Topics To Discuss With Your Oncologist

by Jane Ashley

Cancer is a complex and complicated disease. There are so many new words that we hear, and we don’t know what they mean. So how can we possibly understand our oncologist’s conversation?

Tips For Talking To Your Oncologist

All too often, they talk, and we listen and even nod our heads, indicating that we understand. But we don’t. Our silence becomes a problem because we, as the patient or caregiver, have to make treatment decisions.

So what are some of the topics that we, as patients, should discuss with our oncologist?

Staging

Patients Don't Know

It’s still shocking to hear that some patients don’t know what stage cancer they have. A recent study by a Pennsylvania cancer center showed that nearly half of cancer patients diagnosed in the last two years don’t know what stage cancer they have. Why is it important to know the stage of our cancer?

• The stage of our cancer helps determine our treatment. The stage of our cancer determines the most appropriate treatment. Our staging determines what chemo should be used, and if hormonal or targeted therapies should be used. Staging also determines the order of our treatments — whether surgery should be done before or after chemo. Staging is a consideration in the use of radiation.
• Staging helps predict our chances of recovery. Everyone responds differently to treatment, but the stage of our cancer helps predict how likely remission is and the chance of recurrence.
• Staging helps us set expectations. We are all terrified at diagnosis, but many people have an excellent prospect of experiencing a long-lasting remission. Knowing that we have a poorer prognosis allows us time to get our affairs in order.
• Staging may help us qualify for a clinical trial. Not all clinical trials are for people who have run out of treatment options. Some clinical trials are to test a vaccine to help prevent a recurrence or offer a less invasive treatment for earlier-stage cancers.

Patients who have metastatic cancer (cancer which has spread to other parts of our body) may mistakenly believe that they also have liver or lung cancer in addition to their primary cancer. They may fear being treated for three different kinds of cancer at the same time and refuse treatment because they don’t believe that they could endure so much treatment. However, the treatment of metastatic cancer is treating the tumors in other parts of a patient’s body as well as the primary tumor.

Pathology Report

Patients who have surgery to remove their cancer tumor or a biopsy of a tumor are entitled, by law, to receive a copy of their pathology report. All that you have to do is ask for a copy at your next appointment.

The pathology report is a critical part of your diagnosis because it provides so much detailed information about how aggressive our cancer is and the extent that it might have invaded adjacent tissue, like nerves or blood vessels. The pathology report contains microscopic details:

• Tumor margins. The margins are the area around the tumor. If there are cancer cells found in those margins (called positive or involved margins), it is more likely that there are still cancer cells in the body.
• Grade. The grade compares how closely the cancer cells resemble healthy cells. When the cancer cells look more like healthy cells, it’s called “low grade,” also referred to as well-differentiated. If the cancer cells don’t look like healthy cells, the grade is considered “high grade” or poorly differentiated. The cells may also be somewhere in-between. Patients whose tumor cells are low grade have the best prognosis.
• Mitotic rate. You may remember the word, “mitosis” from high school biology. Mitosis is the process where one cell divides into two identical cells. The pathologist looks at how many cancer cells are dividing in the tumor — the fewer dividing cells, the better our prognosis.
• Invasive. Pathologists look to see if the tumor has invaded into adjoining tissue like nerves, blood vessels, or other healthy tissue.
• Lymph nodes. The pathologist examines all of the lymph nodes in the adjacent tissue to see if any of the nodes contain cancer cells. These are called positive lymph nodes — patients with positive lymph nodes may experience their cancer spreading.
• Genetic testing. Your tumor or biopsy sample might be tested for genetic mutations if the presence of those mutations influences treatment choices.

Pathology Report

The pathology report helps guide the remainder of our treatment — if we need radiation or chemotherapy after our surgery.

How Much You Want to Know

It’s a good idea to have a frank conversation about how much you want to know and how much you want to be involved in treatment decisions. Some patients want to know and understand the little details and participate in treatment decisions. Other patients may choose to trust their doctors and let them make the treatment decisions.

Treatment Goals

Of course, the obvious goal that patients hope for is to survive and be cured. But not every diagnosis is one where a cure is relatively easy without any lingering side effects. Each patient has different expectations. Our age, overall health, and lifestyle influence how aggressively we want to be treated. A young, healthy adult should discuss whether having a family is one of their future goals — in those cases, sperm or eggs can be frozen to preserve fertility. An older adult with co-existing medical problems may be more concerned with maintaining their quality of life.

Treatment Goals

Share Your Worries and Concerns

Don’t be embarrassed to share your concerns — especially financial concerns. None of us are prepared for how much cancer care costs. Your oncologist or surgeon can refer you to a social worker or insurance coordinator who helps patients with the financial aspects of cancer care.
You may be worried about your ability to work if you are the primary breadwinner of the family. Again, the social worker can help you.
Your biggest worry might be the potential disfigurement that your diagnosis may bring. Patients worry about mastectomies, colostomies, an artificial larynx, or extensive scarring. Open and frank conversations help alleviate fears.

Share Your Favorite Activities

The ability to maintain our quality of life is important. Being able to continue doing some of our favorite things helps make cancer treatment tolerable. Maybe you want to keep going to high school games to see your grandchildren play. Another person may love babysitting their new grandchild.

Maybe you love art or playing the piano. If the treatment causes numbness in your hands, you might not be able to do that activity as you did in the past. Sharing important activities helps guide our treatment team to try to avoid debilitating side effects.

The Bottom Line

While it may be impossible to anticipate the questions we may have and the potential adversities that might occur during our cancer treatment, it’s a good idea to bring up these topics early in your cancer treatment. The best surprise is no surprise at all.

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