Social Media Is Helping Me Cope With Cancer

Facebook provided me with information to find treatment for my spindle cell sarcoma. Now it is providing me with support as I struggle with recurrence.


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Larry Slavens

An online community I found on the Sarcoma Alliance Facebook page is providing me with comfort and support as I go through this next phase of my cancer journey.

—Larry Slavens

Despite a diagnosis in August 2013 of stage III high-grade spindle cell sarcoma and subsequent disease recurrence, I’m mindful of how fortunate I am that my cancer was found before widespread metastases could take hold, making treatment futile. It was just happenstance, 2 months before, on a long drive from my home near Des Moines, Iowa, to Lawrence, Kansas, that I reached under my left knee and felt a flat, small lump about the size of a nickel. Thinking I must have bruised my leg, I initially dismissed the bump. But when the mass grew in size over the next few weeks I decided to see a doctor.

The combination of rarely getting sick and having a high deductible on my health insurance discouraged me from seeking regular medical checkups. Since I didn’t have a primary care physician, I went to a local walk-in clinic where I was referred for ultrasound and MRI testing. I was told the scans suggested a soft-tissue sarcoma and that an appointment was being made with a surgical oncologist for a biopsy of the tumor.

Finding Medical Information Online

Concerned about a possible diagnosis of cancer, I wanted to learn everything I could about soft-tissue sarcoma before I met with the oncologist, and I went online looking for information. What I found convinced me that I needed to seek the opinion of a specialist in this rare cancer. Not knowing where to find one in my area, I again turned to the Internet for help. I posted a message on the Facebook page of the Iowa Chapter of the Sarcoma Foundation of America looking for recommendations for an oncologist and was given the Twitter addresses of several specialists. Within hours after contacting them, I was sent a message to call the office of one of the specialists for an appointment. Several days later, a biopsy of the suspicious mass confirmed high-grade spindle cell sarcoma. While the tumor was stage III, additional imaging tests showed the cancer was confined to the tumor and had not spread.

Although the malignant mass was still relatively small, 5 cm, because it was so close to the femoral artery, my oncologist recommended a 5-week course of radiation to shrink the tumor before surgically removing it.

Cautiously Optimistic

For the last year, follow-up imaging tests showed no sign of cancer recurrence. Unfortunately, the most recent CT scan found two small nodules, one 8 mm and one 4 mm, on my right lung. Although I have not yet had a biopsy to confirm a metastasis, the lesions are very likely malignant. My doctor had warned me that I had a 40% chance of the cancer recurring in my lungs, so the finding doesn’t come as a complete surprise. Still, the news is disappointing and frightening.

And once again, social media is helping me cope with my cancer. An online community I found on the Sarcoma Alliance Facebook page is providing me with comfort and support as I go through this next phase of my cancer journey, and I’m grateful for their prayers, virtual hugs, and positive comments.

Facing the Future

Even before this latest setback, my experience with cancer had left me with the realization that I probably won’t live into very old age. I’ve started rethinking my priorities, and reaching out to friends and relatives who have drifted away. I’ve also started to downsize my life, getting rid of possessions I no longer want or need, and it feels liberating.

 Although it sounds perverse to talk about having good fortune when discussing cancer, in my case it is true. I was lucky to have found the primary cancer while it was small enough to be easily treated. I was lucky to have a resource like social media to find specialists in my rare cancer. And, I am lucky now to have found an online support community that is giving me the courage to face the future, whatever it may bring. 

The one thing I know for sure is I intend to fight this cancer every step of the way. ■

Larry Slavens is a software engineer in Des Moines, Iowa.

 

Resources for Sarcoma

Sarcoma Alliance
http://sarcomaalliance.org
http://sarcomaalliance.org/chatroom/
www.facebook.com/sarcomaalliance

Sarcoma Foundation of America
www.curesarcoma.org
www.facebook.com/curesarcoma

 


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