The Future of Cancer Care
- Kansas resident Curt Melin visited his doctor complaining of hip pain and was diagnosed with a rare bone cancer called chondrosarcoma.
- Melin was determined not to lose a limb, so he took a risk that paid off. He signed up for a 3D-printed titanium partial pelvis implant.
- This is the first time this procedure has been performed in Kansas, but 3D printing opens up exciting possibilities for the future of cancer care and the customization of prosthetic body parts.
The operation took place at the University of Kansas Health System, and it was the first of its kind in the state of Kansas. Melin is currently learning to live with a brand new pelvis that was 3D-printed for him in titanium.Read More
When Melin’s doctors presented him with his prognosis and treatment options, he felt that there had to be another way forward. “The option was basically they take off your leg or take off your leg, and neither option was acceptable to me,” he said. “The response to that was there’s got to be something else.” As a physically active father, Melin didn’t feel like he could bear losing a limb.
Incidence of Bone Tumors
Bone tumors are rare, with about 5,000 to 6,000 cases diagnosed each year
St. Jude Children's Research Hospital
That pushed his doctor, Dr. Kyle Sweeney of University of Kansas Health, to search for another way. The option he came up with had never been attempted before in Kansas. Melin was offered the opportunity to be the first person in the state to receive a 3D-printed pelvis.
“I immediately jumped on it, and I said, ‘Well, if it’s the first one that KU ever did, I’ll be your guy,’” Melin said. And the risk paid off. He can already walk with a crutch. If everything goes according to plan, he will be moving about with just a cane in the coming year.
“It’s absolutely incredible what you can do with it,” said Dr. Sweeney, “Because if you can imagine it, you can 3D print it. And if you can image it, you can recreate anatomy that’s specific to an individual.”
This operation is an example of one of the ways that healthcare is pushing into the future with the help of technology. Procedures like this will become more commonplace in time, and some doctors imagine that hospitals will even have their own 3D-printing machines.
How to Find Help After a Rare Cancer Diagnosis
Tens of thousands of people are diagnosed with rare types of cancer every year. For example, fashion icon Virgil Abloh recently died of a rare cancer called cardiac angiosarcoma–a tumor that forms in the heart.)
People facing an uncommon diagnosis may find it difficult to find a doctor who specializes in their illness and to learn more about alternative treatment options. SurvivorNet experts have specific guidance on ways that patients facing rare disease can find helpful resources and take the initiative to get the help they need.
Here are some ways to find help:
Many SurvivorNet experts say that once they’ve exhausted all other options for treating their patients’ cancer, or if they have a rare cancer, they’ll recommend looking into clinical trials. How can you find active clinical trials that may be right for you? Check out clinicaltrials.gov.
Dr. Leena Gandhi explains why it’s important to seek guidance about ongoing trials from your doctor.
This website is a database that the U.S. government maintains. It compiles privately and publicly funded clinical trials conducted around the world. It can be a particularly useful resource for cancer patients with rare conditions as a tool for finding doctors who are experts on their diseases.
Oftentimes, the most specialized doctors in a specific field end up leading clinical trials that push our understanding of diseases forward. If you know what the name of your disease is, you can search the disease name on clinicaltrials.gov and find the names of doctors leading these kinds of studies. This tool can help you identify the doctors who are best qualified to help you.
Dr. Beth Karlan explains that while clinical trials may offer life-saving treatments for some people, they’re also extremely important for scientific research.
Academic Centers & Comprehensive Care Centers
For many cancer warriors, community oncology can be a great treatment resource. However, people with rare cancer might require specialized evaluation. Most of the time, the most effective place to find a specialist is at academic centers and comprehensive care centers.
“A comprehensive cancer center is a cancer center that has been essentially vetted by the National Cancer Institute (NCI), and provides outstanding clinical care in addition to basic and translational science and research,” Dr. Ted Teknos, president at University Hospitals Seidman Cancer Center in Cleveland, Ohio, previously told SurvivorNet.
Across the U.S., there are only about 50 accredited comprehensive cancer centers. There are also various cancer cancers.
So, what’s the difference between the two? An NCI-designated cancer center means that a center has met NCI standards for cancer prevention, clinical services or research, but not all three. If a facility is an NCI-designated comprehensive cancer center, that means it meets NCI standards in all three categories.
Dr. Kenneth Miller, a clinical instructor at Mount Sinai, explains what differentiates a comprehensive cancer center from other treatment providers, like community medicine.
“Pretty much automatically, there’s going to be a team approach (to your care),” Dr. Kenneth Miller told SurvivorNet in a previous conversation. “Surgical oncology, medical oncology, radiation oncology and all the support services — and also wonderful pathology and radiology.” Dr. Miller explained that at a comprehensive cancer center, all of these different specialists work together to help you find the best treatment.
“We call it a tumor board — a group to go through all the details of your case … so you get a group of very smart people coming up with a plan together that is hopefully optimal and gives you the best chance of doing well.”