Resources For People Living With A Cancer Diagnosis & Their Families & Care-Partners
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Postmastectomy pain most troubling problem for breast cancer survivors

Postmastectomy pain most troubling problem for breast cancer survivors | Resources For People Living With A Cancer Diagnosis & Their Families & Care-Partners | Scoop.it

"Nov. 6, 2013 — More than 40 percent of 200,000 U.S. women diagnosed with breast cancer every year undergo surgery. Though treatment advances have significantly reduced mortality from breast cancer, a study published in The Journal of Pain reported that persistent postmastectomy pain is rated by survivors as their most troubling symptom. The Journal of Pain is published by the American Pain Society, www.americanpainsociety.org.

Researchers from the University of Pittsburgh evaluated 611 women who had undergone total or partial mastectomy and were treated with chemotherapy, radiation and/or hormone therapy. Their objective was to determine which factors -- demographics, tumor size, pain severity, treatments, stress, and psychological factors -- contribute to postmastectomy pain.
Via Susan Zager
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It's interesting to note the psychosocial variables of "anxiety, depression, impaired sleep, somatization and catastrophizing"  as contributing factors to postmastectomy pain . 

Partial Abstract:: http://www.jpain.org/article/S1526-5900%2813%2901027-4/abstract

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Susan Zager's curator insight, November 7, 2013 6:50 PM

It's interesting to note the psychosocial variables of "anxiety, depression, impaired sleep, somatization and catastrophizing"  as contributing factors to postmastectomy pain . 

Partial Abstract:: http://www.jpain.org/article/S1526-5900%2813%2901027-4/abstract


Tambre Leighn's curator insight, November 8, 2013 3:57 PM

More and more data pointing to the impact of psycho-social stressors, yet the emphasis in survivorship remains on physical symptoms, side effects.

 

Wellbeing is holistic and involves physical, mental, emotional and spiritual...from a 7th Level perspective. 

Tambre Leighn's curator insight, November 8, 2013 4:26 PM

More and more data pointing to the impact of psycho-social stressors, yet the emphasis in survivorship remains on physical symptoms, side effects.

Resources For People Living With A Cancer Diagnosis & Their Families & Care-Partners
Need assistance finding resources pertinent to your cancer diagnosis, or care? Find helpful information here!
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Five Ways to Put Self-Compassion into Therapy

Five Ways to Put Self-Compassion into Therapy | Resources For People Living With A Cancer Diagnosis & Their Families & Care-Partners | Scoop.it
Tim Desmond offers practical strategies from his new book on integrating the science of self-compassion into clinical treatment.

 

What is self-compassion? It is intimately tied to the practice ofmindfulness—a special way of paying attention to the present moment, with complete acceptance of our thoughts, feelings, and bodily sensations. Self-compassion comes from the understanding, gleaned through moments of mindfulness, that every human being suffers, that we all want to be happy but often don’t know how to find happiness, and that this commonality connects us with everyone else.


Understanding these truths, recognizing our own vulnerabilities, and practicing more kindness toward ourselves is at the heart of self-compassion.


By Tim Desmond 


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Caregiving and Holidays

Caregiving and Holidays | Resources For People Living With A Cancer Diagnosis & Their Families & Care-Partners | Scoop.it
Real patient experiences shared privately at www.TreatmentDiaries.com. Read more, share if you like or join in the conversation. Making sure you feel less alone navigating a cancer diagnosis is important. Connecting you to those who can relate and provide support is what we do.
Diary Entry
No mountain TOO steep when caring for a loved one...
...

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A Patient's View on Why Many Clinical Trials Fail to Enroll Sufficient Patients

A Patient's View on Why Many Clinical Trials Fail to Enroll Sufficient Patients | Resources For People Living With A Cancer Diagnosis & Their Families & Care-Partners | Scoop.it
A drug obtained through a clinical trial appears to have extended my life. So why do many trials fail to enroll sufficient patients?

 

Within trials for these sorts of drugs, therapies are free and participants who are not helped can drop out at any point. Yet according to the physician-author Wendy Harpham, only about 5 percent of adult patients receive treatment in trials and an estimated 30 percent of trials sponsored by the National Cancer Institute fail to attract the minimum number of patients needed.

 

The failure in enrollment can be partly attributed to the fact that trials must set scientific inquiry as their goal, not patient improvement. It is estimated that fewer than 6 percent of patients enrolled in a clinical trial will actually experience any kind of response to treatment. Of course patients who benefit from conventional interventions need not morph into guinea pigs.

 

But what of people who have reason to doubt the efficacy of standard protocols? And how come Phase II and III trials — where benefits are more likely to ensue — also fail to obtain the minimum number of patients needed? Are the astonishing advances that have been made in the treatment of childhood leukemia a result of the fact that more than 60 percent of children with cancer receive treatment through trials?

 

In any case, the barriers to participation remain legion. First of all, you need a Ph.D. to interpret the listings on the Internet. No, forget that: I have a Ph.D. and couldn’t do it.

 

The data on ClinicalTrials.gov are daunting. Patients coping with enervating symptoms and fears may find it impossible to search through hundreds of trials involving their disease. At many cancer centers, there is no research officer to help patients locate suitable trials. I am grateful for a savvy physician at a university hospital who could dedicate her and her staff’s time to the paperwork of consent forms and to the scheduling all trials require. Oncologists outside research networks may not be able to keep up to date in a quickly changing field. And some make their money by dispensing the usual drugs on hand.

 

Additionally, trials have limited openings within limited temporal frames at research centers. The calendars of the patients must match those of the researchers, and patients in rural populations confront a disadvantage, as do lower-income patients. Even though I receive some help covering travel and accommodation costs, expenses usually exceed the amount of this compensation.

 

Strict inclusion criteria can also pose a problem. Only people with a particular mutation or a specific number of recurrences are eligible. Early stage trials involving what patients call sugar pills seem most disconcerting. Why risk being “randomized” to the control arm of a trial in which participants do not receive the experimental drug, although they generally do receive standard care as part of the study?

 

For all these reasons, the premature termination problem of trials appears to be over-determined. Some of these factors need to be addressed by scientists and by regulatory as well as funding agencies, if the number of patients enrolled in trials is to increase.


Via Pharma Guy, Patient Empowerment Network
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Pharma Guy's curator insight, March 27, 2015 7:10 AM


Can technology such as Apple's ResearchKit help solve some of these problems? Read this: http://sco.lt/8FEbVh

Patient Empowerment Network's curator insight, August 5, 2015 4:43 AM

 

Can technology such as Apple's ResearchKit help solve some of these problems? Read this: http://sco.lt/8FEbVh

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Are the Holidays Different for Cancer Patients?

Are the Holidays Different for Cancer Patients? | Resources For People Living With A Cancer Diagnosis & Their Families & Care-Partners | Scoop.it
The holidays are fast approaching and with the festivities come special challenges for people living with chronic diseases, particularly cancer. The holidays can be stressful, even without a cancer diagnosis. And so, we want to know, what are your tips for living with cancer during the holidays? And what are you worrying about that others in our ...

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Finding the Right Care for You

Finding the Right Care for You | Resources For People Living With A Cancer Diagnosis & Their Families & Care-Partners | Scoop.it
(Randy Broad is a lung cancer survivor, author, and PEN member)

Telling the Full Story

I’m a bit miffed at the moment. I was just on the cancer treatment center site where I received my care and the opening page reads in bold, “Ranked No. 5 in U.S. for Cancer Care”. Seriously, ‘No. 5’? It made me pause and think, why on earth ...

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New Treatment Options for CLL Patients

New Treatment Options for CLL Patients | Resources For People Living With A Cancer Diagnosis & Their Families & Care-Partners | Scoop.it
At #ASH15 Andrew Schorr interviews CLL expert, Dr. Tom Kipps about the exciting new treatment options for CLL patients.

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CLL - What If The Plan Works?

CLL - What If The Plan Works? | Resources For People Living With A Cancer Diagnosis & Their Families & Care-Partners | Scoop.it
John May tells his story of CLL from diagnosis to treatment.

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Is It Possible For Pharma To Be Truly Patientcentric

Is It Possible For Pharma To Be Truly Patientcentric | Resources For People Living With A Cancer Diagnosis & Their Families & Care-Partners | Scoop.it
Although the industry wants to help patients get healthy and wants to be a critical part in that process theres a delicate balance to strike between selling product and achieving healthier outcomes.

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Breast Cancer In The Developing World: Rising Rates, Shrouded In Silence

Breast Cancer In The Developing World: Rising Rates, Shrouded In Silence | Resources For People Living With A Cancer Diagnosis & Their Families & Care-Partners | Scoop.it
Women are afraid their husbands will walk out. They think, I'll die anyway, so what's the point of seeing a doctor. Or there may be no treatment within reach.

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Susan Zager's curator insight, October 23, 2015 11:45 AM

This is an Intersting perspective about breast cancer outside the US and within. 

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Having breast cancer means being ‘aware’ every day, not just in October - The Washington Post

Having breast cancer means being ‘aware’ every day, not just in October - The Washington Post | Resources For People Living With A Cancer Diagnosis & Their Families & Care-Partners | Scoop.it

"There is a catchword for October among women who have been treated for or are living with breast cancer: Pinktober. The reason is on full display on television one Sunday afternoon as my boyfriend cheers on his NFL team: pink cleats, pink towels, pink goalposts, coaches with pink ribbons and a male announcer promoting the NFL’s “A Crucial Catch” campaign.

Yet I’m left to wonder, more than two years after my diagnosis and eight months out of active treatment for breast cancer: What is all the pink accomplishing?

After a wave of deaths in the young women’s breast cancer support group to which I belong, I am glum and petulant despite my boyfriend’s best efforts to alleviate my sour mood. I attempt to provide him with a snapshot of my pain: the deaths, my own fears at the blind luck of it all and my struggles to stay in the present.

Well beyond the 31 days of breast cancer awareness month, I am aware.

Getting up from my desk at work, my joints are stiff and achy, a side effect of the hormone therapy I will be on for 10 years. I hobble like a woman beyond my years until my hips, knees and ankles are warmed up and the discomfort dissipates. A colleague asks, “Did you hurt your leg?” “No, I’m okay,” I reply with an embarrassed half-smile.


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When Breast Cancer Strikes Without Symptoms | VICE | United States

When Breast Cancer Strikes Without Symptoms | VICE | United States | Resources For People Living With A Cancer Diagnosis & Their Families & Care-Partners | Scoop.it
When my childhood best friend was diagnosed with late-stage breast cancer, she was 26 years old, beautiful, and athletic—and there was no tell-tale "lump."

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Music May Reduce Anxiety Score in Breast Cancer Surgery Patients

Music May Reduce Anxiety Score in Breast Cancer Surgery Patients | Resources For People Living With A Cancer Diagnosis & Their Families & Care-Partners | Scoop.it
Live and recorded perioperative music therapy reduces anxiety in patients undergoing surgery for potential or known breast cancer.
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10 Things to Know About Prophylactic Hysterectomy and Oophorectomy

10 Things to Know About Prophylactic Hysterectomy and Oophorectomy | Resources For People Living With A Cancer Diagnosis & Their Families & Care-Partners | Scoop.it
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10 Things to Know About Prophylactic Hysterectomy and Oophorectomy
Contributor Georgia Hurst on what she learned as a result of her decision to undergo two prophylactic procedures.

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Why Kindness Heals: empathy for a patient -- listening, connecting, and validating them

Why Kindness Heals: empathy for a patient -- listening, connecting, and validating them | Resources For People Living With A Cancer Diagnosis & Their Families & Care-Partners | Scoop.it
While some clinicians don't appreciate this reality, research has demonstrated that when a physician or nurse shows empathy for a patient -- listening, connecting, and validating them -- the patient is more likely to recover faster across a wide variety of medical conditions to even include surgery.

 

One study has demonstrated that an empathetic interaction with a physician can have as much of a positive impact on one's risk of heart attack as taking an aspirin a day.

James R. Doty, M.D.


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The Conversation: Supportive Care for Lung Cancer Patients

The Conversation: Supportive Care for Lung Cancer Patients | Resources For People Living With A Cancer Diagnosis & Their Families & Care-Partners | Scoop.it
Meg Maley, RN, BSN, hosts a panel discussion around the topic of supportive care for lung cancer patients. Dr. Eric Roeland, Assistant Clinical Professor of Medicine at UC San Diego, Niki Koesel, MSN, ANP, ACHPN, FPCN, Director of Palliative Care, Carolinas Healthcare System, Levine Cancer Institute, and Randy Broad, a 7-year lung cancer ...

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Cargiving Tips

Cargiving Tips | Resources For People Living With A Cancer Diagnosis & Their Families & Care-Partners | Scoop.it
Editor’s note: Stella Alvo is the care partner of Len Keck, a CLL patient. They both participated in the September session of the Patient Café™ that talked about clinical trials. I had asked Stella for some caregiver tips to share, and she proposed the list below.
Stella’s List
Being the caregiver of a CLL patient on “watch and wait” ...

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Being Your Own Advocate

Being Your Own Advocate | Resources For People Living With A Cancer Diagnosis & Their Families & Care-Partners | Scoop.it
Tamara Lobban-Jones, Patient Power Producer and Lung Cancer Community Manager, and Lisa Goldman, a stage 4 non-small cell adenocarcinoma patient discuss why cancer patients need to be their own advocate.

They discuss the need for doctors and patients to communicate in new ways that respect the balance between a doctor's expertise and patients' ...

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Register with Patient Empowerment Network Today!

Register with Patient Empowerment Network Today! | Resources For People Living With A Cancer Diagnosis & Their Families & Care-Partners | Scoop.it

If you haven't registered with us, please do so today. We want to connect with you! #PatientEmpowerment #CancerPatients


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Impatient Patients

Impatient Patients | Resources For People Living With A Cancer Diagnosis & Their Families & Care-Partners | Scoop.it
At the recent ASH meeting, Carol Preston learned that patients are impatient, so several patient advocates are taking action to move the research needle faster

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Doctors often struggle to show compassion while dealing with patients

Doctors often struggle to show compassion while dealing with patients | Resources For People Living With A Cancer Diagnosis & Their Families & Care-Partners | Scoop.it

 
Many say our health-care system lacks compassion. I too at times feel that pills and surgeries, CT scans and radiation therapies, biopsies and blood tests have become a priority in medicine and that compassion — the “touchy-feely” part of medicine — has become an afterthought in patient care.

 

After a few days in the hospital, Mr. Venata’s fever subsided, and I asked if I could talk with him about his experience. He was a retired major who earned a Bronze Star in Vietnam, then became an executive for a multinational company, from which he had recently retired. He had never been married. I wanted to talk to him about how doctors should handle end-of-life situations.

 

By Manoj Jain


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Top physician fosters empathy in medicine

Top physician fosters empathy in medicine | Resources For People Living With A Cancer Diagnosis & Their Families & Care-Partners | Scoop.it
Like Charon, Joyce both practices and teach­es the multidisciplinary study of empathy. Re­cently in class, Joyce employed a series of exer­cises intended to help students build empathy with one another.

 

One exercise involves build­ing a conceptual map based on what one class member perceives of another. In a different ex­ercise, students take turns holding each other’s styloid bone on the wrist, while students write in the air.

A member of his writing seminar, Sarah King ’16, found Joyce’s focus on empathy in the class­room very effective. She said, “Empathy asks a person to be in tune with what’s happening at that moment with another human or multiple humans or the self.”

King sees also how the technique might be used outside of the classroom. She said, “The focus on empathy can help doctors retain their humanness in their work ethic.”


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What Do You Say When She Is No Longer Living With Cancer?

What Do You Say When She Is No Longer Living With Cancer? | Resources For People Living With A Cancer Diagnosis & Their Families & Care-Partners | Scoop.it

"Today, I held the hand of a 37-year-old woman who I knew was dying. Yesterday, we had spoken of second-line chemotherapy, weighing the risks against the chance that it might slow the malevolent progression of her sarcoma. Today, I entered her room knowing that I had to change my story, revise the plan, darken the prognosis, look in her eyes, hold her hand, probably cry. In the past 24 hours, the urine had stopped flowing and the jaundice had arrived. Her body had made that awful transition from living with cancer to dying of it. I entered the room, heavy with the burden of knowing too much."                


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Male Breast Cancer Coalition steps up to aid Beachwood man's fight for treatment drug: Faces of the Suns

Male Breast Cancer Coalition steps up to aid Beachwood man's fight for treatment drug: Faces of the Suns | Resources For People Living With A Cancer Diagnosis & Their Families & Care-Partners | Scoop.it

The Male Breast Cancer Coalition stepped in when Jerry Rubenstein of Beachwood learned that his insurance company would not cover a drug for his treatment.


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Researchers refine breast cancer risk model to give more accurate assessment

Researchers refine breast cancer risk model to give more accurate assessment | Resources For People Living With A Cancer Diagnosis & Their Families & Care-Partners | Scoop.it
A national risk model that gauges a woman's chance of developing breast cancer has been refined to give a more accurate assessment. The revised figures, based on data from more than one million patients, reveal a 300 percent increase in a subset of women whose five-year risk is estimated at 3 percent or higher.
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Top Tips for a Safe Stay at the Hospital

Top Tips for a Safe Stay at the Hospital | Resources For People Living With A Cancer Diagnosis & Their Families & Care-Partners | Scoop.it
Going to the hospital can be nerve-wracking, but knowing what to do before, during and after your hospital stay can give you peace of mind and help you stay safe while getting the best care.
Heather Swift's insight:

Top Tips for a Safe Stay at the Hospital

No one wants to spend extra time in the hospital. Know what to do before, during and after your visit to stay safe while getting the best care and avoid return unnecessarily. 

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