cancer."
The world record for the high jump remained unbroken for years. Do you know what had to happen to break it? Somebody decided to try jumping backwards…Today we are going to look at how healthcare ...
Tambre Leighn's insight:
A reminder that sometimes simplification is the stuff of the potentially biggest breakthroughs. Paul Roemer hits a home run with this post. The question now is how to get this single medical bill concept rolling...!
This is a great topic for health bloggers/advocates to start educating their followers about. The patient experience doesn't end at discharge so let's start turning up the heat on patients rating and including billing methods as part of their experience. It's one of the strongest ROI's that seems to propel change in healthcare currently. I'm challenging other bloggers to turn up the volume on this post by sharing it as much as possible. Let's get the wheels turning on this long overdue solution.
While people are not cars, there is no way we would drop a vehicle off for repair without a clear, written estimate and the right to authorize additional costs or work without prior knowledge (and there are quite a few laws to protect us about being charged without authorizing work/costs)...why do we accept this from healthcare?
We project our own fear and frailty onto someone dealing with the consequences of disease and even death.
Tambre Leighn's insight:
"[C]orrupt contribution" - this is a perfect phrase by author James Salwitz, MD to describe the inappropriate thoughts people sometimes share with those facing major illness and grief. Being aware that your words can have an impact and being responsible for the energy you are bringing to a conversation can help ensure you offer support and compassion.
Often people seem to be searching for common ground from which to speak from and end up telling the story of when someone else suffered through a similar situation. Instead, coming from the common ground of I'm here to help in any way I can....what do you need? Ask, don't tell...and don't 'kick the widow' when she's down.
Before your words end up on a list of ten things NOT to say,
"One year of exercise can ensure steady maintenance of bone density to help prevent fractures. To build and maintain muscle strength, it is best for older breast cancer survivors to follow an ongoing exercise program of resistance and impact training. This advice comes from Jessica Dobek of the Oregon Health and Science University, lead author of a study published in Springer's Journal of Cancer Survivorship.
Dobek is part of a research team, headed by Dr. Kerri Winters-Stone, that found that the bone benefit from one year of such training could be maintained, even with less exercise, up to a year later, which could help prevent bone fractures in the long run.
Older women form the largest group of breast cancer survivors. They face many challenges in maintaining a healthy body composition and optimal physical functioning due to the combined effects of cancer treatment, aging and reduced physical activity. Cancer treatment is associated with loss of bone density, loss of lean body mass and increases in body fat. The associated changes in body composition place older breast cancer survivors at higher risk of obesity-related disease, breast cancer recurrence, frailty and fractures."
Peer reviewed article authored by (Nahata L, Yu RN, Dumont IP, Manley PE, Cohen LE). Read article or submit your manuscript for publishing.
Tambre Leighn's insight:
Study shows fertility counseling documented in only 46% of subjects yet greater than 70% want children and were open to discussions about it. This is not sacceptable - when patients are not given clear information and access to fertility preservation.
Simple Coach Centric skills can help oncology providers ensure their patients don't miss life changing information while facing the stress of diagnosis and treatment.
Emotions. It’s not something that comes to mind when you think of someone living with diabetes. But believe it or not, there are many profound feelings and emotions involved with diabetes management.
So often, diabetes is about a number. The number that corresponds to a fingerstick. The number you get every three months at the endocrinologist’s office. The number of times you’ve checked your blood sugar. The number of times you gave yourself a bolus of insulin. The number of carbohydrates in that snack you just had.
It’s exhausting. Trying to function as your own pancreas is flat out difficult. And because of both the stigma surrounding this disease and the nature ofHIPPA laws, it can be downright lonely sometimes. Even when you’ve got the most supportive family and friends and a terrific team of doctors, it feels like a battle that can only be fought and understood by you.
While others can see how sweaty and shaky low blood sugar makes you, they can’t feel the haze that comes along with it. While others can observe your reaction to a blood sugar check, they don’t feel the guiltfrom forgetting to bolus, or not bolusing enough, or bolusing too much. There is opportunity for much doubt and fear, and it can be easy to fall prey to.
I have a super weapon for dealing with some of the negative emotions I feel about diabetes. It’s called the Diabetic Online Community (DOC).
I discovered the DOC through Twitter, and quite accidentally. Now, I interact with other People with Diabetes all over the world across many social media platforms including, but not limited to, Facebook, Instagram, YouTube and Vine. I’ve connected with people diagnosed in early adulthood, like myself. I’ve talked to people who use an insulin pump and Continuous Glucose Monitor just like me. I’ve talked to people who are disappointed sometimes in all those numbers, just like me.
I’ve met many not like me as well. People who manage their diabetes with injections. People living withType 2 diabetes. People who are parents, caring for their children who live with diabetes. I’ve met people who challenged my thoughts, feelings and knowledge of this disease. People who cheered with me when my hard work paid off and others who reassured me when I was having a bad day.
I urge you to read some of the blogs written by some of the most popular DOC members. I’ve linked to some in this post already (Kerry, Lorraine and Alexis) but there are so many more diabetes bloggers out there. Some of my other favorites are George, Scott, Kim, Ginger, another Scott and this collection of Diabetes Bloggers at Diabetes Mine.
I’ve gained much since I found the DOC: A wealth of a knowledge I can turn to when I encounter a new situation. A camaraderie that I can depend on to rally with me. A kinship with people who just “get it.” I’ve even found a few real life friendships with people who live in the area. I don’t know where my diabetes management would be without the DOC. But I hope I never have to find out
Chronic illnesses such as diabetes and cardiac care have done and continue to do a great job in approaching rehabilitation. Here's another example of how developing a community of support can make a difference in quality of life. The more we can take models that work in other chronic illnesses and apply them in survivorship the faster we can get survivorship programs rolled out and in a way that works for survivors...not just what others THINK will work.
"If one has been living under a rock for the past 30 years and is not aware of breast cancer and mammograms, he should raise his hand.
Let's face it: Continuing to spend donated money on awareness of breast cancer is a waste. The pink ribbon has succeeded in making us all aware. It now has become a marketing tool. Let's move on.
We need a real cure. All stages of breast cancer are survivable except metastatic stage 4. That's where death results. Early detection is a good thing, but what many probably don't know is that 25 percent to 30 percent of all early-detected breast cancer recurs and ends up in stage 4 metastatic breast cancer and death. It can happen any time even up to 25 years later. That statistic has not changed in 30 years.
Very little money is spent on metastatic stage 4 breast cancer. For some reason this fact has been kept secret. Early detection is not a cure. METAvivor is a group that is trying to change that statistic. It gives its donated money only to metastatic stage 4 breast-cancer research."
It's not always "pretty in pink"..."25 percent to 30 percent of all early-detected breast cancer recurs and ends up in stage 4 metastatic breast cancer and death." It is not about creating fear, but, instead finally speaking to putting greater emphasis on research to improve quality of life for metastatic survivors and treatments that get us to a cure.
Lift your eyes from your tired misconceptions, your white washed guidelines, and your market-driven economies. And look at me.
Tambre Leighn's insight:
Advocates give voice to the what must change. Thankfully, some enlightened healthcare providers have moved well beyond the checklist mentality...but we have more work to do. Survivors must get educated on the standard of care they deserve, including insisting on survivorship care plans that address not only side effects and risks but also quality of life concerns.
Kudos to author Jordan Grumet, MD/patient for giving voice to those who may not be sure how to raise their own.
just a quick update before my gynecological oncologist slices and dices me on thursday. i saw the scan with my ovary. it is HUGE. it’s almost bigger than my liver and stomach. explains why my pants...
Tambre Leighn's insight:
THIS is what strength and courage look like...Annie Goodman, you are one special woman! You are so clear about the choices you are making, weighing the options and choosing what you feel is best for you. No decision involving cancer is easy and sharing it publicly is an incredible service to those facing similar situations. Bless you for how you continue to contribute to the YA cancer community with grace and as an amazing inspiration.
Wonderful to see the call for cooperation the late Laura Ziskin, one of the founder's of Stand Up 2 Cancer gave early voice to. Her vision for cooperation in research was inspired by the model of feature film production where experts and leaders in different crafts and departments work together to create the magic of movies.
Streamlining the research process and focusing on solutions and cooperation is a truly inspired approach.