Receiving a cancer diagnosis can be devastating. Hearing you have a rare cancer creates another level of anxiety. Razelle Kurzrock, MD, and her colleagues are treating people who have rare tumors with targeted approaches that may not be widely available — offering hope and options.

What is a rare cancer?

Rare cancers occur in fewer than 6 out of 100,000 people each year. There are several hundred rare cancers, and combined, they make up almost 25% of all cancers.

Razelle Kurzrock, MD

What is the prognosis for a rare cancer?

The prognosis varies by cancer type. In general, rare cancers share some common features. They often occur in

younger people, and they are often more aggressive than other cancers. Overall, the prognosis for rare cancers is worse than the prognosis for other cancers, which can be due to their aggressive nature. They are also harder to treat simply due to their rarity. There may be limited or no FDA-approved treatments. It is challenging to conduct research for new treatments for rare tumors because there are fewer people to participate in clinical trials compared to trials for more common cancers. But rare cancers aren’t rare to us. We see a higher than average number of people with rare cancers, making more treatments and clinical trials
for rare and advanced cancers possible within the Froedtert & the Medical College of Wisconsin Cancer Network.

Why do rare cancers require specific expertise? Can it make a difference in outcomes?

It is difficult to find doctors who have substantial experience in this realm. But within our disease-specific cancer programs, we have treated many patients for cancers that may not be familiar to most cancer doctors. Now, we have further concentrated our expertise in rare, ultra-rare and some advanced cancers in our new Rare Cancer and Precision Medicine Clinic. I, along with Hui-Zi Chen, MD, PhD, specialize in treating these challenging cancers. Genetic counselors, pharmacists, nurses, advanced practice nurses, clinical trial managers and coordinators complete a team devoted to helping our patients achieve their best possible outcomes.

What is a precision medicine approach for rare cancers?

In 2001, Human Genome Project researchers deciphered the chemical makeup of the human genetic code, making precision medicine possible. Cracking the code forged positive inroads in treating cancers that were untreatable years ago. When you have cancer, there are mistakes in the human genetic code. An analysis called genetic sequencing helps us find mistakes in your genes. Then, we base treatments — which may include combinations of gene-targeted drugs, immunotherapy and clinical trials — on the genetic and immune signature of your cancer. This approach is precise, effective and personalized, ensuring almost everyone can get a treatment customized to their specific tumor.

What is your best advice for someone facing a rare cancer diagnosis?

Ask your cancer doctor if they have ever treated a patient with your type of rare cancer. Explore your options. We have specialists and programs to diagnose and treat specific types of cancer, and we collaborate as needed to deliver the right care for people with rare cancers. Patients may be seen in one of our disease-specific programs. Others are connected directly to the Rare Cancer and Precision Medicine Clinic because it is the right approach for them.