What Every Rare Cancer Patient Should Know
The experts at TargetCancer Foundation share their biggest tips for newly diagnosed rare cancer patients
By Gina DeMillo Wagner
Receiving a cancer diagnosis is one of the most difficult experiences anyone can face. Even for early-stage, highly treatable types of cancer, patients face a mix of emotions ranging from confusion to sadness, anger and determination. But for rare cancer patients, there’s an additional layer of unknowns, because most doctors may not have much experience with their specific disease.
We recently spoke with Kristen Palma Poth and Jim Palma, president and executive director of TargetCancer Foundation. TargetCancer is a leading organization that promotes the development of protocols and research for rare cancers. They fund innovative cancer research, raise awareness, and collaborate with scientists, researchers, advocates, and patients. The Foundation was formed by Kristen’s late husband Paul when he himself received a rare diagnosis of cholangiocarcinoma and faced a lack of targeted treatment options.
Given their personal and professional experiences with rare cancer, Kristen and Jim shared their best advice for newly diagnosed rare cancer patients.
What is rare cancer?
The National Cancer Institute defines rare cancer as any type that occurs in fewer than 15 out of 100,000 people each year. TargetCancer Foundation uses the guideline of 6 out of 100,000 people. Rare cancers are usually more difficult to prevent, diagnose, and treat than other cancers. Because there are few cases each year, less research and treatments are available for rare cancers.
Seek out experts for your type of cancer
Once you’ve received a diagnosis, one of your first steps should be to find the people who work with your specific type of cancer, says Jim Palma. How? Search for advocacy groups connected to your cancer type, he suggests. Advocacy groups can be a gateway to connect with researchers, doctors, and other patients.
In addition, you can look to see if there are any multidisciplinary, academic or research centers focused on your type of cancer. Enter the name of your cancer on an academic site like PubMed or Google Scholar to check for recent studies and researchers you could contact. If doing this research yourself feels too overwhelming, ask your doctor if they know of any experts working on your cancer type. You can also ask a trusted friend or family member to help you research.
You can also look for clinical studies on Know Rare’s study finder or on clinicaltrials.gov’s listing of studies under your cancer type. Study centers and experts who conduct these studies are likely to be knowledgeable about the latest findings in a rare cancer.
Request biomarker or genomic testing
Whether it’s called biomarker testing, genomic testing, or molecular profiling, this kind of test will show your doctors what genetic mutations are driving your cancer. Rather than focusing on where the cancer is located, biomarker testing looks at the genes, proteins, and tumor characteristics, Jim explains. “This opens up a treatment roadmap of targeted therapies that work on the cancer’s specific biomarkers.” For example, a particular drug therapy might work to inhibit a cancer-specific protein, slowing the spread.
Biomarker testing may also help you discover clinical trials for treatments that are being developed for your specific tumor type. “I think many people fear that clinical trials are a last resort,” notes Kristen Palma Poth. “But that’s just not the case. It may be your best option from the start.” Having access to targeted treatment earlier in the process could have an impact on your long-term treatment plan.
Ask questions and take notes
When meeting with your care team, be sure to ask about all your options. Are you eligible for targeted treatment? What kinds of research are happening for your rare cancer? What kind of testing is available to you? What about clinical trials? What will your insurance cover? Are there alternate ways to pay for treatment or testing, such as special funds or nonprofit foundations?
You may want to bring a close friend, your spouse, or a family member to listen and take notes during your appointments, since it can be overwhelming and easy to forget what the doctors say.
Know you’re not alone
Above all, remember that there are people working diligently to support you and treat your disease. Many hospitals have in-house social workers or patient advocates to help you navigate the process. Ask to be connected with them.
Finally, here are list of websites and resources that may help:
TargetCancerFoundation.org is an important hub for research, patient education, and more.
The American Cancer Society maintains a list of financial resources to help with cancer-related expenses such as travel and housing.
ClinicalTrials.gov is a searchable database of clinical studies. You can type in your disease and see if there are any actively recruiting studies you could participate in.
TargetCancer is currently looking for participants for its trial TRACK. Learn more here.
NORD (National Organization for Rare Disorders) launched a Rare Cancer Coalition to invite organizations working in rare cancers to collaborate on issues facing the greater rare cancer community.
To learn more about clinical studies for rare cancers, click here.
