Gynecologic cancers: 4 affirmations to help you advocate for yourself

Editor's note: September is Gynecologic Cancer Awareness Month.

By Jessica Saenz

Gynecologic exams might not top the list of things you look forward to, but whether it's for a wellness visit or a new concern, such exams are critical for detecting gynecologic cancers early when they are most treatable. Gynecologic cancers include endometrial, ovarian, cervical, vulvar and vaginal cancer.

Gynecology visits should provide a valuable opportunity for you to ask questions, raise concerns and learn about your body from an expert who prioritizes your health and well-being. But if you've had difficulty getting answers, accessing the care you need or your experiences haven't been positive, these visits can cause some anxiety.

Learning how to advocate for your gynecologic health might help you feel more prepared for your next appointment, says Kristina Butler, M.D., a Mayo Clinic gynecologic oncologist. This is what she wants you to know:

You deserve a trusting relationship with your gynecologist.

Trust is a critical part of the patient-clinician relationship. It allows you to have frank and open discussions with your gynecologist and alert them to significant details that might affect your care.

"Gynecologic cancers are difficult to talk about because they involve parts of the body that we don't routinely discuss with other people," says Dr. Butler. "It can be difficult for a patient to bring up, for example, that they have pain in their vulva."

If you don't feel comfortable or confident expressing concerns like these to your gynecologist, there's a risk that serious conditions like gynecologic cancers could be missed. If you don't feel heard, Dr. Butler says it's OK to look for someone who is a better fit for your needs. Recommendations from friends and family can often be a good starting point.

You are the expert on your body.

When changes happen in your body, you might be the first — and often the only one — to notice. Informing your gynecologist of these changes helps them gain a more accurate understanding of your health and alerts them to anything that might require additional examination.

As life gets busy, it can be easy to overlook or dismiss certain changes, but Dr. Butler stresses the importance of being in tune with your body. "This means understanding what's normal for you. That can be difficult because everyone's 'normal' is a little bit different," she says. "If something is repetitive and doesn't feel right, it's important to talk about it."

While each gynecologic cancer has symptoms associated with it, some symptoms overlap. If you're experiencing any symptoms associated with gynecologic cancer, Dr. Butler says it's important to talk to a clinician who specializes in gynecologic health, especially if you don't feel your questions have been answered by your primary care physician. "Many gynecologic cancers have vague symptoms. Often, patients share symptoms with a provider who isn't a gynecologist, but it's important that they voice their concerns to multiple providers until they get the answers they need to know that they're safe," she says.

Symptoms you should always discuss with your healthcare professional include:

• Abnormal vaginal bleeding: Bleeding between periods, prolonged bleeding or any bleeding that occurs after menopause.
• Pelvic pain or discomfort: Pain or pressure in your pelvic area — the area of the body below the abdomen located between the hip bones.
• Early satiety: Feeling full after eating a small amount of food.
• Vulvar discomfort or itching: Pain, discomfort or itching in the vulva, which includes all the structures that make up the exterior genitals.

"Many providers care for the pelvic area, and this can begin with your primary care physician, but may also progress to a gynecologist, urologist or gastroenterologist," adds Dr. Butler. "We can collaborate together for your best outcome."

You have the right to be informed about your health.

Staying informed about your health can help you relay information to your healthcare professional and better prepare for appointments. Dr. Butler says you can do this in various ways.

"It's always helpful for patients to have a timeline. I am a proponent of having lists — lists of medications, surgeries, diagnoses and family history, which is tremendously important. All of this is lengthy and can be confusing or forgotten so keeping a timeline and a list of these things can help focus the visit," says Dr. Butler.

Dr. Butler recommends you take ownership of your medical records so you can share them with your healthcare team. "Your healthcare information — reports, pathology, surgical information, radiology imaging including discs of viewable pictures — you own that. You are allowed to have access to that information through medical record departments. It's your right, and I empower patients to keep those for themselves and carry these items with you on your visits."

As you seek to learn more about your health, Dr. Butler says it's important to find reliable health information. "Access to the internet is tremendously valuable for educating ourselves. However, we have to be careful about the resources from which we obtain information. Websites and blogs with inaccurate or completely false information can be anxiety-provoking and sometimes dangerous."

Dr. Butler recommends starting with these sites:

• National Comprehensive Cancer Network
• Mayo Clinic
• National Cancer Institute
• American Cancer Society

You are allowed to ask for a second opinion.

You have the right to seek a second opinion, and, Dr. Butler says, your gynecologist should never discourage you from doing so. "I find it concerning when a provider is bothered by a second opinion because patients have a right to formulate the best decision for themselves," she says.

You might wish to seek a second opinion for many reasons, including:

• You feel your symptoms have been dismissed.
• You are unclear on your diagnosis.
• You are unsure of your treatment options.
• You don't feel comfortable with the treatments recommended.
• You have unanswered questions.
• You don't feel you can trust your physician.

Regardless of your reason, it's your choice and part of your right to advocate for yourself. "I encourage my patients to ask for second opinions because it's the best way to know that they're making the right decision for themselves," says Dr. Butler.

Learn more

Learn more about endometrial, ovarian, cervical, vulvar and vaginal cancers, and find a clinical trial at Mayo Clinic.

Join the Gynecologic Cancers Support Group on Mayo Clinic Connect, an online community moderated by Mayo Clinic for patients and caregivers.

Also read these articles:

• Uterine cancer rates are increasing: What can you do to protect yourself?
• Mayo Clinic experts answer 4 questions about gynecologic cancer
• Your toolkit for reducing cervical cancer risk
• Dear Mayo Clinic: When your teenager needs to see a gynecologist