By Wendy Griffith, Social work counselor
Appointments. Side-effects. Medications. Side-effects from medications. More sickness. Lengthy tests. Hospitalizations. It can be a lot at any age, but for young adults (generally those ages of 18 to 39), it can be especially so at a time when it feels like life is just really getting started. How are you supposed to manage all of that, much less cope with it?
The answer is different for every person. But if there is one thing that can help young adults cope with cancer, it's social support. In fact, that's true for cancer patients of all ages.
What is social support?
Social support essentially refers to the feeling of comfort, care and connection that you get from others. "Others" could be immediate family, extended family, close friends, acquaintances, neighbors, coworkers, and yes, even strangers. These individuals might help you by providing emotional support, physical support, financial assistance, laughter, motivation, distraction or a combination of all of the above. It all depends on what you need or want, and that can completely change from day to day.
Why social support is important
No matter what your exact situation is, being sick can get lonely.
Even patients with incredible support systems feel alone from time to time, or need a little extra boost from outside their network. We need different things, at different times, from all kinds of different people.
Recently in Cancer Treatment Category
By Wendy Griffith, Social work counselor
As 2013 drew to a close, everything was normal for then 32-year-old Jamie Bernard. She was a healthy, active mom, running 5Ks and reveling in a 45-pound weight loss. The MD Anderson employee never thought that a few months later she'd be diagnosed with stage IIA ductal carcinoma in situ (DCIS), a non-invasive form of breast cancer.
When Jamie went for her annual well woman exam in January 2013, her doctor asked if she'd been checking for changes in her breasts.
"I lied and said yes," she admits. But the guilt of being untruthful led her to start looking for changes that November. And on December 3, she discovered a lump in her left breast.
A few weeks passed before Jamie decided to make an appointment to have the lump checked.
She recalls telling herself, "I work for MD Anderson. If it's something and I didn't get it checked out, I'm to blame."
Jamie's breast cancer treatment
For Jamie, January 2014 was the start of a whirlwind year. Not long after her breast cancer diagnosis, a type test revealed her cancer was growing as a result of the estrogen produced by her body, making her chances of cancer recurrence higher. This meant Jamie had no choice but to undergo a mastectomy. Her treatment plan also included 16 rounds of chemotherapy. Once her treatment was complete, she began a 10-year prescription for tamoxifen, a drug that is used to prevent breast cancer recurrence.
When Jamie received her cancer diagnosis, her thoughts immediately turned to her daughter, Caydin. There was no doubt Jamie would do whatever it took to be around to watch her grow up.
"I made a pact with God," she says. "If you keep waking me up, I will do whatever you need me to do."
By Gail Morse
After I received my breast cancer diagnosis, I chose to keep it to myself and not tell a lot of people. This wasn't my original plan, but after sharing this news with some people that I wasn't close to, I decided this was for the best. Their comments were like condolences, as if I were dying tomorrow.
It was too much to bear at the time, and I shut down completely after that. I chose not to tell others that I had breast cancer. I even decided not to tell some family members. I didn't want to deal with the after effect. I didn't want to hear feelings from other people about my cancer. I didn't want to think that letting them know could be better for them. I was the one with cancer over here.
Learning to share my journey with others
That non-disclosure period extended into halfway through my breast cancer treatment, until I met with a counselor through MD Anderson's Body Image Therapy Program. She suggested opening up to let others' goodwill and spirit help me through the journey.
I listened, and it did help. I had to learn how to manage my inner-response to others wanting to help and allow them to do so, but I did it on my terms.
By Stephanie Madsen
My trip to MD Anderson for large cell cervical cancer treatment was so incredible that I wished I could have stayed longer.
The place is spectacular. As weird as it may sound, MD Anderson felt like an amusement park or a resort. I've been to three other places for large cell cervical cancer treatment in the last three years, and I haven't been anywhere like it.
Finding hope and life at MD Anderson
You might think of MD Anderson as a place where people are dying, but I saw it as a place where people are living. As I walked through the doors for the first time, I immediately felt ushered into the community. From the valet attendants and staff to the doctors and survivors around me, everyone was so kind. There were many times when the spirit on the campus almost brought me to tears. Yet, I never felt a sense of sadness. In the sea of wheelchairs, bald shiny heads, white coats, and the ever-present ports, I instead felt power, strength, faith and unwavering hope. We had all showed up that day. We were a team fighting the same opponent. Arm in arm, mustering up everything within us to defeat cancer. Walking through the halls, I wanted to give everyone passing by a high-five for all that they have done and all that they will continue to do.
By Carol Bryce
It's not unusual for a patient to arrive at MD Anderson with one diagnosis and leave with a different one.
For example, when approximately 2,700 patient cases were reviewed during September 2011, 25% showed discrepancies between the original pathologists' reports and our pathologists' reports. While the changes in diagnosis were minor in 18.7%, in the other 6.2%, the diagnosis change made a major difference.
"In some of those cases, we changed the diagnosis from malignant to benign or vice versa," explains Lavinia Middleton, M.D., professor in Pathology. "That adds up to approximately 2,000 cases per year where we can say that our pathologists' reviews have impacted patients' treatment.
"Changing the diagnosis from malignant to benign is the best call to make. This makes us feel really good."
"Review of outside material is a major component of the work done by our Pathology and Hematopathology departments," adds Stanley Hamilton, M.D., division head in Pathology/Laboratory Medicine. "The correct pathologic diagnosis and stage of each tumor are key to high quality care for patients."
How we make the correct diagnosis
So why do we find things overlooked by other health care institutions?
"Our system here helps us make the right cancer diagnosis. It's based on three things: sub-specialization, volume and redundancy," Middleton explains.
By Marcy Kurtz
After major surgery and many rounds of chemotherapy, I finished my treatment for recurrent uterine cancer in September 2014. I'd started losing my hair in May, and was completely bald by the end of chemo.
Because I am a repeat uterine cancer warrior, I was accustomed to being bald and knew how to handle my baldness in a way that worked for me. In my yoga and CrossFit communities, I was comfortable with my head either completely uncovered or covered only by my trusted baseball cap. At all other times I wore a wig. Scarves just didn't work for me.
Then, slowly, my hair started to grow back. Currently, about 90 days out from my last round of chemo, I have very short hair. I would describe my hairstyle as the perfect military cut -- for a guy! My family and friends are kinder -- they tell me often how great I look with my short hair. I call my look the chemo-cut. I still wear my wig a lot of places, including work.
Adjusting to life with short hair
In my life before cancer, I always had long hair. In fact, when asked, I had trouble remembering when I could NOT put my hair in a ponytail.
Each year, about 24,000 people in the United States are diagnosed with multiple myeloma, according to the American Cancer Society. Most are over age 65, but people of all ages are diagnosed with this blood cancer.
Multiple myeloma is marked by the growth of malignant plasma cells found in the bone marrow. These myeloma cells typically make a protein found in blood and urine.
Over the past decade, we've made tremendous strides in treating multiple myeloma, enabling patients to live significantly longer.
Jatin Shah, M.D., associate professor in Lymphoma/Myeloma, recently spoke with us about how multiple myeloma is diagnosed and treated, as well as new therapies on the horizon.
Here's what he had to say.
How is multiple myeloma diagnosed?
The most common way to diagnose myeloma in its earliest stages before symptoms appear is through routine blood work. If a patient has elevated protein levels, several tests are conducted and their combined results interpreted in order to make a myeloma diagnosis.
What are common myeloma symptoms?
Before they receive a definitive diagnosis, myeloma patients often have problems with anemia, high calcium or renal failure. Or, they may have broken bones or lytic lesions, where sections of bone are basically destroyed.
By Carol Bryce
Imagine if you could monitor your health between clinic visits and quickly share the details with your care team.
That's the premise of research that's being conducted here.
"We're looking at new ways of data collection that are grounded in real-world challenges," explains Susan Peterson, Ph.D., in Behavioral Science.
This may help address health issues and behaviors that change when you you're not at the hospital or your doctor's office. For example, patients with head and neck cancer usually don't develop swallowing difficulties while they're at their doctors' offices. And former smokers may not struggle with relapse while they're sitting in clinic waiting rooms.
So our researchers are looking at ways to use modern technology to monitor patients' vital signs, side effects, symptoms and treatment adherence between medical appointments.
Research that's based in reality
In their first study, the researchers tested the use of mobile sensors like fitness trackers and other portable devices that enable patients to monitor their health at home. The study was conducted by researchers from MD Anderson, the University of Alabama at Birmingham and the University of California, San Diego.
Researchers created a system that used mobile applications to gather daily data from patients and send the information to their health care teams. The system, called CYCORE (CYberinfrastructure for COmparative effectiveness REsearch), enables patients to directly enter their personal health information into various devices.
"Using CYCORE, we've been able to gather behavioral, environmental and psychological data that's typically not collected in research trials," Peterson says.
Walking into the unknown is scary, especially when the unknown is cancer treatment. Fortunately, many of our brave and inspiring cancer survivors are willing to share what they've learned from chemotherapy, hair loss, a diagnosis and many other experiences.
Here's some of the best advice we received in 2014:
Kyssi Andrews' three lesson on coping with hair loss
After her Wilm's tumor returned, 6-year-old Khyrstin (Kyssi) Andrews wasn't excited about losing her hair again. So, her mother Marla helped by making it fun and reminding her that she's beautiful no matter what.
Read how Marla helped Kyssi cope with saying goodbye to her hair.
5 ways to make cancer treatment more fun
After Marshall Lauen was diagnosed with stage 2B Hodgkin's lymphoma, he and his wife Ashley became determined to make his lymphoma treatment as fun as possible. "After all, we're fighting for his life, not just a clean PET scan," Ashley says.
Find out how Ashley and Marshall bring fun to MD Anderson.
No matter where you are in your cancer journey, you're likely curious about cancer prevention and treatment. Or, maybe you're trying to figure out how to manage an unexpected side effect or whether or not you can exercise during cancer treatment.
Whatever the case, you're sure to find wisdom, guidance and hope in the insight of our doctors and other experts, many of whom shared their expertise here on Cancerwise and in our Cancer Newsline podcast series in 2014.
Below, we've pulled together some of the most helpful insight and advice our doctors and other experts shared this past year. We hope you find something here that helps or inspires you in your cancer journey.
Immunotherapy: Unleashing the immune system to attack cancer
We're making great strides in immunotherapy, a new way of treating cancer that targets the immune system rather than the tumor itself. And, this innovative approach, developed by Jim Allison, Ph.D., professor in Immunology, will open doors for treating all types of cancer. Learn more in this podcast with Allison and Padmanee Sharma, M.D., Ph.D., associate professor in Genitourinary Medical Oncology and Immunology.
Understanding the new HPV vaccine
Recently, the U.S. Food and Drug Administration approved a new vaccine targeting nine types of HPV, including five that haven't been covered by other vaccines. And, for those who get the vaccine, that means even better protection against cervical cancer, oral cancers and other cancers linked to HPV, says Lois Ramondetta, M.D., in Gynecologic Oncology and Reproductive Medicine. Find out what you should know about the new HPV vaccine.
By Eric Tidline, Social Work Counselor
Cancer-related fatigue is one of the most common issues patients face. Even among patients who have completed cancer treatment, fatigue is one of their foremost concerns.
Fatigue describes a physical and/or mental state of being tired and weak. Physical fatigue and mental fatigue are different, but they often exist together, which can make the experience even more frustrating.
However, it is often possible to curb cancer-related fatigue. Although it may sound counterintuitive, moderated exercise is the number one treatment for cancer-related fatigue.
For some, walking, weight lifting and cycling are great ways to exercise. But if you aren't ready or aren't able to participate in such activities, you might find progressive relaxation exercises helpful. Progressive relaxation is one type of exercise that is often gentle enough to meet most people's needs.
What is progressive muscle relaxation?
Progressive muscle relaxation is based on the idea that the body responds to anxious thoughts by tensing muscles, and the tense muscles add to the anxiety, creating a cycle of stress.
We typically associate an ultrasound scan with pregnancies, but many doctors use them to take a look at a patient's organs, especially during cancer treatment.
An ultrasound is a painless procedure that uses sound waves to look at the internal organs. It is sometimes called a sonogram.
Follow instructions to prepare for your ultrasound
Ultrasounds for most body parts do not require any preparation.
But if you're getting an ultrasound of your abdomen (including the liver, gallbladder, spleen or pancreas), you need to take these steps:
- Don't eat gas-producing foods for 24 hours before your ultrasound.
- Don't eat or drink anything six hours before the ultrasound. Small sips of water are OK.
- If you need to take oral medicine, swallow with a small amount of water. If you're having a pelvic ultrasound, make sure you have a full bladder before the test. Drink 32 ounces of liquid and don't urinate before the scan.
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- How young adult cancer patients can find social support
- Looking back on a life-changing year
- Opening up about my breast cancer journey
- A large cell cervical cancer patient's first visit to MD Anderson
- How our pathologists help our patients
- Wearing my chemo-cut as a badge of honor
- What you should know about multiple myeloma
- Could home-based monitoring enhance your cancer care?
- Best of Cancerwise 2014: Advice from our cancer patients
- Our experts' most helpful insight from 2014
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