Difficult-to-treat Cancer? Part 1: What Now? | The Doctor Weighs In

By: Harvey Berger, MD

Been diagnosed with a difficult-to-treat cancer and wondering what you should do next? Here are some steps you can follow to take control of your diagnosis.

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CANCER. The word that flips the world on its head and changes everything. You go from planning vacations and nights out to doctor appointments and researching treatment options on the internet. Then you get worse news: you have a difficult-to-treat cancer. You wonder if there is any chance at remission, at being healthy again.

While there are no guarantees, research over the past 20 years has dramatically improved the survival odds for cancer patients, including those with difficult-to-treat cancers, such as non-small cell lung cancer and leukemias.

This three-part series will discuss steps to take after your diagnosis, the process behind bringing new drugs to market, and some of the most recent advances in treating difficult cancers.

After You’re Diagnosed

There are a number of decisions to be made after being diagnosed with cancer. They range from what additional testing should be undertaken and treatments to pursue to making plans in the event that initial treatment does not work. Below are several steps that you can take to manage your diagnosis and take control of your life.

-Understanding Your Diagnosis

The first step in taking control of cancer is to understand exactly what you are facing. A number of factors influence each person’s cancer diagnosis and prognosis. These include

This is particularly important with difficult-to-treat cancers, because the stage and location usually have an impact on which treatment options can be pursued. For example, patients diagnosed with localized NSCLC have a 60% 5-year survival rate. Whereas those diagnosed with distant lung metastases have only a 6% survival rate.

-Questions to ask to better understand your difficult-to-treat cancer diagnosis

Some questions you can ask your doctor or specialist to help you better understand your diagnosis include:

  • What parts of my body are affected?
  • What stage is the cancer?
  • What are the molecular or genomic characteristics of my disease?
  • How does this disease typically progress?
  • What treatment options do I have?
  • Is remission possible?
  • What are the typical outcomes for this cancer at this stage?

When having this discussion, it is a good idea to bring someone else with you. This could be a family member or friend. They can help gather information and ask questions.

Due to the emotional nature of the situation, it is easy to miss key information. Having another person accompany you means there is another set of ears in the room to help ensure that information does not get lost in the moment.

What to Expect After Your Diagnosis

After you have begun to understand your diagnosis, there are a few more steps before making treatment decisions.

If you have a difficult-to-treat cancer, your primary physician or internist will likely send you to a cancer specialist who will help determine a treatment plan for you. For example, if you have been diagnosed with leukemia, you will likely be referred to a hematologist focusing on specific types of blood cancers.

It is common for patients to seek a second opinion regarding their cancer diagnosis or treatment plan. Oftentimes, patients will schedule an appointment at a hospital that has been certified by the National Cancer Institute (the “NCI”), such as the Dana-Farber/Harvard Cancer Center or the Mayo Clinic Cancer Center. These centers are often involved in clinical trials and may be able to offer additional treatment options for your situation that are not available at your local clinic.

My advice is to learn as much as possible about your disease from day one. Go online and search for the most-up-to-date information on your cancer and the diagnostic and treatment choices available to you. Many major cancer centers, the NCI, and American Cancer Society (the “ACS”) offer extremely valuable websites, discussion groups, blogs, and summary articles that will help you deal with your cancer diagnosis.

Decisions to Make

After you have discussed your diagnosis and achieved a better understanding of the situation, you are going to have a number of decisions to make. Before you make them, it is important to establish your priorities and determine what to expect based on outcome possibilities.

These outcomes include:

  • Complete Remission: no evidence of the cancer remains
  • Preventing Progression: stopping the cancer from spreading further in the body. This option is often likened to treating cancer as a chronic disease and learning to live with the cancer
  • Palliative care: living as comfortably as possible with cancer; this can be pursued while being treated for cancer or after ending treatment

While remission is often a patient’s ultimate goal, unfortunately, there are scenarios where this is not possible. In these situations, it is important to decide if the goal is to prevent further spread of the disease or to maintain one’s comfort and live life as best you can.

Another important decision is determining how informed you wish to be as a patient. Some people prefer to be informed at every step of the process. They want to discuss all possible avenues with the doctor before making a choice. Other patients may simply ask the doctor to explain the treatment options and potential outcomes. And some patients designate another person to make decisions for them.

Each of these scenarios is a valid option, and patients should choose the one that works best for you. If you do wish to include someone else in the decision-making process, be sure to work with your doctor to let them know that this is the case. This can require additional paperwork (especially under federal HIPAA privacy rules).

Next Steps

After making the above decisions, you will likely begin the process you have chosen to pursue. This is true whether it be a form of treatment or palliative care.

If you choose the treatment route, you may have other decisions to make regarding how invasive you want the treatment to be. You may also have to decide if you will be pursuing a surgical option, radiation therapy, chemotherapy, immunotherapy, personalized targeted therapies or other treatments. Your doctor may suggest a combination of these.

Depending on the type and location of your cancer, certain treatments may not be an option. For example, a glioblastoma may be located in a portion of the brain that isn’t accessible by surgery.

An emerging area in cancer treatment is immunotherapy, which involves using drugs to activate and support a person’s immune system to help it fight the cancer.

These medications are formulated to affect changes on a cellular level and assist the body in knowing which cells are cancerous.[4] These treatment methods have shown great promise in recent studies and will be discussed further in the third article.

What if it comes back?

Unfortunately, recurrence is always a possibility, which is why it is important to continue seeing your doctor after going into remission. She will monitor for any changes in your body and look for signs of recurrence.

When cancer returns, it may be different than the first time you were diagnosed, because the disease may have mutated or become resistant to treatment methods. In these situations, doctors may prescribe a different course of action regarding treatment.

Just a decade ago, there often were no other treatment options for patients if their cancer returned. But in recent years, researchers have focused their work on overcoming mutations and resistances that cancers develop to treatments. The drug discovery process is long and complicated and will be discussed in the next article in this series.

Articles in this series:

Difficult to Treat Cancers (Part 1) — Getting the Diagnosis. What Now?

Difficult-to-treat Cancers (Part 2) — The Drug Discovery Process

Difficult-to-treat Cancers (Part 3) — Recent Discoveries in Cancer Research


  1. Browse the SEER Cancer Statistics Review 1975–2015. Acute Myeloid Leukemia — Cancer Stat Facts. https://seer.cancer.gov/csr/1975_2015/browse_csr.php?sectionSEL=15&pageSEL=sect_15_table.14. Accessed February 22, 2019.
  2. Managing Cancer as a Chronic Illness. American Cancer Society https://www.cancer.org/treatment/survivorship-during-and-after-treatment/when-cancer-doesnt-go-away.html. Accessed February 22, 2019
  3. Brain Tumor — Treatment Options. Cancer.Net. https://www.cancer.net/cancer-types/brain-tumor/treatment-options. Published January 8, 2019. Accessed February 22, 2019.
  4. Understanding Immunotherapy. Cancer.Net. https://www.cancer.net/navigating-cancer-care/how-cancer-treated/immunotherapy-and-vaccines/understanding-immunotherapy. Published January 29, 2019. Accessed February 22, 2019.
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Dr. Harvey Berger founded ARIAD Pharmaceuticals, Inc. in 1991 and served as Chairman and Chief Executive Officer of the company until 2015. Today, he acts as the company’s Founder, Chairman and CEO Emeritus, in addition to his duties as the governing trustee at the Dana-Farber Cancer Institute. From 2017 to 2018, he served as the Executive Chairman at Medinol, Inc. Dr. Berger earned his A.B. degree in Biology at Colgate University and his medical degree from the Yale School of Medicine. He completed additional medical training at Yale-New Haven Hospital and Massachusetts General Hospital. Before founding ARIAD, Dr. Harvey Berger developed new medicines for various diseases, including lung cancer and Crohn’s Disease, and led the Research and Development Division at Centocor, Inc. from 1986 to 1991. He has also held teaching positions at Emory University, Yale University and the University of Pennsylvania. In 2013, he was awarded the Ernst & Young Entrepreneur of the Year Award in New England and the Gold Stevie Award for Executive of the Year, Pharmaceuticals. Dr. Berger currently resides in Palm Beach with his wife and two daughters.

Originally published at https://thedoctorweighsin.com on June 6, 2019.

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