Understanding treatment options for rare cancers
There are many different options for treating rare cancers. Choosing the best treatment for you or a loved one depends on many factors, including:
- The kind of rare cancer you have
- Where the cancer is located in your body
- How far the cancer has grown or spread
- The genes or biomarkers that help guide your treatment
There are several categories of rare cancer treatments. They are similar to those for more common cancers. These treatments may be used alone or in combination.
Rare cancer treatment types
Surgery
To remove cancerous tissue or tumors.
Chemotherapy
To destroy or slow the growth of cancer cells using cytotoxic drugs.
Radiation Therapy
To destroy cancer cells using high-energy radiation.
Targeted Therapy
To target specific molecules or pathways involved in cancer cell growth and survival.
Immunotherapy
To stimulate the immune system to recognize and attack cancer cells.
Hormone Therapy
To block or lower the levels of hormones that fuel certain cancers.
Which treatments may be best for me?
Every treatment has different side effects. When making a treatment plan, discuss the risks and benefits of each treatment option with your practitioner. It is normal to feel overwhelmed or confused when considering treatment options. Talking to your practitioner before treatment can help you feel more confident about your decisions.
Biomarker testing is especially important in identifying which treatment approach might be most effective for you. Talk to your doctor about receiving this testing after your diagnosis.
Many rare cancers do not yet have standards of care or treatment protocols. If this is the case, your care team may personalize a treatment plan for your cancer based on the specific features of your tumor. This is one reason why it is important to seek out a care team that specializes in your type of rare cancer.
Selecting a care team to make a treatment plan
It is important to work with a care team that you trust. It is also important that a physician who specializes in your type of rare cancer delivers your treatment. The most effective care teams involve many specialists from different fields, sometimes called a multidisciplinary care team. These specialists work together to manage your care in a coordinated way. The most common places to find multidisciplinary care teams are:
- university-affiliated cancer centers
- NCI-designated centers
- clinics for rare cancers
When to consider a second opinion
Second opinions can also be helpful when building a treatment plan. For example, some treatments might make you ineligible for other treatments, so it’s important to understand all options before moving forward. It may be necessary to put multiple potential plans in place in case you have to shift course.
When to consider a clinical trial
Many people with rare cancers also choose to participate in clinical trials. Clinical trials are important for anyone with a rare cancer to consider. They may be the best way to explore new treatments or combinations of existing treatments before they are approved by the FDA. New treatments that are being tested or combinations of existing treatments may work better in rare cancers than standard options.
A common myth is that clinical trials are a last resort, used only when other treatments have failed. Today, many people with rare cancers choose to join a clinical trial early in their treatment, and sometimes even first. Talk to your doctor about whether and when a clinical trial may be right for you.
Some clinical trials are specific to one type of rare cancer. Others, like TCF-001 TRACK, enroll people with different types of rare cancer.
Learn more about rare cancer clinical trials »
Learn more about TCF-001 TRACK »
To learn more about clinical trials, watch our webinar “Clearing the Air About Clinical Trials: Facts, Myths, and Potential Benefits”.
Questions to ask your doctor about rare cancer treatment options
If you are thinking about taking part in a clinical trial, you should feel empowered to ask any questions you have before, during, and after the trial. Possible questions may include:
- What treatments do you recommend for my type and stage of rare cancer?
- Why do you recommend this treatment over others?
- What are the goals of this treatment? (e.g., cure, control, prevent spread, manage symptoms)
- What are the potential side effects of this treatment? How can I prevent or treat them?
- How long will this treatment take?
- How will you know that the treatment is working? How will you measure success?
- Do you have data about how this treatment has worked in other patients like me?
- How will this treatment affect my quality of life and daily activities?
- What if this treatment does not work? What should I do next?
- When will I need to start treatment? How much time do I have to make a decision?
- Who are the members of my treatment team?
- What is the follow-up plan after treatment ends?
- What, if anything, could cause me to not be eligible for this treatment?
- Are there any support services available during treatment (e.g., counseling, pain management, support groups)
- What will this treatment cost me? Will insurance cover any portion of this treatment?
- What if I have questions during treatment? Who should I ask?
Additional resources
- Types of Cancer Treatment (National Cancer Institute)
- Treatment Types (American Cancer Society)
- Questions to Ask Your Doctor About Treatment (National Cancer Institute)