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ASCO Releases Adapted Guideline on Screening, Assessment, and Management of Fatigue in Adult Survivors of Cancer

ASCO Releases Adapted Guideline on Screening, Assessment, and Management of Fatigue in Adult Survivors of Cancer | Cancer survivor | Scoop.it

A majority of cancer patients experience some level of fatigue during their course of treatment, and approximately 30% contend with persistent fatigue for years after treatment. Fatigue is among the most common and distressing long-term effects of cancer treatment and significantly affects patient quality of life. ASCO has adapted a pan-Canadian guideline on screening, assessment, and care of cancer-related fatigue in adults with cancer, the National Comprehensive Cancer Network (NCCN) Guideline for Cancer-Related Fatigue, and the NCCN Guidelines for Survivorship for use in the screening, assessment, and management of fatigue in adult survivors of cancer.


Via Marie Ennis-O'Connor
Teresa Levitch's insight:

 Fatigue is among the most common and distressing long-term effects of cancer treatment and significantly affects patient quality of life.

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What Caught Our Eye This Week in Cancer Policy

What Caught Our Eye This Week in Cancer Policy | Cancer survivor | Scoop.it
“ A PBS Newshour segment discusses the late effects and potential secondary cancers that survivors of pediatric cancers face.”
Via Tambre Leighn
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Tambre Leighn's curator insight, July 3, 2014 11:21 PM

"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.

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10 Myths About Breast Cancer Survivorship: Johns Hopkins Breast Center

10 Myths About Breast Cancer Survivorship: Johns Hopkins Breast Center | Cancer survivor | Scoop.it
"10 Myths About Breast Cancer Survivorship MYTH: Eating soy products after having hormone receptor positive breast cancer increases my chance of a recurrence.FACT: Research on soy has been conflicting over the years. It has the capacity to mimic as well as block certain estrogens. Overall, natural dietary soy in the form of soy milk, soy bean sprouts, tofu or tempeh appears to be safe and may provide significant health benefits when it replaces animal sources of milk and protein. However, soy in concentrated forms such as pills, powders and supplements has the strongest potential for estrogenic activity and probably should be avoided by anyone who has been diagnosed with hormonal receptive breast cancer. MYTH: If I tested positive for the BRCA1 or BRCA2 gene mutation, I must have a bilateral mastectomy.FACT: Women with a BRCA mutation do have an increased risk of having a second breast cancer and many do choose to have bilateral mastectomies as a preventive measure. However having a BRCA mutation does NOT mean that you have to get a mastectomy. Women with a BRCA mutation are still good candidates for breast-conserving therapy and many choose this for their breast cancer treatment. Women with a BRCA mutation and any residual breast tissue need to be followed closely and are advised to have enhanced breast cancer screenings. MYTH: My deodorant contributed to my getting breast cancer.
Via Susan Zager
Teresa Levitch's insight:
Myth vs fact
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Ask Your US Representative to Support HR 1801 Today!

Ask Your US Representative to Support HR 1801 Today! | Cancer survivor | Scoop.it

"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!"


 


Via Susan Zager
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Susan Zager's curator insight, July 30, 2014 4:32 PM

Please use the International Myeloma Association's prewritten letter to Congress and write to your representatives to support this important bipartisan legislation  (HR 1801)/  It will assure that all cancer patients can receive oral as well as IV anti-cancer treatments treated the same way so that the oral medications are not a financial burden. 

Tambre Leighn's curator insight, July 31, 2014 11:51 AM

Your voice counts...take action, create change.  Equal reimbursement for oral chemotherapy...it's the right thing to do.

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Medical Costs and Productivity Losses of Cancer Survivors — United States, 2008–2011


Via Krishan Maggon , Tambre Leighn
Teresa Levitch's insight:

While this is not what I want to read, it validates my experience .

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Krishan Maggon 's curator insight, June 13, 2014 1:44 AM

Cancer survivors in the US face mounting costs associated with treatment, surgery, radiation, regular check ups, laboratory, diagnostic, screening/imaging, high priced drugs, high risk of second cancer and side effects.  

Tambre Leighn's curator insight, June 13, 2014 1:57 PM

The impacts of cancer are far-reaching.  More evidence survivors need holistic support - meaning a way to create and implement strategies around life challenges such as finances, career and more.

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Better Survivorship Care for Patients: The Nurse's Role

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.

Via Tambre Leighn
Teresa Levitch's insight:

Nurse's can be well qualified to help provide Survivorship Plans for those finishing treatment. They are able to read and understand the medical jargon. This can translate to real information for the public in a format survivors can use.

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Tambre Leighn's curator insight, May 30, 2014 3:33 PM

Yes, yes, and yes! Incredible resource for oncology nurses, survivorship care coordinators, advocates and survivors who want to learn more about survivorship care plans.

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How to (Respectfully) Disagree With Your Physician

How to (Respectfully) Disagree With Your Physician | Cancer survivor | Scoop.it
When we aren’t feeling well or sense something is wrong with us, we head to the doctor to get professional insight. But what happens if we don’t agree with our doctor’s expert opinion?
Via Marie Ennis-O'Connor
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We can't always agree with our doctors.
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Taste and smell dysfunction in childhood cancer survivors

Taste and smell dysfunction in childhood cancer survivors | Cancer survivor | Scoop.it
CHILDHOOD cancer treatments such as chemotherapy and radiation therapy may have long-term negative impacts on taste and smell function, new research s...
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ASCO Launches New Survivorship Guidelines

ASCO Launches New Survivorship Guidelines | Cancer survivor | Scoop.it
ASCO has launched the first 3 guidelines as part of a series that will cover all aspects of cancer survivorship.
Teresa Levitch's insight:

New guidelines for cancer survivors

 

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Deborah Fenlon's curator insight, April 26, 2014 6:54 PM

Will have to log in to ASCO to see this, but interesting to see what the American perspective is.

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ASCO Releases Adapted Guideline on Screening, Assessment, and Management of Fatigue in Adult Survivors of Cancer

ASCO Releases Adapted Guideline on Screening, Assessment, and Management of Fatigue in Adult Survivors of Cancer | Cancer survivor | Scoop.it

A majority of cancer patients experience some level of fatigue during their course of treatment, and approximately 30% contend with persistent fatigue for years after treatment. Fatigue is among the most common and distressing long-term effects of cancer treatment and significantly affects patient quality of life. ASCO has adapted a pan-Canadian guideline on screening, assessment, and care of cancer-related fatigue in adults with cancer, the National Comprehensive Cancer Network (NCCN) Guideline for Cancer-Related Fatigue, and the NCCN Guidelines for Survivorship for use in the screening, assessment, and management of fatigue in adult survivors of cancer.


Via Marie Ennis-O'Connor
Teresa Levitch's insight:

 Fatigue is among the most common and distressing long-term effects of cancer treatment and significantly affects patient quality of life.

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ASCO Turns Attention to Community Researchers With Community Research Forum

ASCO Turns Attention to Community Researchers With Community Research Forum | Cancer survivor | Scoop.it

The implementation of clinical trials and quality research programs by community-based investigators and research staff is one of the most effective weapons available in the fight against cancer. The ASCO Community Research Forum was designed in support of this mission and to aid these professionals in navigating and overcoming the challenges that are unique to community-based research.

 

“The Community Research Forum is a group that has been established to think critically about the problems and challenges to doing clinical cancer research in the community setting, identify those problems, and, with the support of ASCO staff, help to solve those problems,” said Nicholas J. Robert, MD, Chair of the Community Research Forum subcommittee and a medical oncologist with Virginia Cancer Specialists, Fairfax, Virginia.


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Serious Health Issues May Await Survivors of Childhood Cancer - MedicineNet

Serious Health Issues May Await Survivors of Childhood Cancer - MedicineNet | Cancer survivor | Scoop.it
“ Adult survivors of childhood cancer are more likely to develop serious health problems than their siblings, a new study finds. (Serious Health Issues May Await Survivors of Childhood Cancer Title: Serious Health Issues May Await Survivor...”
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These issues effect all cancer survivors
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First Treatment for Pain Caused by Chemotherapy

First Treatment for Pain Caused by Chemotherapy | Cancer survivor | Scoop.it
Conventional chemotherapy can damage nerves, causing pain and numbness, particularly in the hands and feet. Called neuropathy, this side effect can last months or even years after the completion of chemotherapy and there are currently no effective treatments. A new JAMA study shows that chemotherapy-induced neuropathy can be lessened with a drug called duloxetine (Cymbalta), which has also been shown to alleviate neuropathy in people with diabetes. The new study included 231 people who reported pain of at least 4 (on a scale of 0 to 10) after treatment with oxaliplatin or taxanes such as paclitaxel. Nearly 60% of those treated with duloxetine reported pain relief and those who had been treated with oxaliplatin may have benefited the most.
Via Cancer Commons
Teresa Levitch's insight:
Neuropathy is often a long term side effect of treatment. Cymbalta may help.
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Digital health and the e-Patient revolution - Digital | Health 2014

Digital health and the e-Patient revolution - Digital | Health 2014 | Cancer survivor | Scoop.it
Cancer survivor and patient empowerment evangelist "ePatient Dave" is coming to Digital Health Days 2014 http://t.co/ieqbYGBcs6
Teresa Levitch's insight:

http://on.ted.com/i09DY this is the link to the Ted talk.. Having access to my medical information has helped me understand what is going on, alleviating fears.

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10 Myths About Breast Cancer Survivorship: Johns Hopkins Breast Center

10 Myths About Breast Cancer Survivorship: Johns Hopkins Breast Center | Cancer survivor | Scoop.it
"10 Myths About Breast Cancer Survivorship MYTH: Eating soy products after having hormone receptor positive breast cancer increases my chance of a recurrence.FACT: Research on soy has been conflicting over the years. It has the capacity to mimic as well as block certain estrogens. Overall, natural dietary soy in the form of soy milk, soy bean sprouts, tofu or tempeh appears to be safe and may provide significant health benefits when it replaces animal sources of milk and protein. However, soy in concentrated forms such as pills, powders and supplements has the strongest potential for estrogenic activity and probably should be avoided by anyone who has been diagnosed with hormonal receptive breast cancer. MYTH: If I tested positive for the BRCA1 or BRCA2 gene mutation, I must have a bilateral mastectomy.FACT: Women with a BRCA mutation do have an increased risk of having a second breast cancer and many do choose to have bilateral mastectomies as a preventive measure. However having a BRCA mutation does NOT mean that you have to get a mastectomy. Women with a BRCA mutation are still good candidates for breast-conserving therapy and many choose this for their breast cancer treatment. Women with a BRCA mutation and any residual breast tissue need to be followed closely and are advised to have enhanced breast cancer screenings. MYTH: My deodorant contributed to my getting breast cancer.
Via Susan Zager, Teresa Levitch
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Rescooped by Teresa Levitch from Breast Cancer News
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Researchers challenge double mastectomy

Researchers challenge double mastectomy | Cancer survivor | Scoop.it
“ More and more women are choosing to aggressively treat a cancer diagnosis in one breast with a double mastectomy, but new research says that won’t make a difference in long-term survival rates. A large new study by the Stanford University School of Medicine and the Cancer Prevention Institute of California found that the rate of double mastectomies jumped from 2.0 percent in 1998 to 12.3 percent in 2013. But survival rates were similar to those who had the more targeted procedure of breast-conserving surgery — when just the malignant lump is removed, followed by radiation. The findings were published Tuesday in the Journal of the American Medical Association. “When faced with a new breast cancer diagnosis, many patients assume that they will achieve a survival advantage by pursuing the”
Via Susan Zager
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Such a personal choice. Make it with knowledge.
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Living With Cancer: Chronic, Not Cured

Living With Cancer: Chronic, Not Cured | Cancer survivor | Scoop.it

"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."


Via Cancer Commons, Tambre Leighn
Teresa Levitch's insight:

Given the long term effects of cancer treatment, such as Radiation Fibrosis, Chemo Brain, and Secondary Cancers ,after we are declared in remission we live in a gray area..

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Cancer Commons's curator insight, June 5, 2014 4:30 PM

The New York Times  |  Jun 5, 2014

Tambre Leighn's curator insight, June 6, 2014 12:27 PM

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.

Beth A. Williams's curator insight, June 7, 2014 12:41 PM

This article raises an important facet of some cancers -- that of a chronic condition rather than either a "cure" or an actively progressing disease. How others view this "gray area" vs. how cancer patients view it can make a difference in how supported the individual feels. Nonetheless, my view is that the cancer patient's perspective, attitudes and beliefs trump what goes on externally, and that we can choose happiness regardless of what is going on around us.

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Minority of Oncologists and Primary Care Physicians Fully Discuss Survivorship Care Plans With Cancer Survivors

Minority of Oncologists and Primary Care Physicians Fully Discuss Survivorship Care Plans With Cancer Survivors | Cancer survivor | Scoop.it

"Of 53 National Cancer Institute cancer centers, only 43% report implementing survivorship care plans for at least some of their cancer survivors. In a study reported in the Journal of Clinical Oncology, Blanch-Hartigan et al found that a minority of a nationally representative sample of oncologists and primary care physicians routinely discuss all aspects of survivorship care or furnish survivorship care plans for cancer survivors."


Via Cancer Commons, Tambre Leighn
Teresa Levitch's insight:

This needs to change to save lives.

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Cancer Commons's curator insight, May 6, 2014 2:33 PM

The ASCO Post  |  May 6, 2014

Cancer Commons's curator insight, May 6, 2014 2:33 PM

The ASCO Post  |  May 6, 2014

Tambre Leighn's curator insight, May 24, 2014 3:42 PM

This is an ongoing issue...nearly a decade after 2005 studies showing the value of providing a care plan.  Time for implementation of a low cost strategy with a high quality of life impact potential....and how about a plan that isn't only focused on the medical experience?  Survivors also need a plan for living their life - we need a call for care plans that support the whole individual....now.

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Call Congress and let them know you oppose the Chemicals in Commerce Act -Breast Cancer Action

Call Congress and let them know you oppose the Chemicals in Commerce Act -Breast Cancer Action | Cancer survivor | Scoop.it

"Take Action- Call In Instructions:

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."

 

5. Thank them for their time and hang up. 


Via Susan Zager
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Susan Zager's curator insight, May 28, 2014 3:29 PM

Let congress know that you oppose the Chemicals in Commerce Act by following the instructions above. 

Tambre Leighn's curator insight, May 29, 2014 11:29 AM

Take Action Now!  One person can make a difference - one phone call at a time.  Let your voice be heard in Washington today so we can get meaningful toxic chemical laws in place.

Natalie Palmer's curator insight, June 1, 2014 5:08 PM

Take action...

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ASCO issues guidelines for advanced HER-2–positive breast cancer

ASCO issues guidelines for advanced HER-2–positive breast cancer | Cancer survivor | Scoop.it

"ASCO recently issued two clinical practice guidelines on treating women with advanced, HER-2–positive breast cancer, published online in the Journal of Clinical Oncology.

The first guideline reviews the appropriate systemic therapies for patients with newly-diagnosed with advanced disease and those whose early-stage disease progressed to advanced cancer. The second guideline offers recommendations for treating brain metastases in patients with HER-2–positive advanced breast cancer.

The first guideline, Systemic Therapy for Patients with Advanced HER-2–Positive Breast Cancer:  American Society of Clinical Oncology Clinical Practice Guideline, provides evidence-based recommendations for using systemic targeted therapies in treating inoperable locally advanced and metastatic HER-2–positive breast cancer. These recommendations are intended to aid in standardizing care and maximizing the potential benefit from HER-2–targeted therapies.


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ASCO Guidelines Address Key Symptoms Affecting Cancer Survivors - Cancer Network

ASCO Guidelines Address Key Symptoms Affecting Cancer Survivors - Cancer Network | Cancer survivor | Scoop.it
ASCO Guidelines Address Key Symptoms Affecting Cancer Survivors Cancer Network This survivor population has physical and mental health challenges as a result of the effects of the specific cancer and treatment, as well as psychological effects from...
Teresa Levitch's insight:

"Studies and evidence from real-world clinical care show that the transition from active treatment to post-treatment is important, including addressing unique health issues and health risks for these patients. How patients care for themselves and whether their concerns are addressed clinically affect their long-term health outcomes". - See more at: http://www.cancernetwork.com/survivorship/asco-guidelines-address-key-symptoms-affecting-cancer-survivor

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ASCO Releases Guideline on Prevention and Management of Chemotherapy-Induced Peripheral Neuropathy in Survivors of Adult Cancers

ASCO Releases Guideline on Prevention and Management of Chemotherapy-Induced Peripheral Neuropathy in Survivors of Adult Cancers | Cancer survivor | Scoop.it

The American Society of Clinical Oncology has released a clinical practice guideline on prevention and treatment of chemotherapy-induced peripheral neuropathy in adult cancer patients, published in the Journal of Clinical Oncology. The overall incidence of chemotherapy-induced peripheral neuropathy is estimated at close to 40% in patients treated with multiple agents, with reported rates varying according to chemotherapy regimens, duration of exposure, and assessment methods; regimens associated with higher risk are those including platinum drugs, vinca alkaloids, bortezomib (Velcade), and taxanes.


Via Marie Ennis-O'Connor
Teresa Levitch's insight:

The guidelines resulted from the efforts of an expert panel with representation from the fields of medical oncology, community oncology, nursing, pain research, genetics, neurology, pharmacology, patient representation, and guideline methodology.

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ASCO Issues Adapted Guideline on Screening, Assessment, and Care of Anxiety and Depressive Symptoms in Adults With Cancer

ASCO Issues Adapted Guideline on Screening, Assessment, and Care of Anxiety and Depressive Symptoms in Adults With Cancer | Cancer survivor | Scoop.it

ASCO has adapted the Pan-Canadian Practice Guideline on Screening, Assessment, and Care of Psychosocial Distress (Depression, Anxiety) in Adults With Cancer for use in the screening, assessment, and care of anxiety and depressive symptoms in adults with cancer. The adapted guideline, reported in the Journal of Clinical Oncology by Andersen et al, applies to patients aged ≥ 18 years at any phase of the cancer continuum and regardless of cancer type, disease stage, or treatment modality, and is targeted to professional health-care providers including medical, surgical, and radiation oncologists, psychiatrists, psychologists, primary care providers, nurses, and others involved in care, as well as to patients, family members, and caregivers.


Via Marie Ennis-O'Connor
Teresa Levitch's insight:

It is recommended that patients be screened for depression and anxiety before diagnosis, at regular intervals thereafter, and as needed.

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Initiatives open up patient access to their health info

Initiatives open up patient access to their health info | Cancer survivor | Scoop.it

A number of buzz phrases in health care today describe a new focus on patients taking an active role in their health: “personal health records,” “participatory medicine,” “shared decision making,” and “patient engagement,” to name a few. Patients are demanding transparency and access to their health information, and recent initiatives from the government and private insurers are addressing these demands.

In 2014, there remain significant barriers to a broad, connected patient community, not the least of which is patients’ access to their own health information. In this article, I will address some recent developments that show these barriers are starting to come down.

 


Via Marie Ennis-O'Connor
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Words Used to Describe DCIS Affect Treatment Choices

Words Used to Describe DCIS Affect Treatment Choices | Cancer survivor | Scoop.it
"A study suggests that when the word “cancer” was used to describe DCIS (ductal carcinoma in situ), women thought that more aggressive treatment, such as surgery, was better than less aggressive treatment, such as closely monitoring the area. When DCIS was described as a breast lesion or abnormal cells, women chose less aggressive treatment. The research was published online on Aug. 26, 2013 by JAMA Internal Medicine. Read the abstract of “Impact of Ductal Carcinoma In Situ Terminology on Patient Preferences.” DCIS is the most common type of non-invasive breast cancer and is currently considered stage 0 cancer. DCIS isn’t life threatening, but can increase the risk of developing invasive breast cancer later in life. In July 2013, a group of National Cancer Institute experts recommended changing how cancer is classified, including changing the name of DCIS so “carcinoma” isn’t in the name. The experts believe that taking cancer out of the name would make the condition less scary and might reassure some women who opt not to have aggressive treatment for DCIS. The experts recommended using the word “cancer” only for lesions that would likely cause death if not treated."
Via Susan Zager, Deborah Fenlon
Teresa Levitch's insight:
Words make a difference in understanding treatment options
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Routes From Diagnosis Cancer Survivorship Report


Via Marie Ennis-O'Connor
Teresa Levitch's insight:

Wonderful charts, in depth information about survivorship issues. It can be downloaded for reading offline.

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