Oh, if only someone would study the amount of dollars put into studies to discover some of the most logical things. Why wouldn't any woman benefit from having a knowledgable navigator walk her through what is most likely the most terrifying time in her life? Why wouldn't women in high risk populations do better if they have the support and insights of a navigator? Why aren't those research dollars invested, instead, in supplying the actual services needed instead of studying the need?
Don't get me wrong. I am not opposed to research studies. Data is important. There are many, many things that do need to be quantified, understood and examined. And maybe it is because I know what a difference coaching makes to survivors - having someone help them work past the confusion, fear and overwhelm so they can create strategies, have clarity and be a strong self-advocate - that to study what is so obvious seems an added step and waste of resources that are getting harder and harder to come by that I get a little frustrated.
It is wonderful we now know, based on data, that navigators make this kind of difference. Now...where is the intervention that provides access for all high-risk women to a navigator? Implementation of a plan that provides the identified resource should, in my opinion, be a contingent part of any study like this. Knowledge is all well and good but follow through and implementation is where we will make the difference for this population.
Breakthroughs like this are fantastic news...however, I would like to see just as much, if not more, emphasis on prevention. There are many lifestyle choices that studies show impact the immune system as well as studies that indicate many medical professionals are not comfortable dealing with obesity and other issues that lead to chronic illness. If people can experience greater quality of life and a much lower cost than going through chronic illness, we need to start giving medical professionals the training they need to communicate with their patients. For more information, go to www.iPECwellbeing.com
Cancer patients deserve to be educated - or choose to have a health advocate such as a loved one or caregiver on their behalf - and to share their personal values and priorities as part of the treatment decision process. That is where truly patient centered care begins. Without the information being communicated between patient and physician, there is no true full choice available and no real partnership in creating the course that will deliver what the patient wants.
A PBS Newshour segment discusses the late effects and potential secondary cancers that survivors of pediatric cancers face.
Tambre Leighn's insight:
"Narrowing" can potentially be yet another burden for cancer survivors seeking treatment. Insurers should not be able to dictate quality of care like this and survivors need access to the best care of their choice. Being forced into having access only to lowest cost care and making higher quality care out of network is not acceptable.
Sometimes it feels to survivors like cancer has the upper hand...especially when it impacts their ability to engage in life and doing things they love. Going through cancer for more than a decade can, understandably, take a toll. Noreen will be getting support and encouragement from her clearly dedicated and loving husband - which is amazing. However this is a perfect example of the difference coaching for survivors can make.
Cancer survivorship coaches work with their clients to be able to make this kind of decision in a way that they feel empowered vs. feeling like cancer took something away from them...they learn the power of choice in decisions vs. have tos or shoulds. While the outcome may not be different - the trip may need to be postponed or cancelled, often the coach can help the survivor identify the qualities of the experience the survivor was looking forward to and brainstorm a different way to experience those qualities without, for example, getting on a plane if that isn't something they can do right now.
When survivors learn that while they may not be able to change certain circumstances but they can change how they respond to them so that their response supports, not detracts from their quality of life they feel more empowered.
Chris Duffey and Katie Erbs report on ten powerful trends emerging in mobile health for patients, professionals and providers (How mobile became mighty in healthcare http://t.co/sbmbItm1UC)...
Tambre Leighn's insight:
Mobile is a great way to increase patient engagement...but it must be patient-driven...identifying the ways they want to use mobile health apps to improve their wellbeing and their healthcare experience.
"Results of a new study on mice and a phase 1 trial of humans suggest that prolonged cycles of fasting - for 2-4 days at a time - not only protect against toxic effects of chemotherapy, but also trigger stem cell regeneration of new immune cells and clearing out of old, damaged cells.
"The study, by researchers from the University of Southern California (USC) in Los Angeles, and published in the journalCell Stem Cell, is the first to show that a natural intervention can trigger regeneration of an organ or system through stem cells.
"The team believes the findings could benefit people with immune system damage, for example if they have received chemotherapy treatment for cancer. It could also benefit the elderly whose immune systems are weakened through aging, making them more susceptible to disease."
Intuitively this week, my body felt like it needed to fast. Intuitively, even thought I'd only planned a two day juice fast, it turned into four. With the right plan for fasting, and doctor's supervision as needed depending on your state of health or knowledge about how to fast correctly, it is highly doable.
I use a company that specializes in juicing and provides a whole kit of raw juices designed to give me different nutrients at different times of the day and it's all organic. I was never hungry and only had one afternoon dealing with a detox headache from going off caffeine. The rest of the time I was completely energized. Returning to food now, my body is craving raw vegetables and has no desire for caffeine or some of the other nutritional "slips" into foods that aren't healthy for me.
Amazing to see more natural paths to healing being embraced by the medical community. Medical interventions are sometimes very necessary and so I am grateful that we have them. It's not an either/or...it's an and - how can more "traditional" medical approaches and some natural approaches work together for best outcomes...that's an exciting place to be.
Austin, Texas (PRWEB) May 29, 2014 Nearly 14 million Americans are now living with and beyond a diagnosis of cancer. Major advances in cancer detection and treatment have resulted in longer survival. However, physical, financial, and emotional hardships often persist after diagnosis and treatment.
Tambre Leighn's insight:
Yes, yes, and yes! Incredible resource for oncology nurses, survivorship care coordinators, advocates and survivors who want to learn more about survivorship care plans.
"Breast cancer is a leading killer of women ages 30-55, and the rates of this disease are on the rise. Why?
A new study from the Silent Spring Institute lists 102 chemicals that may contribute to risk of developing the disease. Many of these chemicals are extremely common.
According to the researchers, many of the chemicals are linked to gasoline, vehicle and lawn equipment use, tobacco smoke, and burned or charred food. Some flame retardants and common cleaning chemicals, nonstick coatings, styrene, and chemicals in stain-resistant textiles can also be linked to cancer. In addition to the Silent Sprint study, another common chemical was recently linked to the growth of breast cancer cells in a laboratory setting.Triclosan was declared toxic to the environment by Environment Canada in 2012, and Environmental Defence has been calling for a ban on the substance for more than four years. Yet triclosan is a registered ingredient in over 1,600 products in Canada.
But there are ways to reduce exposure to these chemicals. Both through steps we can take as individuals, and by raising our voices to demand that companies stop putting these chemicals in products and that decision makers enact bans or restrictions on the worst offenders.
The study results suggest some ways to reduce breast cancer risk, including simple steps such as:
Avoiding exposure to gasoline fumes, including from idling carsVentilating your kitchen while cookingBuying furniture that does not contain polyurethane foam or flame retardantsAvoiding stain-resistant materials that may contain harmful chemicalsRelying on dry cleaners that use less-toxic chemicalsCutting down on household dust by removing shoes, vacuuming with a high-efficiency particulate air filter and cleaning with wet rags or mops.
Via Susan Zager
Tambre Leighn's insight:
Environmental causes can be reduced or eliminated = prevention. That is a win for everyone. It is time for change.
Millions of Americans face the challenges of remaining productive in the workplace after a cancer diagnosis.
Tambre Leighn's insight:
Thank you, Tami Boehmer, for sharing so much of your experience for this article. We must continue to build awareness that a plan for treatment is not enough. Survivors need plans and strategies, short and long term, for living through, with and beyond cancer.
"A dancer since the age of 4, Maggie Kudirka knows the grit, discipline and focus required to become a professional ballerina.
Now the same drive that kept her dancing may be what keeps her alive: at 23 years old, Maggie, who trains and performs at the prestigious Joffrey Ballet School, was diagnosed with Stage 4 breast cancer.
As she takes the biggest leap of her life—a leap of faith that an aggressive treatment will attack her cancer—Maggie has launched a social media campaign. What started with the Bald Ballerina Facebook page to inform friends and family of her health situation has turned into a platform for Maggie to raise awareness about breast cancer in young women and raise money to help pay for her medical expenses.
After her June 19 diagnosis, Maggie says her world took a surreal turn. A schedule of six hours a day of ballet training with fellow Joffrey dancers in New York abruptly ended, as Maggie moved back home to live with her parents in Ellicott City, Maryland, and begin treatment.
Every individual MUST be their own best and strongest advocate. Trust your body and ask for, insist, demand, and scream, if you have to so you get the answers you need when your intuition is telling you there is something that needs attention.
Healthcare organizations and providers MUST stop questioning, doubting, and ignoring the concerns of patients just because they don't fall into a "norm". Props to Maggie, who ignore the complacent responses to her request for an appointment...
“I had trouble getting in to see a doctor because their gatekeepers did not think a lump in a 23-year-old woman was serious. They had openings for appointments several months later. They said, ‘Don’t worry, it’s probably nothing. You’re too young for breast cancer,’“ Maggie says. “How I wish they had been right.”
It is your body and your life. Take charge and be sure to find a HC provider who listens and responds to you. Thank you, Maggie, for using your experience and your profile as a magnificent dancer to raise awareness so other young women will have the courage to insist on getting the care they need and deserve in a timely manner.
"The Cancer Drug Coverage Parity Act has been reintroduced and now has over 80 bi-partisan co-sponsors! But the work is not done yet. The more bi-partisan co-sponsors we have, the more likely the House will move to vote on this critical legislation.
We need you to reach out to your US Representative to ask him or her to co-sponsor HR 1801. The bill will require oral anticancer treatments to be covered at the same rate as IV treatments. Many insurance plans treat patient-administered anticancer treatments, like oral pills, differently than other forms of treatment creating a financial barrier to care for many myeloma patients.
By entering your information below, you will be able to quickly and easily email your US Representative a prewritten letter. After clicking next, take a moment to customize the letter with a personal story to increase your message's impact. You can share your story or click on the talking points to the right to add those into your message.
Thank you for your help ensuring cancer patients have fair and equal access to all types of treatments!"
Identifying and addressing the unique needs of both pediatric and young adult cancer survivors speaks strongly to delivering quality of care. Primary care providers must become educated and informed so as to be able to support and provide appropriate resources to these populations that are growing every day.
Perfect example of being your own self-advocate and trusting your intuition. It is your body and your life. Speak up, ask questions, insist on answers and do not stop until YOU are satisfied. Props to Caroline Greaves for taking the wheel!
Age limits on clinical trials need to be more flexible to allow more teenage cancer patients the chance to access new treatments, according to a report from the National Cancer Research Institute (NCRI), published in the Lancet Oncology today.
It is important to understand this is an ongoing process but one that is definitely doable. It's also important to understand there will be some situations in life you will have no control over. The only thing you can control is your reaction to th...
Tambre Leighn's insight:
Cancer survivor turned survivorship coach, Kathy Daniels, shares her powerful story of transformation and how the odds inspired her to take the lead in her own wellbeing.
It is time to bring the art of the conversation back into healthcare. Using questions on a piece of paper or an electronic form seems counterintuitive for me as a coach if the intention is to open up dialogue around financial concerns.
Perhaps a great follow up study would be to compare the paper evaluation with physicians being trained to use open ended questions. Simply asking, "what, if any, kind of financial impact are you experiencing in your life as a result of going through cancer" will, no doubt, provide much greater detail than 11 checked boxes. The bigger question for me is what is missing from medical school training that our physicians feel unprepared to speak to quality of life issues with their patient? No wonder so many patients feel like they aren't receiving patient centered care.
Being heard is an experience a questionnaire cannot provide. Let's put away the paper and pens and, as so many mother's would say, "use your words," physicians.
For more information on how to bring coaching skills into your healthcare organization, go to www.ipecwellbeing.com or email firstname.lastname@example.org
No matter what type of physician you may be, and what type of news you are delivering, you become the single most important person in the world to your patients because you are there at the start of their journey, you are at the helm of their surviva...
Tambre Leighn's insight:
Cancer survivor and founder of IHadCancer, Mailet Lopez, leading the way toward compassionate future MDs. #advocacy #compassion
Something that also needs to be considered...the impact on oncology health professionals as they try to meet ever increasing requirements without enough financial support or processes and resources to implement the recommendations. It's often left to them to "figure it out" which can create a high degree of stress.
More collaboration, sharing of what is working in more mature survivorship clinics and working more directly with patient advocates to better understand what the patient needs as well as providing oncology health professionals with tools and training to reduce stress and work/live at high performance levels would go a long way in forwarding all the calls to action for improved survivorship experience.
There is one thing that changes everything - for both survivors and clinicians. To find out more, contact me at tleighn@iPECcoaching.com.
"At the end of yoga sessions for cancer patients, we are told to say to ourselves, 'I am whole, healed and healthy in this and every moment.' Perversely, since in yoga we express aspirations as if they were already so, the sentence reminds me of people who congratulate me on being 'cancer free.' Stable disease often goes unrecognized.
"Perhaps the concept of chronic cancer has been hard to comprehend because public discussion tends to focus on the initial diagnosis of breast cancer. Early detection of breast cancer yields good survival rates and many patients can consider themselves cured. Often we assume a clear-cut partition between survivors and the terminally ill."
Editor's note: This article addresses the under-recognition of chronic cancer that is neither cured nor quickly progressing, and how patients cope with finding themselves in this "gray area."
Finally! Credit to the advocates for finally creating recognition for a segment of the cancer survivor population that has long been kept out of conversations - and, yes, even some support groups. Education is the first step. Chronic and metastatic disease can be a confronting conversation but to ignore the unique challenges, concerns and needs of any part of the population dealing with the impact of cancer is not acceptable. Wonderful to see a mainstream media source bringing this issue to the forefront. Education leads to less fear, less judgment, less ignorance and greater compassion, connection and support.
Thank you for taking action today with activists across the country! The US House of Represenatitives will vote for the first time on this bill as early as this week. Let Congress know that you’re watching and you won’t fall for phony reform! Together, we will make sure that Congress hears our message.
Here’s an easy step by step guide for taking action to demand that your representatives oppose the Chemicals in Commerce Act.
1. Call this number (it’s an automated service that will direct you to your Congressional representative): 1-888-907-6886 2. Press “1” to find your member of Congress by entering your zip code 3. Enter the appropriate number to reach your House of Representatives congressperson(s) 4. When a person or answering service answers, say the following:
“Hi my name is _______ and I am very concerned about toxic chemicals in consumer products, the places we live and work and their impact on my family’s health. I’m calling Representative ___________ to ask him/her to oppose the Chemicals in Commerce Act. We need reform that will protect pregnant women from toxic chemicals, not giveaways for the chemical industry."
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