Adrenal Cancer Whole Patient Support Archives

Cancer can unleash a whirlwind of unexpected emotions and experiences for adrenal patients and care partners. You are more than just a patient; more than just a treatment plan.

Treating Cancer Body Mind and Spirit

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This podcast was originally published by WeHaveCancerShow.com by Lee Silverstein on August 13, 2019, here.

By treating cancer by focusing on the body, mind and spirit, Dr. Rob Rutledge makes deep connections with his patients. During our conversation we discussed:

  • The profound impact Dr. Bernie Siegel’s book, Love, Medicine and Miracles had on him and how it helped him realize oncology was his calling.
  • The roles mindfullness, meditation and spirituality play in his life.
  • How he came to realize the importance of support groups.
  • Why focusing on the body, mind and spirit is so important to healing.
  • The three-day retreats that he and Dr. Timothy Walker facilitate.
  • The meaning and importance of integrative medicine.

Links Mentioned In the We Have Cancer Podcast

Healing and Cancer – http://healingandcancer.org/

Love, Medicine and Miracles by Bernie Siegel, M.D. – Love, Medicine and Miracles

The Healing Circle – https://thehealingcircle.ca/

Follow Healing and Cancer on Twitter – https://twitter.com/HealingNCancer

Follow Healing and Cancer on Facebook – https://www.facebook.com/HealingandCancerFoundation/

Follow Dr. Rob Rutledge on Twitter – https://twitter.com/robrutledgemd

 

Social Media for People With Cancer

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This podcast was originally published by Cancer.net with Merry Jennifer Markham, MD, and Danielle Gentile, PhD, on March 5, 2019, here.

 

Dr. Merry Jennifer Markham and Dr. Danielle Gentile recently published a study in the Journal of Oncology Practice that describes potential benefits and drawbacks of people with cancer using social media. Today, we’re going to discuss with them some of the findings from their study, as well as what people with cancer should know about using social media and how it can provide support.

Transcript:

[music]

ASCO: You’re listening to a podcast from Cancer.Net (Cancer dot Net). This cancer information website is produced by the American Society of Clinical Oncology, known as ASCO, the world’s leading professional organization for doctors who care for people with cancer.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement. Cancer research discussed in this podcast is ongoing, so the data described here may change as research progresses.

Monika Sharda: Hello. I’m Monika Sharda, an editor on the Cancer.Net team and your host for today’s podcast. In this episode, I will be talking with two guests about how cancer patients use social media. Our first guest, Dr. Merry Jennifer Markham is a hematologist at the University of Florida in Gainesville. Welcome, Dr. Markham.

Dr. Markham: Hi. Good morning. Thanks for having me.

Monika Sharda: We also have with us Dr. Danielle Gentile, who is a researcher at Levine Cancer Institute in Charlotte, North Carolina. Hi Dr. Gentile.

Dr. Gentile: Hi Monika. Thank you for having us this morning.

Monika Sharda: My pleasure. Drs. Markham and Gentile recently published a study in the Journal of Oncology Practice that describes potential benefits and drawbacks of people with cancer using social media. Today, I’m going to discuss with them some of the findings from their study, as well as what people with cancer should know about using social media and how it can provide support.

First off, I want to know what sparked your interest in studying social media and its use for people with cancer. Dr. Markham, let’s start with you.

Dr. Markham: Sure. So I have had an interest in social media for several years. And some of that stems from my own personal and professional use of social media, primarily platforms like Twitter. And one thing that I’ve noticed is that I’ve connected on Twitter with a lot of patient advocates and colleagues and sometimes people who identify themselves as patients, as well. And there’s a lot of searching for information that happens, I think, on social media. So that has really stemmed my interest in exploring it further as a potential tool for patients, as well as researchers and oncologists and other health professionals, to take advantage of what’s out there.

Monika Sharda: And what about you, Dr. Gentile?

Dr. Gentile: I’ll echo many of the things that Dr. Markham shared. And there’s ways to find so much information through social media, things that a person may not even be directly seeking. They can come across things indirectly and learn that way. So it’s quite interesting to see how people are able to make connections across the country and across the world with people who are in similar situations that they are. And social media is a way to gain some social support in ways that may not be possible in person. So if a person is not feeling well from their cancer diagnosis or treatments, they can reach out online. And through Twitter or Facebook, they’re able to meet others who can share in the experience with them.

Monika Sharda: So what I took away from your study is that social media can sort of be a double-edged sword. There’s potential benefits for patients, but then there are also potential drawbacks. So let’s start by talking about some of the pros. How can social media be helpful to patients?

Dr. Gentile: So there’s a few ways that patients can use social media to their benefit. And one is that it’s great for engagement and empowerment. So it provides a platform for patients to talk about their diagnoses, to search for information, digest what is happening in the world of cancer research as well. And through all of that information and connection with others, it can provide psychosocial support too. So those who are able to disclose some of their thoughts and their feelings and meet with others who share similar stories and are in the same boat, it can be helpful for them to make those connections.

Dr. Markham: I think that that source of support is really one of the invaluable pros to social media. I am a medical oncologist and see patients who have gynecologic cancers. And we live in an area where there’s not a lot of in-person access to support groups. I am never offended when my patients come to me with things that they’ve read on the internet because, unfortunately, it really is a resource that a lot of people rely on. And I think that when my patients are able to connect on social media to other patients with similar diagnoses or similar health experiences, it really allows me to have a better conversation with that patient in the exam room. She can bring me information about what she’s read or what she’s heard from a friend of hers across the country. And then we can have a conversation and I can take care of her better knowing what she knows.

Dr. Gentile: So another pro coming from me from a research perspective is that social media can be a valuable recruitment tool for researchers who are looking for demographics of patients that are pretty specific. So if you imagine a rare cancer diagnosis, it can be hard to find those patients in any small geographic area. But by using social media, those groups can cluster online. So it could be a Facebook support group for a certain diagnosis and a researcher could post on that group and ask if anyone is interested in a potential research study or a trial. And so it’s a way of connecting patients to opportunities to participate in research that their home oncologist and their support team may not be aware of.

Monika Sharda: Absolutely. And what are some of the cons? What should patients be cautious about when using social media?

Dr. Markham: I think one of the real risks of social media is misinformation. It’s very easy for false information or altered information to spread widely on social media, either Twitter or Facebook or otherwise. And sometimes it’s hard for people to distinguish what’s the good information, what’s a quality piece of research, or a true statement about health that can be trusted, versus what is myth and what’s not to be trusted. So distinguishing between good information and reliable health information is certainly one of the risks that I do worry about with, not just patients, but with their caregivers, and, truthfully, health professionals as well.

c And another, with all of that information that patients can find online, is they’re trying to decipher what’s good information, what’s misinformation, and what to act on. It can result in what we call information overload. And that’s when a person has gathered so much information that they become overwhelmed by the amount of the information and they’re not sure how to act on it. So it can lead to this feeling of paralysis or being stuck. And something that we recommend for that is always talking with the clinician. Like Dr. Markham said, she’s not offended when her patients bring her information they’ve learned online. And that’s one of the best resources to determine if information is worthy or not.

And I’ll share another potential con for social media and that is privacy concerns. So pretty much anything that goes onto the internet is for public use. And folks will think about their privacy filters. Do they want only their connections to see it? Do they want it to be widely, publicly available? But one can never be sure, even with those privacy filters, that their information won’t go somewhere they don’t intend it to. So if a person posts on Twitter in a private group thing that they have a certain diagnosis, it can never be for certain that someone in their daily social connections might see that. So anything a person posts online, I would advise make sure that’s something you feel comfortable with everyone knowing.

Monika Sharda: Going back to the idea of misinformation for a minute, you mentioned one way for it to help patients differentiate between what’s worthy information and isn’t is, of course, to talk with your oncologist about it. Talk with your healthcare team. Are there any other tips you can provide patients with how they can differentiate between reliable and unreliable information?

Dr. Markham: So I think looking for the source of information can be helpful. Information that’s put out by American Cancer Society or by ASCO or Cancer.Net, for example, is vetted by clinicians and physicians who, I think, lend some support to that information being trustworthy. There are other sources, such as the National Cancer Institute that shares information regularly on social media. I think it’s when there’s an article in a non-medical journal or not one of these professional organizations that is sometimes hard to see today whether it’s true or not true. And I think in those situations, it really is advisable for patients to take that information to their doctor, to ask more questions about it. I’ve encouraged my patients to go to certain resources online for information. And I’ve also encouraged them to bring me information that they want to know more about. And it’s not infrequent that I have my patients come to me with things that they’ve seen online, whether on social media or otherwise, and it allows us to have a good conversation about what’s true and what’s myth.

Dr. Gentile: It can also be important to think, “What is the motivation behind whomever has posted the certain piece of information?” So if it’s a reliable source, like ASCO or Dr. Markham is posting it, she is a hematologist, she is likely doing that because she wants to share the information for educational purposes and to help the lives of her patients. But there are plenty on social media who have profit motives for sharing information. So it might be some type of miracle cure where taking this product would completely take care of the cancer. And something my mom told me, is true in this situation: if it sounds too good to be true, it is. So be cautious and think about why a person might post something on social media.

Monika Sharda: Those are some really great tips. And Dr. Markham, I think it’s really great how you encourage your patients to talk with you about what they’ve read, what they’ve seen on social media and really encourage that conversation instead of them trying to figure out on their own whether the information that they’re seeing is worthy, is reliable. What would you say is the most effective way for patients to use social media to communicate?

Dr. Markham: So the most effective way, that’s a bit of a hard question because I think there’s probably multiple ways for patients to use social media. I think one reason that I like Facebook for health information, actually, is because there are a variety of groups that are closed and private that patients may discover for health information and, primarily, for support. So I think those are sometimes opportunities. The challenge of those, of course, is is there reliable information being shared. Some groups have healthcare moderators within them and some do not. So that is one of the risks of participating in a group. I think if a patient feels uncomfortable or overwhelmed, they should remove themselves from that situation.

I think on Twitter, there’s an opportunity to participate around hashtags. Hashtags are terms that you can plug into Twitter using the hashtag or pound sign with a phrase behind it, such as #breastcancer. And that is a good way of sort of filtering out information that’s targeted to that type of health problem. And there’s a lot of communities, actually, in the Twitter space built around these hashtags for healthcare where there are routine chats that may happen. Breast cancer actually has a good advocacy group on Twitter centered around the #bcsm, which stands for breast cancer social media. And there are physicians within that community and patient advocates and patients themselves. And it’s, I think, a good starting point for a patient who may be on Twitter and wants to connect with others who have similar interests or similar desires to connect.

Dr. Gentile: And I think it’s also important for any patient who wants to access social media in relation to their cancer diagnosis to spend some time before they enter these platforms and ask themselves, “What are they hoping to get out of the experience?” Is their primary motivation to get social support and meet others in social support groups, or is it looking for new, reliable information? Is it a mix of the two? And then, again, checking in with oneself periodically and asking, “Am I getting what I need, what I was intending to get?” For example, Dr. Markham was saying that if a person becomes uncomfortable or they find the situation overwhelming within social media, fielding many messages, then they can just remove themselves. And one should really go at their own pace and do what makes them feel comfortable and beneficial. There’s no real obligation to respond to folks if you’re not finding it to be beneficial.

Monika Sharda: For someone that’s not too comfortable with social media or has trouble finding relevant hashtags or Facebook groups, do you have any tips for them on how they can seek out these groups and what the relevant hashtags are for them?

Dr. Gentile: Sure. So I’d recommend that a patient get started with some platforms that they know are reliable, valid, good information sources. So, for example, Dr. Markham mentioned the #bcsm, breast cancer social media. And just starting with one hashtag or one support group on Facebook can lead a person down the line to other places to explore. So starting small and then branching out, I think, would be helpful for most cancer patients.

Dr. Markham: ASCO has some good resources, both for patients and for caregivers, I believe. There’s something called Social Media 101 for Patients that ASCO has published. So that’s a good starting point for people who may want to jump into social media period. Also, I think patients who are interested in finding groups may be able to reach out to their oncologist or other physicians to inquire if those physicians know of reputable groups that they could join.

What I find, though, is that a lot of the networking that my patients experience in social media has come from their online sort of word of mouth, which is a little harder to know about. Our social worker in my own clinic is sort of compiling a list of places where patients tend to congregate online so that she can point other patients in the right direction. But I think we still have a lot of work to do in this area to help really guide our patients well.

Monika Sharda: And that actually leads me to my next and final question. I was going to ask you to share some resources for patients to learn more about using social media safely and effectively. So you’ve already mentioned ASCO and the resources they have and also, talking to your healthcare team and your oncologist. Do you have any other resources that you can share?

Dr. Gentile: So I think those are probably two of the most important. I know that I have had patients who have reached out to organizations on social media, such as American Cancer Society and, probably, Cancer.Net may have had this experience as well, asking for information from those groups on who to recommend and how to approach things. So I think that Cancer.Net certainly has lots of good resources. But, really, I think ultimately, just conferring with a physician at the end of the day, to make sure that the space that is being found and using social media in a safe way as a patient, can be a discussion with the physician and patient together.

Monika Sharda: Right. Well, that’s all of the questions I have. Is there anything that, perhaps, we didn’t touch on already that you’d like to talk about?

Dr. Gentile: I’d like to say that it’s going to be different for every patient or every loved one who is caring for someone with cancer, when it comes to social media. And to feel okay with taking it at your own pace. And if you find that you have a piece of information that you are unsure about, the take-home message is to share that with your healthcare team and get that checked out. And to not make big decisions on how you’re going to care for yourself or your loved one solely based on a piece of information from social media.

Dr. Markham: I think that’s an excellent point. And the only other thing I would add is that social media can be scary for those who are just diving in, and I don’t think it necessarily has to be. It’s just a matter of taking it slow, at your own pace, as Dr. Gentile said. And just testing the waters.

Monika Sharda: That’s really great advice. Drs. Markham and Gentile, you’ve shared a lot of great tips with our listeners on using social media and provided additional resources where they can learn more about the topic. It’s been a pleasure having you on this podcast. Thank you so much for joining us today.

Dr. Markham: Thank you so much for having us.

Dr. Gentile: It’s been a great pleasure for me too.

ASCO: Thank you, Dr. Markham and Dr. Gentile. Find more resources on using social media at www.cancer.net. And if this podcast was useful, please take a minute to subscribe, rate, and review the show on Apple Podcasts or Google Play.

Cancer.Net is supported by ASCO’s Conquer Cancer Foundation, which funds breakthrough research for every type of cancer, helping patients everywhere. To help fund Cancer.Net and programs like it, donate at conquer.org/support.

 

Human Connection After a Cancer Diagnosis

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This podcast was originally published by CureToday.org on August 15, 2019, by KRISTIE L. KAHL here.

In this week’s episode of the “CURE Talks Cancer” podcast, we spoke with a melanoma survivor about the importance of community and human connection to build hope after a cancer diagnosis.

Following his stage 3 melanoma diagnosis, Patrick called upon what he had learned to find hope. His first thought: Ok, what’s next?

In this week’s episode, we spoke with Patrick, who is now a three-year melanoma survivor, about the importance of community and human connection to build hope after a cancer diagnosis.

Sexuality During Cancer Treatment

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This blog was originally published by Everyday Health by Diana Rodriguez on February 2, 2010, here.

You can still experience intimacy while undergoing cancer treatment. Understanding the changes you may be experiencing will help ease concerns about your sexuality.

By 

Medically Reviewed by Pat F. Bass III, MD, MPH

Last Updated:  2/9/2010

Cancer treatment can have a huge impact on every aspect of your life, including your sex life. Although intimacy and sexuality may not be top priorities for cancer patients at first, as cancer treatment goes on, it’s likely to become an issue in your relationship. If you’re prepared for some possible changes in your body and your libido, you won’t be surprised by changes in your sex life.

Cancer and Sexuality: Intimacy Issues for Men

Cancer treatment may result in a number of different side effects, which will vary from person to person depending on the type of cancer and type of cancer treatment. Common sexual side effects that male cancer patients may experience during or following treatment include:

  • Low libido
  • Genital pain
  • Reaching orgasm too quickly
  • Nausea, fatigue, pain, and depression that can lead to sexual problems or loss of interest
  • Anxiety or concern about intimacy and sexuality, such as how you will perform or how you look
  • Infertility
  • Inability to release semen during orgasm
  • Erectile dysfunction
Intimacy issues for women will also depend on the type of cancer, its treatment, and the individual. Common sexual problems and concerns of female cancer patients during and after treatment include:
  • Low libido
  • Vaginal dryness
  • Pain during intercourse
  • Tightening of the vaginal muscles, preventing intercourse
  • Infertility and early menopause
  • Possible inability to have an orgasm if treatment has affected the spinal cord

For both men and women, some issues may only be temporary, like low libido and pain during intercourse. Other problems, like infertility, can be permanent. It’s important to discuss these potential long-term issues with your partner and your doctor to find out what can be done to alleviate them or find alternatives, like adoption or freezing eggs or sperm in case of infertility.

Cancer and Sexuality: Preparation and Communication

Many cancer patients may be unprepared for changes in their sexuality and sex life during or after cancer treatment, making these side effects or sexual problems more difficult to address. Before you undergo cancer treatment, talk to your doctor about possible long-term sexual side effects that you can anticipate and what steps can be taken to remedy them.

As you re-engage in sexual relations, be open to new types of sexual contact as well as new positions that may make intimacy more comfortable as well as more pleasurable. Keep in mind that you may need products like vaginal lubricant or moisturizer to help with intercourse.

A healthy sex life is an important part of a healthy relationship, but it is only one part. Communication is also necessary. Worrying about your sex life may only make any problems worse, so talk to your partner about your fears, concerns, and limitations. Realize, too, that there may have been problem issues in your sex life before you received a cancer diagnosis — your relationship might benefit from addressing any prior concerns now, as you and your partner return to intimacy.

Cancer Treatment Making you Feel Sick? Exercise Can Help!

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This blog was originally published by Everyday Health by Denise Schipani on August 13, 2019, here.

Research has confirmed it: Staying physically active during cancer treatment can help you feel less tired and nauseous, tamp down anxiety and stress, and alleviate neuropathy pain.

Medically Reviewed by Thomas Marron, MD, PhD

Last Updated:  8/13/2019

 

For safety, you may want to consider exercising with a friend, caregiver, or trainer.
For safety, you may want to consider exercising with a friend, caregiver, or trainer.

If you’re being treated for cancer with chemotherapy, radiation, or both, you know how taxing this regimen can be. The side effects are well-known: fatigue, pain, nausea, and neuropathy (pain caused by nerve damage), not to mention stress, depression, and anxiety.

Exercise can help you cope, says the American College of Sports Medicine, which certifies cancer exercise trainers in a program it runs in collaboration with the American Cancer Society. Whether you have cancer or are a cancer survivor, exercise can have a positive affect on your body weight, overall fitness, muscle strength, flexibility, and quality of life.

Plus, it appears that exercising makes cancer treatment itself go more smoothly, with fewer side effects. Kerry Courneya, PhD, professor of kinesiology, sport, and recreation at the University of Alberta in Edmonton, Canada, has done numerous studies on the benefits of exercise for cancer patients. Remaining as active as possible during treatment, he notes, can prevent fatigue during and after treatment, and there’s evidence it can also alleviate depression, improve sleep quality, and lessen joint pain and lymphedema (the buildup of lymph fluids under the skin, typically caused by removal or damage to lymph nodes during cancer treatment).

Here’s more about what exercise can do for you during cancer treatment:

Ease Fatigue and Nausea

In a study published in June 2015 in the Journal of Clinical Oncology, researchers at the Netherlands Cancer Institute divided 230 breast cancer patients into three groups. The first group engaged in a moderate-intensity aerobic and strength program, guided by a trained therapist; the second group was assigned to a low-intensity program, done at home; and the third group did no exercise at all. The women in the first two groups, who exercised either a lot or a little, all experienced less fatigue, pain, and nausea during chemotherapy. The women who benefited the most — who were able to tolerate chemotherapy the best — were those in the moderate-intensity program.

Allay Anxiety and Stress

In a report published in June 2016 by the Norwegian Institute of Public Health, a review of more than 100 studies found that exercise can improve cancer patients’ overall quality of life during treatment. For another investigation, conducted in Taiwan, researchers enrolled 116 lung cancer patients in a home-based program in which participants walked for about 40 minutes, three days a week. The study, published in February 2015 in the British Journal of Cancer, concluded that even this moderate amount of exercise over the course of treatment reduced participants’ levels of anxiety and depression.

Alleviate Neuropathy Pain

Chemotherapy-induced peripheral neuropathy (CIPN) is a form of nerve damage that includes burning pain, tingling, numbness, and sensitivity to cold in the hands, feet, or other parts of the body. In a study published in May 2016 in the Journal of Clinical Oncology, researchers randomly assigned patients receiving chemotherapy treatment to either an exercise or no-exercise group. The exercisers did a six-week at-home walking program, supplemented by gentle resistance training, and ultimately reported fewer symptoms of neuropathy.

Prevent Lymphedema

Lymphedema is swelling caused by a build-up of lymph fluid and is a common side effect of cancer surgery, specifically the removal of cancerous or potentially cancerous lymph nodes. Women who’ve had underarm lymph nodes removed as part of treatment for early breast cancer are at risk for this complication (the risk goes up with the number of nodes removed), and doctors often advise them to avoid exercises such as lifting weights.

Unfortunately, this recommendation runs counter to the findings of the Physical Activity in Lymphedema Trial, published in the journal Contemporary Clinical Trials. For this study, women who’d had lymph-removal surgery undertook a year-long program of supervised weight training. The results showed that women at high risk for lymphedema who lifted weights were 70 percent less likely to develop the condition than women at similar risk who did not weight train.

Improve Overall Fitness and Ease Recovery

Someone accustomed to a regular workout routine will find it frustrating to give up exercising during treatment, but even people who didn’t work out regularly before cancer will feel the negative effects of a suddenly sedentary lifestyle, says Robert Steigerwald, an exercise physiologist and certified cancer exercise trainer in Huntington, New York. Chemo and radiation may decrease your endurance, aerobic capacity, and muscle strength, which makes treatment tougher on you physically. Any amount you can work out, Steigerwald says, “puts you in a better place as you recover.”

The effects of exercise on cancer may have even more far-reaching impact, says Dr. Courneya. Researchers are investigating whether exercising improves responsiveness to treatment and long-term survival. “If exercise during treatment were shown to improve these cancer outcomes, I think that would be a game-changer,” Courneya says.

Advice to Keep in Mind Before You Lace Up

All cancers are different, as are all patients. Before you begin or resume exercising during treatment, be sure to talk to your oncologist or consult a cancer exercise trainer, and consider the following:

  • Allow for “down” days — scaling back your workouts, for instance, when you’re experiencing the worst side effects of treatments.
  • If you haven’t been regularly active before your diagnosis, begin with very low-intensity exercise; you might try taking a slow walk most days.
  • Avoid public facilities, such as pools or locker rooms, that may expose you to infection.
  • Avoid exercise or dramatically pull back if you are anemic (your red blood cell count is very low), neutropenic (your white blood cell count is very low), or thrombocytopenic (your platelet count is very low).
  • Consider exercising with a trainer, friend, or caregiver, for safety.
  • Stop working out and seek medical help if you become disoriented, dizzy, nauseated, short of breath, or feel any pain, such as muscle cramps or, particularly, chest pain.

 

My Life Line

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This resource was originally published by MyLifeLine.org here.

Transforming the cancer experience through community and connection

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Dealing with Hair Loss

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This video was originally published by Macmillian.org here.

We have ideas and information about wigs, hats, scalp care and more to help you deal with hair loss.

In these videos, people with experience of cancer and hair loss share their stories. You can also watch tutorials on wigs, headwear and eye make up.

Wigs

Wigs may help you cope with hair loss. There are many different styles and colors available.

Pain Control Support For People with Cancer

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This video was originally published by National Cancer Institute on February 14, 2018, here.

 

Cancer patients and members of their health care team discuss the issues and steps for keeping cancer pain under control. You will learn how to manage cancer pain, how to talk with the healthcare team, the different medicines and methods available, and other ways to get comfortable, taking attention away from pain. The video was produced as a supplement to the NCI booklet, Pain Control, http://www.cancer.gov/cancertopics/co… To learn more about the physical effects of cancer, please visit: http://www.cancer.gov/cancertopics/co… To view NCI’s Pain PDQ, please visit: http://www.cancer.gov/cancertopics/pd…

Healthy Eating, Active Living Videos

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These videos were originally published by the American Cancer Society here.

You may not realize that diet, exercise, and cancer risk are connected. In fact, many cancer deaths could be prevented with a healthy diet and regular physical activity. The videos in the collection below explain how healthy choices can impact your risk, the truth behind cancer myths, and how to incorporate healthy behaviors into your busy life.

 

General Resources

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How To Cope With Cancer-Related Fatigue

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We 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:

  • A constant feeling of tiredness that doesn’t ever go away or get better
  • Being more tired than usual before, during, or after activities
  • Feeling too tired to perform normal routine tasks
  • Feeling general weakness or lethargy
  • Lacking energy
  • Being tired even after a good night’s sleep
  • Inability to concentrate or focus
  • Inability to remember
  • Being sad, irritable or depressed
  • Easily frustrated or angered
  • Trouble sleeping/insomnia
  • Difficulty moving arms or legs

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.

The digital sherpa® Program

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The digital sherpa® Program helps cancer patients and care partners become more tech-savvy in order to be empowered in their health and healthcare decisions. The program is currently carried out in two different versions, either a in-person, hands-on digital sherpa® Workshop or through the creation of a digital sherpa® Help Desk at well known cancer centers.

Cancer patients or care partners who express a desire to become more competent in Internet and social media skills will meet with college students who have been specially trained as Internet “sherpas”. The students will offer help to find support and informational resources online and may include the following:

  • Information about their disease and other health resources
  • How to get help to become a self-advocate
  • Where to connect with other patients
  • How to become more tech-savvy

Please check out the video below that was produced from our pilot program.

2018 Outcomes

In 2018, we carried out this program in partnership with Moffitt Cancer Center and Cancer Support Community, and the infographic below highlights some of the achievements of the digital sherpa® Program.

The Benefits and Pitfalls of Blogging About Your Illness

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In his book, The Wounded Storyteller, Arthur Frank, Professor Emeritus of Sociology at the University of Calgary, writes that when we are ill we are wounded not just in body, but in voice. He describes how illness can radically alter how a person relates to the world and how we need to find a way to restore our fractured identity. When I was diagnosed with breast cancer over a decade ago, writing a blog, Journeying Beyond Breast Cancer, helped me express myself, reconnect to a new sense of self, and find my voice again.

Throughout her life, the writer Virginia Woolf maintained that her work was incomplete until it was shared with readers. And I think this is also true of being part of a blogging community. When we share our writing, someone else has heard our voice. Someone else cares and understands. So often, illness causes us to feel isolated and cut off from others. Blogging is a way for us to find a shared sense of connection and community.

Yet sharing our story online is not without its pitfalls; the most obvious of which is a loss of privacy. You should consider how revealing your medical history online might have an impact on your family and professional circumstances. How will your employer, co-workers, or other family members view you? Do you risk being over-identified with your illness? For me, disclosure of my own story has evolved from initial anonymity to a point where I now choose to share more openly. However, the degree to which I share information still depends on the space where I share it and the degree of trust I have with the people I share with (for instance I consider my blog a safe space to tell my story, but I am more cautious on Twitter). But what happens if that safe space is violated and our expectations of trust are shattered? When our words are taken out of context or used for a purpose we didn’t intend? Is information shared publicly implicitly available to everyone just because it is in the public domain? What are the ethics of research that includes collecting and analyzing patient stories or observing online behaviour without individuals knowing they are being included in research? In an age when technology has outpaced the ethical underpinnings of research and the culture surrounding privacy has changed profoundly, these are questions we need to find answers to.

Although we understand that what we share online is in the public domain, we nevertheless trust each other to maintain a collective sense of privacy, which includes not having our words reproduced without our knowledge or taken out of context. The issue of maintaining privacy in the public domain was brought into sharp focus two years ago when blogger Lisa Adams became the subject of an online debate. Adams, who blogged and tweeted about her experience of living with end-stage cancer, came to the attention of two journalists who strongly criticised what they called “Adams dying out loud.” Their opinions ignited a firestorm of debate about the public disclosure of illness, and the sharing of personal choices surrounding treatment and death and dying.

Illness makes us vulnerable and learning to navigate the digital landscape while also managing our vulnerability is a skill that we need to master if we are to protect ourselves online. Think carefully about what the process of online disclosure entails. Weigh up what you expect to gain from it and what implications sharing this information might have on your career or family life. If you are a parent or carer who writes about a patient, do you have their permission to share this information? In the case of writing about a child, what future effect might this have on one who cannot give consent or understand the significance of their story being shared so widely?

People have always gathered together to share what they know about health and illness, hoping to help and learn from others. What’s new is that we now have the ability to expand the reach of our conversations at internet speed and at internet scale. What happens in real life happens on line, but faster. This has many benefits, but it also means there is a higher potential for unintended consequences when we have less control over who sees our stories. It’s a good idea to periodically review the privacy settings on your social media accounts to decide if you are comfortable with the level of control you have over the information you share. Ask yourself, if your intended audience were sitting in front of you now, how comfortable would you feel sharing this information? How do you think you’ll feel after sharing it? Are you ready for feedback (positive or negative)? Remember sharing your story online doesn’t have to be all or nothing. Go slowly at the beginning, allow trust to build over time, and share only when you feel ready to do so.

Above all, be courageous in sharing your story. I am filled with gratitude for those who bravely blazed the trail in opening the discussion and decreasing the isolation connected with serious illness. I continue to be in awe of the connections and communities forged in the digital space and I look forward to seeing how this will evolve over time.

Seven Steps to a Successful Digital Advocacy Strategy

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Digital advocacy concerns the ways in which you engage your audience online and inspire them to take action around your cause. Using digital tools and applications can amplify your issue, while giving you new opportunities to listen and engage with supporters, and monitor your progress.

Creating a digital strategy will help you focus on your goals more clearly, choose the right digital tools, promote key messages, and measure outcomes more effectively. Ultimately, the right strategy gives you the best chance of using digital channels (like Facebook, Twitter, Instagram, etc.) to reach the right audiences with the right messages at the right times to advance your advocacy.

Step One: Set Your Communication Goals

The first step to any advocacy strategy is to establish clear objectives and goals that you hope to achieve. What are you trying to accomplish? For example, you might want to increase public understanding of the issues you advocate for, mobilize supporters to take action, or raise funds to support your cause. You will need to set SMART goals, which are:

  • Specific
  • Measurable
  • Attainable
  • Realistic
  • Timebound

Specific – define your goals as clearly as possible.

Measurable – put figures on what you want to achieve e.g. increase visits to the website by 40%; gain 100 new Twitter followers or Facebook Likes.

Attainable – make your goal attainable in terms of the resources and capabilities you have.

Realistic – to be realistic, a goal must represent an objective toward which you are both willing and able to work.

Timebound – your goal should be grounded within a time frame.

Step Two: Define Your Target Audience

Who does your message need to reach? Obviously, you want to reach as many people as possible, but by choosing which audience to prioritize in your digital communications you will improve your reach, enhance relevance and put your resources to the best possible use. Find answers to basic demographic questions about your audience, what issues they are concerned with, alongside which online communities inform, inspire, or influence them. You can then tailor your content more specifically to match your audience.

Step Three: Choose the Right Social Channels

Once you’ve identified your target audience, map this information to social media behavior to help determine which social channels to concentrate on. Publically available reports, like Pew Research Center The Demographics of Social Media Users, can help you with this step. Social media are dynamic and constantly changing. When you develop your digital advocacy strategy, be prepared to be flexible. As new networks emerge you might want to add them to your strategy, but it’s important to always relate this back to your goals and your audience to ensure it fits your plan.

Step Four: Create Compelling Content

What is the key message(s) you need to convey to your target audience? How will you communicate it? Sharing the stories of
real people affected by your cause will be the most powerful and compelling content you can create. Share this content via blogs, videos, podcasts, email, etc. Bear in mind the content that works best on the platforms you have chosen. The continuing growth of visual platforms, such as Pinterest, Snapchat and Instagram mean that incorporating visual content into your digital strategy is important. Whichever type of content you create include a clear call-to-action. Make it clear and unambiguous what the next step is after reading or viewing your content; for instance, sign a petition, share on Twitter and Facebook, or donate to your cause.

Step Five: Implementation

Time is probably the biggest challenge in implementing your strategy. To achieve results and credibility you have to be prepared to commit time regularly to producing and promoting content and engaging with your audience. Decide on how much time you can realistically devote to implementation. Do you have time to write regularly for a blog? Would it be better to make short videos instead? Create an editorial calendar and list the dates and times you intend to post blogs, Facebook posts, Twitter updates, etc. Use a scheduling tool, like HootSuite or Buffer, to schedule you social media updates in advance. There are numerous tools and applications, many of them free, which can help you spend your time more efficiently and productively on social media.

Step Six: Monitor Social Media

It’s important to monitor social media on a regular basis to keep on top of what people are saying about you, your organization, campaign, or issue. It also gives you an opportunity to find relevant online discussions related to your cause, allows you to adjust your strategy in real time and guides you to key online influencers and opinion leaders who can help amplify your message. Setting up a simple Google Alert (email updates of the latest relevant Google results based on your queries) with relevant keywords is a good place to start. Use a tool like Hashtracking to monitor a particular hashtag, related hashtags, and the top influencers of that hashtag.

Step Seven: Measure and Evaluate

The final step is to measure and evaluate your progress, adjusting your strategy if necessary. Some key metrics to track are the number of followers you attract and retain, which social media channels drive the most traffic to your website, the number of comments you get, and how many times your updates have been shared. Google Analytics will provide you with detailed analytics to measure your website performance. Each of the main social platforms also has their own analytics built in. Other useful tools include:

  • SumAll measures your Twitter follower growth, mentions, and engagement
  • Klout measures your online social influence via a “Klout Score”, which is a numerical value between 1 and 100.
  • Spredfast measures data gathered from Facebook, Twitter, YouTube, and Flickr, to show how many people you’ve reached and whether or not your target audience is engaging with you.

Final Thoughts

Digital advocacy helps amplify advocacy efforts by potentially reaching more people, in more places, faster than ever before. It works best when it is aligned with your existing offline tactics. Think about how you can integrate your everyday advocacy activities with your digital strategy to maximize impact. Don’t expect digital advocacy to work right away. It is a strategy that will succeed long-term, rather than be a quick success. If you want to see real results, you must be prepared to commit to it long-term. Finally, keep in mind that social media are constantly changing and evolving, and you will need to keep evaluating your strategy to ensure you are maximizing your opportunities to engage meaningfully with your supporters.

A Person Centered Approach To The Care Of Chronic Illness

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The World Health Organization has called chronic conditions ‘the health care challenge of this century’. According to the latest figures released by the Centers For Disease Control and Prevention about half of all adults have one or more chronic health conditions; and one of four adults have two or more chronic health conditions. Long-term diseases, such as heart disease, stroke, cancer, type 2 diabetes, and obesity are the leading cause of mortality worldwide and are estimated to be the leading cause of disability by 2020. A landmark paper, published on 9 July 2016 in Nature Reviews, reports the prevalence of global diabetes has been seriously underestimated by at least 25 per cent.

These figures are alarming, but what is equally alarming is that despite the prevalence and seriousness of the situation, our medical system is not structured to adequately respond to chronic illness. Our current health systems are designed to prevent, diagnose and treat acute medical conditions. The problem is not that people with chronic diseases do not receive care; rather, the acute care model ignores the fundamentally different approach that is needed to care for people with chronic conditions. Furthermore, this model leaves little room for the psycho-social dimensions of chronic illness; it addresses parts of diseases or small sub-parts of the body, but it does not address the person in a holistic way.

How can we begin to address this disconnect in a healthcare system which cares for pieces of people, rather than the whole person?

I believe the answer lies in adopting a person-centered approach to the care of the patient (while you may find the term patient-centered care is more widely-used, I prefer to use the more all-encompassing person-centered care as it focusses on the whole person). Describing the person-centered care approach, Dr Ronald Epstein, MD and Dr Richard Street, PhD characterize it as one in which “patients are known as persons in the context of their own social worlds, listened to, informed, respected, and involved in their care.”

Providing care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions, was recognized as a dimension of high-quality health care in the 2001 Institute of Medicine (IOM) report Crossing The Quality Chasm; An New Health System for The 21st Century as one of six quality aims for improving care. The IOM report drew on research conducted in 1993 by the Picker Institute in conjunction with the Harvard School of Medicine 1 which identified eight dimensions of patient-centered care.

These eight principles provide a roadmap for a person-centered approach to the care of chronic illness.

1. Respect for patients values, preferences and expressed needs

A fundamental tenet of person-centered care concerns putting people and their families at the center of clinical decisions. Each patient brings his/her own unique preferences, concerns and expectations to a clinical encounter and these values should be integrated into decisions if they are to serve the patient. Patients have a right to be part of the decision making process. This is best achieved through the model of shared decision making, the conversation that happens between a patient and their health professional to reach a healthcare choice together. At the very heart of shared decision making is the recognition that healthcare providers and patients bring different but equally important forms of expertise to the decision-making process. Patients and their families will bring their experience of living with a disease, their social circumstances and preferences. This is particularly relevant in chronic health conditions where the patient may have many years of experience of their symptoms and responses to treatments.

2. Co-ordination and integration of care

Research shows that patients highly value coordination of their care, seeing it as an important component of overall quality, especially when they have chronic health problems and complex needs. The reality however, is a patient with a chronic condition often receives care from multiple healthcare providers who may work independently from each other. This fragmented system affects the follow-through and co-ordination of care patients receive.

3. Addressing patients’ information, communication and education needs

Patients differ in their views about how much information they want. In some cases, patients want a lot of information and in other cases patients may delegate decision making entirely to healthcare professionals. The goal of patient-centeredness, according to the IOM report, is to customize information to the specific needs of each individual; that is, to modify the care to respond to the person, not the person to the care. Information needs to be much more easily available and understandable and a concerted effort made to strengthen health literacy for all patients.

4. Physical comfort

Attention to physical comfort implies timely, tailored and expert management of symptoms such as pain or other discomfort. Person-centered pain management takes into account not just the physical aspect of pain, but also the psychological, social, and spiritual aspects of health and disease.

5. Emotional support and alleviation of fear and anxiety

Fear and anxiety associated with illness can be as debilitating as the physical effects. As defined by the Institute of Medicine, patient-centered care attends to the anxiety that accompanies all injury and illness, whether due to uncertainty, fear of pain, disability or disfigurement, loneliness, financial impact, or the effect of illness on one’s family. Chronic illness affects every aspect of our lives and patients face a range of stressors from medical management of our illness, to dealing with changes in family life, work life or student life. The psychological effects of chronic illness can be profound. Individuals with chronic illness are more likely to be depressed, especially those who experience greater levels of pain and disability. In a paper published in the Western Journal of Medicine authors Jane Turner and Brian Kelly examined the emotional dimensions of chronic disease. They concluded that:

  • The emotional dimensions of chronic conditions are often overlooked when medical care is considered
  • Doctors may be well equipped for the biomedical aspects of care but not for the challenges of understanding the psychological, social, and cultural dimensions of illness and health
  • Clinicians can play an important part in helping their patients to maintain healthy coping skills

6. Involvement of family and friends

The sixth dimension of patient-centered care recognizes the key role of families and friends in supporting and caring for a chronically ill person. It focuses on accommodating family and friends on whom patients may rely, involving them as appropriate in decision making, supporting them as caregivers, making them welcome and comfortable in the care delivery setting, and recognizing their needs and contributions.

7. Continuity and transition

Every episode of care involves various individuals and oftentimes multiple transfers between different health care settings. Poor communication during transitions leads to increased rates in hospital readmissions, medical errors, and poor health outcomes. Most patients and family caregivers are not encouraged to play an active role when a transition in their care occurs, even though they are often the only constants in the transition.

8. Access to care

Patients need to know they can access care when it is needed. In interviews conducted by Picker, patients indicated the following areas were of importance:

  • Access to the location of hospitals, clinics and physician offices
  • Availability of transportation
  • Ease of scheduling appointments
  • Availability of appointments when needed
  • Accessibility to specialists or specialty services when a referral is made
  • Clear instructions provided on when and how to get referrals.

Ideally patients should have access to the right service at the right place at the right time. This may take place outside the traditional healthcare setting, as Meredith Dezutter, who applies human-centered design to improve the lives of patients, caregivers and providers through her work at Mayo Clinic’s Center for Innovation, points to: “It may mean making medical knowledge more accessible and supporting local care decisions, offering online support or video appointments or even connecting the patient with resources in his or her community.”

For too long, patients have been grouped into a single homogenized category, and treatment approaches to care generalized. This ignores the reality of chronic illness which presents in different ways. Treatment of chronic conditions requires an individualized, multifaceted approach. Care is enhanced when there is sensitivity for the context of the illness experience. Person-centered care is a method of care that treats the patient as a person within the context of their lives, family and community support, mental and emotional state, beliefs and preferences. It is based on good communication and a partnership approach between clinician and patient with the aim of improving patient self-management, care outcomes and satisfaction. PhD student and health researcher, Doro Bechinger-English, who was diagnosed with breast cancer in 2010, believes that person-centered care facilitates a closer connection between a patient and healthcare provider. “The healthcare professional shows their presence by connecting with me as a patient and a person”, she says. “Person-centered care also means being open to my values, anxieties, concerns and preferences however small or alien they seem to be.”

Redesigning our healthcare systems to adopt a patient-centered perspective is not without its challenges in an acute care system that is primarily reactive, but ultimately doesn’t every patient deserve to be treated in a system in which he or she feels known, respected, involved, engaged, and knowledgeable about their own care?

1 Gerteis M, Edgman-Levitan S, Daley J, Delbanco T. Through the patient’s eyes: understanding and promoting patient-centered care. San Fransisco: Jossey-Bass; 1993