By guest blogger and sarcoma survivor, Julia McGrath
It didn’t take me long after being diagnosed with sarcoma to come to the conclusion that cancer terminology can be really confusing. But here’s how I choose to see it…
Most folks gather with their friends at the local coffee joint to have light conversation, but when I see my fellow cancer survivors we might discuss things like the terms “cancer-free”, “in remission”, and “cured”. Through our conversations, it was apparent that the survivor, the oncologist, friends and family use the terms differently and at different times. Doctors treating sarcoma patients tend to celebrate NED (no evidence of disease), sight the statistics, and say that a patient is “in remission” because sarcoma cancer does often come back. Friends and family might say that once a removal surgery takes place or chemotherapy is finished that the cancer is gone, and feel that it is gone forever. But as one of those patients I debate in my own head about when a sarcoma patient is considered “cured”, because that’s the elusive term in sarcoma we’d all covet to use. I have tended to stay somewhere in the middle thus far in my journey — I know the cancer can return, but I focus on the positive. So in that middle space, should I tell everyone I am “cancer-free”? How do all these terms feel to those of us who have been diagnosed, whether in or out of treatment? How does that play into our emotional state and stress levels?
According to scientific data and terminology, I am in complete remission because no new cancer has been detected since its removal in October, 2015. Am I “cancer-free”? And when am I “cured”? CT scans cannot detect small cells. And I know that statistically, my sarcoma -if it is going to return- will most likely come back in 2-3 years. But from what starting point? Is it 2-3 years from the surgery, when it was removed, or is it 2-3 years from when I ended treatment (in my case, chemotherapy), about 6 months after the surgery and clear scan? Confused yet? I know many of us are.
After all, my oncologist gave me the option of doing one round of treatments (six cycles, each lasting 21 days). I could have opted out. But I asked myself–what if there were loose cancer cells floating around in my body that the scan had missed? How could I be sure I was truly “cancer-free” without a little chemo? Should I less confidently say I am “in remission” and then wait and see?
Now I visit the radiologist every six months for a scan to see if any cancer large enough to see has returned. I anxiously await the call from my doctor saying that everything looks good. I know I will feel much relief when I can theoretically ring the bell and announce that I am FIVE years clear. Five years in the world of cancer generally means you are “cured”, though there are never any guarantees – especially with sarcoma.
Until then, I take one day at a time and look forward to the future as “chunks” of time. I will say I am doing well — I exercise, plan family activities and attempt not to think about it. I try not to focus on how I define my cancer state, or dwell in the anxiety that walks next to me 24/7 in the reality of these terms and statistics. Every day that I wake up and believe that I am “cancer-free” is a day I am very thankful.
Please join me in celebrating sarcoma survivorship, however you personally define it, by registering for the April 29th Sarcoma Stomp!!! Click here to register for my team, Julia’s Jamboree, whether participating in-person or as a Virtual Stomper. Or, click here for more information.
I get emotional – but in a good way – every time I meet someone in our sarcoma community. It’s a huge honor to meet a cancer survivor and hear their story, because I never forget that it is a very painful topic that invokes every emotion under the sun. I feel like I am treading on sacred ground in these moments. And that’s where I treaded last week.
Excitedly, I walked into the coffee shop to meet Sarcoma Stomp participant, Leah Kirby, for the first time. I was greeted by a tall, beautiful, glowing young woman. “How could she have been diagnosed with that devil?” was my first thought as I laid my eyes upon her. But my head told me that I knew better than to dwell in that mystery, since the horrid fact is that 40% of bone sarcoma sufferers are under age 35.
Leah told me that she was diagnosed with osteosarcoma on her right fibula at age 31. It all started with leg swelling, but she didn’t think much of it since she is a nurse practitioner at CMC Pineville — putting in many steps each day. A lump then appeared, but still no pain. That lump on her leg was watched for 4 or 6 months, as she remained pain-free but perplexed. Doctors decided to do an MRI in April of 2015, at which time the osteosarcoma was found. Leah had 2 cycles of chemotherapy before surgery and 4 cycles afterwards. Dr. Joshua Patt of Levine Cancer Institute removed a 11 ½ x 6 cm tumor from her leg, along with some muscle and nerves, miraculously achieving negative margins. For that surgical outcome, and for the fact that the disease had not metastasized to her lungs, Leah was so grateful.
Leah then paused our conversation and pulled out her phone, showing me – without any hesitation – a photo of that swollen leg. It sure didn’t look like the devil had taken up camp in there. But then I saw the photo of her extracted tumor; it was ghastly. It made my heart hurt.
“What things about being a young adult diagnosed with a sarcoma did you want your peers to understand?” I asked her. Here is what she told me:
Please listen to your body! I had swelling and a lump in my leg, but no pain. As an NP on my feet all day, it didn’t seem very troubling at first. But then it was. No pain does not mean no problem exists. Pay attention people!
Some people don’t understand that a cancer diagnosis is a marathon and not a sprint. They don’t understand “NED” (no evidence of disease), thinking that it means cancer-free. They ask me how long I must wait until I’m considered cured. The statistical fact is that I have a 45% chance of surviving 5 years. I just choose not to dwell on it or make it the epicenter of my world.
Cancer is a life-changing diagnosis. For me it meant several huge decisions, like whether to delay starting chemotherapy to harvest some of my eggs or begin immediately and risk infertility. I tried so hard to stay true to myself to cope with 9 months of treatment. But it is hard because everything changes.
She went through these difficult topics with grace, candor, and wisdom way beyond her years. It was very clear that Leah had refused to let her osteosarcoma diagnosis define who she is or what life holds for her. In fact, she told me that she will be moving back to her home state of Illinois to be with her family and her boyfriend…and to write the next pages of her life’s story. She will travel before starting her new job. She is very happy. And it showed.
Leah let me know that she won’t be able to participate in the Sarcoma Stomp this year, since she’ll already be back in IL then. She is hoping, however, that some of her Charlotte buddies will continue to participate in honor of their friendship — and to raise money for sarcoma research at Levine Cancer Institute.
As we finished up and said our goodbyes, Leah took me over by the exit to meet her sweet mother. “Well, life awaits!” she exclaimed with eyes sparkling, as she took her mother’s hand, looked back at me, and strode confidently out the door.
The holiday season brings a heightened awareness of gratitude, perspective, and introspection for all, but perhaps for cancer survivors even more so. Listen to Julia, a sarcoma survivor, as she tells us what she is grateful for.