Posts Tagged ‘cancer patient support’

Coping with Survivor’s Guilt After Cancer

woman cancer survivor serious Being diagnosed with cancer can bring on many different types of emotions, from fear to sadness to relief; however, many patients don’t think about how they might feel after they complete their treatment. Many are surprised when they begin to feel guilty. This is known as survivor’s guilt. It is a feeling that is often experienced by those who have survived a major or traumatic event, such as being diagnosed with cancer. The feelings may come from a sense of guilt that they survived the disease and another patient did not, or they did well with treatment while another had a very difficult time recovering.

Here are some things to keep in mind if you think you might be suffering from survivor’s guilt:

  • You are not alone. Survivor’s guilt is very common. It is a natural response for many cancer patients. It often feels like sadness, depression or even grief.
  • Tell someone about how you’re feeling. Talk with a friend or family member you trust. You can always reach out to a social worker to help you process these feelings. Acknowledging these feelings can help you process them and ultimately overcome them.
  • Consider keeping a journal. Sometimes it is helpful to write down how we are feeling in order to help us manage those emotions. Starting an art project is another creative way to cope with survivor’s guilt.
  • Remind yourself that every patient’s cancer journey is different, and that’s OK. It is unrealistic to compare your treatment outcomes to someone else’s because everyone is different.
  • Be supportive. If you know someone who is going through treatment and having a difficult time, it is important to provide them with as much support as possible. As a cancer survivor, you offer a unique type of support because you have been there.
  • Attend a cancer survivor’s support group. Reaching out to other survivors can be helpful.

Don’t wait to get help if you think you are experiencing survivor guilt. It is important to acknowledge and address the issue sooner rather than later. Patients can talk directly to oncology social workers through the following community organizations: www.livestrong.org, www.cancer.org, and www.cancercare.org.

Emory Healthcare

At Emory Healthcare, we’re here to help you find the care you need when you need it. With more than 2,800 doctors and 300 locations, including 11 hospitals, as well as primary care offices, urgent cares, and MinuteClinics, we’re delivering specialized care across the region. Find a doctor near you to help you get and stay healthy.

Talk to Our Nurses

Emory HealthConnection is where registered nurses can help you find a location or specialist that’s right for you. Call 404-778-7777 from 7:30 a.m. to 6 p.m. EST (M-F).

Winship Cancer Institute of Emory University

Seeing over 17,000 patients a year, Winship Cancer Institute of Emory University is Georgia’s only National Cancer Institute-designated comprehensive cancer center and serves as the coordinating center for cancer research, education and care throughout Emory University.

About Joy McCall, LCSW

Joy McCallJoy McCall, LCSW, is a Winship social worker with bone marrow transplant, hematology, and gynecologic teams and their patients. She started her professional career at Winship as an intern, working with breast, gynecologic, brain, and melanoma cancer patients. She graduated with a Bachelor of Science in Psychology from Kennesaw State University and a Master of Social Work from the University of Georgia. As part of her education she completed an internship with the Marcus Institute working on the pediatric feeding unit, and an internship counseling individuals and couples at Families First, supporting families and children facing challenges to build strong family bonds and stability for their future. She had previously worked with individuals with developmental disabilities for over 4 years, providing support to families and caregivers.

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8 Ways to Cope with Cancer as a Young Adult

Young adult with cancerReceiving a cancer diagnosis can be devastating. Just imagine how hard it would be to hear the news as a young adult. The challenges of being diagnosed with cancer between the ages of 18 and 39 are different from those in patients who are diagnosed later in life.

Many young adults diagnosed with cancer experience a disruption in a new career and dating. Cancer and any treatments that follow can sometimes have long-term effects on a person’s ability to start a family.

Here are eight ways to help you cope with cancer as a young adult:

  1. Request and ask for help. Having a support system during this time is critical. Be sure to reach out to others for support even after your treatment is completed.
  2. Consider giving friends and family members specific tasks in order to help you. Some friends and family members may not be sure how best to support you during this time. It may be helpful to you and them to provide friends and family members with specific requests. For example, request rides to treatment, or ask for certain meals to be made or errands to be run.
  3. Educate yourself. Having knowledge about your diagnosis and treatment often helps young patients maintain some sort of control during this time. This also helps to ensure you are making educated decisions about your healthcare.
  4. Ask questions! Do not hesitate to ask your healthcare provider if you have any questions. Write down your questions prior to your medical appointments.
  5. Inquire about how your treatment will affect you. Many treatments affect a patient’s ability to conceive children in the future. Talk with your medical professional about this and what options may be available to you.
  6. Consider reaching out to other young cancer survivors through young adult support groups or connecting online. The Winship Cancer Institute of Emory University currently has a new Young Adult Cancer Survivor Online Support Group that meets once a month. This group is specifically for any young adult who was diagnosed with cancer between the ages of 18 and 39.
  7. Reach out to a social worker for additional emotional support. Oncology social workers have a special level of expertise and are trained to provide support to patients as they are coping with diagnosis and treatment. It is often helpful to be able to process your feelings with someone else. Social workers also have a wealth of knowledge about additional resources that may be helpful.
  8. Try not to compare yourself to other friends or family members. Your cancer diagnosis may have altered your life pattern; however, it does not have to destroy it.

The cancer diagnosis is something that happened to you, but it doesn’t have to define you or control your future. There is help out there; you just have to know where to look and who to ask.

Emory Healthcare

At Emory Healthcare, we’re here to help you find the care you need when you need it. With more than 2,800 doctors and 300 locations, including 11 hospitals, primary care offices, urgent cares and MinuteClinics, we’re delivering specialized care across the region. Find a doctor near you to help you get and stay healthy.

Talk to Our Nurses

Emory HealthConnection is where registered nurses can help you find a location or specialist that’s right for you. Call 404-778-7777 from 7:30 a.m. to 6 p.m. EST (M-F).

Winship Cancer Institute of Emory University

Seeing over 17,000 patients a year, Winship Cancer Institute of Emory University is Georgia’s only National Cancer Institute-designated comprehensive cancer center and serves as the coordinating center for cancer research, education and care throughout Emory University.

About Joy McCall, LMSW

Joy McCallJoy McCall is a Winship social worker with bone marrow transplant, hematology and gynecologic teams and their patients. She started her professional career at Winship as an intern, working with breast, gynecologic, brain and melanoma cancer patients. She graduated with a Bachelor of Science in Psychology from Kennesaw State University and a Master of Social Work from the University of Georgia. As part of her education she completed an internship with the Marcus Institute working on the pediatric feeding unit, and an internship counseling individuals and couples at Families First, supporting families and children facing challenges to build strong family bonds and stability for their future. She had previously worked with individuals with developmental disabilities for over 4 years, providing support to families and caregivers.

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Cancer Clinical Study Leads to Video Tool for Prostate Cancer Patients

At Emory, research plays a key role in the mission to serve our patients and their families. Medical advances and improvements to patient care have been made possible by research and volunteer participation in clinical trials. More than 1,000 clinical trials are offered at Emory, making a difference in people’s lives, today.

Recently, a clinical study initiated by Winship Cancer Institute of Emory University, found that providing prostate cancer patients with a video-based education tool significantly improved their understanding of key terms necessary to making decisions about their treatment.

The breakthrough study was led by three Winship at Emory investigators; Viraj Master, MD, PhD, FACS; Ashesh Jani, MD; and Michael Goodman, MD, MPH; and is the feature cover story of this month’s Cancer, the peer-reviewed journal of the American Cancer Society.

In 2013, Master, Jani and Goodman released an Emory study that showed that prostate cancer patients (treated at Grady Hospital in Atlanta) experienced a severe lack of understanding of prostate key terms. The original study showed only 15 percent of the patients understood the meaning of “incontinence”; less than a third understood “urinary function” and “bowel habits”; and fewer than 50 percent understood the word “impotence.”

In response to their findings, the three principle investigators jumped to find a solution to the problem. The latest study explored using a video-based tool to educate prostate cancer patients on key terminology. The physicians predicted that with a better understanding of terms linked to disease, patients would be able to participate in shared and informed decision-making throughout the prostate cancer treatment process.

About the Prostate Cancer Video Trial:

  • 56 male patients were recruited from two low-income safety net clinics and received a key term comprehension test before and after viewing the educational video.
  • The video software (viewed by participants on iPads) featured narrated animations depicting 26 terms that doctors and medical staff frequently use in talking with prostate cancer patients.
  • Learn more by watching this video:

clinical trials for prostate cancer

Results of the Prostate Cancer Video Trial:

Participants who viewed the educational video demonstrated statistically significant improvements in comprehension of prostate terminology. For instance, before viewing the application, 14 percent of the men understood “incontinence”; afterward, 50 percent of them demonstrated understanding of the term.

“This shows that video tools can help patients understand these critical prostate health terms in a meaningful way. The ultimate goal is to give patients a vocabulary toolkit to further enable them to make shared and informed decisions about their treatment options,” says Viraj Master. “Our next goal is to improve the tool further, and study this tool at different centers.”

Learn more about clinical trials at Emory >>

Find a clinical trial at Emory >>

 

Additional Information about the Prostate Cancer Trial:

The research for this study was made possible by a Winship Cancer Institute multi-investigator pilot grant and the contributions of faculty and students from Winship, the Rollins School of Public Health and the Emory School of Medicine.

This study was led by three Winship at Emory investigators: Viraj Master, MD, PhD, FACS, Winship urologist and director of clinical research in the Department of Urology at Emory University; Ashesh Jani, MD, professor of radiation oncology in the Emory School of Medicine; and Michael Goodman, MD, MPH, associate professor of epidemiology with the Rollins School of Public Health.

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When Your Partner Fails You

Cancer Support(This blog was originally posted on Friday, February 20, 2015 on the WebMD website)

Along with the worries, sadness and frustrations of dealing with cancer, many patients experience the heartbreak of their loved one failing to support them. How could a life partner or spouse fail you during cancer? There are many ways, some more obvious than others.

Jan’s husband never came to any appointments, ever. He never learned about her diagnosis, her treatment plan, the side effects of the medicines or the recommendations for how she might improve her energy and strength. He blamed the lymphedema in her arm after her surgery on her “lazy lifestyle.” He told her that support groups were for “wimps” and even took some of her pain medicine for himself.

Sally’s partner came to every appointment – he would never let anyone else bring her. He kept a medical notebook with her test results and argued with every doctor about each treatment plan. He would not let her eat any ice cream or cookies because he thought the sugar would make her tumor grow, even though Sally was at a very healthy weight and ate a very balanced diet.

Gary’s girlfriend would never stop talking about herself. At appointments with the oncologist she would ask questions about breast cancer even though Gary had lymphoma. She repeatedly complained about Gary being at home instead of work, “having him around the house all day is making me crazy, I need my space!” She had no understanding of cancer fatigue: “he looks fine, no vomiting or fever – he should be able to do more!” In the past Gary had been able to participate in his girlfriend’s extremely busy social schedule, but after lymphoma, he asked his girlfriend about limiting their social time to just close friends. His girlfriend insisted on accepting every invitation, and started leaving Gary at home, alone.

Some spouses and partners don’t get it, but they want to, which is huge. If a loved one wants to do better, there is hope for the relationship. If you’re the partner — not the patient — in this scenario, and you’re wondering how to recover from your initial missteps, here’s what I would suggest: Start by setting aside time when there are not any children yelling or bills to be paid or dishes to be done. Begin with a question, “so how are things going for you?“ Wait for an answer. Listen. Then ask “Anything I can do to help?” Breathe, pause, listen. Maybe put your hand on your partner’s shoulder, gently, in order to emphasize you are listening. If you start getting yelled at for being late once 6 months ago, breathe deeply, and respond simply, “I am sorry I was late, but now I really want to help, and do better. Let’s keep talking, but no yelling please.” Make eye contact and smile.

Sally’s partner took the advice above, he set aside the time, took several deep breaths, and listened. He listened closely because he really did love her, and wanted to know how she was doing. He admitted that he had hoped to stop the cancer by controlling everything about her medical care and diet. Sally was able to explain she did appreciate the help with scheduling and tracking her medicines, but she did not want to be treated as an invalid or a small child. Sally’s partner was eventually able to become the partner she needed – a partner interested in caring for her but also respectful of her autonomy.

Gary spent a lot of time after cancer treatment thinking about what kind of life partner he wanted. Reflecting back over the years, he was able to see that his girlfriend had always been self-absorbed. Friday nights, she chose the restaurant; Sunday morning she picked the breakfast; and during the week she rarely asked how Gary was doing at work. Gary realized that he would rather be alone than in a relationship with someone who only cared about herself. “After everything I have been through, I deserve real love.”

Jan always knew that her husband drank too much, but she had hoped he would stop on his own. Through her cancer treatment Jan was terribly embarrassed that her husband was not at appointments. On the day Jan came home to tell her husband that the oncologist told her she was cancer free, he was passed out on the couch. Not being able to share the journey, or the joy in the recovery, pushed Jan to tell her husband that she wanted a divorce. When he realized Jan was actually planning to leave him, he knew he had to get sober. The addiction to alcohol had robbed Jan’s husband of the chance to be a support when his wife really needed him. The only hope for the marriage was for him to get completely sober, and with medical care, Jan’s husband finally stopped drinking. Once sober, he returned to being the kind of husband Jan remembered from when they were first married. He cooked pasta dinners, rubbed her feet in the evening, and actively listened when she talked about her health concerns and hope for the future.

We all hope that our partner will step up and be there for us if we need them, but sometimes they don’t support us as we’d hoped. There are a variety of reasons why a loved one may fail during cancer treatment, and the psychological work is to realize the failure is about their issues, not about you or your self worth. If there is genuine caring, and a real desire for a loving relationship, a couple may get through the challenge of cancer. And if not, there may be grieving process if the relationship fails, but there is great beauty in a cancer survivor taking steps to be in the healthiest, most loving relationship possible. After cancer, you deserve it.

About Dr. Baer

Wendy Baer, MDWendy Baer, MD, is medical director of psychiatric oncology at the Winship Cancer Institute of Emory University, with appointments in the Department of Psychiatry & Behavioral Sciences in the Emory School of Medicine, and the Department of Hematology and Medical Oncology at Winship.

In her work at the Winship Cancer Institute, Dr. Baer helps patients and their families deal with the stress of receiving a cancer diagnosis and subsequent treatment. As a psychiatrist, she has expertise in treating clinical depression and anxiety both with medications and with psychotherapy to help people manage emotions, behaviors, and relationships. The fundamental goal of Dr. Baer’s practice is to promote wellness and maximize patients’ quality of life as much as possible. She believes strongly in the team approach to patient care and collaborates regularly with the doctors, nurses, and social workers that make up a patient’s care team.

Dr. Baer attended medical school at the University of North Carolina at Chapel Hill, where she graduated with honors. From UNC she went to the University of Pennsylvania, where she completed her residency in psychiatry and served as the chief resident in her senior year. Prior to moving to Atlanta, Dr. Baer worked with patients dealing with cancer at the Swedish Cancer Institute in Seattle, WA.

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7 Steps for Better Sleep During Cancer Treatment

Better Sleep with Cancer(This blog was originally posted on January 15, 2015 on the WebMD website)

One of the most common complaints I hear working with people who have cancer is that they can’t sleep. We all know the misery of not being able to fall or stay asleep, and the misery that awaits the next day, including fatigue, irritability and foggy headedness. And being awake at night, especially when you have cancer, is lonely, scary and frustrating. All the worries about your diagnosis, treatment and future are at their most intense when you don’t have daytime light, noise and people to distract you. Call it the 3am Misery. Understandably many cancer patients ask their doctor for a sleeping pill like Ambien or Xanax. While this may be an easy solution, it might not be the right solution. So before you assume that sleeping pills are the answer, pause. Have you and your doctor talked about what is really causing your sleep problem?

For people with cancer, sleep problems generally fall into three categories: daytime escape, after-dark fear, and body aches. Knowing your category is the first step in dealing with the sleep problem.

Daytime Escape

“Wake me up when it is over!” Who would not want to escape from cancer? Escaping into your bed during the daytime and letting sleep take you away from the cancer reality seems pretty appealing. Unfortunately, the bed escape can backfire. The more time you spend in your bed during the day, the less time you sleep at night. If you are in the daytime escape category, the remedy for sleeplessness is not a sleeping pill, but a plan that helps you stay out of bed during the day, so you may rest well at night.

After-Dark Fear

“When I turn out the lights, I worry I am going to die.” Intense fear about your cancer prognosis, heavy grief about changes in your life because of cancer, racing thoughts and catastrophic thinking (“there are absolutely no good days ahead for me”) are symptoms of anxiety and depression. Fortunately, anxiety and depression can be treated, but not with a sleeping pill. In fact, sleep medicines may make some depressive symptoms worse. Strategies to manage after-dark fear include helpful thoughts (“I will deal with this in the morning”), limit setting (no cancer internet searches before bed) and relaxation (an evening bath). These strategies need to be practiced everyday to be most useful.

Body Aches

Body aches, otherwise known as treatment side effects, are major contributors to 3 a.m. misery. Pain, either aching muscles or sharp, shooting nerve pain, keeps you from falling or staying asleep. There may also be cottonmouth, urges to pee and nausea. Getting rid of body aches requires a bit of work, but worthwhile if you are able to turn down the volume on your symptoms and avoid 3am Misery. Keep track of your body aches in a written calendar and talk to your oncologist about your symptoms. If you have “as needed” medicines (prochlorperazine, hydrocodone, oxycodone), definitely don’t take them without keeping track of how they work for you. Write down the date, your symptom on a scale of 1-10 and then try one medicine at a time. Be sure to only continue with the pill if the medicine allows you to be more awake and active during the day. Some people develop body aches from too little movement as muscles and joints get deconditioned during cancer treatment. Talk to your oncologist about a physical therapy referral. Safe daytime movement will certainly improve your sleep at night.

Below is a 7 Point Program that may be your best shot at minimizing 3 a.m. misery. Different parts of the program target escape, night fear and body aches.

The 7 Point Program

  1. Absolutely no cancer talk or internet searches after dinner; repeat “I will manage that in the morning.”
  2. Pick a bedtime and a wake time with 8 hours in between. Write and post the times around your home. Be a stickler.
  3. Caffeine is off limits after noon. No smoking either (nicotine is another stimulant that kills your sleep).
  4. Pick a helpful thought. “This shall pass.“ Repeat slowly & calmly, while you breathe slowly & deeply, three times before bed and if you waken in the night.
  5.  One nap a day max, 45 minutes or less, before 4 p.m.
  6. Motion is lotion. Walk the dog, or with a friend, daily (if your oncologist says ok).
  7. Chill for one hour before bedtime (stretch, read, listen to music or journal).

Of course, everyone’s medical status is unique. For example, people with very advanced disease or a heavy treatment burden may need extra daytime rest. So adjust the plan to fit your specific condition, then challenge yourself to stick it – all 7 points for 2 weeks. If you’re still having trouble sleeping, talk to your doctor.

In certain situations sleep medicines and pain pills may be necessary, but you should know the source of your sleep problem before you start a sleep medication. And the goal of any medication or sleep program should be to feel more energetic, happy and clear-headed over time, so that you can well not just tonight, but in the weeks and months to come.

About Dr. Baer

Wendy Baer, MDWendy Baer, MD, is medical director of psychiatric oncology at the Winship Cancer Institute of Emory University, with appointments in the Department of Psychiatry & Behavioral Sciences in the Emory School of Medicine, and the Department of Hematology and Medical Oncology at Winship.
In her work at the Winship Cancer Institute, Dr. Baer helps patients and their families deal with the stress of receiving a cancer diagnosis and subsequent treatment. As a psychiatrist, she has expertise in treating clinical depression and anxiety both with medications and with psychotherapy to help people manage emotions, behaviors, and relationships. The fundamental goal of Dr. Baer’s practice is to promote wellness and maximize patients’ quality of life as much as possible. She believes strongly in the team approach to patient care and collaborates regularly with the doctors, nurses, and social workers that make up a patient’s care team.
Dr. Baer attended medical school at the University of North Carolina at Chapel Hill, where she graduated with honors. From UNC she went to the University of Pennsylvania, where she completed her residency in psychiatry and served as the chief resident in her senior year. Prior to moving to Atlanta, Dr. Baer worked with patients dealing with cancer at the Swedish Cancer Institute in Seattle, WA.

Related Resources

How Will I Cope With Cancer?