ABC Survivors

The Adult Voices of Bone Cancer

by Mary Sorens

Founder, Adult Bone Cancer Survivors

[Editor's Note: Mary is a survivor of parosteal osteosarcoma. After a humerus resection and while continuing intense physical therapy, she returned to work . Within a year, pain began keeping her from working at a desk. She now spends most days comfortably at her laptop administrating the ABC Survivors website and support group. Mary also enjoys travel, writing, and photography. She and her husband, Jason, have just moved to Buffalo, New York, where Jason is an Assistant Professor at the State University of New York.]

The Adult Bone Cancer Survivors group was started as a meeting place for the rare adults who are dealing with bone cancer and its effects. With only five members in early 2005, they swapped stories about their experiences and wondered how many more adults could relate. So they traveled around the internet inviting others to join them. They agreed that, because most patients deal with limb salvage surgery, and because life after limb salvage surgery was such a unique challenge, they would include all types of bone cancer survivors. Now, with nearly 60 members, their mission is still to support bone cancer patients and survivors, and there is talk of doing more.

We come from all walks of life. One by one, we have stepped into a virtual room with others who share our rare diagnosis. Each story is unique, but a remarkable theme has emerged—a spirit of stubborn resilience and hope in the face of a lonely battle for normality.

And many of us would tell you that the loneliness has been worse than the fear, the disability, the daily pain, and the long-term effects of treatment that stretch from head to toe.

Loneliness is a powerful motivator; it is the reason I started the Adult Bone Cancer Survivors group. I wanted to see the isolation of new patients and long-term survivors vanish. With over fifty members, many of us young adults, the ABC Survivors group has grown ten-fold since its inception in February of 2005.

Now a new generation of patients is undergoing treatment for bone cancer. These patients know dozens of other adults who have walked the road before them. The first step of the mission has been accomplished, and Michelle is living proof:

“It is so important, because there are so few adult cases per year, to hear from others who have been through it.” Michelle’s husband, Chris, is currently in treatment for cardiac osteosarcoma.

In addition to supportive “I’ve been there; you can do it,” messages that flow through the ABC Yahoo group, patients in treatment receive cards, prayers, personal visits, and gifts from other survivors.

Mariana, a 27-year-old survivor of parosteal osteosarcoma who has completed treatment, says: “It’s important that I'm able to share my experiences with those who are new to this and are scared and anxious. If anything I say can help, then at least something good can come of enduring this disease!”

The long-term survivors have much to offer others with their experiences, but they also need support that is lacking in their local communities.

Cari, a 30-year-old osteosarcoma survivor says: “Our greatest need is support and recognition. We are alone. We have to travel four hours to appointments because doctors in our towns do not know how to treat bone cancers. We are misdiagnosed because ‘cancer’ doesn't occur in our age range. We are misdiagnosed because bone cancer does not have a lot of research money and is not well known within the medical field or our society. And then, many of us face physical disabilities that have removed us from social situations, careers, family activities and adult life obligations--where do we go for help and support?”

Cari’s words capture a unique aspect of the bone cancer journey. In addition to grueling chemotherapy protocols (often more than a year of treatments), most of us have had complex surgeries that have permanently altered the way our limbs function. Elizabeth, a survivor of chondrosarcoma since 1967, agrees that living with limitations is a serious challenge. Nearly forty years later, she still has to work at “accepting the permanent effects of cancer and treatment, incorporating methods of coping, and continuing to adjust as new changes appear.”

But learning to cope is much less overwhelming when there are others learning alongside you. Cari came to ABC Survivors looking for other young adults who would understand the drastic changes in her life since her diagnosis. When asked about the group, she says, “I truly feel as though I have people in my corner, and I love being a part of their lives.”

What has surprised Cari about the ABC Survivors?

“The laughter and inspiration in this group has surprised me the most. Cancer is such a serious subject, but sometimes it is nice to sit back and laugh at it. We can go from laughter and teasing to serious, uplifting support. We have a strong bond!”

Jimmy, a 27-year-old osteosarcoma survivor, appreciates the honesty of the members: “We can be genuine and real, not afraid of who we are or what we struggle with.” We discuss everything, from difficulties performing simple tasks, to infertility caused by chemotherapy treatments, to the fear of recurrence and death. Michelle says: “Sometimes things are too hard to talk about. This has become a safe place where I feel I can share anything and will not be judged.”

Mariana has been surprised by the friendships in the group: “I never expected to become friends with strangers, and much less over the internet! We don't even see each other as strangers, because we seem to be of one ‘race,’ so to speak. We understand each other and offer the support and tolerance that people not affected by this disease often don’t.”

There is one more purpose that has become critical in the ABC Survivors group. Elizabeth states it well: “Intellectual understanding is our greatest need. If we educate ourselves with the latest information, then we are more able to cope and help ourselves to get appropriate follow up care.”

Our members share articles and relay our personal medical experiences freely. We encourage each other to find the best doctors, to ask questions, and to seek out the best treatments possible.

Bone cancer survivors are not alone. We may be rare, but there are many of us. By joining forces, we are educating ourselves and advocating for ourselves. We want physicians to hear us, to truly hear us, and be honest with us. And we want researchers to be inspired by us. There is much life left ahead of us, and we need the best that medical technology can provide to keep us going—new treatments, new prosthetics, new reconstruction techniques, and new hope.

Click here to read the inspiring stories of the survivors mentioned in this article or to join the ABC Survivors group.