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.
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.
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....
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.
"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."
"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."
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!
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?
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.
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.
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.
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.
"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."
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 firstname.lastname@example.org
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.
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.
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.
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.
"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.”
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.
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.
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.
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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