Woman In Her 40s Diagnosed With Endometrial Cancer After Heavy Menstrual Bleeding Urges: ‘Don’t Be Afraid To Speak Out. Get The Help’

“And so, I’m like, I’m not that old, so this is not it. Or postmenopausal, which was also not me. I didn’t think something was wrong.”

RELATED: Endometrial Cancer: Overview

Ultimately, Nissen chose to go to the emergency room to seek help, admitting, “I was so concerned about it, but I hadn’t told anybody because it’s kind of embarrassing where you’re like, here I am, you know, 40-some years old, and I can’t get my period under control.

She received her diagnosis at Nebraska Medicine and has since undergone surgery to remove the cancer, inspiring her to encourage others to get checked sooner than later, as her early-diagnosis allowed her to beat the disease with surgery.

“I had that stigma of like, ‘We don’t talk about these things.’ So yeah, just, it does change your outlook,” Nissen said.

“And I’m just happy to be on the other side of it.”

Nissen—now partnered with “Don’t Be Embarrassed,” a health campaign to help women overcome the stigma about health issues and empower them to get checked—hopes her story can help others make doctors appointment and schedule cancer screenings.

As for the health campaign she’s partnered with, she adds, “They take that embarrassment out of it. That shouldn’t even be part of the equation.

“Don’t be afraid to speak out. Get the help. Call your doctor. Do what you think is right for you.”

Don’t Ignore Your Risk Factors — Catching Endometrial Cancer Early Can Make a Difference

Although it’s unclear the exact stage or type of surgery Nissen underwent, when it comes to how endometrial cancer patients are staged, Dr. BJ Rimel, a gynecologic oncologist at Cedars-Sinai Medical Center in Los Angeles, California, says the oncologist will explain the next steps.

“We’re going to talk about what that pathology shows and what the next steps in treatment would be. If the diagnosis has been made after a hysterectomy, then we’re going to talk a little bit about what that diagnosis shows and what the stage, grade, or extent of disease might be and how we proceed for treatment from there,” Dr. Rimel explained.

Rimel adds that there are treatment options for every stage of the disease, with new options approved all the time.

The National Cancer Institute explains that there are different types of hysterectomy procedures.

• Total hysterectomy: Removal of the uterus and cervix, but the ovaries and fallopian tubes may also be removed.
• Supracervical hysterectomy: Removal of just the upper part of the uterus, but keeping the cervix. This may also be called a partial hysterectomy.
• Total hysterectomy with bilateral salpingo-oophorectomy: Removing the uterus, cervix, fallopian tubes (salpingectomy), and ovaries (oophorectomy).
• Radical hysterectomy with bilateral salpingo-oophorectomy: Removing the uterus, cervix, fallopian tubes, ovaries, the upper portion of the vagina, and some surrounding tissue and lymph nodes. This hysterectomy is done when cancer is involved.

WATCH: Staging Endometrial Cancer

Understanding the Symptoms of Endometrial Cancer

Endometrial cancer, a type of cancer that begins in the lining of the uterus, has strong treatment options, especially if it’s caught in the early stages, like in Nissen’s case.

That’s why knowing the signs and symptoms of the disease is so important. The sooner you seek treatment, the better your outcome is likely to be.

“As with disease in general, whether it be diabetes or endometrial cancer or even dementia, it’s important to find the disease at an early stage because potentially with treatment you can stop the disease from progressing,” Dr. Dana Chase, a gynecologic oncologist and associate professor at the David Geffen School of Medicine at UCLA, previously told SurvivorNet.

Dr. Jennifer Mueller, a gynecologic surgeon at Memorial Sloan Kettering Cancer Center, explains how surgery can help determine treatment path. 

The symptoms of endometrial cancer may vary from person to person, but the most common one is unusual vaginal bleeding.

Here are some important facts to know about symptoms:

• More than 90% of women with endometrial cancer (also sometimes called uterine cancer) experience abnormal vaginal bleeding.
• If you are still having periods, abnormal bleeding might mean bleeding between periods or having very heavy periods.
• If you have gone through menopause and stopped having periods, any amount of vaginal bleeding is considered unusual. This is even more important if you are not taking hormone therapy for menopause symptoms like hot flashes or vaginal dryness.
• It’s normal for those taking hormone therapy for menopause to experience some bleeding in the first few months of treatment. But, if you are on hormone therapy and notice any bleeding, it’s still something you should talk to your doctor about.

“So it’s very, very important to spread the word that if you have irregular bleeding, even a pink discharge, it doesn’t have to be bright red blood, even a pink discharge, don’t hesitate or don’t be afraid to get that checked out,” Dr. Chase stresses.

Dr. Dana Chase explains what may be considered irregular bleeding

Other symptoms of endometrial cancer may include:

• Pelvic pain: Some women may experience pain or discomfort in the pelvic area.
• Pain during intercourse: This symptom is less common but can occur in some cases.
• Unusual vaginal discharge: Watery or blood-tinged discharge may be a sign of endometrial cancer.
• Weight loss: Unexplained weight loss can sometimes be associated with cancer.
• Urinary problems: Difficulty or pain when urinating may also be a sign.

Many of these symptoms could generally be a sign that something is wrong and don’t necessarily point to endometrial cancer. All the more reason to proactively seek a medical opinion when you notice something unusual happening with your health.

Should I Be Screened for Endometrial Cancer?

Doctors don’t recommend endometrial cancer screening for most women. However, there are some very important exceptions, including:

• Any woman who has experienced any unusual bleeding or other significant symptoms that could be related to a diagnosis
• Women with Lynch Syndrome, an inherited genetic disorder, that increases the risk of several cancers
• Women with a history of certain hormone-related conditions such as polycystic ovary syndrome (PCOS) may need screening
• Women who have undergone hormone replacement therapy without progesterone.

“We don’t yet have a screening test for endometrial cancer,” Dr. Chase says.

“The one patient that you might be able to screen for endometrial cancer with endometrial biopsies is a patient that has known Lynch syndrome. So if you are known to have Lynch syndrome like you’ve been tested for it and you have Lynch syndrome, which is that hereditary cancer syndrome that is associated with endometrial cancer, you could be eligible for this screening protocol, which I would discuss with your doctor.”

Dr. Chase also recommends that women with PCOS pay special attention to their risk.

“PCOS is a condition that involves irregular menses — they don’t ovulate every month. So in order to have regular periods, you have to ovulate every month. And if you don’t ovulate, you might not have a period for several months, or you might have two periods within three weeks. Anovulatory bleeding is a risk factor for endometrial cancer, and it’s one of the characteristics of a patient that has PCOS,” she explains.

However, some doctors don’t believe additional screening for PCOS is necessary. Be sure to discuss this with your doctor to understand what’s right for your particular situation.

Dr. Chase also highlights the heightened risk of endometrial cancer for women who are being treated with a drug called Tamoxifen for breast cancer.

“Tamoxifen is a drug that’s frequently used in certain breast cancer patients to try to prevent their cancer from coming back,” Dr. Chase says. “It can stimulate the endometrial cells to proliferate and if they proliferate uncontrollably, they can turn into endometrial cancer.”

Taking the drug doesn’t mean you should go in for more frequent exams or biopsies, she clarifies, but if you have irregular bleeding on Tamoxifen, it should be brought to the attention of your doctor immediately.

Additionally, if you have a metabolic condition such as obesity, type 2 diabetes. or metabolic syndrome, it’s worth having a discussion with your doctor to see if endometrial cancer screening makes sense for you. And of course, make an appointment with a health care professional if you experience any symptoms that worry you.

Why is Early Diagnosis Important?

Although the majority of women with endometrial cancers start showing symptoms at an early stage, some don’t.

If you suspect you may have endometrial cancer because of abnormal vaginal bleeding or some other reason, don’t hesitate to get a medical opinion.

Early detection increases the number of treatment options that might be beneficial, including less invasive treatments that make recovery easier.

It also ups the likelihood of successful treatment with better outcomes. Early-stage endometrial cancer is often associated with a lower risk of recurrence and a higher five-year survival rate compared to advanced stages. Your doctor can get you the appropriate treatment promptly, potentially preventing the cancer from spreading to other organs or tissues.

“When it’s early stage, for example in endometrial cancer, when it’s just confined to the uterus, you could potentially get cured with surgery alone, meaning you wouldn’t need any radiation, you wouldn’t need any chemotherapy, you’d have surgery and we would tell you that you would have a high chance of being cured,” Dr. Chase says.

Overall, early detection significantly improves the prognosis and overall well-being of individuals diagnosed with endometrial cancer. As the cancer spreads and as the cancer progresses, the amount of treatment needed to cure the cancer increases and the survival rate decreases.

Exciting New Combination Therapy Gives Hope To Women With Advanced Endometrial Cancer

Can Endometrial Cancer Be Prevented?

While certain factors like age and genetics can’t be changed, there are ways to lower your risk, including:

• Maintaining a healthy weight through a balanced diet and regular exercise, as obesity is a significant risk factor
• Considering the use of oral contraceptives (birth control pills), which can reduce the risk of endometrial cancer
• Managing hormone therapy carefully with your doctor, as estrogen-only hormone replacement therapy (HRT) without progesterone may increase the risk of endometrial cancer
• Controlling conditions associated with insulin resistance, such as diabetes and metabolic syndrome, through proper management and healthy lifestyle changes
• Limiting alcohol and tobacco (both up the risk of endometrial cancer)
• Getting regular check-ups and screenings, especially if you fall into a high risk category
• Immediately seeing a doctor if you have any abnormal bleeding or other symptoms that could be related to endometrial cancer
• Considering preventive measures, such as prophylactic surgery or medications, if you are at high risk because of genetic factors like Lynch syndrome

Questions to Ask Your Doctor

• Should I be screened for endometrial cancer?
• Is the vaginal bleeding I’m having abnormal?
• If I have cancer, how advanced is it?
• How will we manage my care?

Contributing: SurvivorNet Staff

Learn more about SurvivorNet's rigorous medical review process.

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