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Is Chemobrain Real? Coping With Cancer-Related Cognitive Changes

A familiar name on the tip of your tongue, keys misplaced, a train of thought derailed in the middle of a sentence. If what I’ve just described sounds familiar, you may be experiencing symptoms of “chemobrain” – a name for the cognitive (how you process and recall information) difficulties associated with cancer treatment.

Although one of the most frustrating side effects of chemotherapy, not long ago, the medical profession was skeptical when patients who had completed treatment complained of a kind of mental haze or fog. Today, despite some lingering skepticism, research studies confirm what patients have long reported – that chemobrain is a real issue for people living with and beyond cancer.

The first of these studies [1] which was published in 2011 was conducted at Stanford University and used functional MRI imaging (fMRI) to compare the brain images of healthy women and women with breast cancer. The study found that not only did brain activity differ, but that those patients who had undergone chemotherapy had additional specific differences and decreases in executive function – the mental processes that enable us to plan, focus attention, remember instructions, and juggle multiple tasks successfully.

Signs and Symptoms of Chemobrain

A more formal term – post-cancer cognitive impairment (PCCI) – is used by researchers to describe a group of symptoms, which include slow mental processing, difficulty concentrating, organizing, and multitasking. Things you could do easily before cancer are now more difficult.

Symptoms can also include:

  • memory loss – forgetting things that you normally remember
  • tiredness and mental fogginess
  • struggling to think of the right word for a familiar object
  • difficulty following the flow of a conversation
  • confusing dates and appointments
  • misplacing everyday objects like keys and glasses

These symptoms can be especially frustrating when you are at work or in social situations. “It can be difficult to explain to others what we are going through,” explains therapist Karin Sieger [2]. “I like to use the example of a computer. If our brain was a computer used to running 6 apps and multi-tasking for example on Facebook, Twitter, watching TV and doing WhatsApp at any given time, with chemo brain our brain may be able to use one app only, and even then only for a short period of time. It will also take a lot longer to re-charge.”

What Causes Chemobrain?

It’s still not clear how many people with cancer get chemobrain or which drugs cause it. People who had high doses of chemotherapy may report memory problems, but even those who had standard doses have also reported memory changes.

Cyclophosphamide, Adriamycin, 5-FU, and Taxol seem to be particular culprits, but there are others that can cause the condition.  Tamoxifen, and to a lesser degree, aromatase inhibitors may also have a negative effect on cognition.

Research also suggests that a combination of factors, including the stress and anxiety of a cancer diagnosis and side effects of treatment such as fatigue, anaemia, sleep disturbances or hormonal changes can also play a part.

Who Gets Chemobrain?

When it comes to answering the question of which patients get chemobrain, studies have reported a wide range of different figures, ranging from 17% to 60%. The condition can affect people with different types of cancer and at different times. It affects men and women of all ages, although people might be more likely to have the condition if they are older or already have problems with memory or anxiety and depression.

Can I Reduce The Symptoms Of Chemobrain?

There are several things that you can do to help you cope better with chemobrain.

Make sleep a priority

Research has found that not sleep deprivation can affect our ability to commit new things to memory and consolidate any new memories we create. Getting enough sleep is a state that optimizes the consolidation of newly acquired information in memory. [3]    Even a short nap can improve your memory recall.

Take regular exercise

Studies have shown that regular exercise can improve memory as physical activity will increase blood flow to your whole body, including your brain. [4]    There are many benefits to exercise. Not only does it help reduce the symptoms of fatigue (which exacerbates cognitive processing) exercise encourages your body to release endorphins – often called ‘feel good hormones’. When released, endorphins can lift your mood and sense of well-being.  Easing stress and elevating mood may also ease chemobrain symptoms.

Keep your mind active

Just as physical activity helps keep your body in shape, mentally stimulating activities help keep your brain in shape too. Doing crosswords, sudoku and puzzles will help to keep your mind exercised. You may also like to try computer pro­grams that are designed to improve memory and attention span.

Practice mindfulness meditation

Research has shown that practicing mindfulness can improve memory recall in just eight weeks. Meditation has also been shown to improve standardized test scores and working memory abilities after just two weeks. [5]

Eat more berries

More research is needed in this area, but some studies show that phytochemical-rich foods, such as blueberries, are effective at reversing age-related deficits in memory. [6] Blueberries are a major source of flavonoids, in particular anthocyanins and flavanols. Although the precise mechanisms by which these plant-derived molecules affect the brain are unknown, they have been shown to cross the blood brain barrier after dietary intake. It’s believed that they exert their effects on learning and memory by enhancing existing neuronal (brain cell) connections, improving cellular communications and stimulating neuronal regeneration.

Ten Tips to Help You Cope With Chemobrain

Below you’ll find a list of everyday self-help tips which will help restore your confidence at work and in social situations when you feel brain fog descend.

  1. Lists are your friend. Write daily lists about the errands you need to run, things you need to buy and where you have left important things.
  2. Carry a notebook with you to keep track of daily activities and things you want to remember. Make use of daily planners, wall planners, smart phones, and other organizers.
  3. Put sticky notes as reminders in places where you will easily see them.
  4. Say information you want to remember out loud five or six times to help fix it in your memory.
  5. Try linking a visual image with the information you want to remember.
  6. Leave a message on your answering machine or set an alert on your phone to remind yourself of something important.
  7. Get in the habit of keeping everyday items like your keys and cell phone in a regular place for easy retrieval, for example a basket or table by your front door.
  8. Avoid trying to do too many things at the same time. Concentrate on one task at a time and don’t multitask. Put your phone away, close your email applications and any unnecessary browser windows on your computer. Concentrate fully on the one task you need to complete.
  9. Plan ahead. List your 3 most important tasks to deal with the night before, so you can hit the ground running the next day.
  10. Do the most difficult tasks of the day first thing when you are most alert.  If a task is too big to complete in one day, divide it into smaller tasks to be spread out over several days.

When To Seek Further Support

For most patients, chemobrain improves within a year after completing chemotherapy, although around 10-20% of people may have long-term effects even ten years after treatment. However, these side effects should be stable. If you have tried self-help techniques but the symptoms are not improving, you should speak with your doctor who may refer you to a neuropsychologist.

Neuropsychologists are psychologists with special training that prepares them to help people experiencing trouble in areas such as attention, new learning, organization and memory. A neuropsychologist will do a complete evaluation and determine if there are any treatable problems such as depression, anxiety, and fatigue.  It’s important to make sure you’re receiving treatment for any depression, anxiety, or sleep problems. Make sure you also have had your thyroid, vitamin D and B12 levels checked.

Chemobrain is a frustrating side-effect of treatment and a reminder that cancer isn’t done with us when treatment ends. It’s important to know that there is help available. Don’t ever feel you are alone when it comes to dealing with the ongoing effects of cancer. Talk to your doctor and reach out to your online patient community for support and practical tips on coping with chemobrain.


References

[1] Kesler, S.R. et al. Prefrontal Cortex and Executive Function Impairments in Primary Breast Cancer, Arch Neurol. 2011;68(11):1447-1453

[2] Karin Sieger

[3] Born, J., Rasch, B., & Gais, S. (2006). Sleep to Remember. The Neuroscientist, 12(5), 410–424. 

[4] Erickson, K.I, et al. Exercise training increases size of hippocampus and improves memory Proceedings of the National Academy of Sciences Feb 2011, 108 (7) 3017-3022.

[5] Mrazek, M. D., Franklin, M. S., Phillips, D. T., Baird, B., & Schooler, J. W. (2013). Mindfulness Training Improves Working Memory Capacity and GRE Performance While Reducing Mind Wandering. Psychological Science, 24(5), 776–781.

[6] The Peninsula College of Medicine and Dentistry. “Getting Forgetful? Then Blueberries May Hold The Key.” ScienceDaily. 12 April 2008.

 

 

How Do You Deal With Cancer Guilt?

It may come as a surprise to those who have not experienced cancer to learn that many cancer survivors suffer a form of “survivor guilt.”  Survivor guilt is most often associated with a reaction to surviving a traumatic event that others have died in, for example, survivors of combat, terrorist attacks, natural disasters, or air crashes. Survivors feel guilty that they have survived the trauma and others – such as their family, friends, and colleagues – did not.

When the Diagnostic and Statistical Manual of Mental Disorders IV (DSM-IV) was published, survivor guilt was removed as a recognized specific diagnosis and redefined as a significant symptom of post-traumatic stress disorder (PTSD).

It seems clear to me that a diagnosis of cancer fits both the description of survivor guilt and PTSD too. Cancer is a traumatic experience and no-one who survives treatment comes out the other side unscathed.    As so many of us know, the end of treatment is not the end of dealing with cancer.  When we’re going through treatment, we are simply trying to survive and don’t really feel the full emotional impact that being diagnosed with cancer involves. It’s often only when treatment ends, that the full impact hits us.

Cancer Related Guilt is a Complex, Multi-Faceted Emotion

We may feel guilt at “surviving” when others have not.  Dee Sparacio writes of her feelings at a time when a friend’s husband died. “How could I face my friend?  How could I, NED [No Evidence of Disease] for 5 years since my recurrence face my friend. Would she look and me and think – why are you still here and my husband is gone?”

Karin Sieger also describes her experience of feeling guilty after a relative died from cancer.  “A few years after my first cancer treatment, the terminal cancer diagnosis of a relative of mine, her gradual and then very quick deterioration and death filled me with the old feeling of guilt,” she writes. “In the presence of the bereaved mother my own mother felt guilty that her child is still alive. Cancer guilt can happen to anyone affected by cancer, including relatives and friends.”

We might feel guilty that our lifestyle choices somehow contributed to a cancer diagnosis. If we have discovered we carry the BRCA1/2 gene, we may feel guilty that we could pass this gene mutation on to our children.  On her blog, Audrey Birt describes how “breast cancer guilt has stalked me. Even when I’ve thought I’d put that beast to rest, up it pops in various guises. My guilt as a parent for causing my family to suffer has been a long term one. Carrying the BRCA2 gene tipped me again into a spiral of grief and guilt but somehow staying with that and recognizing that for what it is has helped me move through it.”

Cancer Guilt May Arise During Any Stage

I have also heard from patients diagnosed with an earlier stage disease, and patients who didn’t have to go through chemotherapy that they felt less “deserving” of sympathy.  One of my blog readers wrote, “I felt like a fraud when diagnosed as in I didn’t need chemo just surgery, radiation and tamoxifen so I didn’t want to make any fuss when so many others had REAL cancer.”

Guilt may also arise from a sense that what I’m doing with my life must have greater meaning if my survival is to be justified. Another of my blog readers commented, “I feel guilty that I am not making more of my life. When I was going through treatment, I made all sorts of plans for what I would do when I finished. I was really going to make the most of my life, now that I’ve been given a second chance…but I am too tired and overwhelmed to do any of those things.”

If any of this sounds familiar to you, you are not alone.  Feeling guilty at surviving cancer is a common experience and a perfectly normal reaction to what you have gone through. When I asked the question of my breast cancer community on Twitter “how you deal with survivor guilt?” I received some great answers.   I hope you will find comfort and practical advice in the quotes below.

“Cancer guilt was related to my family. Years before my diagnosis, my dad died of cancer. So they all had to do it again with me though a different situation. I felt huge guilt about my dad for not understanding. Counseling helped a lot. I would recommend counseling for sure. Or friends who listen and allow you to air the emotion.” Julia

Survivor’s Guilt

“I do feel a certain amount of “survivor’s guilt” since my cancer was stage 0 and no chemo or radiation-just surgery. Volunteering at a cancer support center helps me and inspires me filling me with hope – witnessing patients fortitude and determination to regain their health is so inspiring.” Susan

“The survivor guilt I felt was a sense of discomfort. I was quite possibly picking up someone else’s anger, frustration and despair at their own situation. But it is their situation, not mine. And since my second diagnosis I certainly have nothing to feel guilty about or to apologize for. We have a choice not do guilt, and also do not need anyone else to do guilt for us.” Karin

“As I’ve lost friends and colleagues to breast cancer I’ve grieved for them with an added complexity. What made the difference? Why did I survive and not them? In some ways I’m embarrassed I’m still here, four diagnosis later. It’s a form of madness to feel guilty you haven’t died, to feel guilty your treatment isn’t as bad as others, to feel guilty you’ve survived more than 20 years since your first diagnosis. I know it makes no sense but it’s easy to carry guilt along with everything else. But it serves no purpose and is fueled by a media that feeds a view of the cancer experience which is unrealistic, overly simplistic and laden with judgment.” Audrey

Overcoming Cancer Guilt

In his book, Travelling Light (The Columba Press) Daniel J. O’Leary quotes Bearwatcher, an Apache medicine man. “In the Apache language there is no word for ‘guilt.’ Our lives are like diamonds. When we are born we are pure and uncut. Each thing that happens to us in our lives teaches us how to reflect the light in the world; each experience gives us a new cut, a new facet in our diamond. How brilliantly do those diamonds sparkle whose facets are many, to whom life has given many cuts.”

So when you experience those feelings of guilt, contemplate the brilliant new facet in your diamond and reflect on the way that you can reflect that light in the world. You will best honor the memory of those friends who have died, by looking to the future and pledging to make the best life you can for yourself and those you care about. Life is a precious gift and you have been given the opportunity to recommit yourself to it. Now is your time to live; so armed with the lessons you have learned from your cancer experience, look to the future and shine with the brilliance of your diamond light.

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Resource Links:

 Dee Sparacio

Audrey Birt

Karin Sieger

Is there a hierarchy among cancer survivors?

Twitter Comments:

Julia

Susan

Words Matter: Why Cancer Isn’t a Game of Winners or Losers

Are you “battling” cancer? Do you know someone who has “lost their fight” with the disease and died?

It seems whenever we hear a story about someone with cancer, war metaphors are never far behind.  Cancer battles must invariably be bravely fought, won, or lost.  Using this metaphor implies that if a patient fights hard enough and/or long enough, he or she will be able to “win the war.” The trouble with using this particular kind of metaphor to describe cancer is it puts the burden of healing on patients by turning them into winners and losers.  As breast cancer blogger, Nancy Stordahl, writes in What Does Beating Cancer Mean Anyway? ”Struggling to live up to some gold standard of what beating cancer means, adds to the already exhausting burden. We need to stop patronizing and judging cancer patients based on misguided battle talk analogies. Cancer isn’t an opponent in some war game you can stomp out by mindset or determination.”

Besides, the battle metaphor takes no account of the sheer randomness of the disease. Using a statistical model that measures the proportion of cancer risk, across many tissue types, scientists from the Johns Hopkins Kimmel Cancer Center published a study in 2015 which concluded that two-thirds of the variation in adult cancer risk across tissues can be explained primarily by “bad luck.” In other words, a major contributing factor to cancer is in fact beyond anyone’s control. For the most part, we don’t know why one person is alive 10 years after the diagnosis of advanced cancer, whereas another dies within months.

By this reasoning, no amount of fighting or battling cancer can affect its outcome.  Commenting on the study, the researchers said, “Many people have found relief in this research. Cancer has a long history of stigmatization. Patients and family members frequently blame themselves, believing there was something they could have done to prevent their or their family member’s cancer. We have heard from many of these families and are pleased that our analysis could bring comfort and even lift the burden of guilt in those who have suffered the physical and emotional consequences of cancer.”

Cancer is a disease; not a military campaign

Cancer is a disease; not a military campaign. In the words of patient and caregiver Jana Buhlman, “it’s a disease that people manage.”  Cancer is a complex disease. Yet there still exists a prevailing attitude to cancer which treats survival as though it were somehow an act of will.  You’ve got to be strong, remain positive and be courageous to overcome the disease.  Clodagh Loughrey, who was diagnosed with breast cancer nine years ago, explains, “I was absolutely petrified at the time, the opposite of strong or courageous, and to be also made to feel guilty for being scared by well-meaning exhortations to be ‘be positive’….people mean well and I didn’t want to sound ungrateful for the support as it is far worse (and easier for them) to avoid people with cancer, and some people did.”

What other diseases or condition do we say this about? “Do we fight a heart attack or a stroke? Are we told in any other illness to “keep fighting”? asks Jo Taylor, Founder of After Breast Cancer Diagnosis.   The fact is cancer doesn’t care how courageous or positive you are. Patients are in remission because treatment eliminated every cancer cell from their bodies, not because the patient fought courageously or was endlessly positive.  As a patient who is currently NED (i.e. no evidence of disease) I didn’t fight any harder than anyone else with this disease. I haven’t “beaten” cancer. I don’t know for sure that cancer will not come back again.

Cancer isn’t a game of winners and losers

I’ve lost count of the number of times I’ve read about patients who are in remission from cancer, having “won their fight” against the disease. Journalists in particular seem incapable of writing about a person who has died from cancer without resorting to the “lost fight” cliché.  Julia Barnickle, who is living with metastatic breast cancer, points out that while she doesn’t like the term personally, “I have no problem with cancer patients using fighting talk. However, I do object to the media using it, especially in the situation where someone is said to have “lost their battle with cancer.” It’s simply a hackneyed way of grabbing attention.”

Does this imply that patients in remission have somehow done more than those who aren’t in remission?  Or that cancer progression or death from cancer is somehow an indication of failure – of not having had the ability to fight and defeat the enemy?  “It seems,” in the words of breast cancer blogger Maureen Kenny, “if you’ve got cancer you’re almost always seen as battling or fighting it, more often than not bravely. We never hear of anyone dying of the disease after a lacklustre, take or it or leave it, weak-willed tussle.”

Cancer shouldn’t be reduced in this way to a game of winners and losers.  Commenting at the time of the death of film critic Roger Ebert, Michael Wosnick, wrote: “The use of the word, “lose” is like a zero-sum game to me: if someone or something loses then that means that someone or something else wins. You can’t have a loser if you don’t have a winner. We should not so easily give cancer that kind of power over us.”

If someone has lifelong hypertension and dies from a heart attack, do we say in the obituary that they lost their battle with high blood pressure? Then why do so many deaths from cancer get reported this way? While it’s not quite “blaming the victim”, it does have an implicit element of somehow placing the ultimate responsibility for having died in the hands of the deceased.

When words blame

Oncologist, Dr Don Dizon, tells a story about taking care of a young patient with ovarian cancer during his first year as an attending physician at Memorial Sloan Kettering Cancer Center. The patient had just relapsed from first-line treatment and in his discussion with her about the next steps, Dr. Dizon explains that, “despite the failure of first-line treatment, there are many more options for you.”

The doctor was stunned by the patient’s tearful reaction to his words: “You make it sound like this was my fault, like I did something wrong!” she said. “I’m sorry I failed chemotherapy, if that’s what you think, and I’m sorry I disappointed you.”

It’s a lesson Dr. Dizon has never forgotten, as he describes in his own words: “It was never my intention to place ‘blame’ on something so devastating as a cancer recurrence, and I certainly did not mean to imply that she had failed. These many years later, I still consider this encounter a watershed moment in my career as an oncologist.”

The “battle with cancer” may be “only a metaphor” but it stands for a quite destructive attitude that, to the extent it influences doctors as well, distorts the treatment of cancer too.  In a JAMA Oncology article, the authors discuss how “the continuous urge to win the battle extends to oncologists, who actively treat patients for too long. The fact is that 8% of patients receive chemotherapy within 2 weeks of dying of cancer, and 62% within 2 months. Late chemotherapy is associated with decreased use of hospice, greater use of emergency interventions (including resuscitation), and increased risk of dying in an intensive care unit vs at home. This all clearly reflects our society’s need to battle until the end.”

Embracing a fighting spirit can work for some patients

This isn’t to deny that some cancer patients embrace a fighting spirit as a way that helps them feel more in control.  Cancer survivor, nurse and educator, Beth Thompson describes how “identifying as a shorn ‘warrior’ psyched me up for and pushed me through treatment.”  Sara Turle, a 9-year survivor of cancer, also found resonance in the metaphor. “For me I was never battling cancer: it’s a disease, but I was definitely battling how I managed diagnosis and particularly getting through the side effects of treatments,” she explains. “It helped me to look at each stage and at times each day and even hour, at worst points, with a view of getting through, surviving and celebrating with just a simple acknowledgement. It truly helped me feeling that achievement and it helped with knowing that I was going to have to face it again.”

Professor Elena Semino and her colleagues have been studying the use of metaphors in the way we talk about cancer since 2012. As part of their research they have analysed 1.5 million words taken from interviews and online forum discussions involving cancer patients, family carers and health professionals. The team found that the type of metaphors people chose to use when describing their cancer reflected and affected how they viewed and experienced their illness. “For some patients, some of the time, the idea of being engaged in a fight is motivating,” explained Sermino. “Some people say with pride that “I’m such a fighter”, and they find a sense of meaning and purpose and identity in that. The study showed that we are all different, and different metaphors work for different people, and at different times.”

I agree. I’m not criticizing individuals who draw strength from calling themselves fighters.  Everyone is entitled to use whatever language they want to describe their own experiences. As Sara says, “My belief is that the right language is what is right for the individual person and I would hate to think that people who do find this language helps, feel that they can’t openly use for fear of what others may think. Whatever language gets you through is the right language for me. I am very mindful of when speaking to people now to be sensitive to the language they are happy with and these discussions of differing views have helped me with this.”  Beth agrees and asks, “Can we educate while still leaving room for what works for the individual experience of cancer?”

Wrapping Up

If you believe, as many patients do, that the words we use to describe cancer matter, how then should we begin to conceptualize it? Stephanie Sliekers asks a similar question in this HuffPost article, “If cancer really is the ‘enemy’, what’s the best way to beat it?” Her answer? “By studying and understanding it as it is, a disease borne out of human blood, tissues and genes, a disease that lives within us whether it is treatable or fatal.”

Perhaps, rather than speaking of cancer in militaristic terms, it’s better to communicate that we are “living with cancer” for as long and as well as we can. And when a person dies, let’s not say he/she has lost anything, but rather that person has died after living with cancer for a period of time.

Words matter a great deal in life, death, and everything that comes in-between. To quote Dr Dizon “Words are powerful and despite our best intentions, can hurt—this is true in life, and it is true in oncology.”

Patient Participation in Research: Towards Meaningful Engagement

“If patient engagement were a drug, it would be the blockbuster drug of the century and malpractice not to use it.” Leonard Kish

Have you detected a recent upsurge in activities concerning patient engagement in health research? If you are involved in patient advocacy, you may be increasingly aware of discussions around the importance of patient-oriented research. However, despite strong acknowledgement of the benefits of engaging patients in research, gaps still exist between the theory and the practice of patient engagement.  This article explores the ways in which patient participation in health research can move beyond rhetoric towards activity which results in research better aligned with meaningful patient outcomes.

What is patient participation in research?

You may notice that there is a wide range of terms used to describe patient oriented research.  Depending on which country you live in, you’ll hear a variety of terms from “patient/public/service/user/engagement,” to “participatory research,” “patient and public involvement,” and “co‐researcher/ co‐investigator.”

While there may not be a consensus for the terms used to describe patient oriented research, there is one fundamental concept that sets it apart from traditional research. In the past, patient participation was limited to involvement as research subjects. Research was undertaken by researchers to and for patients.  When patients are actively engaged, research is undertaken jointly with them.   This is an important step in ensuring that the real-life experiences of patients are considered in determining research priorities that are most relevant to patients themselves.

Why should you engage in health research?

There are many reasons why you may want to get involved in health research. Perhaps you wish to understand the research behind your disease and hope that involvement will give you direct access to knowledge of new treatments. You may also want to find a way to put your personal knowledge of the healthcare system and your experience of your condition to good use. In this way you can play a part in improving care for other patients. Those patients who take an active part in aligning research with real-world needs of patients and caregivers report feelings of increased self-confidence. By developing a stronger advocacy voice they feel more empowered, respected, and valued.

By engaging in research you can broaden the agenda beyond that set by health professionals and researchers. As someone who directly experiences illness and medical care, you can bring the perspective of what it is like to live with a disease. You’re uniquely positioned to contribute to research by sharing important ideas about what research would be most beneficial to you and other patients like you.  

How can you get engaged in research?

Patients can be engaged across a spectrum of research from planning and priority setting to disseminating findings. The deeper the degree of participation, the greater the influence you will have in decision making.    Becoming involved at the outset of the research project means you can identify relevant research questions and meaningful study endpoints.

Historically, researchers have framed questions which are not particularly relevant to patients. As an example, the research priorities of patients with osteoarthritis of the knee and the clinicians looking after them, were shown in a study to favor more rigorous evaluation of physiotherapy and surgery, and assessment of educational and coping strategies. Only 9% of patients wanted more research on drugs, yet over 80% of randomized controlled trials in patients with osteoarthritis of the knee were drug evaluations.


Research Stage 

Level of Involvement

Identifying/Prioritizing Determining the research topic, alignment of priorities, and identification of research questions.
Design Ensuring that the research methods are sensitive and appropriate for study participants.
Management Recruiting study participants; conducting interviews; being an active member of a steering group.
Data Analysis Highlighting findings that are most relevant to patients; summarizing the research for lay audiences.
Dissemination Improving access to patients via peer and social networks and accessing difficult-to-reach patient groups.

How do you know if participating in research is right for you?

It’s important to understand the reasons why you are being asked to take part in a research project. You and the research team should have a shared and clear understanding of what you are being invited to do.  Sometimes researchers look for patient participation to fulfill a funding requirement, without being clear about the role that patients will actually take.  Without a clear understanding of what meaningful engagement looks like, researchers may end up including patients solely to tick a funding box. Taking part in this kind of tokenistic research can be extremely unsatisfying and leave you feeling undervalued and frustrated.

Asking the following questions of the research team can be useful to help you decide whether or not a particular research project is right for you.

  • What level of involvement do you want from patients?
  • What change can happen as a result of this engagement activity?
  • What is my role? (Ask for a written “job” description.)
  • Are there any particular skills you are looking for? Do I need to understand research methodology, acronyms, and technical language? Will training be provided if I’m not familiar with research processes?
  • What is the time commitment you will expect of me? (You should take into consideration your other work or family commitments. For instance will you need to take time off work to attend meetings?)
  • Where will meetings be held? Are there accessibility issues you need to be aware of?
  • What preparatory work will be required to carry out in advance of meetings (e.g. pre-reading?)
  • How will I know if my input is incorporated in the research findings?
  • If my feedback isn’t used, will you share the reasons why not?
  • Are you paying patients? (Reimbursements for out‐of‐pocket expenses should be viewed as an absolute minimum.)

If you’re not satisfied with the answers you receive to these questions, then you should consider whether the project is something worth giving up your time for. Participating in research is time-consuming and sometimes it can be emotionally and physically draining. Consider too at what point you are in your own health journey. Will participation in research place an added burden on your treatment or recovery?  In making the decision to become involved in research, you should always balance your own health needs with the desire to be supportive of research and the research process. Heed the advice of pediatric neurodisability advocate, Jennifer Johannesen “if there is insufficient effort to justify and substantiate what is being asked of you, or it’s unclear as to why you’re involved, you can decline.”

Meaningful engagement is about shifting the traditional paradigm of patients as passive participants, to one in which we are fully involved as active contributors who have a sense of ownership in outcomes. You need to be able to trust that you are being genuinely heard and your concerns are being acted upon. Look for projects that champion diversity, reciprocal trust, and strong sustainable relationships. Ask for no less than this – research that respects your unique perspective and expertise and values your contribution as an equal partner in the research process.

Patient Advocacy: Ten Tips to Develop a Stronger Social Media Presence

Social media is a powerful addition to our patient advocacy toolbox. We can use it to raise awareness of our cause, build a community of supporters, promote our key messages and highlight our patient advocacy activities. To help you strengthen your online presence and create more visibility for your cause, I’ve put together this list of ten actionable tips you can put into practice right away.

1. Optimize Your Social Profiles

Your social media profile should be considered a key element of your advocacy brand. What will people’s first impression be of you when they encounter your online profile? What might make them decide to follow you?   Review each of your existing social profiles with the following points in mind.

  • Is it time to use a more professional picture to represent yourself online? Upload an image that is clear and easy to see, like a head and shoulders shot, or your organization’s logo. Make sure to upload images with the correct dimensions for each social platform (check out this guide to social media image sizes).
  • You have an opportunity to personalize your profile on Facebook and Twitter by uploading a custom header image. Use this opportunity to bring more authenticity to your account, for example you might use a picture of yourself holding a sign with a hard-hitting message. Or perhaps there’s a project or campaign you are currently working on. If so, include an image to represent this in the header space.

Take Action: Complete all sections of your profile to convey a stronger message and identity.  Schedule a review date every few months to check your information is still current.

2. Focus on Being the Expert One Platform at a Time

Each year brings shiny new social media tools and new features for existing tools. It’s tempting to jump on board the latest social media platform with the aim of being everywhere at once; but rather than spreading yourself too thinly, focus on mastering one or two platforms really well before moving on to the next one.

Take Action: Look back on the past six months and ask yourself which social media platform worked best for you? Which gave you the most engagement? And which platform had the least engagement? Consider focussing your efforts on the high-performing platform and becoming known as the go-to expert on this channel before adding anything new to your social media mix.

3. Schedule Your Social Media Posts

The internet is global and if you want your message to reach further than your own backyard, you need to hit multiple time zones. Tweets have the shortest lifespan of any social media post. Even though the latest Twitter algorithm means that posts are no longer displayed chronologically, Twitter is fast-paced, and messages get buried quickly. To counter this, you need to share your post multiple times on Twitter to increase visibility. Scheduling tweets allows you to reach followers when they are most likely to be online (even if you aren’t there at the same time) and allows you to maintain a regular and consistent online presence.

Take Action: Use a scheduling tool like Buffer or Hootsuite to schedule your updates to reach more people, more often. Don’t just post the same update every time. Vary your updates by changing around the headline, highlighting a statistic or quotation or adding different images.

4. Curate Content

The ability to curate credible content to share with our communities is a key skill for patient advocates. Hereditary cancer advocate, Amy Byer Shainman believes “patient advocates not only have a responsibility to curate trusted content but that it is an imperative if you are even going to be calling yourself a patient advocate.”

Content curation is defined as the process of gathering information relevant to a particular topic or area of interest.  While this definition sounds simple, there’s a world of difference between simply gathering information and being an effective curator. A good curator knows how to find, aggregate, and synthesize reliable information, putting it into context for their communities and sharing it in a format that is easy to access and understand.

Take Action:  Set up Google Alerts for the healthcare topics of interest to you.  Google Scholar is also useful as it indexes most peer-reviewed online journals of Europe and America’s largest scholarly publishers.

5. Create Visual Impact

You’ve surely heard this before, but it’s worth reiterating: images matter — a lot. In an age when people’s attention span averages 8 seconds (that’s shorter than a goldfish!) visuals are memorable and effective because they help people process, understand, and retain more information more quickly.

Visual content is 40x more likely to get shared on social media than other types of content according to research by Buffer. Furthermore, people connect more emotionally with images than text, and in an increasingly crowded digital landscape images can break through the online content clutter. The type of visual assets you can create include images, videos, infographics, quotes and GIFs.

Take Action: Add an image to all your online posts — even those that are text-based. Create a strong visual identity and maintain consistency across all your images by sticking to the same colours, fonts, and layouts. Read How To Create Professional GraphicsEven If Youre Not a Graphic Designer for more tips.

6. Use Relevant Hashtags

Hashtags are a powerful way to increase your visibility on social media. According to Twitter’s own research tweets with hashtags show a 100 percent increase in engagement (clicks, retweets, likes and replies).  Jo Taylor, a moderator of the UK-based breast cancer Twitter chat #BCCWW, explains that “finding disease hashtags opens up connections. If you connect with others you will be able to meet others easily online and you will build and learn from there.”

Take Action: Visit symplur.com to find the relevant hashtags for your disease area. If you can’t find a hashtag related to your topic, you might consider creating your own. For more information on using hashtags strategically read Everything You Ever Wanted To Know About Hashtags in Healthcare…But Were Afraid To Ask!

7. Live-Report Conferences and Events

Reporting live from an event is a way of engaging your followers by sending updates about an event as it occurs. It allows you to expand the reach of in-person events to provide valuable insights to those who are unable to attend in person. It’s also a way to increase your visibility as an attendee and enhance your credibility.

Live reporting tools include live-streaming using Facebook LiveInstagram Live, and Periscope (Twitter’s live-streaming app).  You can also share posts to your Facebook page and share photos and video clips via Instagram and Snapchat during the event.

Take Action: Read The Advocate’s Guide to Reporting Live from Conferences and Events for more tips on live-reporting.

8. Take Part In Twitter Chats

Twitter thrives on its community and the more you connect with other users the more quickly you will grow your own following. Joining a Twitter chat is a super way to connect and engage. When you attend a Twitter chat regularly, people will get to know you and in this way, you can quickly develop and grow your own network of supporters.  If you’re not familiar with them, a Twitter Chat is a public Twitter conversation around one unique hashtag. This hashtag allows you to follow the discussion and participate in it.

Twitter chats can be one-off events, but more usually are recurring weekly chats to regularly connect people, for example #PatientChat held every other Friday at 10:00 am Pacific/1:00 pm Eastern. The chat will be hosted and the host will ask questions along the way to stimulate discussion and sharing of ideas. There are chats for most disease topics and a full list can be found by searching the database of the Healthcare Hashtag Project. This is also a useful resource to find Twitter users to follow. In addition you will find past transcripts of chats on the website so you can familiarize yourself with the chat and its norms before taking part.

Take Action: There are chats for most disease topics and a full list can be found by searching the database of the Healthcare Hashtag Project. And “if you can’t find a tweet chat you enjoy,” recommends patient advocate, Annette McKinnon, “start a new one, register it @symplur and build a new community.”

9. Create a YouTube Channel

People engage with video more than any other form of content (written, audio, images, etc.). YouTube with more than 1.8 billion monthly active users remains the online video leader. 4 million YouTube videos are viewed every day, and the average session duration of 9 minutes and 28 seconds. That’s more than many other social networks.

Take Action: While producing your own video may seem daunting, video creation has never been more accessible through smartphones.  You can also create simple videos for your channel using free tools such as Adobe Spark and Lumen5 (see my YouTube channel for examples of Lumen5 videos).

10. Maintain a Consistent Content Creation and Promotion Schedule

Social media is an ongoing commitment. You need to post consistently to stay in front of your audience’s eyes and keep growing.  One key to maintaining a steady stream of quality content is to re-purpose what you already have. Check your blog’s analytics (or Twitter and Facebook analytics) to see the most popular posts you’ve written or shared.  Can you expand on these to include new research or thinking? Perhaps the content can be turned into an infographic or a slide-deck.

Take Action: Set aside one day each month to map out upcoming cause awareness days. Then use a simple excel spread sheet to create a calendar for social media postings. Include relevant hashtags and images.  A content calendar helps you maintain a consistent content production schedule, enabling you to plan for seasonal content, and annual campaigns.

Social media is an ever-evolving and fast-moving field, and with so much to learn and do, it’s easy to feel overwhelmed. You don’t have to implement all these tips at once. Try adding one new strategy to your social media plan each week and measure its impact at the end of each month. This way you will know which of these strategies are moving you closer to a stronger online presence.

Here’s to your social media success!

 

Tips on Finding a New Job or Changing Career after Cancer Treatment

In this three-part series, I’ve been exploring different aspects of returning (or continuing) to work after a cancer diagnosis. So far I’ve tackled issues from preparing to return to work and handling your workload, to dealing with problems such as fatigue and concentration.  In the final part of this series, I’m turning my attention to finding a new job after cancer treatment has ended.

There are a number of reasons why you might be looking for a new job after cancer. Perhaps you crave a fresh start, somewhere where you’re not known as the co-worker with cancer.  Or perhaps you need more work flexibility – such as the option to work part-time –  but your current employer isn’t in a position to make the adjustments you need. Or maybe you want to change career, switching direction towards something more meaningful and fulfilling.

Whether you’re looking for a new job or considering a new career direction, this month’s article has plenty of practical advice to help you.

1. Get Clarity on Your Direction

A good place to start is by getting clear on your new goals, financial needs and current skills and abilities. Grab a pen and some paper and take some time thinking about your responses to the following questions.

  • What are my core skills and strengths? Am I using them to their fullest in my current (or previous) job? Which skills and interests from my previous jobs will transfer over to a new position or field?
  • What new insights or skills have I gained through cancer? Do I want to be able to use these in my job?
  • Have my career goals changed? Do I want to work in a similar job but with more work-life balance? Or do I want to try something new?
  • Do I have the required skills for a new career interest? Will I need to retrain? How will this impact me financially?
  • Do I have the stamina to take on something new? Do I need to consider the impact of any long term side-effects from treatment on my ability to work?

2. Update Your Resume

The next step is to get your resume in order.  If it’s been several years since you last applied for a job, you may need to take into account that resume writing has changed quite a bit in the past decade. For example, the chronologically based resume (listing job titles, companies and dates in chronological order), while still popular, is giving way to a more dynamic skills-based one.   This is good news if you want to work around a gap in your employment history.  For a skills-based resume, you will create a relevant summary of your skills, career accomplishments and career goals and position this directly below your name.  You should aim to provide an example of an area of accomplishment related to each specific skill.

Pro Tip: When it comes to including employment dates, don’t include months in the dates, only years. This helps narrow the work gaps.

3. Develop Your Network

Make a list of everyone you know who is currently working in your industry or the industry you’d like to be in. Take a strategic approach by setting achievable goals for the number of people you want to connect with every week. Reach out to them and tell them about your plans to find new work or change career direction. Ask them to keep you updated of any new job openings and leads. Hiring managers are more willing to consider you for an interview after a personal recommendation.

Pro Tip: When it comes to building your professional network there’s no better tool than LinkedIn. LinkedIn multiplies your existing personal and professional networks by making the connections of your connections available to you at the touch of a digital finger.

4. Optimize Your LinkedIn Profile

Your LinkedIn profile is the cornerstone of your professional brand online. While you may already have a profile on the platform, is it optimized for a job search?   LinkedIn profile optimization simply means that your LinkedIn profile is fully updated to maximize your visibility on the platform. Everything you do on LinkedIn begins with your profile. Yet many professionals still treat their LinkedIn profile as little more than a place to park their resume and promptly forget about it.

You won’t be effective at LinkedIn networking if your profile doesn’t entice people to get to know you. Here are some quick tips to optimize your profile (for a step-by-step guide with more detailed information, click here).

  • Make your first visual impression count by displaying a high-quality professional photo.
  • Adding a background image directly behind your photo will help brand your profile. Think of it as your professional billboard.
  • Create a strong professional headline. This is a critical step because your professional headline is not just highly visible on LinkedIn, it’s also searchable by Google.
  • Nurture your LinkedIn relationships through regular engagement. This is not about making large numbers of contacts; rather, it’s about making meaningful connections.
  • Join industry relevant groups. Job openings are often posted by recruiters in industry groups. You will find groups by clicking on Interests > Groups from your profile or searching keywords to identify groups with interests similar to yours.
  • Become an active and engaged user. When you log into LinkedIn, notice each time who shows up in your home feed. Most likely you will see the same few people. These individuals are getting more visibility because they are more active. If you make the commitment to become more active in your network, you will increase your visibility
  • Be strategic about when you’re active on LinkedIn. As a general rule, LinkedIn users are most active right before and after work (7–8 am and 5– 6 pm), as well as during lunch time.

Pro Tip: Don’t be afraid to use social media to your advantage: if you know the hiring manager’s or recruiter’s name, add them on LinkedIn.

5. Mind Your Digital Footprint

Employers are increasingly carrying out social media checks on prospective employees. Anticipate this by googling yourself to see what turns up.  Here is where a professional profile on LinkedIn can be enormously helpful to present the best impression. Because of the way Google’s search algorithm works, an optimized LinkedIn profile will frequently show up in the first few places of a Google search for your name.

While LinkedIn is an asset, other forms of social media may harm your search for a new job. Sharing personal information about your treatment through a blog, Instagram, Twitter or Facebook is publicly searchable by potential employers.  Many of us turn to social media sites and blogs to keep our families and friends updated on our progress and to seek support during cancer treatment.  But when your focus returns to work, you may not want your employer or prospective employer to know of your cancer history.

Pro Tip: Take some proactive steps to protect your privacy online.  Set privacy settings on things like Facebook so that nothing can be seen by people who aren’t “friends” (including pages you are a fan of – an often forgotten detail). Delete what you can from your postings on Facebook and other media that talk about your cancer. Set up a Google Alert to monitor mentions for your name.

6. Handling the Job Interview

A job interview is stressful at the best of times, but when you’re anxious about handling the question of cancer, it’s doubly so. Sixty-one percent of cancer survivors looking for a job said they fear disclosing their cancer diagnosis will negatively affect their chances of getting hired.

Rehearsing what you plan on saying ahead of time greatly reduces any anxiety you may feel. The more prepared you are before the interview, the more relaxed and at ease you will appear during the interview. Draw up a list of potential questions and practice your answers.  Accentuate the positive. For now, put aside your worries about how to explain the gap in your resume and spend some time focusing on why you are the right person for the specific job that you are applying for. List at least ten great qualities and skills you have and ask friends and family to help you brainstorm more. Try to find a willing friend or family member who will role-play the interview with you.

Remember you don’t have to disclose your cancer history either on your application or during an interview. The Americans with Disabilities Act prohibits employers from asking job applicants about a disability (this includes cancer) before offering them the job.  However, you may decide you want to be upfront about a work-related absence. If this is the case, you can deal with it by briefly explaining you had some time off work for a health (or family) related reason, but that’s behind you and you’re now looking forward to re-joining the workforce. Keep it simple, stick to one sentence or two and don’t be tempted to digress. Then switch the direction of the questioning back to your skills and qualifications for the job.

Pro Tip: Do your research before going into an interview. By showing off your knowledge of both the company and the industry, you are conveying to the interviewer that you are still up-to-date even if you have been absent from work for a period of time.

7. Considering a Career Change

Cancer changes your outlook on life.  Alongside an increased awareness of the preciousness of time, you may also have decreased tolerance for spending time on meaningless tasks. Many cancer survivors, my own self included, have felt a calling for more meaningful work after their treatment has ended.    I’d like to finish this back-to-work series by sharing the stories of three such people who have used their cancer experience as a way to help others and forged new careers in the process.

Jennifer Elliott was a pre-kindergarten to elementary school age music teacher before being diagnosed with bilateral synchronous breast cancer in 2014. Since her diagnosis, her focus has shifted to patient advocacy.  “My advocacy began when I realized that my access to industry trained people, thanks to where I live and who my friends are, was impacting my care in a positive way,” said Jennifer.   “That made me angry, because we should all have equal access to quality care.  I’m now applying to graduate degree programs in public policy because, as I’m advocating for breast cancer survivors I’ve learned that all the things I’m advocating for are impacted or dictated by policy and if I want to have the broadest impact I need some policy skills and training.”

Terri Coutee was focused on a life-long dream of completing a Master’s program in teacher leadership when she received news of her second breast cancer diagnosis. “The diagnosis was the catalyst to evaluate my professional career,” explained Terri.  “I had to focus on my treatment and major surgery over a period of seven months. This gave me time to re-evaluate, research, and refocus. I learned less than 25% of women and men were not being given their options for breast reconstruction after mastectomy. As a life-long educator, I realized I could educate those affected by breast cancer and learn from my experience. A blog about my successful breast reconstruction experience led to opening a non-profit Foundation to educate a global audience through social media, attending medical conferences, and making as many personal connections as I could to assist others through their own journey. The need is endless because we haven’t found a cure for breast cancer, yet. Until we do, I will continue to educate and provide resources for the very best medical care for others faced with mastectomy.”

At the age of 51, Chris Lewis wasn’t looking for a career change. “I was working for myself and was at the peak of my earning power,” he said. “Then a poor prognosis of incurable blood cancer and my life was turned upside down. I have since had many years of complex treatment meaning I could not return to employment of any description. As my survivorship moved from months to years I needed a purpose. My body was in bad shape but I still had a business mind.”

Unhappy at the poor resources and help for people living with cancer, Chris took to the Internet to voice his displeasure, leading to him running his own successful website Chris’s Cancer Community.  “This led to me becoming a global expert speaker and writer”, said Chris. “I am self-taught in social media and an award winning writer. As a patient advocate I speak at many high profile conferences. Cancer has taken a lot from me, but has shown me a new way of life I would never have experienced. The big bonus is the incredible people I get to meet and talk to daily. It seems even at my age I have found a new career!”

 

Beyond Pink: The Other Side of Breast Cancer Awareness and Lessons We’ve Learned From Each Other

It’s October and the pink frenzy is in full force.  Breast Cancer Awareness Month (BCAM) is impossible to miss given the pink ribbon avalanche that arrives each Fall.  While there is no denying that BCAM has played a significant role over the past two decades in raising public awareness of breast cancer, there is  nevertheless growing criticism of its off-balance approach to awareness-raising, with many key messages becoming lost in a sea of “pink-washing.”  Interestingly, some studies have even found that pink branding may actually lead the public to take breast cancer less seriously.

“The biggest issue I have with Breast Cancer Awareness month is that it’s not even really awareness,” writes Elizabeth McKenzie, who was diagnosed with breast cancer in 2012. “Awareness is mindfulness of all aspects of breast cancer, which to a certain respect, is different for all of us, based on medical differences in disease processes, treatment access, and personal, social-emotional and cognitive processes.”

Much of the criticism centers on breast cancer campaigns which over-sexualise the disease, equating breasts with womanhood and femininity. Rod Ritchie, who was diagnosed with breast cancer in 2014, points out that “October is a bad time for male breast cancer survivors because the trivialisation and sexualisation of the disease by the pink charities reinforces public awareness that breast cancer is gender specific. Since there’s little attempt to educate men that they need to be aware of symptoms too, we are diagnosed later and have a poorer prognosis. So, how about adding some blue to the pink, encouraging research on us, and screening those with a genetic propensity?”

Over a decade ago on an October morning, I was diagnosed with breast cancer; a double reminder each year of the role this disease has played in my own life.   Looking back, I now see that my view of breast cancer was one-dimensional. Standing today on this other side of cancer I see a broader picture, a richer landscape of many shades beyond pink. This post is intended to provide a truer picture of the lives of breast cancer patients in its many varied hues.  Wherever you are in your experience, whether you are caring for a loved one, recently diagnosed, finished treatment, or living with a recurrence or metastatic cancer, I hope this post will speak to you.

Lessons We’ve Learned From Each Other

Some of the most valuable lessons I’ve learned about breast cancer have come, not from my doctors, but from fellow patients. My doctors didn’t tell me about the effect of chemotherapy on my future fertility. I didn’t learn that treatment could damage my heart. And I finished treatment with no clue about late treatment side-effects or the risk of a cancer recurrence.

While valuing her oncologist’s expertise, Catherine Foy, who blogs at My Triple Negative Life, acknowledges that “within the online breast cancer community there will be someone awake somewhere in the world that can provide support and advice. For example, based on someone I followed I got my Vitamin D level checked which was very low and I am now on supplements. Other examples include creating awareness of late treatment side effects and reducing the feelings of isolation that some may experience.”

Liz O’Riordan, a breast surgeon diagnosed with recurrent breast cancer, and co-author of The Complete Guide to Breast Cancer, also refers to the feelings of isolation she experienced during her treatment. “I felt incredibly alone during my breast cancer treatment. I didn’t meet another patient at any of my chemo or radiotherapy sessions. All my advice was from amazing people on Twitter,” she says.  Liz offers this advice to patients undergoing chemotherapy:  “The two best tips I was given to reduce the side effects of chemo were: (1) Drink. Lots. Even when it taste disgusting. Ideally 3 litres a day. Try flavoured water or cordial. Carry a bottle everywhere you go. (2) Exercise. Walk for 30 minutes every day. You’ll hate me for making you. Some days you may have to stop and spit and pant and retch. But do it. You will feel better for it. And they were right. I did feel better.”

Barbara Jacoby of Let Life Happen agrees that we can learn valuable coping lessons from each other. “Whether it is a question of side effects that one is experiencing from a prescribed medication, or questions regarding treatment options or experiences or procedures, if you query a patient support or advocacy group, you are likely to find more answers and information from those who have had actual personal experiences with these issues. There is no doctor or group of medical professionals that has all of the information about real patient experiences and outcomes like any group of actual patients who have dealt with just about anything and everything imaginable on every level,” she says.

Both Catherine and Barbara believe that the information you get online should be shared and discussed with your doctors as the basis of shared decision making (the conversation that happens between a patient and clinician to reach a healthcare choice together).  “I value my oncologist’s advice and experience,” says Catherine, “and would usually discuss with him any new developments that I may have encountered through the various platforms on social media.”

Terri Coutee, a two-time breast cancer survivor, and founder of DiepCFoundation, a non-profit organization providing information on options for breast reconstruction after mastectomy, also embraces the concept of shared decision making and wants others to experience it too.  “I have had chemotherapy, radiation, two lumpectomies, a double mastectomy and breast reconstruction using my own tissue,” she says. ”Each of these occurrences was fraught with difficult decisions and hours of research to optimize my own health care plan. I left offices of various health care providers with armfuls of brochures and information to sort through and organize.”

Terri encourages patients to download the Breast Advocate App, a new tool to aid the shared decision making process.  The app was developed by plastic surgeon Dr Minas Chrysopoulo, whose patient population is primarily those affected by breast cancer or at high risk of developing breast cancer. “Shared decision making is an extremely powerful approach to deciding our treatment plans. Simply put, it empowers us and helps us advocate for ourselves,” explains Terri.  “As patients, we owe it to ourselves to embrace everyday conversations with our health care teams,” she says. “The information on the Breast Advocate app is informative, intuitive, and specific to your individual diagnosis or situation. There are treatment options with evidence-based articles to discuss with your healthcare team. It even features a community section. I encourage you to check out the wealth of shared decision-making information and download the Breast Advocate app to your phone.”

Siobhan Freeney, founder of Being Dense, an organization which raises awareness of Breast Density and its associated links to breast cancer and screening, was completely unaware of the issue until she was diagnosed with breast cancer. “40% of women have Dense Breasts,” she explains. “A Mammogram is the only way to determine and measure Breast Density.  In Dense Breasts the reliability of screening mammograms can be reduced by as much as 50%.”   When you have a Mammogram, the radiologist reading it can tell if you have Dense Breasts.  Siobhan recommends you should ask for a copy of your radiology Mammogram report and ask if your breasts are dense. “If you have Dense Breasts you need to know and you should ask your Doctor/Radiologist about more personalised screening such as Breast Ultrasound or MRI,” she advises.

Metastatic Breast Cancer: The Other Side of BCAM

Learning about metastatic breast cancer (MBC; also called stage 4, secondary, or advanced breast cancer) from online blogs and social media networks was revelatory for me. MBC is breast cancer that has spread beyond the breast — to the bones, liver, brain, or another organ. Even if the cancer is found in another organ, it’s still referred to as breast cancer. Like Beth Gainer, who says, she learned “that anyone who’s been diagnosed with breast cancer is at risk,” I too have found, in Beth’s words, “what the metastatic breast cancer community has had to say has been a real eye-opener.”

MBC has been referred to as a story half-told, the other side of BCAM we don’t hear enough about. As Catherine points out, “For me, breast cancer awareness month is for those who are not yet diagnosed or those newly diagnosed. The pink scene looks to future research and provides good information for those starting or in the midst of treatment. There is less focus on those of us living or dying with breast cancer.”

Nancy Stordahl is unequivocal in her criticism of the failure each October to adequately raise awareness of MBC. “Despite all the pink, all the races, all the pink ribbons, most people still know little or nothing about metastatic breast cancer,” she writes. “No wonder so many with metastatic breast cancer feel left out, isolated, alone and yes, even erased.”

Joanne Taylor, a metastatic breast cancer patient and advocate, is pushing for more information and awareness of MBC.  She created this infographic to show the red flag symptoms of advanced breast cancer.

While metastatic breast cancer is terminal and cannot be cured, because of improved treatments more women are living longer than ever with it. Even so, many misconceptions and lack of information about this diagnosis persist.    “A stranger called Elizabeth Richards contacted me and like many other women she knew very little about MBC, yet the more she found out, the more angry and amazed she became that the illness was side-lined,” says Joanne. “Elizabeth’s view was that as long as metastatic cancer wasn’t mainstream people would not be aware of the limited treatment options available to them. If they knew, they’d demand more.”

One of the biggest misconceptions is that MBC is an instant death sentence. “We thought with BCAM coming up we would do something different to show how people could live well with MBC, so we started the #busylivingwithmets campaign,” explains Joanne. “Elizabeth had the idea, it was positive, it showed what people can do if they have access to drugs and surgery. I was her inspiration! If I can do it, others can as well – if they are given the right options.”

Lessons of Resilience, Connection, and Hope

Cancer can be a lonely and isolating experience, but it doesn’t have to be. “A friend told me to accept whatever help was offered, says breast cancer survivor Connie Rosser Riddle. “It was her way of saying to quit being Superwoman, that it was okay to be in need, vulnerable. It was best to be specific when folks asked, “What can I do for you?” My answer combined what that person was best at and where I needed help, and that made a good fit for both of us.”

Audrey Birt, diagnosed with breast cancer three times, shares lessons of courage, connection and resilience on her blog.  “Cancer taught me I’m more resilient than I would have believed, it helped make me braver,” she says. “It also taught me that life cannot be controlled. This made me more able to live in the moment, and for the moment.  That’s probably not so good for my bank balance but it’s great for my life balance in a way. It taught me to reengage with writing through my blog and in a funny way it changed my life and connection to others. But it also taught me my fragility and that’s a lesson I’m still learning, one day at a time.”

Ultimately however, the lessons you learn will be unique to you. “There is not a single person, story, book, lecture or talk, which will teach us all we need to know to understand the impact of cancer on our lives. That’s what we have to figure out for ourselves when we go through our own cancer experience,” says therapist, Karin Sieger . “Having been diagnosed twice with breast cancer all I can say is try and stay open minded – to your body, the illness, treatment options. You always have choices. Don’t get stuck in fear and don’t get stuck in complacency either. Live your life to the best of your ability and stay true to who you are – with or without cancer.”

Patient Advocacy: 15 Winning Ways to Attract More Readers to Your Blog

Have you ever had the sinking feeling of pouring your heart and soul into writing something you felt sure people will want to read, only to find this isn’t the case? That, apart from your Mom and your best friend, it feels like no one else is reading your blog?

Having your own blog is a powerful way to boost your online advocacy. Blogging shows your commitment and passion for your cause. It’s also an extremely effective way to build a community and engage more people in your cause. However, it can be disheartening to find yourself with so few readers.

If you want more than a handful of people to discover your valuable content, then this post is for you. I’m going to show you how to find more readers for your blog and promote it to a wider audience. The following tips come from my own experience as a blogger over the past nine years, along with tips from some of the smartest patient bloggers I know. I feel sure you’ll find their advice helpful as you focus on growing your own blog and building your readership.

Let’s get started right away with our first tip.

1. Optimize Your Blog’s UX

Let’s begin with how your blog looks. What is the user experience (UX) like for your readers? How easy is it to navigate around your blog? Susan Rahn gave her blog, StickIt2Stage4, a complete overhaul this year. “I updated the template to something that was more aesthetically pleasing and easier to navigate,” she told me when I asked her for her best tips on creating a better blog.

You should check also to see how easy your blog is to read on mobile devices. Does your site load quickly? A good site will load in 2 seconds. If your blog is taking longer than that, consider that around 40% of people will leave a site if it doesn’t load in 3 seconds (check your blog’s loading time with a tool like Load Impact).

2. Provide Helpful Information for Readers

While your blog may contain personal stories about your experience and that of others, it’s also a good idea to provide helpful resources for your readers. “Having pages that have helpful information such as organizations that offer conferences, support or help in some way – either financial or trips is very useful”, says Susan, “especially if you can personally recommend them.” Susan also suggests including a list of other bloggers that you read and can recommend to readers.

3. Make It Easy For Readers to Find Information on Your Site

Providing helpful information is great, but you also need to be sure that readers can find that information. By adding categories and tags to your posts, you make it easy for readers to find the information they need when they come to your blog. It also increases views on your other posts tagged with the same keywords.

4. Hook Your Readers with a Great Headline

When it comes to writing your posts, spend some time creating a great headline. Your headline is the first (perhaps only) impression you make on a prospective reader. A good headline frames your content. No matter how amazing your content is, few people are going to click through to read it if they’re not immediately captivated by your headline. The kind of headlines which perform best include:

  • “How To” – e.g. “How to Prepare for Surgery”
  • List-Style – e.g. “5 Tips for Dealing with Chemotherapy”
  • Questions – e.g. “What is Chemo-Brain?”

Try adding “power” words and phrases to your headline, (such as best, tips, empowering, challenging) to create more engagement. Download a list of 90 headline power words here.

5. Keep Readers’ Attention with Your Introduction

When you have hooked readers with an irresistible headline, you want to keep them reading. Start by asking a question, or share a striking quote, a startling statistic or a personal story. Don’t make the intro over-long or your readers will quickly lose interest. Aim for around the 100-word mark. Make every word count. Establish your rhythm and pace with those first words – you can slow the rhythm down in the body of your post later if you wish.

6. Add Visual Appeal

We live in a visual world. If content is king, then visual content is queen. And when it comes to creating visual content, don’t be tempted to reach for the nearest stock photo. These days there’s no excuse for using boring stock images. In this post I share some of my favorite places to source images for free to enhance your social media posts. A good tip is to create your own graphics with the title of your blog and/or your name and include it each time you share a link to your blog on social media. People will soon start to recognize your own unique “brand.”

7. Maintain a Consistent Posting Schedule

To create and maintain interest you need to post consistently to be able to stay in front of your audience’s eyes. Dee Sparacio, who blogs at Women of Teal, says it’s important to maintain “a pretty regular schedule so your followers are not visiting your page and seeing an old post.” Barbara Jacoby, of Let Life Happen, told me that the only thing that she has ever done to promote her blog was “to consistently write and post a weekly blog and research and post a daily ‘In the News’ article.”

Nancy Stordahl, the creator of Nancy’s Point, also advocates for consistency. “Try to post consistently if you want to develop a loyal readership,” she says. “This takes commitment (work), which means posting on a regular schedule that works for you. This might be weekly, every other week or monthly. This way readers know what to expect, plus it keeps you focused. I post weekly (usually the same day) because that’s what works for me. Consistency is key.”

One of the best ways to keep a consistent schedule is to create recurring content on your blog. Readers will then come to expect and look forward to this content each week. Examples could be creating a weekly round-up post as I do on Journeying Beyond Breast Cancer, or a Monday Motivation post.

8. Leverage Guest Blogging

Whether you invite a guest blogger to blog on your site, or you guest blog for someone else, guest blogging is one of the most effective ways to increase your blog’s traffic. Not only do you get the opportunity to build your authority and increase your visibility, you can also leverage the social following of your guest blogger when you mention them on social media. Beth Gainer, who blogs at Calling The Shots, endorses this strategy. “Offer to guest post for others’ websites,” she recommends. “I have published several guest posts, and my posts have been shared. It’s a great way of having others notice your blog.”

9. Respond to Comments

Have you ever taken the time to leave a comment on a blog and had no response? It’s disappointing and may well discourage you from commenting again. An active comments section is a sign to others that your blog is a community that cares and wants to help each other. Susan Rahn believes that this kind of interaction is important. “It lets readers know you are paying attention and you care that they are reading,” she says.

Take time to comment also on others’ blogs. “By leaving a meaningful comment on a post, you not only build community with others,” says Beth Gainer, “but others can link to and get to know your blog. I try to leave thoughtful comments on others’ blogs because I am a part of a larger community of writers, and it helps to reach out. As an indirect result of my posting comments, bloggers have visited my site and left comments.”

10. Share Your Content on Social Media

Whether it’s a Twitter, Facebook, Snapchat, or an Instagram account, being active on social media is the best way to share your content with a wider audience. Dee Sparacio first set up a Twitter account with the name of her blog, @womenofteal to share her content. Then she started a Facebook page, again using her blog name. Dee advises setting up a specific page for your blog (and not just sharing via your personal Facebook account). “By having this blog page, I have people who follow me for my advocacy work follow that page and not my personal page.”

Susan Rahn also recommends connecting your blog to all your social media accounts. She has added a blog link to her Instagram bio too. “So all I need to do is create an Instagram post and direct followers to the link in my bio.”

11. Re-Share Older Blog Content

According to Susan, “re-sharing a blog post from time to time that is relevant to current events or conversations has been helpful” in growing her blog. “New followers may not have gone back through archives to read past posts so it’s new content for them,” she points out. This is a super tip. I’d add to this by saying that it’s a good idea to go back to the original post and see if it needs updating in light of current news or developments. Do you need to update a statistic or fact? Is there new research you can add to the post? Or a quote or comment to make it even stronger second time round?

12. Make It Easy To Share Your Content from Your Blog

When more people share your content, you increase the chance of driving more visitors to your blog. Make sure your social sharing buttons are clearly visible. By making it easy for visitors to your site to share your content, you increase the likelihood that they will take this action. To generate even more shares, install Click to Tweet, a handy tool which generates one-click tweet boxes or links that can be shared throughout your blog or via email.

13. Grow Your Online Followers

“Seek and ye shall find,” recommends Terri Coutee, founder DiepCFoundation, a non-profit organization providing information on options for breast reconstruction after mastectomy.   “I hold fast to this mantra even after blogging for over 3 years,” she says. “Just as with any business, bloggers must find who is interested in their content. Look for social media communities talking about what your blog content focuses on and cast a wide net. Don’t rely on just a few hashtags and groups. Visit those hashtags, those groups and see who they are connected to. Friend, like, re-tweet, and follow these people. Share your content across more than your own “wheelhouse” because when you least expect it, someone in one of those groups may need what you’re blogging about.”

The more people who follow you on social media, the more you can amplify your content and increase your social shares. Dee Sparacio recommends @mentioning (tagging) a person or an institution whenever you reference their research on your blog. This not only brings their attention to your blog, but it’s also a way to grow your followers. The key here is to find followers who share your interest and will be most likely to share your content. A great way to find like-minded followers is to join a Twitter chat related to your disease or condition, such as #gyncsm, #lcsm, #bcsm, etc. If you’re new to Twitter chats, you can learn more about how to take part here.

14. Use Relevant Hashtags

Hashtags are a powerful way to maintain your visibility on Twitter and Instagram and boost engagement with your followers.  According to Twitter’s own research tweets with hashtags show a 100 percent increase in engagement (clicks, retweets, likes and replies). Hashtags can also expand the reach of your message beyond just those who follow you to help you grow your network. Be sure to include the relevant hashtags when you share a link to your blog on social media. For more information on using hashtags strategically, read Everything You Ever Wanted To Know About Hashtags in Healthcare…But Were Afraid To Ask!

15. Send an e-Newsletter to Subscribers

Newsletters can help keep your blog top of mind with readers. Use it to send an email digest of your most recent blog posts or notify your subscribers when you publish a new post. “I would advise anyone who wants to increase readership to her/his blog to consider sending out a monthly or weekly email with links to new posts and possibly one or two older ones,” recommends Nancy Stordahl. “I became very frustrated with Facebook’s algorithms because it seemed no one was seeing posts I shared. Having your own email list puts you and your readers in control. In my emails, I also share a couple of articles that have been in the news, or that I think might be of interest to my subscribers. Sometimes I share something personal and I often bounce around ideas. I love my subscribers and always value their input!”

Both Susan and Nancy use MailChimp as their email list provider. “I added a MailChimp widget that would popup to invite readers to subscribe (even though they are very annoying),” explains Susan. “Through that widget, I was able to set up an email blast at a predetermined time after a new blog was posted.”

Some bloggers are reluctant to set up a mailing list because they think it’s going to be a lot of hard work. Nancy has this advice to share: “Mailchimp is an easy setup and it’s free up to 2,000 subscribers. And don’t worry about how many subscribers you have. It takes a while to build a list of readers that truly want to read your posts. The ones that stick around are gems. It’s worth the extra work, for sure.”
If you’re interested in setting up your own email list, read How to Build Your Email List The Right Way to learn more.

Be Real, Be Authentic, Be You!

A final piece of advice is to be yourself and write from the heart. In Susan’s words, “Just be authentic. Be true to who you are. Let readers get to know you through your blog as if they are sitting down having coffee and conversation with you.”

Catherine Foy, who blogs at My Triple Negative Life, echoes Susan’s advice. “Be yourself when writing (as if you are talking/giving advice to a friend),” she says. “Don’t concentrate on follower numbers. Engage with like-minded people through social media or chats, follow people or organizations that you admire. Always be true to yourself and treat everyone online with respect.”

While it may be gratifying to have lots of blog readers, those numbers aren’t really what count. “We write for a reason and purpose,” Terri Coutee reminds us, “Telling your story should ultimately have the end goal of making a difference in someone’s life.” Even if you have only a handful of readers, you still have an incredible power. You have the ability to connect directly with every one of those readers and impact their lives. Perhaps it’s one piece of information which you share that’s the missing puzzle piece that someone needs right at that very moment of reading it.

If telling your personal story is the lifeline that even one reader needs to be able to hold on to hope, then your blog will be a precious gift to the patient community. As writer, Connie Rosser Riddle told me, the thing that sustains her blogging is writing from her passion. “Throughout life, I’ve been fascinated by stories, whether they were ones I read in books, or those of real life unfolding,” she explains. “Sometimes my blog posts concern my experience having triple-negative breast cancer. Those stories come from cancer intersecting with daily life, finding meaning in the moments of coping with reality and discovering beauty along the path.”

If you’d like to learn more about setting up your own blog from scratch, check out this guide.