Cancer Survivorship
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10 Cancer symptoms men shouldn’t ignore | MD Anderson Cancer Center

10 Cancer symptoms men shouldn’t ignore | MD Anderson Cancer Center | Cancer Survivorship | Scoop.it
Cancer symptoms in men are often vague. Think nagging back pain or frequent indigestion. Find out what signs every man should look for.
Tambre Leighn's insight:

Some men can tend to "tough it out" or hesitate to engage with their health proactively...here's a quick checklist for men as a reminder.

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Cancer Messed With the Wrong B*tch: To Womb It May Concern

Cancer Messed With the Wrong B*tch: To Womb It May Concern | Cancer Survivorship | Scoop.it
Most of the articles I see about young women with cancer are about women who are mothers-- which is tragic, and breaks my heart every time I read them.
Tambre Leighn's insight:
Powerful article on the realities of cancer for young adults.
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Longview woman, 26, perseveres after stunning diagnosis of Stage 3 breast cancer

Longview woman, 26, perseveres after stunning diagnosis of Stage 3 breast cancer | Cancer Survivorship | Scoop.it
When Melissa Gipson first told doctors she felt a lump in her breast, they dismissed her concerns. Now, the 26-year-old will undergo a double mastectomy Tuesday, after being diagnosed with
Tambre Leighn's insight:

This has GOT to stop!  We must help people take charge of their own wellbeing, trust their intuition and have the communication and advocacy skills to be heard by the medical community.  

 

At iPEC, more and more of our certified professional coaches are now providing coaching to cancer survivors and in wellbeing - and we're expanding our work even further in healthcare with our programs for healthcare professionals and leaders to embed our Coach Centric skills within their roles.  

 

We've heard these stories too many times and the cost of refusing to listen to a patient's concerns is one that, in the end, impacts not just the patient, but all of us in one way or another.  

 

Enough is enough. 

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Healthcare Innovation Council Cites 2 Reasons Why EHRs Fail to Deliver

Healthcare Innovation Council Cites 2 Reasons Why EHRs Fail to Deliver | Cancer Survivorship | Scoop.it

Sigh...The Healthcare Innovation Council, an independent group of healthcare experts has urged Congress to re-examine the direction of the Meaningful Use program,

Tambre Leighn's insight:

Sigh...true that EHR's may not deliver because healthcare practitioners, the ones who have to use them, are not typically consulted regarding their development...AND...crickets...

 

...again, no mention of the patient...you know, the person whose health is on the table.  With all the calls for patient centered care, patient engagement, medical home models and more, it is shocking there is no and in an article like this...still.  Patients and caregivers are our strongest resources when it comes to understanding what will engage the patient in their care and own wellbeing. 

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How A Health Crisis Made Me Stop Bad-Mouthing My Body

How A Health Crisis Made Me Stop Bad-Mouthing My Body | Cancer Survivorship | Scoop.it
I am standing in front of my bathroom mirror, about to look at the surgery site for the first time. I take off the surgical bra and see two large, rectangular bandages. I pinch their corners and breathe in, then out. I pull them off....
Tambre Leighn's insight:

Stunningly beautiful post.

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Triage Cancer ~ A Great Resource for Cancer Survivors

Triage Cancer ~ A Great Resource for Cancer Survivors | Cancer Survivorship | Scoop.it

Next upcoming webinar features Julie Larson, LCSW on Resiliency After Cancer...Free!

Tambre Leighn's insight:

This wonderful non-profit offers valuable resources and information to cancer survivors and their caregivers.  Resiliency is an important topic...check out this upcoming webinar.

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When to Call the Doctor During Cancer Treatment

When to Call the Doctor During Cancer Treatment | Cancer Survivorship | Scoop.it
Tambre Leighn's insight:

It can be challenging to know when to make that call...especially as a caregiver when their loved one is resisting seeking medical care.  Having a guide on hand from a reliable resource such as Cancer.Net to quick reference during a health crisis can reduce stress and help you make decisions more clearly and quickly.

 

Talk in advance with your loved one and decide together, should symptoms occur, what your agreement is as to steps to be taken. 

 

When my late husband spiked a fever one night after chemo, something they told us to watch for, he did not want to go to emergency.  I asked him to agree that if it went past 102 degrees or did not break within a certain period of time that we would go.  I shared with him that I needed time to get him there before it hit the critical range where brain damage can occur.  This was much more effective than me telling him we were going as it honored both his wishes, to a point, as well as my needs to be able to ensure his safety as best as I could.

 

 

 

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Major Cancer Advances in 2013 Highlight Importance of Federal Funding

Major Cancer Advances in 2013 Highlight Importance of Federal Funding | Cancer Survivorship | Scoop.it

"About one-third of the most important clinical advances in cancer last year were made possible at least in part through federal funding, according to ASCO’s annual report on progress in cancer, published in the Journal of Clinical Oncology.1

Significant Declines in Funding

The report, “Clinical Cancer Advances 2013,” describes 76 major advances in prevention, treatment, and survivorship chosen for their potential to improve patient care and quality of life. Of the 76 advances, 26 were studies directly supported by federal dollars. These include many genomic and molecular profiling studies, several large prevention and screening trials, and early trials of promising agents for aggressive or treatment-resistant cancers.

That so many of the advances were federally funded points to the urgency of restoring funds for publicly supported research, said Richard L. Schilsky, MD, Chief Medical Officer at ASCO. Declines in federal funding due to sequestration and other measures have already slowed current research and could have a severe impact on future studies, especially on those that are least likely to be undertaken by the private sector.

“Many important questions can be answered only through publicly supported research, which is in real jeopardy,” Dr. Schilsky said."


Via Susan Zager
Tambre Leighn's insight:

We need to continue to press for funding increases in research.  Organizations like http://www.acscan.org/ are a great way to get educated on how to support advocacy for more funding.

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Susan Zager's curator insight, February 7, 2014 12:22 PM

Federally funded research in the US has had major cutbacks.. According to ASCO, "The ASCO report includes a policy section that discusses the impact of sequestration on National Institutes of Health (NIH)-funded studies and strongly recommends increased funding: It calls for $32 billion for NIH in next year’s budget, of which $5.2 billion would go to the National Cancer Institute (NCI)." With all the advances in research, clinical trials, genomic studies, prevention and treatment, with cutbacks in federal funding, if the money doesn't come from the private sector all of this work will be in jeopardy.

To see the ASCO report go to: http://www.cancerprogress.net/clinical-cancer-advances-2013. 

For the report on breast cancer go to: http://www.cancerprogress.net/clinical-cancer-advances-2013-breast-cancer


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March 3, 2014 Is Triple Negative Breast Cancer Day  

March 3, 2014 Is Triple Negative Breast Cancer Day   | Cancer Survivorship | Scoop.it

"March 3, 2014 marks the second annual Triple Negative Breast Cancer Day -- a national day of awareness raising, advocacy and grassroots fundraising events in support of a cure for triple negative breast cancers, and to provide assistance to those impacted by the disease. As an initiative of the Triple Negative Breast Cancer Foundation (TNBCF), this national event brings an air of hope and positivity to a sobering health issue.

Triple negative breast cancer often flies under the radar of the larger breast cancer conversation. It is an aggressive cancer subtype that primarily strikes premenopausal women, as early as in their 20s and 30s, along with African American, Latina and Caribbean women. Moreover, it significantly lags behind in the advancement of treatments used for other types of breast cancers.

TNBCF co-founder and executive director Hayley Dinerman says:

Our focus at the foundation is twofold. [One], we support triple negative research to find targeted treatments and [two], we are serving as a beacon of hope and giving a voice to the disease by providing information, services and programming that is exclusively devoted to the triple negative breast cancer community."


Via Susan Zager
Tambre Leighn's insight:

Mark your calendars.  Triple Negative Breast Cancer and its advocates are working hard to create better outcomes and quality of life for those diagnosed with this aggressive cancer.  Show your support on March 3rd!

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Susan Zager's curator insight, February 10, 2014 1:13 PM

The second annual Triple Negative Breast Cancer (TNBC) Day is March 3, 2014. "As an initiative of the Triple Negative Breast Cancer Foundation (TNBCF), this national event brings an air of hope and positivity to a sobering health issue." TNBC is very aggressive and there are less treatment options. To learn more about TNBC Day go to: http://www.tnbcfoundation.org/tnbcday2014/learnabout.htm


Heather Swift's curator insight, February 18, 2014 7:22 PM

[METS]

The second annual Triple Negative Breast Cancer (TNBC) Day is March 3, 2014. "As an initiative of the Triple Negative Breast Cancer Foundation (TNBCF), this national event brings an air of hope and positivity to a sobering health issue." TNBC is very aggressive and there are less treatment options. To learn more about TNBC Day go to: http://www.tnbcfoundation.org/tnbcday2014/learnabout.htm

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Breast cancer law questioned; doctors not required to notify patients of specific risk factor - NorthJersey.com

Breast cancer law questioned; doctors not required to notify patients of specific risk factor - NorthJersey.com | Cancer Survivorship | Scoop.it
A new law in New Jersey helps women with a condition that puts them at higher risk of breast cancer get additional screenings — but it fails to require health care providers to inform women when they have the condition and might need those tests.
Tambre Leighn's insight:

Huh?!  "The measure initially required that a letter be sent to women telling them they have dense tissue, so they could decide whether they wanted more testing. But it was rewritten after Dr. Sharon Mass, chairwoman of the New Jersey section of the American Congress of Obstetricians and Gynecologists testified before Assembly members last year, saying her group opposed direct notification. She said it would lead to physicians ordering unnecessary tests to prevent lawsuits and noted that a higher percentage of false-positives would lead to more biopsies."

 

Well, once again, it seems like it's up to the patient and the advocates to educate women to proactively follow up every time they receive a letter and ask what their specific results are, and be sure they get more testing if, indeed, they have dense breasts...and what of the benefits regarding potential lives saved with full notification?

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Return to Work Following Cancer - Cancer Knowledge Network

Return to Work Following Cancer - Cancer Knowledge Network | Cancer Survivorship | Scoop.it
by Dr. Tricia Morrison According to 20 cancer survivors who recently participated in a photovoice study exploring work following cancer, there are a variety of motivations underscoring a desire to resume work following cancer. For these participants, the predominant motivations … Continue reading →
Tambre Leighn's insight:

Yes, work can be a big part of survivorship - as part of healing and also potentially as a source of challenges.  Just one of many conversations survivorship care rarely involves...thus far. 

 

So much room for improvement that can have significant impact for healthcare organizations, patients, practitioners and our communities.  When survivors can work through the experience or return to work after treatment, we all win.

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Beth A. Williams's curator insight, March 17, 2014 4:21 PM

These motivations make a lot of sense and ring true. All are meaningful in that they help the individual succeed in their personal survivorship journey. 

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I wish I had breast cancer? | Tami Boehmer | Miracle Survivors

I wish I had breast cancer? | Tami Boehmer | Miracle Survivors | Cancer Survivorship | Scoop.it
World Cancer Day was yesterday, an event to debunk the myths of cancer. One myth is that breast cancer is one of the good ones to have. At least that's what one charity is purporting in an amazingly insensitive ad.
Tambre Leighn's insight:

Insightful, thoughtful response to the Pancreatic Cancer Organization's UK debacle.  I agree with author/advocate Tami Greenfield Boehmer...there is no need to insensitively belittle someone else's experience in the name of fundraising or raising awareness.  Ever.

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Not Enough Cancer Patients Enroll in Clinical Trials

Not Enough Cancer Patients Enroll in Clinical Trials | Cancer Survivorship | Scoop.it

Around 10% of mid- and late-stage clinical trials of cancer treatments end prematurely because not enough patients enroll, a recent analysis shows. This lack of participants slows the development of new cancer medications and wastes considerable amounts of money invested in these trials. The authors of the analysis hope to focus attention on possible reasons why too few patients enroll in clinical trials. Doctors may not always encourage their patients enough to participate, and some insurance plans do not cover the costs associated with clinical trials. Patients may also hesitate because they fear receiving only a placebo instead of treatment. However, in modern clinical trials, new cancer drugs are tested against the current standard therapy, so that all participants receive treatment.


Via Cancer Commons
Tambre Leighn's insight:

Given the frequency with which I see information requests by survivors in social media and on websites they connect to for support regarding the availability of trials, it would seem there is an excellent opportunity through efforts such as this analysis to find out what it is that survivors need to enroll more frequently as the interest seems to be out there.

 

However, it won't be enough to identify potential barriers.  To be of value and produce results that increase participation in trials, there will need to be follow up action plans that address these barriers - be they education, financial resources or other missing pieces that keep survivors from first knowing about trials and then from enrolling in them.

 

Perhaps those seeking to populate their trials may want to move past the Field of Dreams "if we build it, they will come" approach and reach out to the many highly active cancer communities and their survivorship populations or, in the least, involve the many advocates and influencers in those communities.

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Cancer Commons's curator insight, January 31, 2014 7:02 AM

Medical Xpress  |  Jan 28, 2014

Cancer Commons's curator insight, February 4, 2014 1:35 PM

Medical Xpress  |  Jan 28, 2014

Cancer Commons's curator insight, February 4, 2014 1:35 PM

Medical Xpress  |  Jan 28, 2014

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Cancer and Careers - Free Publications | Publication Order Form: Select Publications

Cancer and Careers - Free Publications | Publication Order Form: Select Publications | Cancer Survivorship | Scoop.it

Job Search Toolkit and 3rd Edition of Living and Working With Cancer now available.

Tambre Leighn's insight:

Great, free resources for cancer survivors seeking support and information on navigating through the impact on career.

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Teresa Levitch's curator insight, March 20, 2014 6:08 AM

These are free, for you or someone you care about.

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Triple Negative Breast Cancer Awareness Day: Continuing the battle

Triple Negative Breast Cancer Awareness Day: Continuing the battle | Cancer Survivorship | Scoop.it
On Triple Negative Breast Cancer Awareness Day, Fox News producer Annie Goodman shares her battle with the disease
Tambre Leighn's insight:

Annie Goodman is unstoppable...in so many ways.  Take time to get educated about Triple Negative Breast Cancer and read her inspiring story.

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Fertility Issues Take Back Seat to Breast Cancer

Fertility Issues Take Back Seat to Breast Cancer | Cancer Survivorship | Scoop.it

"A majority of young breast cancer patients expressed concern about the effects of treatment on fertility, but few altered treatment or took advantage of fertility preservation options, investigators reported.

Overall, 51% of 620 patients said they were concerned about infertility after treatment, but fewer than one in five changed their treatment because of fertility concerns. Though most of the women had discussed fertility issues with their physicians, only 10% opted to avail themselves of fertility preservation techniques, according to Kathryn J. Ruddy, MD, of the Mayo Clinic in Rochester, Minn., and co-authors.

The results pointed to shortcomings related to physician-patient communication and understanding about factors that influence cancer patients' decision-making about fertility preservation, they reported online in the Journal of Clinical Oncology.

"Nearly one third of the patients in our study did not recall discussing the impact of oncologic therapies on fertility before initiating treatment, suggesting that it is crucial that we continue to improve communication about fertility risks and options for fertility preservation, as well as to provide emotional support as young women come to terms with the impact of cancer on their hopes for a normal future," the authors concluded."


Via Susan Zager
Tambre Leighn's insight:

Yet another reason why we simply must bring Coach Centric skills into healthcare and embed them within the roles of our healthcare professionals.  When physicians and others learn to stop and ask one simple question, "With regard to the information I've just given you, what did you hear?"  Asking patients to speak back what they've heard quickly helps the professional understand if they are present and able to take it in or overcome by stress and unable to listen fully.

 

 "What implications might a choice to or not to preserve fertility have for dreams or plans you have to possibly be a parent?"  How might one or two simple, open ended questions help patients voice their fears and their desires so fertility planning and take actions that align with their values and priorities in life vs. being fear based or unconscious?

 

This is what we do through the 7th Level Wellbeing programs for healthcare professionals.  To learn more, email me for our white paper "The Role of Coaching in Transforming Healthcare" at tleighn@ipeccoaching.com

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Susan Zager's curator insight, February 25, 2014 11:40 AM

More needs to be known about fertility and the impact of oncologic therapies for women before they undergo treatment. To see the study referenced in the article go to: http://jco.ascopubs.org/content/early/2014/02/24/JCO.2013.52.8877.abstract


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Earlier palliative care improves quality of life, patient satisfaction, cancer study shows

Earlier palliative care improves quality of life, patient satisfaction, cancer study shows | Cancer Survivorship | Scoop.it
The impact of providing early outpatient palliative care versus standard oncology care in a wide range of advanced cancers indicate that earlier care improved quality of life and patient satisfaction, the first clinical study of its kind suggest.
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Importance of Adolescent and Young Adult Oncology and a Focus on Fertility Preservation - Cancer Knowledge Network

Importance of Adolescent and Young Adult Oncology and a Focus on Fertility Preservation - Cancer Knowledge Network | Cancer Survivorship | Scoop.it
Despite the existence of clear guidelines by the American Society of Clinical Oncology17, updated in 201318, the number of referrals by oncologists to fertility preservation services was disappointingly low.
Tambre Leighn's insight:

Too often we hear stories of Young Adults diagnosed with cancer who do not receive education and support around fertility issues and potential impacts of treatment. 

 

We need to continue to educate oncology professionals and other healthcare practitioners to be sure they include fertility conversations in their patient care.

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Brain tumor led him to great adventure

See how a former teacher's inoperable brain tumor led him across the country in the adventure of a lifetime.

Via Beth A. Williams
Tambre Leighn's insight:

When you face a circumstance you cannot change it's like reaching a fork in the road.  Though you may not have chosen the challenge that lies ahead, you have the power to choose how you will move through the experience...in fear, anger, upset, at the effect of the situation or filling what's next with meaningful, extraordinary moments. 

 

This teacher has a lesson for all of us.

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Beth A. Williams's curator insight, January 27, 2014 12:18 PM

This is the kind of outlook on life that is such an inspiration to LIVING FULLY in the moment  and confirms that we CAN choose to be happy no matter what life brings us. 

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Play to Cure: Smartphone games to literally fight breast cancer - Advertising Health | Healthcare Advertising agency news and gossip

Play to Cure: Smartphone games to literally fight breast cancer - Advertising Health | Healthcare Advertising agency news and gossip | Cancer Survivorship | Scoop.it
If you have ever wanted to help cure cancer, you might now be able to do so – with a ... »
Tambre Leighn's insight:

More evidence that something like technology is neither good nor bad - it is the way it is applied and used as to whether or not it will work for us or against us.  While this seems very early stage, it will be interesting to track developments and data as the project unfolds.

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Australian woman takes bold step to raise breast cancer awareness - by posting photographs showing surgery scars on Facebook

Australian woman takes bold step to raise breast cancer awareness - by posting photographs showing surgery scars on Facebook | Cancer Survivorship | Scoop.it

"Beth Whaanga, 32, from Brisbane, Australia, posted the series of candid pictures on Sunday as part of a cancer awareness project.

But she said she has been de-friended by more than 100 people since publicising the images on the social networking website.

The mother-of-four had to have a double mastectomy, breast reconstruction and a hysterectomy after cellular changes were detected in her left breast, and she was found to carry the BRCA2 gene.

In a bid to highlight the importance of regular self-checks, Ms Whaanga worked with photographer Nadia Masot to produce the photographs for their joint project “Under the Red Dress”.

Describing the venture, Ms Whaanga said: “These images are confronting and contain topless material. They are not in any way meant to be sexual. The aim of this project is to raise awareness for breast cancer. If you find these images offensive please hide them from your feed.

“Each day we walk past people. These individuals appear normal but under their clothing sometimes their bodies tell a different story. 

“Nadia Masot and I aim to find others who are willing to participate in our project so that we might show others that cancer affects everyone. The old and the young, age does not matter, self-examination is vital. It can happen to you.”


Via Susan Zager
Tambre Leighn's insight:

Sending a message like this can take great courage.  I applaud Whaanga's desire to save lives and her willingness to share her experience in a very raw and real way.  It was her choice to be part of this kind of messaging just as it is the choice of some to unfriend her.   Personally, were she a friend of mine, I would not do so however just as it is important not to judge Whaanga's choice to post, we cannot judge those who choose to unfriend.

 

Yes, we can hide things from our newsfeeds and yes Whaanga included a warning - very responsible and important part of her actions...but there may be many reasons some chose to stop following her.  For example, some may have lost a loved one to breast cancer and it may be a trigger to feelings of loss and grief.  And if it is not clear that this is a one time post, some may prefer to unfriend so as not to wonder if series is to follow, popping up in their feed at any time.

 

Unlike the recent Pancreatic Cancer Network debacle, this campaign stays completely focused on its own message and is a stand alone message that is not about comparing cancers.  It is a powerful outreach driven by a desire to save lives.  I hope Whaanga receives tons of supportive messages from those who remained her friends and who admire her courage and respect her choice...but if we're going to respect one person's choice to share a provocative message (in the sense that it's meant to be a wakeup call to get people into prevention mode) then we must also respect the right of others to choose what messages they want to see in their personal Facebook space.

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Susan Zager's curator insight, February 14, 2014 6:56 PM

Although people were upset about these images on Facebook, at least Facebook did not remove them. Beth Whaanga, age 32  lost 100 of her Facebook friends. but feels stingily that this will help raise awareness. 

Janne M. Rodsten's curator insight, February 15, 2014 4:07 AM

...like..!

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Cancer Messed With the Wrong B*tch: Cancer Is Not a Competition | Seporah Raizer

Cancer Messed With the Wrong B*tch: Cancer Is Not a Competition | Seporah Raizer | Cancer Survivorship | Scoop.it
Cancer is not a competition. Oh, well, it is if you ask Official Pancreatic Action -- their latest ad campaign features a picture of a woman, with a bald head (presumably from chemo), and next to her is a quote, "I wish I had breast cancer."...
Tambre Leighn's insight:

Exactly.  The cancer community needs to invest its energy in initiatives that support research, treatment improvements, improved quality of life and services for survivors.  This kind of campaign is divisive, inflammatory and unnecessary. 

 

There is no "better" cancer.  My late husband supposedly had one of the "good" ones...it killed him.  He suffered significantly through years as it took over his body.  Let's not compare cancer types, judge the experience of others as more or less than or wish for cancer of any kind.

 

Beautifully articulated, Seporah Raizer. 

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World Cancer Day: Half don't know about link between diet and cancer

World Cancer Day: Half don't know about link between diet and cancer | Cancer Survivorship | Scoop.it
Around half of Britons don't recognise the importance of diet in protecting against cancer, demonstrating that many of the myths about the disease are still widely believed.

Via Heather Swift
Tambre Leighn's insight:

So much work to be done and it must start with looking for the missing piece...are Britons without access to education around nutritional impact on health?  Are they aware but not clear on how to make healthy eating choices?  Time for a close look at what the obstacles are and then address them.  Education is not enough...it must translate into action and sustainable change.

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Official statement regarding advert

Tambre Leighn's insight:

As someone who worked in production with some of the top ad agencies in the world, I know there is a different way to get this same message across that does not judge, prioritize or evaluate certain cancers as better or worse.

 

After losing my husband to cancer (a cancer people might also “wish for” – Hodgkin’s disease – which is supposed to be highly treatable), I became a cancer survivorship coach. In my personal and professional experience caring for those with cancer, there is never an appropriate moment to judge someone else’s cancer journey as easier/harder/more desirable.

 

Sad that the day after World Cancer Day where we honored ALL cancer survivors, the focus would shift to such a poorly chosen message.

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