The Facts About Uterine Cancer

There are two predominant types of uterine cancer: endometrial cancer and uterine sarcoma. This article focuses on uterine sarcoma.

Cancers that begin in tissues like muscle, fat, bone and fibrous tissue are known as sarcomas. In uterine sarcoma, cancer cells form in the muscle or supporting tissues of the uterus. Uterine sarcoma is rarer, more aggressive and harder to treat than endometrial cancer.

Different types of uterine sarcoma include:

• Leiomyosarcoma
• Endometrial stromal sarcoma
• Adenosarcoma
• Carcinosarcoma
• High-grade undifferentiated sarcoma
• Adenosarcoma with sarcomatous overgrowth
• Perivascular epithelioid cell tumor

As it is rare, only 1,200 women are diagnosed with uterine sarcoma annually in the United States. Uterine sarcomas make up about 2 percent to 5 percent of all uterine cancers. Women older than 40 are the age group most commonly affected.

According to the American Cancer Society, uterine leiomyosarcomas occur twice as often in Black women compared with white women, but this is not the same case for other types of uterine sarcoma.

The most common symptoms of uterine sarcoma are:

• Abnormal vaginal bleeding
• Unusual vaginal discharge
• Vaginal bleeding between menstrual periods
• Vaginal bleeding after menopause

Other symptoms can include:

• Pelvic pain
• An unusual feeling of fullness in the pelvic area
• Frequent urination
• A mass in the vagina

If you have any symptoms or are concerned, the first place to go is your primary healthcare provider or OB-GYN. They can take a full medical history, do a physical examination and perform certain tests. They may refer you to a specialist if necessary.

Some of the diagnostic tests may include:

• A physical examination: A general whole-body check.
• Blood tests: To look for any abnormalities in your blood.
• A pelvic examination: A physician looks at your vagina, cervix and rectum. They might insert a speculum into your vagina to inspect your cervix. They might also use gloved fingers to examine your reproductive organs and feel for abnormalities.
• A PAP smear test: Collects cells from the cervix to view under a microscope.
• A transvaginal ultrasound scan: Uses an ultrasound probe in the vagina to produce a picture of the uterus, other reproductive organs and neighboring body parts.
• Dilation and curettage: Removes tissue samples from the uterine inner lining to view under a microscope.
• Endometrial biopsy: Uses a thin, flexible tube placed through the cervix and into the uterus to remove tissue from the endometrium, the inner lining of the uterus.

You might need some or all of the tests to confirm a diagnosis of uterine sarcoma. Your doctor explains each stage, every test and what is going on along your diagnosis journey.

The type of treatment you need depends on the type and stage of uterine sarcoma you have. Your healthcare team also considers your age, overall health, past medical history, family plans and personal preferences.

Treatment might involve one or several of the following:

• Surgery
• Radiation therapy
• Chemotherapy
• Hormone therapy
• Targeted drug therapy
• Immunotherapy

You may have more than one treatment option. Discussing options with your medical team and your family or support network is vital. Ask plenty of questions if you need help understanding the different options so you can choose the right treatment option for you.

In the past, there hasn't been a lot of research into uterine sarcoma because it is so rare. However, research is progressing, and scientists are beginning to understand more about gene changes.

Understanding gene changes can help doctors develop new imaging tests to help diagnose uterine sarcoma. They can also use this information to create new targeted drug therapies to treat uterine sarcoma. Cancer research is advancing all the time, and treatment is now very specific to the individual and their cancer.

You can't prevent uterine sarcoma. However, two factors can put you at greater risk of developing the disease:

1. If you have had pelvic radiation to treat another type of cancer, you have a higher risk of developing uterine sarcoma.
2. Taking tamoxifen, a hormone therapy for breast cancer, can slightly increase your risk of uterine sarcoma.

However, the benefits of both of these treatments far outweigh the risk of developing uterine sarcoma. It's just good to be aware that if you have had either of these treatments, you should try to spot any signs of uterine cancer as early as possible. The earlier you recognize cancer, the easier it is to treat.

Finishing cancer treatment might leave you with mixed emotions. Although a relief, it can be overwhelming and worrying. Speak to your healthcare provider about a survivorship care package that might include the following:

• A schedule for follow-ups
• Any ongoing or future tests needed
• Specific effects to look out for and advice on when to call your doctor
• A lifestyle guide with suggestions about diet and exercise
• Information about groups and local organizations that can provide emotional and peer support

Some places have survivorship centers or survivor support groups and follow-up programs. Make sure you have a support network around you. It can take a while to adjust back to life without cancer, and talking it through with people you trust can help.

Although uterine sarcoma is mainly diagnosed in older women, it can also affect women of reproductive age. As it directly affects the reproductive organs, it impacts your fertility. For instance, if you are advised to have a hysterectomy (removal of the uterus) or bilateral oophorectomy (removal of both ovaries), you will no longer be fertile or able to have children. Treatments such as radiotherapy and chemotherapy can also impact your fertility.

However, this doesn't mean you don't have family-building options. Before starting any treatment, speak to your cancer care team about possible impacts on your fertility and what fertility preservation options are available. These fertility preservation treatments include:

• Egg freezing
• Embryo freezing
• Ovarian tissue freezing
• Ovarian transposition, where the ovaries are moved away from the area of radiation treatment
• Fertility-sparing surgery. Sometimes, if uterine cancer is in its early stages, areas such as the cervix can be removed without removing the whole uterus or ovaries

There are also options after treatment, such as donor eggs, donor embryos, surrogacy and adoption, if you are no longer fertile but want to have a family.

After cancer treatment, it's common to experience sexual and vaginal health changes such as:

• Low libido
• Vaginal dryness, discomfort and pain
• Difficulty with sexual arousal
• Pain during sex
• Changes in body image
• Changes in feelings about sex

Most cancer care centers have a variety of doctors, nurses and specialist therapists who can help you with any sexual concerns. They can provide:

• Education about your reproductive anatomy and any changes that may be taking place
• Counseling to enhance communication and intimacy with your sexual partner
• Advice on vaginal lubricants to use to relieve any discomfort
• Advice on vaginal dilator therapy
• Medications such as hormone replacement therapy (HRT), pain relievers or others that can help with sexual dysfunction
• A referral to a physical therapist to help you strengthen your pelvic floor muscles

Are there different kinds of uterine cancer?

The two primary types of uterine cancer are uterine sarcoma and endometrial cancer. Each of these types of cancers has several subtypes. Your cancer team can diagnose the type and stage if you have uterine cancer.

Does uterine cancer spread quickly?

Every case of uterine cancer is different. It doesn't affect two women the same way. Therefore, whether or not it spreads depends on the type and grade of uterine cancer and the individual.

What is the survival rate for uterine sarcoma?

The American Cancer Society lists the five-year survival rates of uterine sarcoma (for all stages combined) as:

• Endometrial stromal sarcoma, low grade: 95 percent
• Leiomyosarcoma: 39 percent
• Undifferentiated sarcoma: 43 percent

However, these numbers are based on large general populations and don't consider every possible factor. Your prognosis depends on the type and stage of uterine cancer, medical history, lifestyle and many other factors. Your doctor can talk to you about your individual prognosis.