yasupport.jpgBy 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.

jamiebernard121.jpgAs 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."

GM12015.jpgBy 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.  

Stephanie_madsen.jpgBy 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.

Phil_Gonzalez_1.14.jpgFor Phil Gonzalez, the toughest part of his head and neck cancer treatment was losing the ability to taste. After doctors found the squamous cell carcinoma in the left side of his jaw, Phil had to undergo a 10-hour surgery. MD Anderson doctors removed his tumor, along with a portion of his jaw bone, and then rebuilt it using a bone from his ankle, along with  titanium plates, a 3D printer and a virtual replica created from MRI and CT images.

During his cancer treatment, Phil spent less than a month on a feeding tube, two months on an all-liquid diet and weeks in physical therapy. But to Phil this wasn't nearly as tough as not being able to taste his food,  a side effect from his 6 weeks of radiation and chemotherapy -- that was the hardest for Phil. During his squamous cell carcinoma treatment, his wife brought him his favorite food, a banana split, but he couldn't taste it at all.

Eventually, Phil's sense of taste returned. He still remembers the first meal he could appreciate again: a cheeseburger from his favorite fast-food joint.

"It was the best meal I've ever had," he says.

Phil's squamous cell carcinoma diagnosis and treatment
Phil's cancer journey had begun with what he thought was a mere toothache. After several trips to the dentist and even having a tooth pulled, the pain continued. It was then that Phil's dentist knew this wasn't just a toothache.

pathology_group_163_Edited.jpgBy 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.

Marcy112.jpgBy 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.

Msteel.jpgBy Melanie Steel

Silver lining. I've never been a fan of that term. It reminds me of a consolation prize that no one really wants. But three years ago, I began to accept and appreciate that term in a whole new way.

In December 2011, my dad was diagnosed with stage IV melanoma. The ugly disease had resurfaced in his lungs after lying dormant and undetectable since the treatment of a spot on his back in 2001. The diagnosis stopped our family in our tracks. We soon learned how deadly this disease can be and started wondering how much time we had left with my dad. At that time, I was ready to receive my consolation prize -- my silver lining.

Finding the silver lining after Dad's melanoma diagnosis
For the first time in my life, I treated time with my family as my first priority. In December 2011, we didn't know if dad would have two months or two years. We guessed closer to two months and began to spend as much time together as possible.  

17shah.jpgEach 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.

vickiepoe.jpgBy Vickie Gibson Poe

Most people would agree that having cancer is a bad thing. No question about it. You don't want anyone you love, including yourself, to get cancer.

And yet, I firmly believe that there is some good in every situation. My husband's prostate cancer is no exception to this rule.

My husband's prostate cancer diagnosis
When my husband's metastasized prostate cancer was diagnosed last summer, I felt as though the sunlight had been sucked from our world. Pain seemed to surround us. He was in pain physically, and I was helpless to relieve it. I was in pain emotionally and was unable to relax or find peace.  

The time that lapsed between his prostate cancer diagnosis and the beginning of his prostate cancer treatment seemed like a time of endless torment. When I look back on those few weeks now, the only color I can see in my mind's eye is gray. We were victims of a dark disease, living in a fog of agony and indecision and sadness.

But during the past six months, the light has come back into our world. Little by little, the gray mists have cleared, and welcome bursts of vibrant color have broken through to illuminate our many blessings. 

Peterson_Trackers_140.jpgBy 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.

dec30.jpgCaring for your loved one during cancer treatment can be a full-time job, but it's important to take care of yourself, too. To lend our caregivers a helping hand, we've compiled some of our favorite posts from the past year about caring for cancer patients.

Here are 2014's most helpful and inspiring posts for cancer caregivers.

11 tips for cancer caregivers from our Facebook community
No one knows the challenges that caregivers face better than other caregivers, so we asked our Facebook community to share their advice. Read their 11 tips for cancer caregivers.

My husband's courageous hemangiopericytoma journey
Lindi Senez's husband, Dave, lost his cancer battle in June. "But with all the bravery and love that he showed each step of the way, to me, in way, he won," Lindi says. Read their inspiring story.

6 things cancer caregivers can do at MD Anderson
At MD Anderson, cancer caregivers are survivors, too. That's why we offer many services and amenities to help caregivers. Learn about six things caregivers can do at MD Anderson.

How my daughter's childhood cancer diagnosis changed our lives
When her 4-year-old daughter, Hannah, was diagnosed with a brain tumor, Gaylene Meeson's life changed forever. Yet, the Meesons are determined not to let cancer control their lives. "We appreciate everything, we focus on what matters, and we don't take anything for granted."  Read the Meesons' story.


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