Social Network Helps Testicular Cancer Patient Thrive

Sven Reigle, Chesapeake Beach resident and digital marketing strategist at Twitter.
Sven Reigle, Chesapeake Beach resident and digital marketing strategist at Twitter.

When Sven Reigle was diagnosed with testicular cancer in 2014, the then-29-year-old Chesapeake Beach resident was determined to keep a positive outlook. With the help of a powerful support network he found on social media, he not only kept his spirits up during long days of treatment, but also reached out to support others.

Sven’s cancer odyssey began when he noticed a lump on his testicle in July 2014. Aware that men between the ages of 20 and 34 have the highest risk for testicular cancer, he immediately had the lump evaluated. “I knew right away what it might be,” he says. After a preliminary diagnosis of stage II cancer, he had surgery to remove the testicle. Further tests, including CT scans, found that the cancer had spread to nearby lymph nodes and chemotherapy would be needed as well.

At that point, Sven decided to carefully research his options for a treatment provider and ultimately chose the oncology staff at the Geaton and JoAnn DeCesaris Cancer Institute at Anne Arundel Medical Center. He has high praise for his doctor, Ravin Garg, MD, who specializes in hematology and oncology at AAMC, and the nationally-certified oncology nurses who saw him through two months of chemotherapy.

“Dr. Garg is phenomenal,” Sven says. “He’s knowledgeable, energetic and inspiring, and my family was impressed by him. The nurses answered every question and made me feel comfortable and at home, which was very important to me.”

Knowing the signs

testicularcancerstatWhile testicular cancer can occur in males of any age, it’s important that young men are aware of the disease, says Dr. Garg. “When your future is ahead of you, the idea of cancer can be devastating. But testicular cancer is very curable and has a more than 90 percent cure rate in stages I and II. Know your body and don’t be afraid to see your doctor if you notice something is wrong.”

Early signs include a mass or nodule in the testicles that feels hard like a rock (unlike a pulled muscle) and sterility that is not responding to treatment. A simple test, such as an ultrasound, is used to make an initial diagnosis.

How to perform a testicular self-exam

While testicular cancer can develop in males of any age, including infants and the elderly, the majority of testicular cancer occurs in younger patients, says Ravin Garg, MD, who specializes in hematology and oncology at AAMC. A quick monthly self-exam can help you catch this disease at its most easily treatable stages. Here’s how:

  • A good time to perform the exam is during a bath or shower, when the skin of the scrotum is most relaxed.
  • Holding your penis out of the way, check one testicle at a time.
  • Hold the testicle between your thumbs and fingers of both hands and roll it gently between your fingers.
  • Look and feel for any hard lumps; smooth, rounded bumps; or any change in the size, shape or consistency of the testicles.
  • Normal testicles have tubes, blood vessels and other structures that can feel like small bumps. When in doubt, consult with your doctor.

When cancer is diagnosed, the first line of treatment is surgery to remove the affected testicle. Further testing helps determine whether the cancer has spread. Testicular cancer is unique in that it has three very specific markers that help doctors determine the next steps, Dr. Garg explains.

If chemotherapy is recommended, AAMC’s caring team of expert physicians and nurses ensure patients understand their treatment options, the benefits and long-term effects of treatment, and the availability of sperm banking to preserve fertility.

“We stand out for our teamwork and our patient education,” Dr. Garg says. “Our nursing staff does a great job of making patients like Sven feel comfortable, and that kind of attention speaks to the human side of cancer care.”

Spreading the news

As a senior account manager and digital marketing strategist at Twitter, Sven knows how to build relationships and gather support. During his chemotherapy infusions, he began tweeting to raise awareness about the disease and to educate people about what chemotherapy is like for a young adult. “I wanted people to know that while it’s not easy,
you can get through it one step at a time.”

Sven’s posts about his treatment at #SvendCancerPacking soon gathered a following, generating support from family, coworkers and strangers.

“My wife Tori and I are from out of state, so although our family visited, it was just the two of us in the day-to-day fight,” says Sven. “This foundation of support on social media and the care I got at AAMC made the biggest difference to us. I went on a mission to educate people, and they ended up helping me. It showed me how compassionate people really are.”

When he lost his hair due to chemotherapy, Sven’s father-in-law put out a call on social media for hats, and he posted photos of himself at #HatOfTheDay wearing some of the many that arrived daily in the mail. One Twitter connection resulted in a visit from Thomas Cantley, a testicular cancer survivor and founder of the Mr. Ballsy campaign, who was trekking around the United States raising awareness with the help of a giant, inflatable ball. Their meeting at AAMC was featured on local television news.

Getting the “all clear”

Sven finished treatment last fall, and by December, about four months after his initial diagnosis, lab tests showed that he was cancer free. He celebrated by changing his Twitter hashtag to #SventCancerPacking. Ongoing tests continue to show he’s in the clear. While the risk of recurrence is low, Sven says it’s good to know he has the experts at AAMC to help him continue to stay healthy.

Sven is also gratified to know he may be helping others as much as they’ve helped him. “In our 20s and 30s we tend to think of ourselves as invincible, but it’s very important to get any problems checked out early. A number of people told me they went to the doctor because of me.”

Today, Sven searches Twitter for other cancer survivors and those starting chemotherapy, and posts an encouraging message. “Having support helps drive that positive attitude,” he says.

November is Movember—an international movement to raise awareness of men’s health issues by growing a moustache for a month. AAMC encourages you to share your moustache photos on our Facebook page.

Contributor

GargRavin Garg, MD, is a hematologist and oncologist at AAMC, with offices in Odenton and Annapolis. He can be reached at 443-481-4884.

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