“If you want to go fast, go alone; if you want to go far, go together” – African Proverb
Before the Internet connected people from every corner of the globe, many patients experienced their illness in isolation. The Internet (and social media in particular) has lessened our sense of isolation, helping us feel more connected to others who are going through the same experiences. Online communities may be virtual, but they are no less real in terms of support and influence. We see just how much people are willing to reach out to others to provide advice and support – even to strangers online.
At the heart of a high-functioning social network is a strong sense of community. Social media has accelerated the growth of patient and caregiver communities, allowing people to come together around shared experiences, regardless of time or place. For many of us, finding our online community has made a significant difference to how we cope with our illnesses. From helping us to uncover a diagnosis and finding the right doctors and treatments, to learning about everyday coping tips, turning to our online community can make all the difference.
Your online community can be your eyes and ears, helping you find something you may have missed or not known about. Isabel Jordan, the mother of a son with a rare disease, turned to her online community to help find a diagnosis for her son. “Connecting the dots by seeing them in someone else let me provide valuable clues to our own clinician researchers and now we’re heading down a new diagnostic path”, she says. “Would I have seen them anyway? I don’t know. But I credit my connections on social media for helping me keep my eyes open to new ideas”. Katherine Leon, an SCAD (spontaneous coronary artery dissection) patient, leveraged the power of her online community to find the cause of her rare heart disease, and prevent it from happening to others. At the time of her diagnosis, SCAD was a poorly understood and under-researched condition. Physicians had no clinical studies on which to base treatment plans. Katherine connected with fellow SCAD survivors through social media and used their collective voice to do what hospitals couldn’t – to launch research at the Mayo Clinic.
Five Ways to Find Your Online Community
Are you a newly diagnosed patient or a caregiver wondering where to find your own online community? Here are five practical ways to get started.
(1) Find People to Follow on Twitter
Start by following the Twitter accounts of organizations and groups related to your interest. Go to their website and click on the Twitter follow button if they have one. Once you start following individuals and organizations, Twitter will automatically populate your account with suggestions of similar accounts to follow. You can also view my list of patient advocates on Twitter and add your own name to this list if you wish.
(2) Build Twitter Lists
Twitter can be a little overwhelming to new users. To help you keep track of conversations, it’s helpful to organize your followers into lists; e.g. “organizations”, “researchers”, “patient advocates”, “hospitals”. You can create your own lists or subscribe to lists created by others. Christina Lizaso, a moderator of the #gyncsm Twitter chat, has created several public lists worth subscribing to. See also this comprehensive list of patient chat community members created by Team Intake.Me.
(3) Follow Relevant Conversations
The easiest way to find conversations of interest is to click the native “Search” facility at the top of your Twitter screen and enter your keyword or hashtag, for example #cancer. Hashtags are a useful way to search for health related conversations. 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.”
(4) Join Twitter Chats
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. 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.”
(5) Join Facebook, Google+ and LinkedIn Groups
On Facebook, Google+ and LinkedIn you can connect with other patients and join groups related to your disease or condition. Many organizations have a Facebook and LinkedIn presence and by following their pages you can keep informed of their activities and find other patients to connect with.
When you’ve identified some groups which interest you, don’t feel you have to join in straight away. Take a little time to learn if the group is the right fit for you. Does it appear to be a welcoming and safe space? Are the discussions and norms of the group respectful and in line with your interests and values? “Patients and caregivers seeking to join an online support community should ensure that they feel comfortable browsing a new online group before posting,” according to John Novack, Communications Director for Inspire, a healthcare social network with more than one million registered members. “Be an active lurker in a new group,” he advises, “and if possible, search for the topics most discussed there, because that will give you a sense of the overall focus of that community.” Jo Taylor agrees: “Watch and lurk (i.e. you don’t have to contribute – just read what is said) or join in. It’s up to you,” she says. “Don’t feel pressured to talk, but also don’t feel that you would say anything wrong. It’s a friendly place. Join in and meet others.” You might even find these online connections become friends offline too. “I have met people from all over the world,” says Jo, “but some are in my own town and I see them regularly. Whether you want online connections or face to face, both can happen due to the power of social media.”
7 Ways to Nurture Your Community
If you are moving towards creating an online community, here are seven ways for you to develop your community and help it flourish.
(1) Grow Your Community
A community is grown over time, not built overnight. I reached out to Julia, also a moderator of #BCCWW, to ask about her experience of growing a Twitter chat. She explained that the community will evolve by trial and error, “but it’s important to know what it is you are aiming to achieve and why. If you can get that clear”, she says, “It will follow from there”.
Don’t get hung up on follower numbers. It’s the quality of your interactions and your ability to cultivate meaningful relationships that is key to building a successful online community. As Erin Gilmer, founder of The Research Loop, points out, sometimes it may seem like there are only two people in a Twitter chat, but it turns out to be more, because many patients “lurk” but don’t feel comfortable tweeting openly. “Even if it’s just two of you,” she remarks, “it’s still a community.”
However, if your community is new you will want to build up your initial numbers to get started. Go through your e-mail contacts list and invite relevant people to join your community. Do the same with your followers on Twitter, Facebook, LinkedIn and any other social networks you are active on. Ask existing members to invite their friends. When choosing which social network to communicate on, go for the platform your audience is most familiar and comfortable with.
(2) Provide Valuable Information
Building a sustainable community requires you to provide value and be responsive to the needs of that community. Think about how your group will become the go-to information resource for your members. This means you will need to create and share information on a consistent basis. Don’t automatically assume you know what the group need. Ask questions to better understand their issues and concerns. Invite researchers, physicians and other healthcare professionals to answer questions for your community through Facebook, LinkedIn, Twitter and blogs.
(3) Connect Members to Each Other
As humans we have an innate desire to feel connected with others who are going through the same experiences we are. Clay Shirky, author of Here Comes Everybody: How Change Happens when People Come Together, holds that “the desire to be part of a group that shares, cooperates, or acts in concert is a basic human instinct.” In the future new online tools will come and go, but our innate desire to reach out, to connect, and to help one another will remain. “People seek community online to connect with other people”, says Colleen Young, Director of Community, Mayo Clinic Connect at Mayo Clinic. “If you want to build a thriving community, focus on the people, help them connect and get them talking.” Introduce members to each other and connect like-minded people. Think about how you might create common bonds, cultivate a sense of belonging, and build strong relationship among members.
(4) Listen: Don’t Judge
Do listen to your community and try to address their legitimate concerns. You may not agree with everyone in your group, but try to understand where they are coming from. Determine whether negative comments have any merit. This doesn’t mean you have to engage with trolls or unwarranted criticism. Sometimes people just want to cause drama or discord, so it’s important to put clear policies in place which protect you and your community from abuse.
(5) Reach Out and Support the Community
Collaboration, not control is at the heart of a successful community. Reach out to your members and find out how you can help and support them. Find answers to their questions, retweet, favorite and share their content with others. Equally, don’t try to do everything yourself. Co-create content with your members and ask for help when you need answers and support too.
(6) Nurture Your Community
When you nurture relationships in a human way, they flourish like friendships in our personal lives. Take time each day to interact personally by welcoming new followers, answering questions, acknowledging comments, addressing members by their name and thanking people for contributing to the conversation. Also, take time to acknowledge birthdays, milestones and other achievements.
(7) Be Open, Honest and Transparent
Be open and transparent in all your online activities. Without honesty, you have no trust or credibility. Model the behavior you wish to see in the community. Be willing to self-disclose and encourage self-disclosure in others by creating a safe space for members that welcomes open and honest discussions.
Bonus Tip: Broaden Your Reach
If your goal in creating a community online is to influence policy or improve communication with a wider healthcare audience, you will need to broaden your reach to create impact. “Patient advocates who lead successful online groups and chats have to establish credibility with all stakeholders in a particular therapeutic area, if the advocates want to broaden beyond establishing groups of only patients,” says John Novack. “Some Twitter chat communities like #BCSM, #LCSM and #GYNCSM are powerful”, he notes, “because caregivers, clinicians, and technology leaders are regularly involved.”
Building a community is an ongoing process; it requires an investment of time, and according to Annette McKinnon, “a core group of committed and persistent people.” It’s about building trust, connecting people, and providing valuable information and support over the long-term. Your community is always about something greater than yourself. The best communities will provide a safe space to support each other, mentor and help each other grow. Whether you are joining a group for the first time or starting your own online community, consider how you might contribute your unique experience and expertise to make the group a more connected and inclusive space. Finally, it’s important to have realistic expectations. A community requires “balance, and equanimity; a generosity of spirit; an expectation of complexity; a tolerance of frustration; a desire to listen, and to give,” says Andrew Spong, Lead, Health Equals. “The truth may be that communities are less cohesive than they appear,” Spong reflects, “but they are still the best tools we have to create bonds with others of like minds and experience.”
Related Reading
#PatientChat transcript on online communities
The Leukemia & Lymphoma Society
/in PEN Partner /by Kara RayburnLeukemia Research Foundation
/in PEN Partner /by Kara RayburnMission
The Leukemia Research Foundation’s mission is to cure leukemia by funding innovative research, and to support patients and families. With more than $83M raised in support of this mission, we are on the path to finding a cure – and won’t stop until we do.
Patient Advocacy: Understanding Your Illness
/in AML Blog ND, AML Newly Diagnosed, CLL Blog ND, CLL Newly Diagnosed, FL Newly Diagnosed, General Blog ND, General Newly Diagnosed, LC Blog ND, LC Newly Diagnosed, Marie Ennis-O'Connor, MM Blog ND, MM Newly Diagnosed, MPN Blog ND, MPN Newly Diagnosed, NHL Blog ND, NHL Newly Diagnosed, PC Blog ND, PC Newly Diagnosed, PEN Blog, SC Blog ND, SC Newly Diagnosed, Waldenstrom Newly Diagnosed /by Marie Ennis-O'ConnorThe news that you, or a loved one, has a serious illness can be a terrible blow. You may be faced with an array of emotions ranging from shock to fear to anxiety. You will likely have many questions and concerns about what the coming days and months will bring, and the impact living with this illness will have on your life and the lives of your family. Although you may be reeling from the news, it’s important that you learn as much as you can about your diagnosis, its symptoms, how it may progress and what treatment options are available. In this article, you will learn which questions you should ask your healthcare team and where to find reliable and trustworthy information to become better informed about your health condition.
1. Obtaining Information From Your Doctors And Healthcare Team
Having answers to your questions can help you understand your illness better and feel more in control about your treatment decisions. How much information you want is up to you. Some patients feel overwhelmed by too much information at this stage. Others say they didn’t receive enough information. While information upon first diagnosis is vitally important, you may be in shock and in a heightened emotional state which makes it difficult to fully comprehend all the information you are given. If possible, bring a trusted friend or family member to appointments with you to take notes. If this is not possible, ask your doctor if you can record the consultation so you can focus on listening, and go back and review what was said later.
Medical care is a conversation and to have influence in that conversation you have to speak up. Never be embarrassed to tell your healthcare team if you don’t understand something they’ve said. Sometimes doctors use medical jargon without realizing they are not explaining things in terms we understand. Repeat what the doctor has told you to be sure you understand and ask for clarification if needed.
Some questions to ask your doctor about your diagnosis:
Finally, ask your healthcare team if they can recommend further reading, support groups and other resources to help you learn more about your illness.
2. Finding Reliable Information Online
As you move along the patient journey and better understand your illness, you may want higher levels of information. However, you may find the information healthcare professionals provide has not keep pace with your increased needs. This is the point where many patients turn online to seek more information. While the Internet can be a useful source of health information, it’s important to know how to critically evaluate the information you find online. Always discuss what you find with your healthcare team and ask them to put the information into context for your particular situation.
Here are some questions to help you determine the trustworthiness of online sources of information.
3. Evaluating Medical News Reports
Whether it’s published in hard copy or online, medical news reports can mislead people into thinking a certain drug or treatment is the next breakthrough in a disease. As patient advocates we must learn to read beyond the headlines to filter out the good, the bad, and the questionable.
The following questions will help you evaluate the reliability of medical news reporting.
Always try to read an original study (if cited) to critically evaluate the information presented. Understanding research literature is an important skill for patient advocates. For tips on how to read a research paper click on this link.
4. Learning From Peers
From helping us to uncover a diagnosis and finding the right doctors and treatments, to learning about everyday coping tips, turning to our peers can make all the difference in how we live with our illnesses. Much of this peer-to-peer learning takes place through social media discussions on patient blogs and in Facebook groups and Twitter chats. On Facebook you can connect with other patient advocates and join Facebook groups related to your disease or health condition. On Twitter you have a greater mix of patients, physicians, healthcare professionals and medical researchers coming together to discuss healthcare matters. It is becoming increasingly popular for attendees at key medical conferences, such as ASCO, to “live-tweet” sessions. You can follow along on Twitter using the conference hashtag which you should find published on the conference website. Another way to learn on Twitter is to join a Twitter chat related to your health condition. Twitter chats can be one-off events, but more usually are recurring weekly chats to regularly connect people. There are chats for most disease topics and a full list can be found by searching the database of the Healthcare Hashtag Project.
Final Thoughts
Understanding your illness is the first step on the path to advocating for yourself and others.
Being an advocate involves asking lots of questions, conducting your own research, and making your preferences known to your healthcare team. By doing this, you will be better informed and in a stronger position to get the treatment that is right for you. If this feels overwhelming to you right now, go at your own pace, and reach out to others who have walked this path before you. There is an army of patients who are standing by, ready to share their healthcare wisdom and practical coping tips with you. Seeking their advice will help lessen the fear and isolation you may be feeling, give you a sense of shared experience and connection, and help you feel more in charge of your healthcare decisions.
How To Boost Your Online Advocacy Through Blogging
/in Marie Ennis-O'Connor, PEN Blog /by Marie Ennis-O'ConnorAre you looking for a way to boost your advocacy activities online? One of the best ways to do this is to create a blog. Many patients blog about their illness as a way to advocate for better treatment and care and to provide guidance and support for other patients. Blogging shows your commitment and passion for your cause. Because a blog is interactive (by allowing readers to post comments) it is also an extremely effective way to build a community and engage more people in your cause. If creating a blog is part of your plans for 2018, but you are not quite sure where to start, this step-by-step guide will get up and running in no time at all.
Step 1 Choose a Blogging Platform
The first step is to choose your blogging software. Free blogging platforms are designed to be easy to use with pre-existing templates which you can personalize. Popular platforms include Blogger, Tumblr and WordPress. I use a WordPress site for my blog Journeying Beyond Breast Cancer. The free version at WordPress.com is a good option if you want to try out blogging with little or no financial outlay. If however, you would like more functionality and the freedom to host your blog yourself, then you should choose WordPress.org. I will focus on setting up a WordPress blog throughout this guide.
Step 2 Choose a Domain Name
Your domain name (also known as your URL) is your address on the web. Choose a domain name that is short, memorable and descriptive. If you choose the free version of WordPress, your domain name will look something like this: yourname.wordpress.com. If you wish to omit ‘WordPress’ in the url, you have an option to pay an annual premium which costs around $18.
Step 3 Pick a Web Host
Web hosting is where your website lives on the internet. Every online site needs web hosting. If you choose WordPress.com your blog will automatically be hosted by WordPress. If you decide to go with WordPress.org you will have to purchase hosting with a separate hosting company. There are many hosting companies to choose from, but the only hosting service officially recommended by WordPress is BlueHost.
Step 4 Install Your Blog
If you have chosen the free version of WordPress your blog will be installed automatically. If you have purchased a hosting account, your provider will walk you through the steps needed to get your WordPress blog up and running.
Step 5 Configure Your Blog Settings
Now it’s time to set your blog’s title, tagline, language and visibility options.
Go to the General Settings of your WordPress dashboard.
The first setting you will see is Site Title. Your site title can be anything you’d like – it doesn’t have to be the same as your blog’s URL or your username.
Tagline is next and is a short description to describe what your blog is about. For example, the tagline of my blog is “Making Sense of The Breast Cancer Experience Together”. Until you personalize your tagline the default is displayed as follows:
The Language option lets you select the language you wish to use on your blog.
Finally, the Privacy settings control your site’s visibility. Set this to Public if you want to be found by search engines.
Step 6 Design Your Blog
Designing your blog is the fun part and it starts with selecting a theme. WordPress has a wide range of paid and free themes for you to choose from. You can sort themes by filters like “popular”, “latest”, “featured” as well as several other filters. New themes are always being added so you can change your theme as often as you like. Clicking on a theme’s thumbnail will show you a preview of that theme so you can see how it will look before you activate it.
You can customize your chosen theme by adding your own header image if you wish, for example a picture of you or the logo of your organization.
Once you have selected your WordPress theme, you are now ready to create your first blog post.
Step 7 Creating Your First Blog Post
To write a blog post, click on the Posts » Add New menu in your WordPress dashboard. Enter your post title in the upper field and enter your post body content in the main post editing box below it.
Click on Add Media to include an image, document, audio or video file in your post.
Adding Categories and Tags to your posts will help you organize your blog posts. Categories are the general topic area you are writing about. Readers can browse specific categories to see all posts in the category. Tags refer to micro-categories for your blog. Posts with similar tags are linked together when a reader clicks one of the tags. Here is a sample of some of the most commonly used tags on my blog.
The Preview button allows you to view your post before you publish it. You can save a draft of your post and come back later to edit or add more content to it. When you are happy with how your post is written, you can publish it either straight away, or you can schedule it for publication on a future time or date. You can also change the publish date to a date in the past to back-date posts.
How long should a blog post be?
There’s much debate on whether short or long blog posts work better. If you want your blog to rank on Google, then longer is better. This is because longer articles will contain more keywords, headings, links, and pictures. Aim for something between 1000 to 1500 words, but at the very least, your blog posts should be more than 300 words for Google to rank it. Just make sure that posts are easy to read by breaking up long text with headings, bullet points, short paragraphs and images.
A note on Posts vs Pages
Often WordPress beginners get confused between Posts and Pages. Posts are entries that display in reverse order on your blog. As you add more posts, older entries are moved further down and become less visible. Pages (such as About or Contact Me pages) are static and remain visible to readers. To create a new page, go to Page -> Add New in your dashboard.
Step 8 Attract Readers to Your Blog
Don’t get disheartened if visitors don’t flock to your blog right away. It takes time to build your readership, but there are a few things you can do to increase your blog’s visibility and attract more readers.
1. Post your content on social media
The best way to attract more readers is to post your blog content on social media. However don’t just post a link to your latest post – include images, pose a question, or add a startling statistic that will encourage readers to click on your link to find out more.
2. Make it easy to share your blog
To expand your blog’s reach on social media, encourage readers to share your posts after they have read them. Make it easy for them by adding highly visible social sharing buttons to all your posts.
3. Hook your readers with compelling headlines
Your headline is the first impression you make on a prospective reader. Just as we judge a book by its cover, we often judge a blog post by its title. It’s fine to start writing your post with a working title, but when you have finished writing it, go back and spend some time creating a headline that will entice readers to click through and read the post. For tips on creating compelling headlines click here.
4. Use keywords in your blog posts
If you want to attract new readers to your blog, you want to make sure they’ll be able to find you when they search online. It’s important therefore to include keywords in your content if you want to rank higher for particular search terms.
5. Comment on other blogs
Most blogs have comment sections which allow you to comment with your blog’s url. Leaving a comment which adds to the conversation is a good way to interest others to click through to your blog.
6. Write a guest post for an established blog
Offer to write a guest post for a blogger with an established readership. Include your blog’s url in your guest post. Search engines like Google index blogs when they find them mentioned (in the form of links) on sites they have already ranked. The more high-quality links your blog has, the higher Google will rank you.
7. Maintain a consistent posting schedule
You need to post regularly to stay in front of your audience’s eyes and grow your readership. Maintaining a regular publishing schedule means you should pace your posts so that there is something new to read on a consistent basis.
To wrap up, blogging is an extremely effective way to show people what you are passionate about and committed to. If you want to boost your online presence and grow your advocacy in 2018, starting a blog in the New Year is a great place to start.
Happy Blogging!
Do you blog? Do you have any other tips to offer novice bloggers? Please share your tips and your blog’s url in the comments below.
Lung Cancer Initiative
/in PEN Partner /by Kara RayburnLung Cancer Initiative is the leading nonprofit in North Carolina that provides support to the lung cancer community by connecting patients, survivors, and loved ones with the medical and research community. Our mission is to advance survivorship and provide support to those affected by lung cancer through research, education and access programs.
Lung Cancer Research Foundation
/in PEN Partner /by Kara RayburnMission
The mission of the Lung Cancer Research Foundation (LCRF) is to improve lung cancer outcomes by funding research for the prevention, diagnosis, treatment and cure of lung cancer.
Vision
Our vision is a world free of lung cancer.
History
We can accomplish more together than one of us can alone. That’s why LCRF has merged with like-minded organizations over the years. Here’s our history at a glance:
LUNGevity
/in PEN Partner /by PEN Editorial StaffWe focus on research because the link between research spending and improved survival is clear. Survival rates have dramatically improved for colorectal, breast, and prostate cancers over the last several decades in step with the exponential growth in their research spending. Our goal is to accelerate progress for lung cancer in the same way, in order to dramatically improve on the current 17% five-year survival rate.
To date, LUNGevity has funded 110 research projects at 57 institutions in 23 states. LUNGevity research investments focus on early detection, because survival rates rise when lung cancer is detected while still localized. We also focus on more effective treatment approaches—getting the right treatment to the right patient at the right time to help people with lung cancer live longer and better.
Our projects are translational, moving basic research from the lab to patient treatment. We fund the projects most likely to have the greatest benefit for patients in the near term. Thanks to our Scientific Advisory Board—a group that includes leaders in early detection, genomics, proteomics, immunotherapy, biostatistics, and thoracic surgery—research project applications are rigorously reviewed in a robust, transparent process and then funded projects are carefully monitored. Through ongoing work with researchers across the various institutions, LUNGevity maximizes the progress and impact of ongoing studies.
LUNGevity also provides a community of empowerment, support, and hope for everyone affected by lung cancer through our extensive educational resources, online peer-to-peer support, and in-person survivorship programs, as well as more than 80 grassroots awareness and fundraising events held from coast to coast each year.
Lymphoma Research Foundation
/in PEN Partner /by Kara RayburnThe Lymphoma Research Foundation (LRF) is the nation’s largest lymphoma-focused health organization devoted to improving care through education and support services and improving outcomes through investment in the most promising lymphoma research. LRF’s mission is to eradicate lymphoma and serve all those impacted by this blood cancer.
Fact or Fiction: 10 Common Breast Cancer Myths Busted
/in BC Blog ND, Breast Cancer, Marie Ennis-O'Connor, PEN Blog /by Marie Ennis-O'ConnorOctober is Breast Cancer Awareness Month, and while many of us may think there is already plenty of awareness of breast cancer these days, it’s quite surprising how many myths exist alongside the facts. Some breast cancer myths still continue despite a lack of evidence. A survey found that agreement with the phrase: “It seems like everything causes cancer” is on the increase. The danger is that when people believe this, confusion and misinformation about risk factors also increase. This can lead to unnecessary worry and can even hinder good prevention and treatment decisions. So let’s untangle the facts from the fiction by busting ten of the most common myths which persist about breast cancer.
Myth #1: Finding a lump in your breast means you have breast cancer
Fact: Most breast lumps are caused by benign (noncancerous) changes, cysts, or other conditions.
Breast tissue is changing all the time because of fluctuating hormone levels, especially during times of menstruation and breastfeeding. It’s important to be aware of how your breasts normally look and feel, and know what changes to look for.
Take Action: While most breast lumps will not turn out to be cancer, lumps that feel harder or different from the rest of the breast (or the other breast), or change over time, should always be checked by your doctor.
Myth #2: Feeling pain in your breast is a symptom of breast cancer
Fact: Most breast cancers do not cause pain in the breast (although some do).
Many women experience breast pain or discomfort in the week leading up to their period. The pain usually goes away after menstruation. Other breast conditions, such as mastitis (an infection of the tissue of the breast that occurs most frequently during breastfeeding), may cause a more sudden pain.
Take Action: If you have breast pain that is severe or persists and is not related to the menstrual cycle, you should be checked by your doctor.
Myth #3: Breast cancer is a hereditary disease
Fact: Only 5% to 10% of breast cancers are thought to be hereditary. The other 90% are largely due lifestyle and environmental factors.
The risk in a person believing this myth is that they might think there is nothing they can do to prevent breast cancer if it is already in their family. Genetic testing can help you understand your inherited risk and allow you to make choices about your future care.
Some high-risk women also choose to have a prophylactic mastectomy to decrease their risk.
Take Action: Cancer is a complex group of diseases with many possible causes, including lifestyle factors such as smoking, diet, and physical activity. Lower your risk of developing breast cancer by maintaining a healthy weight, exercising regularly, and limiting the amount of alcohol you drink.
Myth #4: Only women get breast cancer
Fact: While the incidence of breast cancer in women is significantly higher than in men, men can get breast cancer.
Many people don’t think of men as having breasts. In fact both men and women have breast tissue, although men have much smaller amounts than women. According to the National Breast Cancer Foundation, men carry a higher mortality than women do, primarily because awareness among men is less and they are less likely to assume a lump is breast cancer, which can cause a delay in seeking treatment.
Take Action: Know the signs of male breast cancer. Symptoms include a hard lump underneath the nipple and areola and color change in the surrounding area.
Myth #5: Breast cancer only occurs in post-menopausal women
Fact: While it is true that the older a woman is, the higher her breast cancer risk becomes, breast cancer does occur in younger women.
Although breast cancer in young women is rare, more than 250,000 women living in the United States today were diagnosed with it under age 40[1]. In young women, breast cancer tends to be diagnosed in its later stages and be more aggressive. Young women also have a higher mortality rate and higher risk of metastatic recurrence (return of breast cancer in areas beyond the breast).
There is no effective breast cancer screening tool yet for women under 40, most of whom have dense breast tissue that prevents routine mammograms from being a useful screening tool.
Take Action: Being breast aware is very important. Become familiar with how your breasts normally look and feel and, if you notice a change, you should see your doctor as soon as possible.
Myth #6: Wearing an underwire bra causes breast cancer
Fact: Claims that underwire bras cause breast cancer have been widely debunked as unscientific.
According to the myth, wearing your bra every night or for too long daily prevents your pores from being able to breathe. Sweat accumulates and toxins build up which are believed to cause breast cancer. Another version of this myth is that wearing a bra which is too tight or sleeping in your bra can cause breast cancer. The American Cancer Society (ACS) states “we do not know of any epidemiologic studies published in scientific journals that suggest bras directly contribute to breast cancer.”
Myth #7: Deodorants can cause breast cancer
Fact: There is no evidence to back the claims that deodorants and antiperspirants cause cancer.
People sometimes worry about whether chemicals in common products such as cosmetics or toiletries could cause cancer, but there is no good scientific evidence to show that these products affect the risk of cancer. According to Breastcancer.org, even the strongest antiperspirant doesn’t block all perspiration in the armpit. Most cancer-causing substances are removed by the kidneys and released through urine or processed by the liver. Toxins are cleared by lymph nodes and not by the sweat glands.
Take Action: If you still have concerns about the link between antiperspirants and breast cancer, see the NCI fact sheet on Antiperspirants/Deodorants and Breast Cancer for more information.
Myth #8: Breast cancer is a single disease
Fact: Breast cancer is not one disease, but a complex group of different types of tumours.
Until quite recently, breast cancer was thought of as one disease, so everybody got much the same treatment, which led to overtreatment for some patients. We now know that at a molecular level tumors act and respond to treatments differently. Researchers have to date classified breast cancer into 10 different subtypes. Having a more detailed system of tumor categories can help tailor treatment to individual patients and predict women’s survival more accurately.
Myth #9: Stress causes cancer
Fact: The scientific evidence that stress causes cancer is not conclusive.
Despite studies which show weak evidence of an association between stressful events and a diagnosis of cancer, many people still hold the belief that stress is a factor in causing cancer. It’s unrealistic to think we can avoid stress completely. Everyone feels stressed at some point in their lives. But long periods of stress can cause mental health problems such as anxiety and depression and can contribute to physical health problems such as high blood pressure, heart disease, and ulcers. It makes sense then to get our stress levels under control.
Take Action: Adopt healthier coping mechanisms, such as learning stress-management techniques, taking the time to eat healthily and exercising more.
Myth #10: Mammograms cause breast cancer
Fact: While mammograms do involve radiation exposure, the dose used is extremely low.
A mammogram (an x-ray of the breast) currently remains the gold standard for the early detection of breast cancer. Mammograms can detect lumps well before they can be felt, and the earlier that lumps are caught, the better one’s chances for survival. While it’s true that radiation is used in mammography, the amount is so small that any associated risks are tiny when compared to the benefits.
Take Action: According to the National Cancer Institute, the standard recommendation is an annual mammographic screening for women beginning at age 40. Base your decision on your physician’s recommendation and be sure to discuss any remaining questions or concerns you may have with your physician.
To wrap up, certain myths about breast cancer, though inaccurate, can nevertheless seem to make sense when we hear them repeated often enough. While some risk factors for breast cancer are out of our control, knowing and understanding our risks will help us make the best choices possible for ourselves and our loved ones.
[1] Young Survival Coalition statistics on breast cancer in younger women.
For information on galactocele, please check out the blog What is a Galactocele, and What Can I Do About It? and 12 Breast Cancer Myths And Facts You Should Be Aware Of
MD Anderson Cancer Center
/in PEN Partner /by PEN Editorial StaffThe mission of The University of Texas MD Anderson Cancer Center is to eliminate cancer in Texas, the nation, and the world through outstanding programs that integrate patient care, research and prevention, and through education for undergraduate and graduate students, trainees, professionals, employees and the public.
We shall be the premier cancer center in the world, based on the excellence of our people, our research-driven patient care and our science. We are Making Cancer History.
12 Keys to Finding, Growing, and Nurturing Your Online Community
/in Marie Ennis-O'Connor, PEN Blog /by Marie Ennis-O'Connor“If you want to go fast, go alone; if you want to go far, go together” – African Proverb
Before the Internet connected people from every corner of the globe, many patients experienced their illness in isolation. The Internet (and social media in particular) has lessened our sense of isolation, helping us feel more connected to others who are going through the same experiences. Online communities may be virtual, but they are no less real in terms of support and influence. We see just how much people are willing to reach out to others to provide advice and support – even to strangers online.
At the heart of a high-functioning social network is a strong sense of community. Social media has accelerated the growth of patient and caregiver communities, allowing people to come together around shared experiences, regardless of time or place. For many of us, finding our online community has made a significant difference to how we cope with our illnesses. From helping us to uncover a diagnosis and finding the right doctors and treatments, to learning about everyday coping tips, turning to our online community can make all the difference.
Your online community can be your eyes and ears, helping you find something you may have missed or not known about. Isabel Jordan, the mother of a son with a rare disease, turned to her online community to help find a diagnosis for her son. “Connecting the dots by seeing them in someone else let me provide valuable clues to our own clinician researchers and now we’re heading down a new diagnostic path”, she says. “Would I have seen them anyway? I don’t know. But I credit my connections on social media for helping me keep my eyes open to new ideas”. Katherine Leon, an SCAD (spontaneous coronary artery dissection) patient, leveraged the power of her online community to find the cause of her rare heart disease, and prevent it from happening to others. At the time of her diagnosis, SCAD was a poorly understood and under-researched condition. Physicians had no clinical studies on which to base treatment plans. Katherine connected with fellow SCAD survivors through social media and used their collective voice to do what hospitals couldn’t – to launch research at the Mayo Clinic.
Five Ways to Find Your Online Community
Are you a newly diagnosed patient or a caregiver wondering where to find your own online community? Here are five practical ways to get started.
(1) Find People to Follow on Twitter
Start by following the Twitter accounts of organizations and groups related to your interest. Go to their website and click on the Twitter follow button if they have one. Once you start following individuals and organizations, Twitter will automatically populate your account with suggestions of similar accounts to follow. You can also view my list of patient advocates on Twitter and add your own name to this list if you wish.
(2) Build Twitter Lists
Twitter can be a little overwhelming to new users. To help you keep track of conversations, it’s helpful to organize your followers into lists; e.g. “organizations”, “researchers”, “patient advocates”, “hospitals”. You can create your own lists or subscribe to lists created by others. Christina Lizaso, a moderator of the #gyncsm Twitter chat, has created several public lists worth subscribing to. See also this comprehensive list of patient chat community members created by Team Intake.Me.
(3) Follow Relevant Conversations
The easiest way to find conversations of interest is to click the native “Search” facility at the top of your Twitter screen and enter your keyword or hashtag, for example #cancer. Hashtags are a useful way to search for health related conversations. 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.”
(4) Join Twitter Chats
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. 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.”
(5) Join Facebook, Google+ and LinkedIn Groups
On Facebook, Google+ and LinkedIn you can connect with other patients and join groups related to your disease or condition. Many organizations have a Facebook and LinkedIn presence and by following their pages you can keep informed of their activities and find other patients to connect with.
When you’ve identified some groups which interest you, don’t feel you have to join in straight away. Take a little time to learn if the group is the right fit for you. Does it appear to be a welcoming and safe space? Are the discussions and norms of the group respectful and in line with your interests and values? “Patients and caregivers seeking to join an online support community should ensure that they feel comfortable browsing a new online group before posting,” according to John Novack, Communications Director for Inspire, a healthcare social network with more than one million registered members. “Be an active lurker in a new group,” he advises, “and if possible, search for the topics most discussed there, because that will give you a sense of the overall focus of that community.” Jo Taylor agrees: “Watch and lurk (i.e. you don’t have to contribute – just read what is said) or join in. It’s up to you,” she says. “Don’t feel pressured to talk, but also don’t feel that you would say anything wrong. It’s a friendly place. Join in and meet others.” You might even find these online connections become friends offline too. “I have met people from all over the world,” says Jo, “but some are in my own town and I see them regularly. Whether you want online connections or face to face, both can happen due to the power of social media.”
7 Ways to Nurture Your Community
If you are moving towards creating an online community, here are seven ways for you to develop your community and help it flourish.
(1) Grow Your Community
A community is grown over time, not built overnight. I reached out to Julia, also a moderator of #BCCWW, to ask about her experience of growing a Twitter chat. She explained that the community will evolve by trial and error, “but it’s important to know what it is you are aiming to achieve and why. If you can get that clear”, she says, “It will follow from there”.
Don’t get hung up on follower numbers. It’s the quality of your interactions and your ability to cultivate meaningful relationships that is key to building a successful online community. As Erin Gilmer, founder of The Research Loop, points out, sometimes it may seem like there are only two people in a Twitter chat, but it turns out to be more, because many patients “lurk” but don’t feel comfortable tweeting openly. “Even if it’s just two of you,” she remarks, “it’s still a community.”
However, if your community is new you will want to build up your initial numbers to get started. Go through your e-mail contacts list and invite relevant people to join your community. Do the same with your followers on Twitter, Facebook, LinkedIn and any other social networks you are active on. Ask existing members to invite their friends. When choosing which social network to communicate on, go for the platform your audience is most familiar and comfortable with.
(2) Provide Valuable Information
Building a sustainable community requires you to provide value and be responsive to the needs of that community. Think about how your group will become the go-to information resource for your members. This means you will need to create and share information on a consistent basis. Don’t automatically assume you know what the group need. Ask questions to better understand their issues and concerns. Invite researchers, physicians and other healthcare professionals to answer questions for your community through Facebook, LinkedIn, Twitter and blogs.
(3) Connect Members to Each Other
As humans we have an innate desire to feel connected with others who are going through the same experiences we are. Clay Shirky, author of Here Comes Everybody: How Change Happens when People Come Together, holds that “the desire to be part of a group that shares, cooperates, or acts in concert is a basic human instinct.” In the future new online tools will come and go, but our innate desire to reach out, to connect, and to help one another will remain. “People seek community online to connect with other people”, says Colleen Young, Director of Community, Mayo Clinic Connect at Mayo Clinic. “If you want to build a thriving community, focus on the people, help them connect and get them talking.” Introduce members to each other and connect like-minded people. Think about how you might create common bonds, cultivate a sense of belonging, and build strong relationship among members.
(4) Listen: Don’t Judge
Do listen to your community and try to address their legitimate concerns. You may not agree with everyone in your group, but try to understand where they are coming from. Determine whether negative comments have any merit. This doesn’t mean you have to engage with trolls or unwarranted criticism. Sometimes people just want to cause drama or discord, so it’s important to put clear policies in place which protect you and your community from abuse.
(5) Reach Out and Support the Community
Collaboration, not control is at the heart of a successful community. Reach out to your members and find out how you can help and support them. Find answers to their questions, retweet, favorite and share their content with others. Equally, don’t try to do everything yourself. Co-create content with your members and ask for help when you need answers and support too.
(6) Nurture Your Community
When you nurture relationships in a human way, they flourish like friendships in our personal lives. Take time each day to interact personally by welcoming new followers, answering questions, acknowledging comments, addressing members by their name and thanking people for contributing to the conversation. Also, take time to acknowledge birthdays, milestones and other achievements.
(7) Be Open, Honest and Transparent
Be open and transparent in all your online activities. Without honesty, you have no trust or credibility. Model the behavior you wish to see in the community. Be willing to self-disclose and encourage self-disclosure in others by creating a safe space for members that welcomes open and honest discussions.
Bonus Tip: Broaden Your Reach
If your goal in creating a community online is to influence policy or improve communication with a wider healthcare audience, you will need to broaden your reach to create impact. “Patient advocates who lead successful online groups and chats have to establish credibility with all stakeholders in a particular therapeutic area, if the advocates want to broaden beyond establishing groups of only patients,” says John Novack. “Some Twitter chat communities like #BCSM, #LCSM and #GYNCSM are powerful”, he notes, “because caregivers, clinicians, and technology leaders are regularly involved.”
Building a community is an ongoing process; it requires an investment of time, and according to Annette McKinnon, “a core group of committed and persistent people.” It’s about building trust, connecting people, and providing valuable information and support over the long-term. Your community is always about something greater than yourself. The best communities will provide a safe space to support each other, mentor and help each other grow. Whether you are joining a group for the first time or starting your own online community, consider how you might contribute your unique experience and expertise to make the group a more connected and inclusive space. Finally, it’s important to have realistic expectations. A community requires “balance, and equanimity; a generosity of spirit; an expectation of complexity; a tolerance of frustration; a desire to listen, and to give,” says Andrew Spong, Lead, Health Equals. “The truth may be that communities are less cohesive than they appear,” Spong reflects, “but they are still the best tools we have to create bonds with others of like minds and experience.”
Related Reading
#PatientChat transcript on online communities
MDS Foundation
/in PEN Partner /by Kara RayburnThe Myelodysplastic Syndromes Foundation was established by an international group of physicians and researchers to provide an ongoing exchange of information relating to MDS.
A major Foundation effort is the international information network. This network provides patients with referrals to Centers of Excellence, contact names for available clinical trials, sharing of new research and treatment options between physicians, and extension of educational support to physicians, nurses, pharmacists and patients.
In response to the needs expressed by patients, families, and healthcare professionals, they have established patient advocacy groups, research funding, and professional educational initiatives.
The MDS Foundation is a publicly supported organization, exempt from federal income tax under section 501(C)(3) of the IRS code.
How To Cope With Cancer-Related Fatigue
/in Adrenal Cancer, Adrenal Cancer Blog WPS, Adrenal Cancer Whole Patient Support, AML Blog WPS, AML Whole Patient Support, Appendix Cancer, Appendix Cancer Blog WPS, Appendix Cancer Whole Patient Support, Bone Cancer, Bone Cancer Blog WPS, Bone Cancer Whole Patient Support, Brain Cancer, Brain Cancer Blog WPS, Brain Cancer Whole Patient Support, CLL Blog WPS, CLL Whole Patient Support, Eye Cancer, Eye Cancer Blog WPS, Eye Cancer Whole Patient Support, FL Blog WPS, General Blog WPS, General Whole Patient Support, LC Blog WPS, LC Whole Patient Support, Marie Ennis-O'Connor, MM Blog WPS, MM Whole Patient Support, MPN Blog WPS, MPN Whole Patient Support, NHL Blog WPS, NHL Whole Patient Support, PC Blog WPS, PC Whole Patient Support, PEN Blog, SC Blog WPS, SC Whole Patient Support, Waldenstrom Blog WPS /by Marie Ennis-O'ConnorWe all know what it’s like to feel tired – physically, mentally and emotionally, but usually after some relaxation and a good night’s sleep, we are ready to take on the world again. When you have cancer, though, rest often isn’t enough. Fatigue caused by cancer and its treatments takes a toll on your stamina along with the emotional effects of cancer. Being diagnosed with cancer is highly stressful and we know that stress affects your state of mind, your sleep, and your energy levels too. Even after adequate sleep or rest, you still feel tired and unable to do the normal, everyday activities you did before with ease. You experience a persistent, whole-body exhaustion. You may find it hard to concentrate or to engage in your usual activities.
What is cancer-related fatigue?
Cancer-related fatigue (CRF) is increasingly recognised as one of the most common and distressing side effects of cancer and its treatments. It has a negative impact on work, social relationships, mood, and daily activities and causes significant impairment in overall quality of life. It has been estimated that from one quarter to nearly all cancer patients experience fatigue during and after treatment. Although CRF generally improves after therapy is completed, some level of fatigue may persist for months or even years following treatment. Studies of long-term breast cancer survivors suggest that approximately one-quarter to one-third experience persistent fatigue for up to 10 years after cancer diagnosis.
Some symptoms of cancer-related fatigue, according to the American Cancer Society are:
What medical help is available for cancer-related fatigue?
A lot of cancer patients do not report fatigue to their doctors because they think that nothing can be done for it. In fact, there are things that can be done to alleviate the debilitating effects of CRF. If left untreated, fatigue may lead to depression and profoundly diminish your quality of life, so it’s important that you speak to your doctor if fatigue is an issue for you.
Before you can address CRF specifically, your doctor needs to determine if there are any underlying medical issues which may be contributing to your fatigue. For example, if you are anaemic, you may need to take nutritional supplements like iron. Sometimes fatigue is confused with depression. It’s important, therefore, to be evaluated to distinguish between the two. You may experience one or the other, or both at once. But they are not the same. You may need treatment for depression before you can adequately deal with your fatigue.
6 Everyday Strategies To Cope With CRF
Making some adjustments to your everyday routines can also help you cope with CRF. Here are 6 ways to do this.
1. Make deposits in your ‘energy bank’
Don’t expect to be able to do what you could do before cancer. Know your limits and don’t expect too much of yourself. You may find it helpful to think of your energy reserves as your ‘energy bank’. Whenever you do an activity you make a withdrawal. And when you rest you make a deposit. It’s important to balance withdrawals with deposits. If you keep doing too much whenever you feel like you have energy, you’ll run out completely and not have any reserves left for the things that are important.
2. Plan your day
Planning is key when you have fatigue. Write a ‘To Do’ list each evening so you can prioritize the things you need to do the next day. By prioritizing in this way, you can use your energy on the activities most important to you. Spread your activities throughout the day during times when you feel best and take rest breaks in between activities.
3. Keep a fatigue diary
Keeping a fatigue diary – where you score your fatigue each day on a scale from 1 to 10, and record your activities – can help you think about patterns in your energy levels throughout the day. This can make it easier to plan your activities for the times when you have more energy.
4. Do some regular light exercise
Although exercising may be the last thing you feel like doing, if you don’t exercise, you’re more likely to experience fatigue. In fact, a new study found that exercise and psychological interventions may be powerful tools in combatting cancer-related fatigue. Research has shown that there are many benefits to exercise. Not only does it help reduce the symptoms of fatigue, exercise encourages your body to release endorphins – often called ‘feel good hormones’. When released, endorphins can lift your mood and sense of well-being.
5. Eat healthily
When we are exhausted, we tend to gravitate towards processed, junk food which depletes our energy reserves further. Follow a well-balanced diet (high in protein and carbohydrates, low in sugar) and drink plenty of fluids to avoid dehydration.
6. Adjust your work schedule
Talk to your employer about making adjustments to your work schedule. Discuss the possibility of flexible working hours, reduced working hours or working from home. Ask colleagues to help you with some of your work. Talk to your occupational health adviser if you have one. They have a duty to support you doing your job and help you with any health problems that may affect your work.
Though fatigue is a common symptom when you have cancer, there are steps you can take to reduce or cope with it. There’s no one way to diagnose or treat cancer-related fatigue. Try some or all of these coping tips until you find what works for you.
Introducing Darla Brown: An Empowered Patient
/in Empowered Patient, Patient Stories, PEN Blog, Women Patient Stories /by Darla Brown“People with cancer who actively participate in their fight for recovery along with their physicians and healthcare professionals will improve the quality of their lives and may enhance the possibility of their recovery. Combining the will of the patient with the skill of the physician – A powerful combination.” ~ Harold Benjamin, PhD, 1982
In 2010 I became very sick. I was losing weight, had excruciating pain in my pelvis, and had extremely heavy, abnormal menstrual bleeding. I went to a doctor to get help. Unfortunately, that was just the beginning of my healthcare saga. I went through several late nights in emergency rooms (often sent away with painkillers), to more ultrasounds than I could count, to countless specialists, and yet the pain and other symptoms only worsened.
The first doctor I visited assumed the culprit was an ovarian cyst and each subsequent doctor I saw took her word for it. I should admit something at this point in my story. Up until this point, I tended to be passive about my health care. I didn’t question diagnoses or treatments. When so many doctors agreed on my diagnosis, how could I question them? However, when I eventually became “patient active” (a term that I later learned), it actually saved my life.
One sleepless night, I woke up on the floor of my kitchen. The anemia (a result of the abnormal menstrual bleeding) had caused me to pass out while getting a glass of water and I had hit my head. I went back to the doctor the next day and insisted more tests be done. I implored, “Please don’t send me home again without a real diagnosis.” I demanded something be done. This was my first step to becoming an empowered patient.
Empowered patients realize that they have to make the healthcare system work for them. Through my experience I realized:
I was finally diagnosed with stage 2 cervical cancer and found a wonderful healthcare team at Cedars-Sinai Cancer Center. I didn’t have insurance at the time (I was too sick to work and this was before the ACA/Obamacare) but I did qualify for a California state run program called the Breast and Cervical Cancer Treatment Program (BCCTP).
By the time I actually got into treatment, the tumor had grown and had positioned itself inside my cervix so that surgery to remove it was no longer an option. Instead, I went through two months of daily external radiation, weekly internal radiation (also known as brachytherapy), and weekly chemotherapy treatments. I am so grateful that it was treatable, and I am thankful for the healthcare system that made it so. However, had I been properly diagnosed and treated earlier on, I would have required less invasive and less expensive treatments.
Since my diagnosis and recovery, I have spoken to many patients about their experiences and I am honored to be invited to share those stories and lessons in future blog posts.
mohuman
/in PEN Partner /by Kara Rayburnmohuman is at the forefront of the movement to ensure that children and families in low-income communities have the digital resources they need to thrive and realize their full potential. Their mission is to help digitally underserved individuals and families access digital services to improve their lives.