A cancer diagnosis can feel lonely and overwhelming. But listening to the experiences of those who have been there before -- other cancer survivors -- can help.
We talked with four cancer survivors and caregivers and asked them to share their advice for those who've recently received a cancer diagnosis. Here's what they had to say.
Trust your care team at MD Anderson
"Know that you're going to have the best doctors in the nation that are going to be looking out for you. And it's not just the best doctors, it's a team. MD Anderson is the best in the world at having a team concept." -- Frank Mellen, B-cell lymphoma survivor
Watch Frank share more advice.
Keep living your life
"I continued with my life as I had lived it before. I do a lot of walking. I do a lot of reading. I used to do a lot of dancing. I think it's important to just keep living." -- Nancy Kahn, ovarian cancer survivor
Watch Nancy share more advice.
A cancer diagnosis can feel lonely and overwhelming. But listening to the experiences of those who have been there before -- other cancer survivors -- can help.
By Shane Scott
I had been married to the love of my life for about two years and we were just getting our feet on the ground when I received my testicular cancer diagnosis. It happened so fast. I went from having an ultrasound to having an operation the next week. After the surgery, we found out the testicular cancer had spread to my lymph nodes and I would need chemotherapy.
At that point, fertility was the last thing on my mind. I was so worried about beating cancer that I didn't think about how the chemotherapy could cause infertility. How do you look past a life-changing diagnosis and think about the future you may or may not have?
Once I learned about options for addressing infertility, though, the idea of having children was one of the main things that helped me make it through chemo.
My testicular cancer treatment
After my testicular cancer diagnosis, it seemed any news we got was not good. Despite undergoing chemotherapy five hours a day for five days a week, my tumor weren't shrinking. I also lost my hair and didn't have any energy. Then, finally on my third cycle of chemo we started to see some positive progress. I was ecstatic, but I knew my treatments were far from over.
By Brittany Hurst
I did not realize how much I depended on my medical team until my second ovarian cancer diagnosis. During summer 2014, I spent a total of 70 days in the hospital. I spent 58 of them at MD Anderson.
I can honestly say that those days might have been some of the toughest days of my life. I have always been a happy person even in spite of my ovarian cancer journey, but that summer was physically and emotionally exhausting. I had a nasogastric (or NG) tube to help me breathe, underwent two surgeries and started chemotherapy again. I did not know when I would be going home, and every day I prayed it was that day. But I made it through that tough time, thanks to a lot of help from my family, friends -- and my nurses.
Coping with my second ovarian cancer diagnosis with help from nurses
Your nurses are with you 24/7 during a hospital stay. They are the ones you email if you have questions, and they are your lifeline to your doctor. They are constantly writing notes in your chart to update your doctors and are by your bedside at the press of the button.
I not only looked at my nurses as my caregivers, but I also felt as if they were some of my best friends. As I learned, having a great relationship with your nurses helps them know the best way to help take care of you. If it was time for one of my dreaded shots, I had certain nurses give them to me. If I was having a bad day, they made sure to get me out of the room. They were kind when I needed someone besides my family and friends to talk to, and they were stern when they needed to be.
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.
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 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 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.
For 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.
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.
By 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.
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.
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- Advice from four cancer survivors
- Facing infertility after testicular cancer treatment
- How nurses helped me through my ovarian cancer recurrence
- 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
- After squamous cell carcinoma, appreciating the little things
- How our pathologists help our patients
- Wearing my chemo-cut as a badge of honor
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