General Whole Patient Support Archives

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

Whether your concerns are physical, emotional, nutritional, or spiritual, we can help.

More resources for General Whole Patient Support from Patient Empowerment Network.

Take Care of Yourself and Your Family’s Health

Building Resilience and Boosting Immunity

At a time when health is top of mind for everyone, despite the stressors, how can we ensure to emerge emotionally, physically and mentally resilient? Patient Empowerment Network Care Partner Manager, Sherea Cary sits down with distinguished guests, Sara Goldberger and Dr. Shivdev Rao to discuss building resilience and boosting immunity. Both experts define resilience, provide tips for boosting heart-lung health and provide useful tools for cultivating resilience.

Defining Resilience

Defining Resilience from Patient Empowerment Network on Vimeo.

Tips for Boosting Heart and Lung Health

Tips for Boosting Heart and Lung Health from Patient Empowerment Network on Vimeo.

Community Resources & Tools for Cultivating Resilience

Community Resources and Tools for Cultivating Resilience from Patient Empowerment Network on Vimeo.

Oncology Social Worker Checklist

Resiliency Checklist During the Time of COVID-19


Sara Goldberger, MSSW, LCSW-R, has been an oncology social worker for 30 years. Currently she is the Senior Director, Program for the Cancer Support Community Headquarters. She has also worked in hospitals and community NFP settings. She is a member of several Advisory Boards is a frequent presenter and author. As AOSW strives to continue to advance excellence in psychosocial oncology, Sara hopes to play a part in efforts to educate, advocate, develop resources, expand on research initiatives, and create networking opportunities so that AOSW can improve the care of people impacted by a cancer diagnosis.

Turning Your Home Into a Sanctuary

In Five Simple Steps

These days, whether you’re spending more time there or you need a place to unwind after a long day, you need to feel like your home is your happy place. With the help of a few simple tips you can turn your home into your very own sanctuary.

1. Define your sanctuary

Think about where and when you feel the most comfortable and happy; then bring elements of that into your space. Whether you feel your best reading under a cozy blanket and low lighting, or painting in a sunlit room, consider your needs for the space. It doesn’t have to be complicated, says Professional Organizer Kristy Potgieter at KLP Organizing, LLC. Her philosophy is: simple is better.

2. Appeal to the senses

Sound, smell, and color can all evoke emotions. Play music that soothes you or makes you happy, use candles, oils, or incense to fill your space with your favorite scents, and paint your walls with neutral or calming colors. Even changing out your light bulbs can make a difference. Pink light bulbs give a warm, calm glow to your space.

3. Ditch the clutter

Clutter causes anxiety and stress so your best bet is to get rid of it. While clutter looks different to everyone, a good rule of thumb is to remove anything that doesn’t serve a purpose or make you happy. For the things you use on a regular basis, Potgieter recommends storing them in baskets and bins, which can be both decorative and functional. She also says keeping your kitchen counters clear is a simple way to make your home appear clutter-free.

4. Bring nature inside

You can place a vase of fresh-cut flowers on your table or bring in some house plants. If you don’t have a green thumb, a photo of the ocean, a wall painted green, a water fountain, some seashells, or a piece of wood are all okay ways to incorporate nature into your home. It can be as simple as opening a window and letting in the sunlight, which is a known mood booster.

5. Unplug from technology

You don’t have to ban technology altogether, but pick times, such as during meals and the hour before bed, to not use technology at all. Spend less time on social media platforms by deleting the apps on your phone and only using your computer to log onto those sites. You can also use the “do not disturb” settings on your devices to allow yourself some down time.

 

Whatever you do, remember Potgieter’s philosophy and keep it simple. Address the things that are most important to you and let the other stuff go. “The first thing I think of when making a home a sanctuary is really taking a look around and making sure all the things you see are things you love,” she says.

Daily Practices for Cultivating Awareness and Anchoring Yourself in Resilience

Resilience is our capacity to bounce back from the inevitable challenges of being alive. When challenges arise, our meandering minds can take us into various worrisome directions, leading to a host of negative emotional states and their subsequent adverse effects on our well-being.

Although we may not have control over the external factors in our lives or needless to say our genetic predispositions, we do have the capacity to cultivate inner psychological faculties that enable us to weather the storms of life with relative calm. For most of us, these internal resources are underdeveloped. They require intentional cultivation through the regular practice of actions that support their development. Among these inner resources are self-awareness, self-acceptance, and a secure inner base to fall back on.

What is Resilience?

What is Resilience? from Patient Empowerment Network on Vimeo.

Anchoring the Mind

Anchoring the Mind from Patient Empowerment Network on Vimeo.

Focusing the attention on the natural breathing process and body cultivates self-awareness and tends to have a calming effect on the mind. By doing so non-judgmentally, we accept the process as it is truly experienced. This is not an advocation of apathy towards our lives. To the contrary, by shining the light of awareness on our experience and accepting it as it truly is, we are given a clarity from which to make any necessary course corrections in our lives.

Awareness of Breath

Awareness of Breath from Patient Empowerment Network on Vimeo.

Awareness of Body

Awareness of Body from Patient Empowerment Network on Vimeo.

A secure base is supported by continually returning our attention to our breath and body when distracted by the meandering nature of the mind. By regularly practicing the activities here offered you can enhance your capacity to bounce back and calmly weather the fluctuating trials of life.


Broderick Rodell has a PhD in chemical engineering from the Georgia Institute of Technology and a Doctorate of Naturopathic Medicine from Bastyr University. His search for self-betterment led to his passion for mindfulness. He considers himself a dedicated student and practitioner of yoga including contemplation, meditation, breath work, and mindful movement. Broderick believes that through individual evolution we can all tap into greater possibilities within ourselves.

PEN-Powered Activity Guide

How Can You Best Support A Friend With Cancer?

What happens when someone close to you has been diagnosed with cancer?

How do you find the right words to say?

What is the best way to support them?

And how do you cope with your own emotions and feelings at the same time?

In this month’s article, I am sharing advice that comes directly from those who have personal experience of cancer – either as a patient themselves or as a friend or family member to someone with cancer.  The following tips are some of the things that friends said and did that were most helpful to cancer patients at the time of diagnosis and treatment.

Firstly, acknowledge that this can be a hard time for you too

Hearing that a friend has been diagnosed with cancer may impact you in ways that you might not be prepared for.  You may have many different emotions to cope with. You may feel angry, sad, and scared that this is happening to your friend. You may even find the news hard to take in and feel numb.   Breast cancer survivor, Nicole McClean[1] describes her feelings of numbness on hearing the news that her best friend was diagnosed with the same disease:  “I didn’t know what to feel. I didn’t know what to say. Everything I had said to other people didn’t really apply because this was MY friend. Not a stranger that I was comforting. Not even myself that I had to give a pep talk to.”

But don’t make it about you

In the shock of hearing about a friend’s diagnosis, it can be tempting to slip into a place of dwelling on your own fears and anxieties.  Nicole cautions others not to make this about themselves. “Please don’t be a friend like me. Don’t be the friend who makes the person with the diagnosis have to stop her own grieving to console you,” she says. “This is her moment. Her time to BE consoled. I don’t ever want her to feel like she needs to console me or comfort me during this time. That’s no longer her role. It is now mine.”

Just ask what’s needed

“My number one tip,” says radiation oncologist, Dr Matthew Katz (@subatomicdoc),  is “just ask what you can do to help. It can be hard to predict and may vary at different times in the cancer experience.”  Breast  surgeon, Dr Deanna Attai (@DrAttai) agrees: “Ask the patient what do you need, ask if they just want some company to sit, listen and be present.”

Above all, advises author and advocate, Nancy Stordahl (@NancysPoint) “don’t try to be a fixer and please, avoid using platitudes. Don’t tell her she’s strong, brave or courageous. Don’t add to her burden by making her feel she must live up to some gold standard of “doing cancer right”. Let her be real. Witness her pain. Listen. Just be there.”

Listen, hear and do

“The steps to being a good friend and supporter are simple”, says Nicole, “Listen and do.”  The first part is listening. “Listen to her. Or just sit with her silently. But either way, give her space where she’s comfortable sharing with you what’s in her heart without that moment becoming about you.“  

John Moore (@john_chilmark), founder of Chilmark Research, echoes this when he says: “Listen, truly listen and they will open up in time to the fear they hold within – just how scary it can be at times.”

Julia, co-founder of online breast cancer support community @BCCWW agrees. “Listen and hear,” she advises,  “if they have bad days let them, cancer isn’t fun times. Flip side: if they feel good, believe them.”

And it’s ok to not know what to say sometimes.

“Something that I think is helpful is for friends and family to remember that it’s okay if you don’t know what to say to the person with cancer,” explains Lisa Valentine (@HabitgratLisa), ·who blogs at habitualgratitude.com. “Show up, say “I don’t know what to say, but I am here for you.” Take it from there. Showing up and listening usually takes care of what can happen next.”

HER2 breast cancer patient, Tracy (@tracyintenbury) suggests offering to go to “chemo sessions if the person with cancer would otherwise be attending alone.”  Metastatic breast cancer patient, Ilene Kaminsky (@ilenealizah) appreciated those who attended medical appointments with her “especially during the first months when everything seemed to proceed at the pace of tar, and again during critical appointments/ chemo days.”

Do what needs to be done

Don’t ask her what she needs, just do something that she needs,”  recommends Nicole. “Show up, and help out.” Chair of Cardiomyopathy, CR UK patient board and NCRI rep for kidney and bladder cancer, Alison Fielding (@alisonfielding) agrees: “Make specific offers of help such as lifts, company or chores rather than waiting to be asked.”

“Anyone who said let me know if you need anything wasn’t going to get an answer,” explains Ilene “so during difficult times, one or two of my friends would do my wash, change the sheets and put the clothes away. She’d bring me smoothies while I’d be knocked out from my pre-taxol Benadryl and knew exactly what I’d like.”

Clinical Professor of Pathology, Dr David Grenache (@ClinChemDoc), cautions following through with offers of help. “From experience: when you tell them you will do what you can to help, then follow through with that when you are asked for help.  You may have to drop a high priority task but when the call for help comes. Go!” 

Victoria (@terrortoria), founder and community manager of @YBCN_UK (which supports young women with breast cancer), recalls a friend who “made home made soup for me when I told her I couldn’t bring myself to eat things. She left them on my doorstep as I couldn’t bring myself to see people either for a time. It was a 90-minute round trip for her. She’d listened to how I felt and then helped me within my limits.”

This theme of cooked meals comes up again and again. 

“Cook meals so the person with cancer has something warm and nutritious,” recommends Tracy.  Maureen Kenny (@MaureenKenny1), a patient living with secondary breast cancer, agrees, saying “you can never go wrong with a cooked meal.”

After a long day in hospital, breast cancer patient advocate, Siobhan Feeney (@BreastDense)  recalls the day she came home to find “in the porch, cooked dinner, homemade bread, marmalade and fresh eggs.” A gift she says she’ll never forget. 

Alleviating the pressure of cooking and housework is a super practical way to help a friend with cancer. Sarah Connor (@sacosw), shares a story about her neighbor who “came once a week, took away a basket of dirty clothes, brought them back washed, dried, ready to put away. She didn’t know me very well. Still makes me tingle.”

Give thoughtful gifts

From warm socks and soft blankets to body lotion and lip balm, there are many gifts you can bring a friend who is going through treatment. Beverly A. Zavaleta MD[2], author of Braving Chemo, writes:  “Each time someone sent me a gift I felt a connectedness to the giver and to the “outside world,” which was a welcome escape from the cancer world that I was living in… when I received a gift, I appreciated the time that that person took to remember me, to think of what I might need and to choose, assemble or make the gift.”

Breast cancer survivor, Karen Murray (@murraykaren) recommends practical gifts like “hand cream (skin very dry after chemo), gel for mouth ulcers (also common), some nice sweets/fruit.”

Male breast cancer survivor, Dennis Keim (@denniskeim) suggests “a jar of Aquaphor might be a nice gift. Especially if their skin is getting hammered by chemo.”

“Help the cancer patient pamper themselves,” proposes Lisa Valentine. “You know your friend or family member well enough–get them something they wouldn’t get themselves because they would think it’s extravagant–i.e. the expensive chocolate or a pedicure.” What may seem like an indulgence can also be extremely practical. “Taking me for gel nails protected my ever softening nails,” explains Ilene Kaminsky.

Although be mindful that not everyone appreciates the same things. 

“I wasn’t interested in toiletries, candles. Wine gums – they mask the taste of a nasty pre-chemo antiemetic,” says Syliva (@SylviaB_). “People often think buying flowers is naff. I adored it when people bought me flowers. A couple of people bought spectacular flowering plants.”  Breast cancer blogger, Sheri[3] received the fabulous gift of a monthly subscription to in-home flower deliveries during treatment.

Help with treatment decisions

If you have already been through cancer yourself, your friend may turn to you for treatment advice. You can guide them to helpful resources  and share your own experience, but ultimately the final decision is theirs alone. Sometimes you may not agree about treatment decisions. This can be hard for both of you. Try to accept this and support their decision. “I think not being critical with someone’s choices is very important. Support should not be in spite of circumstances,” says Ilene Kaminsky.

Offer compassion and kindness

Two-times breast cancer survivor and patient advocate Terri Coutee[4] believes the best gifts you can offer a friend is compassion and kindness. “Hold a hand if you are with a friend or loved one in person,” she advises. “You don’t even have to say anything. Perhaps your warm, human touch is enough. Tell them you have no idea how they are feeling at the moment but want to support them in any way you can. Be sensitive to the fact they may only need someone to listen, not advise.”

John Hanley (@ChemoCookery) considers “small practical actions and warm, soothing, short reassuring words are perfect.” Words like “I’m going nowhere and I’ll be here shoulder to shoulder when you need me. A little note/text/card “Here for you 24/7 anytime.”A HUG, an Embrace, a hand, eye contact.”

Sara Liyanage, author of Ticking Off Breast Cancer [5]  reminds us that “a cancer diagnosis turns your world upside down and overnight you can become scared, emotional, vulnerable and anxious. Having friends and family step up and show kindness is a lifeline which can carry you through from diagnosis to the end of treatment (and importantly, beyond).”

Treat your friend like you normally would

Researcher, Caroline Lloyd (@TheGriefGeek), cautions us not to “make it all about the cancer, they are still a person.”  Writer and metastatic breast cancer patient, Julia Barnickle (@JuliaBarnickle) agrees. “I prefer to keep conversation as normal as possible for my own sake – I don’t want cancer to take over my life.”

Stage 4 melanoma patient advocate, Kay Curtin (@kaycurtin1) suggests you talk to your friend “like you would any friend. We haven’t suddenly become aliens who require a different style of language,”  she points out.  Sherry Reynolds (@Cascadia), whose Mom is a 15-year metastatic breast cancer patient, talks about how her mother “really appreciated it when people talked to her about regular things vs always talking about her cancer or asking how she was doing. She was living with her cancer, it wasn’t who she is.”

Know when to back off

“What I didn’t want, which is equally important, was people trying to encourage me to go anywhere or do anything,” says Syliva (@SylviaB_).“ I spent a lot of time on my sofa and felt guilty saying no to people who wanted me to go out.”

Knowing when to be there for your friend, and when to give them space isn’t always easy.  but it’s an important balancing act as a good friend.  In Tips for Being A Great Cancer Friend, Steve Rubin,[6] points out that “sometimes, the overstimulation from nurses popping in, PT sessions, and all the tests/drug schedules can become so exhausting that you just want to be left alone. Other times, the loneliness kicks in and you could really use a friendly face.”

It may take time to find the right balance, so let your friend guide you.   Nicole McClean shares her experience with her friend: “I haven’t spoken to her a lot. I didn’t want to become that sort of pesky, well-intentioned friend who searched for every little thing that might show how she was feeling at any particular moment.  Because I know that her feelings would change from moment to moment and sometimes… sometimes it’s just too much to have someone repeatedly ask you… “how are you really feeling?” even when you know they mean well. At this point, I am letting her guide me into how much she needs me and where she wants me to be.”  

At the same time, Terri Coutee advises gentle persistence:  “Don’t give up if you offer help and they don’t respond. Revisit your offer to do something for them with gentle persistence. One day they may decide they need your help,”  she says.  Maureen Kenny recalls “a friend who texted me every time she was about to go shopping to see if I needed/wanted anything while she was out. I rarely did but I always really appreciated her asking.”

Make your support ongoing

Support is not just one and done.  In the shock and drama of a crisis, friends rally round, but once the shock has worn off many disappear. True friends stick around long after the initial days, weeks and months of a cancer diagnosis. Ilene asks that friends continue to“remember birthdays, cancerversaries, and remember me on holidays. A card means a lot even to just say hi.”

Final thoughts

Many studies have found that cancer survivors with strong emotional support tend to better adjust to the changes cancer brings to their lives, have a more positive outlook, and often report a better quality of life. Research has shown that people with cancer need support from friends. You can make a big difference in the life of someone with cancer. [7]

“I personally loved just knowing I was cared for, says lobular breast cancer campaigner, Claire Turner (@ClaireTTweets). “A number of friends didn’t contact me or come and see me and that hurt, so simply be there in whatever way means something,” she advises.

“The truth is basic,” says Nicole McClean, “nobody wants somebody they love to go through cancer. Especially if they’ve been through it themselves. You want people you love to be spared this type of hardship. But you can’t protect them from it. You can only help them through it. Be there for them in the ways that they need.”

Tailoring your help to what your friend needs and enjoys most is the best way to be a friend to them. As four-times cancer survivor Sarah Dow (@he4dgirl) points out “the answers will surely be as varied as we are, both in life generally, our experience of cancer, and our connection with our friend.”


[1] Nicole McClean. My Fabulous Boobies.

[2] Beverly A. Zavaleta MD, The Best Gifts For Chemotherapy Patients

[3] Life After Why

[4] Terri Coutee, DiepCJourney

[5] Sara Liyanage, “What To Do (And What Not To Do) For Someone With Breast Cancer”

[6] Steve Rubin, The (Other) C Word

[7] American Cancer Society, “How to Be a Friend to Someone With Cancer”

Understanding Patient-Centered Care via Alliance for Patient Access

The Alliance for Patient Access created a video to help you understand patient-centered care.

Complete Guide To Mindfulness

Suja Johnkutty Hi there ! I’m Suja Johnkutty, MD a conscientious mom and neurologist . My one simple goal is to provide you honest, practical, simple action steps to experience better relaxation in your life. betterrelaxation.com

About the New Normal

This podcast was originally published by BBC You, Me & the Big C on 13 September 2018, here.

 

In Rachael’s final podcast with Deborah and Lauren they discuss the ‘new normal’.

This term is commonly used by doctors and cancer communities when people are finding a sense of normality in their lives after diagnosis and treatment. Dr Liz O’Riordan, who has recurrent breast cancer, joins the #YouMeBigC girls to talk about her experiences.

This podcast was released at the request of Rachael and her husband Steve.

Treating Cancer Body Mind and Spirit

This podcast was originally published by WeHaveCancerShow.com by  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/

Dr. Timothy Walker – http://healingandcancer.org/book-an-event/dr-timothy-walker/

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

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

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

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.

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!

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.

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 stressdepression, 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.

 

Support Group Connector

This resource was originally published by CancerCare.org here.

Online Support Groups

Online support groups take place using a password-protected message board format (not live chat) and are led by professional oncology social workers who offer support and guidance. Groups are held for 15 weeks at a time, and group members must register to join. After completing the registration process (which can take up to 2-3 business days), members can participate by posting in the groups 24 hours a day, 7 days a week.

Begin the registration process

Already a member? Log in.

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Telephone Support Groups

Connect with other people from across the country who share similar concerns in weekly, regularly scheduled, one-hour sessions.

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Face-to-Face Support Groups

Led by CancerCare® oncology social workers at our offices in New York City, Long Island and New Jersey. Don’t live in the area? We can help you find face-to-face support groups in your own community.

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To learn more about CancerCare’s telephone and face-to-face support groups or to register, call 800‑813‑HOPE (4673).