Managing Treatments

With Rare or Aggressive Cancer and No Set Treatment Plan, What’s Next?

If you have an aggressive or rare form of cancer and no treatment plan, what options do you have?

Even though millions are diagnosed with cancer each year, not all cancer is the same: beyond more well-known cancer types, many people have rare or aggressive cancers. In 2017, it’s expected that almost 13 percent of all cancers diagnosed in people 20 years old or older will be rare cancers, according to the American Cancer Society. For many people, these cancers are also aggressive, spreading quickly to tissues outside those in which they originally formed.

If you’ve been diagnosed with a rare or aggressive form of cancer, you’re probably wondering what your treatment options are. Maybe you don’t have a set treatment plan yet, or perhaps your doctor thinks traditional options (like chemotherapy or surgery) may not be the best choices for you. If this is the case, how do you know what your options are?

Fortunately, researchers now know more about dealing with cancer than ever before. Each year, tremendous strides are made in the development of therapies that could benefit people with many types of cancer, including rare or aggressive cancer. It’s easy to get overwhelmed with all the information that’s available, but once you know what your options might be, you’ll be in a better position to make important choices.

First, Talk With Your Doctor

Your cancer diagnosis was probably shocking, upsetting and frightening. By now, you may have already had several discussions with your doctor about your treatment options, even if no treatment plan was nailed down. However, it’s still vitally important to talk with your doctor about your desires for treatment and any other options that may be available to you, even if they fall outside the realm of traditional cancer therapies.

Since having an aggressive cancer, or rare form of the disease, can affect your life significantly, it’s critical that you feel at ease with your doctor so that you are able to receive the best care possible. Having open, honest conversations can help you feel better prepared to ask questions and get as much information as possible about your options. These types of discussions can also help you feel more in control, and may even start the process of establishing a plan for your treatment.

If Traditional Cancer Treatment Isn’t an Option, What Is?

Often, the goal of cancer treatment is to stop the progression of the disease — but what happens if you have an aggressive form of cancer that cannot be cured? What if you have a rare type of cancer that doesn’t respond to conventional treatment? There are still options to consider that could increase your quality of life and provide you with other benefits, like relief from cancer symptoms.

Treatments that fall outside traditional methods of dealing with cancer are usually called “complementary and alternative” treatments, according to the American Cancer Society. You’ve probably heard of some of these therapies before — they include acupuncture, massage and meditation. While not designed to cure cancer, these therapies can help manage your symptoms while improving your quality of life. Be sure to check with your doctor before beginning any of these types of treatment.

Along with complementary therapies, research into immunotherapy and precision medicine is showing promising results for treating rare and aggressive forms of cancer. Immunotherapy uses your body’s own immune system to mount an attack on cancer cells, the American Cancer Society reports. This type of treatment has already been used for years as an effective cancer treatment, and newer types of immunotherapy treatments could lead the way in the future.

Additionally, the promise of precision medicine gives many cancer patients hope. Work is currently underway to develop precision medicine treatments that target genetic abnormalities commonly linked to cancer, according to the National Cancer Institute. One day, doctors may be able to deliver carefully determined doses of anticancer medications directly to cancer cells using a precision medicine approach. For now, it’s possible to enroll in certain clinical trials that explore the potential benefits of precision medicine; talk with your doctor if you’re interested in enrolling in a clinical trial.

While your rare or aggressive cancer diagnosis is certainly cause for some concern, you still have options for treatment. By exploring your options beyond traditional treatment, you could find one — or a combination of therapies — to provide relief and increase your quality of life as you navigate your cancer experience. Be sure to talk with your doctor before making any decisions to ensure you’re being as safe as possible while being cared for.

UVA Cancer Center offers myriad treatment plans and options, tailored to each patient's unique needs.

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Sarah Handzel, BSN, RN