Frequently Asked Questions about Uterine Cancer

Q: What is the uterus?
A: The uterus is a hollow, pear-shaped organ. It is located in a woman’s pelvis between the bladder and rectum. Fallopian tubes on both sides of the uterus connect it to each ovary. The bottom part of the uterus is called the cervix. The cervix connects the uterus with the vagina. The middle round part of the uterus is called the corpus. The round part at the top of the uterus is called the fundus. The uterus holds a developing fetus during pregnancy.

The walls of the uterus are made up of 3 layers.

  • The inner layer is called the endometrium.
  • The middle layer is called the myometrium.
  • The outer layer is called the serosa. The serosa covers only the upper part of the uterus.

Q: What causes uterine cancer?
A: All the causes of uterine cancer are not known. Doctors believe that hormones that are out of balance most often cause uterine cancer. The ovaries make most of the female hormones estrogen and progesterone. If the uterus is exposed to too much estrogen over a long period of time, cancer cells may develop.

Q: What are the types of uterine cancer?
A: There are 2 main kinds of uterine cancer. They are named based on where they occur in the uterus.
Endometrial carcinoma. This is the most common form of uterine cancer. Cancer that grows in tissues that form linings throughout the body is called carcinoma. Endometrial carcinoma is cancer that forms in the lining of the uterus, called the endometrium. The endometrium is the tissue in the uterus that thickens every month so that it will be ready to receive a fertilized egg. If the egg is not fertilized, it passes through the uterus and the endometrium sheds through the vagina. This is menstruation.

Uterine sarcoma. This is a much less common form of uterine cancer. Cancer may also occur in the other tissues of the uterus, such as in the muscle, called the myometrium. The myometrium works mainly during labor to help push the baby through the cervix and vagina. Other areas in which cancer can form are in the connective tissues or in the outer layer. Cancer in any of these tissues of the uterus is called sarcoma.

Q: What are the symptoms of uterine cancer?
A: These are the most common symptoms of uterine cancer.

  • Unusual bleeding or discharge from the vagina
  • Any bleeding from the vagina after menopause
  • Pain when urinating or when having a bowel movement
  • Pain during sexual intercourse
  • Pain in the pelvic area or lower abdomen

These symptoms may be due either to uterine cancer or to several other health problems. So if you notice any of them, talk with your doctor right away.

Q: What are the risk factors for uterine sarcoma?
A: Certain factors can make you more likely to get uterine cancer. These are called risk factors. But just because you have one or more risk factors does not mean you will definitely get uterine cancer. In fact, you can have all the risk factors and still not develop the disease. Or you can have no risk factors and still get uterine cancer. For some types of cancer, there are clearly identified risk factors. For uterine sarcoma, less is known about specific risk factors, but women with these risk factors tend to have uterine sarcoma more commonly than women without the risk factor:

  • Tamoxifen. Tamoxifen is a drug used to prevent or treat women who have breast cancer. Women who take tamoxifen may have a higher risk of getting uterine sarcoma, although the information is somewhat controversial.
  • Older age. Most women who get uterine sarcoma are older than age 50.
  • Prior radiation therapy to the pelvis. While rare, women who have had prior therapy for cancers to the pelvis (cervical cancer, endometrial cancer, colon cancer) have a higher risk of developing some types of uterine sarcomas than women who have not had prior radiation.
  • Race. African-American women develop uterine sarcomas more commonly than Caucasian women. Why that is, is not known.

Q: How can I reduce my risk for uterine sarcoma?
A: Since the main reasons women develop uterine sarcoma are not clearly known, it is difficult to recommend steps to reduce risk. It is reasonable to eat well and exercise regularly to help you keep your weight at a healthy level.

Q: What screening tests are available for uterine cancer?
A: There is no standard screening test to find uterine sarcoma.

Q: How is a diagnosis of uterine sarcoma made?
A: The symptoms related to uterine sarcoma frequently lead to medical evaluation. Irregular bleeding, heavy periods, pelvic pressure, a mass in your pelvis or abdomen, or bleeding episodes after menopause should all prompt an evaluation. Some symptoms can be caused by less serious problems. To find out the cause of any of these symptoms, the doctor asks you about your health history and your family medical history. He or she does a careful physical exam. This includes a pelvic exam and Pap test. This test does not show if a woman has uterine cancer, because it checks cells in the cervix, not the uterus. But it can help make sure you don’t have another problem with similar symptoms.

The doctor may order a biopsy to help make a diagnosis. During a biopsy, the doctor removes some tissue from the inner uterine lining, called the endometrium. This can usually be done in the doctor’s office with no or little anesthetic. Another type of biopsy is dilation and curettage (D&C). This involves scraping tissue from different parts of the lining of the uterus. A D&C is usually done in a surgery center or hospital.

Q: If I have uterine sarcoma, will I need a hysterectomy?
A: Surgery to take out the uterus, called a hysterectomy, is the main way to treat most types of uterine sarcoma. Sometimes, a hysterectomy can get rid of all the cancer in your body, providing a cure. This is especially true for early stages of uterine sarcoma. While removing your uterus, your surgeon may also take out your fallopian tubes and ovaries as the cancer can spread to these organs. You may have other treatments before or after surgery. These include radiation, chemotherapy, or hormones.

Q: What is staging of uterine sarcoma?
A: Staging is a way to describe how large the cancer is and how far the cancer has spread. Finding the stage of uterine cancer helps your doctor determine the best treatment for you. For uterine sarcoma, these are the 4 stages.

  • Stage I. The cancer is only in the uterus. It is not in the cervix.
  • Stage II. Stage II cancer means that there are also cancer cells in the cervix.
  • Stage III. Stage cancer has spread outside of the uterus, but it is still in the pelvic area.
  • Stage IV. This means that the cancer has spread to other parts of the body, such as lungs, liver, bone, or brain.

Q: What are the treatments for uterine sarcoma?
A: Treatments for uterine cancer include surgery, radiation therapy, hormone therapy, and chemotherapy.

Surgery is the most common treatment for women with uterine cancer, and often the only treatment needed. A standard surgery for endometrial cancer is the removal of the uterus (hysterectomy), with removal of the attached ovaries and fallopian tubes. In many cases, your doctor will also recommend removal of lymph nodes from the abdomen and pelvis to see if the cancer has spread. The complete surgery of hysterectomy with lymph node removal is called surgical staging. Surgical staging can be performed through an incision on your abdomen (laparotomy, open procedure) or by laparoscopy (minimally invasive surgery using cameras to help with the surgery) Your doctor will discuss which approach is best and why.

Radiation uses high-energy beams directed to an area in the body (for endometrial cancer, the pelvis) to kill cancer cells. Radiation is most frequently used after surgery, but in some cases is used before surgery. For rare patients who have severe medical problems and cannot tolerate surgery safely, radiation may be used instead of surgery. Radiation is recommended for some patients after surgery due to the presence of certain factors in the uterus or lymph nodes that suggest the cancer has a high risk for returning (recurring) if only surgery is used. Radiation may be given by placing an apparatus into the vagina to deliver radiation to the tissues (internal radiation). It may also be given by using a machine to focus the radiation beam into a area of the body (external radiation).

Chemotherapy is the use of anticancer drugs typically administered by vein to kill cancer cells. Chemotherapy is a systemic therapy (travels from head to toe) which works throughout the body, while radiation therapy only works on the area where the radiation is given. Chemotherapy may given to patients whose cancer has spread at the time of their diagnosis or to treat a cancer which comes back (recurs).

Hormone therapy is a type of drug therapy frequently using a class of hormones called progestins. The drugs are given by mouth or by injection. They travel through the body in the blood and can work on special targets on cancer cells called hormone receptors. Hormone therapy is used to treat widespread disease or cancers that return (recur).

Q: Should everyone get a second opinion for a diagnosis of uterine cancer?
A: Many people with cancer get a second opinion from another doctor. There are many reasons to get a second opinion. Here are some of those reasons.

  • If your treatment plan was not developed with the help of a cancer specialist (gynecologic oncologist, medical oncologist, radiation oncologist).
  • You don’t feel comfortable with the treatment decision.
  • The type of cancer is rare, such as with uterine sarcoma.
  • There are different ways to treat the cancer.

Q: How can someone get a second opinion? A: There are many ways to get a second opinion.

  • Ask a primary doctor. Your doctor may be able to recommend a specialist. This may be a gynecological oncologist, surgeon, medical oncologist, or radiation oncologist. Sometimes these doctors work together at cancer centers or hospitals. Do not be afraid to ask your doctor about a second opinion.
  • Call the National Cancer Institute’s Cancer Information Service. The number is 1-800-4-CANCER (1-800-422-6237). They have information about treatment facilities. These include cancer centers and other programs supported by the National Cancer Institute.
  • Consult the Official ABMS Directory of Board Certified Medical Specialists. This reference book from the American Board of Medical Specialists lists doctors by state. It gives their specialty, background, and training. It is available at most public libraries. You can also view it online at www.abms.org.
  • Seek other options. Check with a local medical society, a nearby hospital or medical school, or a local cancer advocacy group to get names of doctors who can give you a second opinion. Or ask other people who have had cancer to refer you to someone.

Q: What are the side effects of treatment?
A: Surgery causes temporary pain in the area of the operation, but it can be controlled with medicine. You’re likely to be uncomfortable during the first few days after surgery. Be sure to discuss pain relief with the doctor or nurse. You may also feel tired or weak for a while after the surgery. You may have bleeding, cramps, or watery vaginal discharge for up to 6 weeks after surgery. You may have pain in her lower abdomen and trouble emptying your bladder. You may also have trouble with bowel movements. All these problems are usually temporary. Your sexuality is also affected by surgery, especially a hysterectomy. If you are of childbearing age, you may grieve because you can no longer have children. You may also have symptoms similar to going through menopause. Often, it helps to discuss these issues before surgery with your partner and your doctors.

Radiation affects both cancer cells and normal cells. Side effects of radiation depend on what part of the body is treated. Common side effects of radiation therapy are fatigue, skin changes, loss of appetite, nausea, and diarrhea. Sometimes, you might find that your vagina is narrower and less flexible. Sexual intercourse may be difficult because the skin in the treated area can be sensitive during treatment. Some of these effects will subside after treatment, while others may be permanent. Chemotherapy affects both cancer cells and normal cells. The side effects you may notice depend on the particular drug(s) used. Common side effects of chemotherapy are nausea and vomiting, hair loss, mouth sores, diarrhea, and fatigue. Other serious side effects that may occur are infection or bleeding. Your doctor will work with you to control side effects.

Hormone therapy may cause side effects as well. You may feel tired. You may also be more or less hungry than usual.

Q: What kind of checkups will I need after being treated for uterine sarcoma?
A: After treatment for uterine cancer, you’ll most likely visit the doctor every 3 months for the first 1-2 years after treatment. Then you may need checkups every 6 months for the next 5 years. After that, you may need yearly checkups. At each office visit, your doctor will ask questions about symptoms that may suggest that the cancer is returning (recurring). These include if you have any pain, leg swelling, and vaginal bleeding. Be sure to mention any other changes you notice in your health. At each visit an examination will be performed and may include pelvic exam, Pap tests, and other tests, such as blood and urine tests. You may need imaging studies such as CT scans, ultrasounds, and X-rays.

Q: Are there support groups for women with uterine cancer?
A: Yes. Support groups for women dealing with uterine cancer are held all over the country . Having someone to talk with who is going through similar experiences is often helpful. Support groups also offer you information on treatment options, prognosis, and follow-up care. Your doctor can recommend one in your area.

Q. What are clinical trials?
A: Clinical trials are studies of new kinds of cancer treatments. People who join trials also help researchers learn more about cancer and help future people with cancer. Doctors use clinical trials to learn how well new treatments work and what their side effects are. Promising treatments are ones that work better or have fewer side effects than the current treatments. In some cases, clinical trials provide patients with access to new treatments that they would not be able to get otherwise. Not all patients are eligible for a clinical trial. Ask your doctor if a clinical trial is right for you.

 

Comments

Ladies - listen to your bodies - really listen. And don't forget to raise any issues with your doc. Don't blow off your symptoms. I went to my GP with what I thought was a yeast infection. His office said it was bacterial vaginosis, but the culture came back negative. Several days later I had severe vaginal bleeding and the GP sent me for ultrasounds. One week later GP says I need a hysterectomy and sent me to a gyne. It took 3 weeks to get an appointment. Five days later he did a D&C and told me I had cancer. This transpired over a period of two months. If the GP knew it was cancer (likely) why didn't he say something and why didn't the gyne see me sooner. Too many delays. I saw a gynecological oncologist who wasted no time in doing a total hysterectomy. I am now facing further treatment because they also found a very small spot on a pelvic lymph node. Why don't docs listen to their patients?

I have had negative paps for a couple of years, and a nurse would call and say come back in six months for a recheck. I finally asked for the new dr. in the office to do my exam and she listen to my issues and she thought I should have some additional test like the intravaginal ultrasould which did determined I had endometrial hyperplasia and she also done a biopsy of the uterus which did come back with irregular cells. She believed that it was in my best interest to have a complete hysterectomy. It was then when the path test was done that I was diagnosed with stage 1 uterine cancer. I was lucky the dr. I had listen to me and stepped up and requested other tests. I have had my surgery and doing great without radiation and chemo. I have just had my six month pap. I do not know those results yet but the dr. anticipates good news. Thank you for letting the people read these comments. I feel that I related to many of these women.

Found the article very informative. Biopsy on 8/27; Diagnosed with uterine cancer on 9/3;D&C on 9/6; See Dr. on 9/8. MRI on 9/10. My Dr is very aggressive and I love her for being so. I plan to join this effort to fight to wipe out this disease. Thank you and God Bless

Excellent article. I wish there was more information when I had my surgery. I am a 22 year survivor ( I was only 33 years old ) of stage 1 endometrial cancer. There was no one in my age group in my area for me to talk to. It was unusual for someone my age to have this type of cancer - that was what I was told. Thank you for the information

I am thankful this information is available now. Ladies home journal also just put out a wonderful article (sept. 2008) which has a check list and available websites to visit for information. God Bless all of you working to bring awareness and tools to women to better advocate for their health. I had chronic bleeding for almost two years. An unltrasound was done but did not detect the cancer my oncologist believed was present. It was a year later when I visited a new gyno (who took a biopsy) that I was diagnosed with Endometrial cancer. If I had the check list provided in the Ladies Home Journal Atricle, I would have insisted on a biopsy a year ago and my cancer very likely would not have grown... I am grateful for all the efforts to now arm women with information and support. Thank you all, I hope to join in the effort. Judy Webb

this article was wonderful, i had a uterine biposy on this past friday and am waiting for the results. they had to do 3 biopsy's due to i was bleeding so much. so this helped with a lot of questions i am concerned with.

I can't stress enough about listening to your body. I listen to mine-I had endometrial carcinoma-stage 1. I was tired all the time and started to find out why. Then in October 2007 I started to have periods my last period was 1994 I was 57 years old. I had cramping and intercourse hurt. My husband was very concerned and encouraged me to go and find out why. In November I started again and continued to spot thoughout the month and though December. Went to the doctor and he saw the bleeding but I needed to have a D & C. In April 2008 I had a complete hysterectomy. People asked me the signs all I can say is I just wasn't feeling right. Women fluff off when they feel bad. But after the surgery I couldn't believe how good I felt. I have to do the pap every 3 months and a CT scan every 6 months. I tell people I didn't realize at the time how bad I had felt before finding out what was wrong with me. I'm thankful I had a wonderful husband who loved me enough to tell me go to the doctor and find out what was wrong. My family and friends were terrific also.

very simple, easy to understand and informative

My wonderful mother just passed away from endo/uterine cancer two months ago.
Her only symptom was occassional spotting for a few wks. She excercised, ate healthy, was not overweight, but she did take hrt for approx ten years. I am still looking for answers. She went through hysterectomy, chemo, radiation and my heart
aches for her.