Social media connects sarcoma patients with hope
I'm a sarcoma survivor and this is my story.
In late June 2013, I noticed "something" in my left thigh, near the crease of my knee. I thought I must have bumped it against the corner of the coffee table, and it would soon go away. But over the next few weeks it went from being the size of a nickel to that of a gumball. It wasn't painful, but it didn't seem like an ordinary bruise or cyst.
I should have seen a doctor sooner, but as a never-sick guy with no wife to nag me about such things, I didn't have a primary care physician. But after supper one early-August evening I went to a drop-in clinic near the mall. The doctor was uncertain about the lump–it wasn't in the right spot to be a Baker's cyst, it felt solid rather than fluid-filled, and it was growing at a worrisome rate. He set up an ultrasound for the following week. I wondered if I was being foolish, needlessly spending money on tests that would show that it was nothing.
However, the seriousness of the situation sank in at the end of the ultrasound examination. The tech told me the test would be read in the morning, with the results called to the referring physician. "So if you haven't heard from the doctor by early afternoon, be SURE to call him." The few tests I'd had in the past were on a "don't call us, we'll call you" basis, so this was disquieting. I called, and was told the lump was a solid tumor, "perhaps a sarcoma," and an MRI was needed for further investigation. A week later, following the MRI, the tentative diagnosis was still "possible sarcoma" and a biopsy was scheduled for the following week.
Now quite concerned, I turned to "Dr. Google" to learn what I could about sarcoma. Some of the information was truly frightening. Repeatedly, I read that because sarcomas are so rare, patients should seek treatment at a sarcoma center. The only sarcoma center in Iowa is the University of Iowa Holden Comprehensive Cancer Center. I learned that the UI team has a Twitter feed, and through it, learned they have a Facebook page. I sent them a message on a Sunday morning, and within a couple hours, arrangements were being made to see me on Thursday. Their concern and urgency in scheduling me was a morale-booster after the lackadaisical pace of the Des Moines providers.
That Thursday I met my cancer team, which included Dr. Milhem, my oncologist, Dr. Miller, my orthopedic surgeon, and Dr. Bhatia, my radiation oncologist. An ultrasound-guided biopsy confirmed I had a high-grade pleomorphic undifferentiated or "spindle cell" sarcoma. I would receive five weeks of radiation to shrink and kill as much of the tumor as possible, with surgery a few weeks later. Because the tumor was high grade and 5cm in size (roughly the size of a golf ball), Dr. Milhem warned that even though the CT scan didn't show any current metastasis to my lungs, there was a 40 percent chance that they may show up later.
The weeks of radiation seemed to fly by, and the surgery was the Friday before Thanksgiving. I bounced back quickly, returning to work a week and a half later. A fall on the ice in January caused a setback with the wound healing, but that too was quickly overcome. My follow-up CT scans in March and June were clear, but in September two small tumors were spotted in my lungs, a 4mm tumor in the lower left lobe, and an 8mm tumor in the upper left lobe. We responded aggressively with Dr. Parekh, cardiovascular surgeon, removing them through VATS or "keyhole" lung surgery two weeks later.
Since that time, my scans have been clear, so I'm nearing two years with no evidence of recurrent disease. I've left the stress of the workaday world behind by retiring, I'm eating a healthier, plant-based diet, lost weight, and increased my exercise and activity level. I feel great, and while I would never say having cancer is a positive experience, it gave me a strong nudge towards living a healthier lifestyle.
I've also become an advocate for cancer awareness, especially for sarcoma. Anyone with a growing lump should see a doctor sooner rather than later, and if there's any possibility it's a sarcoma, see the specialists at the Holden Comprehensive Cancer Center. You can reach out to them at Sarcoma Iowa on Facebook, @SarcomaIowa on Twitter, or toll free 800-777-8442 or (319) 384-8442. On the internet, the Sarcoma Alliance, Sarcoma Foundation, and Liddy Shriver Sarcoma Initiative are all great sources of accurate information. There are support groups on Facebook for sarcoma in general, and for specific subtypes.
Sarcomas are rare, only one in 100 adult cancers is a sarcoma, and there are more than 50 subtypes. You owe it to yourself to see the sarcoma specialists at UI for diagnosis, treatment, or a second opinion. The message that I sent on the Sarcoma Iowa Facebook page three years ago was probably the most important email or message I've sent in my 30+ years online.