After a Uterine Cancer Diagnosis: Questions to Ask Your Doctor

A diagnosis of uterine cancer (also known as endometrial cancer) can leave you and your loved ones feeling uncertain, anxious and overwhelmed. As your health care team talks about your diagnosis and treatment, ask questions about anything you don’t understand.

Here is a List of Questions That You May Want to Ask Your Health Care Team:

Since I’ve been diagnosed, I’ve been overwhelmed. How can I better cope with my diagnosis? A cancer diagnosis turns a person’s world upside down emotionally and physically. Your team of doctors, nurses and social workers are valuable sources of support as you cope with a cancer diagnosis. Oncology social workers are licensed professionals who counsel people affected by cancer, providing emotional support and helping people access practical assistance. CancerCare’s oncology social workers provide individual counseling, support groups and locate services face-to-face, online or on the telephone, free of charge. To learn more, visit www.cancercare.org or call 800-813-HOPE (4673).

What type of uterine cancer do I have? Uterine cancer occurs when the cells found in the uterus begin to change and grow uncontrollably, forming a tumor (also called a nodule), which can be either cancerous or benign. The main types of uterine cancer are uterine sarcomas and endometrial carcinomas.

What stage is my tumor? A tumor’s stage refers to its size and extent of spread in the body—e.g., whether it has spread to lymph nodes or other organs. Cancer that has spread to other organs is called metastatic cancer. A cancer’s stage is often denoted by a Roman numeral (I, II, III or IV). The higher the numeral, the more the cancer has spread within the body.

What is my recommended treatment plan? Depending on the information that your doctor has learned about your tumor, your treatment options may include surgery, radiation, hormonal therapy or chemotherapy.

What side effects might I experience throughout my treatment plan? Keep in mind that side effects can vary from person to person, and can be treated by your health care team. A key to managing side effects is to be aware of them and communicate with your health care team when they arise. Report them right away—don’t wait for your next appointment. Your health care team can help you cope with side effects of uterine cancer treatment. To help you get relief from side effects, your doctors and nurses need to know specific details about your symptoms. By keeping a side effect journal and bringing it with you to medical appointments, you can have this kind of information ready to share with them. Some of the things you may want to write down in your journal include:

• How long a side effect lasts
• The date and time a side effect occurs
• What impact the side effect has on your daily activities. For example—does pain keep you from sleeping?
• How strong the side effect is. For example—if you experience pain, how strong is it on a scale from 0 to 10, where 0 equals no pain and 10 is the worst pain possible?

Should I seek a second opinion? Usually with a new diagnosis there is a period of time, depending on the cancer type and stage, before treatment begins. During this time, getting a second opinion may help give you peace of mind or an alternative treatment possibility. Talk to your health care team and read CancerCare’s ‘When to Get a Second Opinion’ fact sheet for more information.

How does this diagnosis affect my fertility? A hysterectomy (generally the removal of the uterus and cervix) may be a treatment that can affect one’s ability to have children. Talk to your health care team about all of your treatment options and the long-term effects. For information on fertility, read CancerCare’s ‘Coping With Fertility Concerns: Finding Resources and Support’ fact sheet

How will uterine cancer affect my ability to be intimate? The physical impact of cancer and cancer treatments can affect how you relate to a romantic partner. While some women find it difficult to bring up intimacy concerns with their doctor, being open about the physical or emotional difficulties you are experiencing is the first step in having your concerns appropriately addressed by your medical team. Prepare yourself for any physical changes during treatment by having your doctor explain what these changes may be. Read CancerCare’s ‘Intimacy During and After Cancer Treatment’ fact sheet for more information.

Is there a clinical trial I can participate in? If so, will it be covered by my insurance? Clinical trials are the standard by which we measure the worth of new treatments and the quality of life of patients as they receive those treatments. For this reason, doctors and researchers urge people with cancer to take part in clinical trials. Read CancerCare’s ‘Clinical Trials: What You Need to Know’ fact sheet to learn more about clinical trials.

Surgery as a Treatment Option

Surgery is not a treatment option for everyone. If surgery is a treatment option for you, here is a list of questions that you may want to ask your health care team beforehand.

• Why is surgery the best option for me?
• What treatment options do I have that do not involve removing my uterus?
• What experience do you have performing uterine surgeries?
• How can I prepare for surgery?
• What can I expect recovering from surgery to be like?
• Will I need to be on medications after the surgery?
• Will this surgery limit me from being physically active? If so, for how long?
• What are the short-term and long-term effects of surgery?

Questions to Ask Your Health Care Team About Hysterectomy as a Treatment Option

• What type of hysterectomy do you recommend? What can I expect?
• What is the goal of having a hysterectomy?
• What changes can I expect after a hysterectomy?
• Can I experience early menopause after having a hysterectomy?

Edited by Stacy Lewis, LMSW, ACHP-SW