What all women need to know about gynecologic cancers

Lightning speed. That’s how quickly cancer took my friend’s life. Her name was Jan Willis and she was only 64 years old. A devoted wife, mother, new grandmother, aunt and friend.

I don’t think I’ve ever met anyone as competitive as Jan. No matter what it was, a game of cards or a game on the tennis court, Jan liked to win. We all expected she’d beat cancer as well, but on February 5th, a mere three months after she was diagnosed with stage III fallopian tube cancer, Jan died. I still can’t wrap my brain around it.

Her husband Paul gave me permission to write about her experience and to interview her cancer specialist. Our aim is to hopefully, prevent other women from following down Jan’s path. Unfortunately, gynecological cancers are not always easy to detect in the early stages. But the more you know, the better your chances of picking up something unusual and getting it checked out.

Jan had started taking a prescribed medication for acid reflux. On a Thursday, she had an uncomfortable feeling in her belly and noticed that she was bloated. On Monday, her doctor’s office told her the medication can cause bloating and that it should subside. It got worse. On Wednesday, she had a CT scan, which showed a baseball-sized mass in her abdomen. First thing Thursday morning, she was in the operating room.

Her surgeon, Dr. Emmanuel Soultanakis, told me that Jan’s cancer started inside her fallopian tube, but had spread to the upper part of her belly. He’s a gynecologic oncologist. In other words, his specialty is gynecologic cancers and he practices at Maine Medical Partners – Women´s Health Gynecologic Oncology. Instead of being the size of a baseball, in surgery, he discovered that it was actually the size of a softball. That’s a big difference and it was never lost on Jan. Yet, her only symptom was bloating.

Jan introduced me to Dr. Soultanakis one night in the hospital and with a big smile told him to expect to hear from me because I’d probably want to write about her. With all my heart, I wish I could be telling you a different story but maybe we’ll be able to save another woman’s life.

Here are some things that all women should know about gynecologic cancers.

What are gynecologic cancers?

• Endometrial or uterine cancer
• Ovarian and fallopian tube
• Cervical
• Vaginal
• Vulvar

Endometrial or uterine cancer

Endometrial cancer is the most common gynecologic cancer, and the fourth most common cancer overall in women — after colon, lung, and breast cancer. It begins in the cells that form the lining of the uterus and is sometimes called uterine cancer.

Signs and symptoms

• Abnormal vaginal discharge
• Abnormal bleeding
  • Heavier than usual
  • In between periods
  • Longer than usual
  • After menopause
• Pain or pressure in your pelvis

Risk factors

• Age (being over 50)
• Obesity
• Taking estrogen alone during menopause
• Reproductive and menstrual history
  • Never had children
  • First period before age 12
  • Menopause after age 55
• Diabetes
• High blood pressure
• High-fat diet
• Taking Tamoxifen, a drug used to treat some breast cancers
• Family history of uterine, colon or ovarian cancer

What may lower your risk

• Maintaining a healthy weight
• Being physically active
• If you are on estrogen during menopause, adding progesterone
• Eating a low-fat diet
• Birth control pills

Dr. Soultanakis stressed that women should never ignore one of the major symptoms — abnormal bleeding. It’s especially important to pay attention to bleeding that happens after menopause.

“Women may think of vaginal bleeding as a normal process but it’s important to know that after you go into menopause it’s not a normal process anymore,” he said. “Between your 20s and your 50s, it’s a normal process, but once you go through menopause and stop having periods, any return of that bleeding is abnormal.”

Fallopian tube and ovarian cancer

The symptoms of fallopian tube, ovarian, (and peritoneal) cancer are similar and they also tend to be vague and difficult to pinpoint early on. “By the time women begin to have symptoms of bloating or pain, they’re often at stage three or stage four,” said Dr. Soultanakis. “One thing that the studies have shown in the past is that they do begin to get symptoms a little bit earlier on but they’re so nonspecific and things that we all get from time to time.”

Symptoms

• Abnormal vaginal discharge
• Abnormal bleeding
• Bleeding after menopause
• Pain or pressure in the pelvis or abdomen
• Back pain
• Bloating
• Feeling full quickly while eating
• Change in bathroom habits
  • Need to urinate badly or often
  • Constipation or diarrhea

Another problem with ovarian and fallopian tube cancer is there are no good screening tools.  “Unfortunately,” said Dr. Soultanakis, “early diagnosis is most often by coincidence. We’ll be looking for something else and find cancer at an early stage.”

The tests generally used to diagnose them are transvaginal ultrasound, blood tests, including the CA-125, and pelvic exam.

“But, it’s a variable disease,” said Dr. Soultanakis. It doesn’t look the same on everybody so it’s really hard to pinpoint a test. When compared to diagnosing cancer of the cervix, it’s more difficult. The cervix is accessible to us. We can see it, we can biopsy it, we can screen it, we have access to it externally. With the ovaries and fallopian tubes, we have not had that capability.”

They’re just as challenging to treat as to diagnose. “Treatment is a combination of surgery and chemotherapy and the outcomes very much depend on response to chemotherapy,” he said. “Every tumor is a little bit different.”

Jan’s situation was not typical. Her cancer moved quickly and did not respond well to chemotherapy. “A lot of these cancers are responsive to chemotherapy,” said Dr. Soultanakis. “The reason we’ve had some good results with women who have survived for many years with these diseases is because of their response to treatment. But we have no way to predict who’s going do well until we begin to treat.”

Risk factors

There are certain things that increase of woman’s risk of developing ovarian and fallopian tube cancer.

• Age (40 and older)
• Family history of ovarian cancer on either side of the family
• Personal history of breast, uterine or colorectal cancer
• Eastern European Jewish background
• Never had children or had trouble getting pregnant
• Endometriosis

What may lower your risk

• Being on birth control pills for more than five years
• Tubal ligation
• Removal of both ovaries
• Hysterectomy
• Giving birth

Cancer of the cervix

The one gynecologic cancer that we can screen for is cervical cancer. Ever since the Pap test was introduced in the 1940s, the number of cases has gone done 70 percent and the number of deaths is down 90 percent.

We also now know that cervical cancer is caused by several strains of the human papillomavirus (HPV). That’s why it’s important to ask your doctor about getting both a pap smear and an HPV test. Dr. Soultanakis also recommends HPV vaccination for young girls and young adults to reduce the risk of an HPV infection.

Even with good screening tools for cancer of the cervix, Dr. Soultanakis says there’s a subset of women who go years without a GYN exam. “We’ll see women who present with cancers of the cervix in their 50s and they haven’t been screened in the last 20 years,” he explained. “They had a couple of kids in their 20s or early 30s and then nothing happened between 30 and 50 because they’ve been pretty healthy.”

Signs and symptoms

• Early stages may have no signs or symptoms
• Advanced stages may cause abnormal bleeding or discharge

Risk factors

• Having HPV
• Smoking
• Having a compromised immune system
• Using birth control pills for five or more years
• Being the daughter of a woman who took DES during pregnancy increases the risk of clear cell adenocarcinoma of the cervix
• Giving birth to three or more children

What may lower your risk

• Getting vaccinated against HPV
• Getting a regular Pap test between the ages of 21 and 65
• Proper follow up if Pap test is abnormal
• Not smoking
• Using condoms during sex
• Limiting the number of sexual partners

If you have a low income or are not insured, you may qualify for free or low-cost Pap tests and mammograms through the Maine Breast and Cervical Health Program. The program is also available nationally.

CANCER OF THE VAGINA AND VULVA

Signs and symptoms of vaginal cancer

• Abnormal discharge or bleeding
• Change in bathroom habits
  • Blood in the stool or urine
  • Needing to go more than usual
  • Feeling constipated
• Pain in the pelvis or abdomen, especially when you urinate or have sex

Signs and symptoms of vulvar cancer

• Itching, burning or bleeding of the vulva that doesn’t go away
• Color changes on the skin of the vulva
• Skin changes on the vulva, including what looks like a rash or warts
• Sores, lumps or ulcers on the vulva that don’t go away
• Pelvic pain, especially when you urinate or have sex

Risk factors for vaginal and vulvar cancer

• Have HPV
• Had cervical cancer or precancer
• Have a compromised immune system
• Smoke
• Have chronic itching or burning of the vulva
• Being the daughter of a woman who took DES during pregnancy increases the risk of clear cell adenocarcinoma of the vagina

What may lower your risk

• HPV vaccine recommended for females between ages 9 and 26
• Limiting your number of sexual partners
• Not smoking

What can women do?

If Dr. Soultanakis had only one piece of advice for women it would be to listen to their bodies.

“I’ll have women who’ll come to us,” he said, “and they’re presenting symptom would be ‘I feel like there’s something changed in the way I feel.’ The women who are in tune with their bodies usually are right on. If things are feeling out of the ordinary, it’s important to have a discussion with your primary care physician. It may mean absolutely nothing at all but it might be the early sign of something the primary care physician may be able to pick up.”

So, please, if you are feeling a twinge of intuition about something that’s been going on with you, get it checked out. You know your body better than anyone and you know when something isn’t right. Pay attention.

I have a lovely video of Jan that I recorded a few years ago. It’s only a few seconds long, but it captures her pretty well. I just wish her story had a happier ending.