According to the World Health Organization, cervical cancer is globally the second most common type of cancer among women and virtually all cases are linked to genital infection with the human papillomavirus (HPV). There were more than 500 000 new cases of cervical cancer and 250 000 deaths from it worldwide in 2005. Cervical cancer can also be prevented through regular screening coupled with treatment. The most common cancer in women is breast cancer, followed by cervical cancer.

Congress passed the Breast and Cervical Cancer Mortality Prevention Act in 1990, directing the Centers for Disease Control and Prevention (CDC) to establish the National Breast and Cervical Cancer Early Detection Program cervical cancer(NBCCEDP), a program to assist low-income, uninsured, and underinsured women in accessing breast and cervical cancer screening and diagnostic services that are free or low-cost.  Since its inception in 1991, NBCCEDP-funded programs have served more than 4.6 million women, provided more than 11.6 million breast and cervical cancer screening examinations, and diagnosed more than 64,718 breast cancers, 3,756 invasive cervical cancers, and 167,169 premalignant cervical lesions.

Tigerlily Foundation is committed to providing life-saving information to the young women we served.  We have partnered with Cervivor to provide information on how remain educated, empowered and your best advocate when it comes to your health.

Cervical cancer is caused by a virus called HPV. 

The full name of the virus is human papillomavirus. (“Papilloma” is pronounced “pap-ah-LO-mah.”) But from now on we’ll simply call it HPV.

cervix_diagram

There are over a hundred types of viruses called HPV – it’s a very common virus.

Most HPV types can cause warts – usually in the genital area, sometimes in the mouth or throat. Though wart-causing HPV types aren’t exactly welcome guests, they do not lead to cancer.

However, some HPV types on your cervix can lead to cervical cancer. These types of HPV are called high-risk HPV. Going forward, when we use the term HPV, unless we say otherwise we’re talking about high-risk HPV. Two HPV types in particular are the worst. These two – HPV types 16 and 18 – are responsible for about 70% of all cervical cancers.

High-risk HPV itself is not cancer. And, having high-risk HPV doesn’t mean you’ll get cancer.

In fact, as women, 8 out of 10 of us carry high-risk HPV at some time in our lives. Nothing bad happens – it just quietly goes away. To say this another way: While most women have HPV at some point in their lives, few women will get cervical cancer.

But sometimes high-risk HPV sticks around. For years. The medical term is persistent HPV infection.

And persistent high-risk HPV infection can lead to trouble. The virus can start causing changes in healthy cells. The cells become abnormal cells that can eventually lead to cancer. It takes about 10-15 years for cervical cells to change to abnormal cells and then into cervical cancer.

And persistent high-risk HPV infection can lead to trouble.

The virus can start causing changes in healthy cells. The cells become abnormal cells that can eventually lead to cancer. It takes about 10-15 years for cervical cells to change to abnormal cells and then into cervical cancer.


Frequently Asked Questions About HPV

 

How does someone get HPV?

Most people get HPV through vaginal or anal intercourse.

HPV can also be transmitted by skin-to-skin contact in the genital area (the area around the vagina and penis).

How can I avoid getting HPV?

  • The best way to avoid HPV is not to have sex or sexual contact.
  • If you choose to have sex, have your partner use condoms. Condoms can help protect against HPV. But since you can get HPV from skin-to-skin contact in the genital area, even people who use condoms can get HPV.
  • Agree with your partner to only have sex or sexual contact with each other. But remember, even if you both swear total fidelity, you still have to be tested, like everyone else.
  • If you are 26 or younger, you can get an HPV vaccine. It’s approved for girls and boys ages 9 through 26, but is recommended specifically for ages 11 and 12. The vaccine helps protect against the 9 types of HPV that cause cancers like cervical and other HPV-related cancers and diseases.

Does anything make HPV more dangerous to me?

Yes. If any of these factors are in your life, you and your healthcare provider must pay special attention.

  • Smoking. Yet another reason to stop now! See quitsmoking.about.com
  • A compromised immune system. Many diseases can compromise the immune system – making it difficult to fight off infection such as HPV. These diseases include lupus and HIV/AIDS. When you are tested, make sure your medical provider knows if you have a compromised immune system.
  • An infection with chlamydia or herpes simplex virus type 2.
  • Multiple pregnancies. The more babies a woman has given birth to, the greater her risk of cervical cancer. Researchers suggest that this could be a result of hormonal changes during pregnancy or changes in the immune system during pregnancy.
  • A first-degree relative (mother or sister) with a history of cervical cancer. Research reports that this increases personal risk three-fold.
  • Low levels of folic acid (a type of Vitamin B). Ask your health care provider if you need to be tested for this, and how you can increase your intake of this vitamin.
  • Possibly, the use of oral contraceptives for over 10 years. The jury is still out.
  • Exposure while in the womb to a medication called DES, which was prescribed to many women to prevent miscarriage between 1938 and 1971. The daughters of women given low-dose DES are at risk.

What are the symptoms of HPV infection?

The high-risk HPV types that can cause cervical cancer don’t cause any symptoms. No warts. No blisters. Nothing. The only sure way to know if you have HPV is to get tested!

Abnormal cells are not cancer. But they can lead to cancer.

You may have heard the terms “dysplasia,” “LSIL,” “HSIL,” “CIN I, CIN II or CIN III,” or “Carcinoma in situ.” You also may have heard the word “pre-cancer.” But try not to be overwhelmed. All of these terms refer to some sort of abnormal cells in your cervix.

Diagnosing Abnormal Cells

  • Your healthcare provider performs a colposcopy to look for cell abnormalities. Colposcopy views the cervix with a lighted magnifying instrument to see the abnormal cells more closely.
  • If your provider sees abnormal cells, he/she will perform a biopsy to determine if you need treatment for your abnormal cells. Biopsy removes a tissue sample for analysis in the laboratory. The biopsy helps determine if the cell changes are minor or more severe and what further treatment, if any, may be necessary.

Abnormal cells can be called squamous intraepithelial lesions (SIL) or cervical intraepithelial neoplasia (CIN).

  • Low-grade SIL (LSIL) or CIN I, meaning mild cell changes.
  • High-grade SIL (HSIL), CIN II or CIN III, meaning moderate to severe cell changes.

Many cases of CIN I go away by themselves. Your healthcare provider will often treat CIN II or CIN III.

CIN III can also be referred to as carcinoma in situ or stage 0 pre-invasive cancer. If left untreated, these abnormal cells may spread further into the cervix.

abnormal_cells
This picture of a cervix shows the timeline. Moving counterclockwise from Normal, the quarters show low-grade CIN (about one-third of the cells are abnormal), high-grade CIN (almost all cells are abnormal), and full-blown cancer.

Treating Abnormal Cells

  • LEEP (loop electrosurgical excision procedure): A fine wire loop carrying a (safe!) electrical current removes abnormal tissue.
  • Laser or “cold-knife” conization (cone biopsy): A laser or scalpel (“cold-knife”) removes a cone or cylinder-shaped piece of the cervix.
  • Laser therapy: A tiny beam of high-intensity light vaporizes abnormal cells.
  • Cryotherapy: A very cold probe freezes – and destroys – abnormal cells.

You and your healthcare provider will discuss which procedure is best for you.

What is cervical cancer?

Cervical cancer is cancer of the cervix, which is the opening from the vagina to the uterus. Cervical cancer is caused by high-risk HPV (the human papillomavirus). For more information on high-risk HPV, go to the section called HPV.

Is cervical cancer preventable?

Cervical cancer is preventable! You just have to know what to do.

  • An HPV vaccine is available for girls, boys, young women and young men 26 years of age and younger. 

The section called Prevention explains in detail what the vaccine is and why, even if you are vaccinated, you still need to be tested.

  • Two tests provide an early warning system. 

A Pap test looks for abnormal cells. If needed, these can be treated before they become cancerous.

An HPV test looks for high-risk HPV that can cause abnormal cells. This lets your healthcare provider monitor you more closely for cell changes.

Find out more in the Prevention section.

  • Safe, widely available treatments can remove abnormal cells. 

The Understanding Abnormal Cells section describes the procedures your healthcare provider uses to get rid of abnormal cells before they turn into cancer.

What are the symptoms of abnormal cell changes or cervical cancer?

Just like HPV, abnormal cell changes don’t cause symptoms. In fact, the early stages of cervical cancer often don’t cause symptoms either. The path to cervical cancer – HPV infection, abnormal cells and early cancer – is a silent one. Over a period of years your cervix may be developing a problem without you suspecting a thing. That’s why it’s so important to get tested regularly.

If there are any cervical cancer symptoms, they may include:

  • Pain during sex
  • Unusual vaginal discharge or bleeding – especially after sex
  • Lower back pain
  • Painful urination

If you have any of those symptoms, contact your healthcare provider.

Does a diagnosis of cervical cancer mean I’m going to die?

No! Check out our Cervivor Stories to read about all of these great women who have survived cervical cancer. There are many effective treatment options available. There’s also lots of support available, like us! We are here to help you regain control of your life.

Four cervical cancer stages

Cervical cancer is divided into four main stages. The stages help determine the best treatment.

Stage I: The cancer is only in the cervix or uterus.

Stage II: The cancer has spread past the cervix and the uterus.

Stage III: The cervical cancer has spread further – possibly into the lower vagina and the pelvic wall. It may be blocking tubes that carry urine from the kidneys to the bladder.

Stage IV: The cervical cancer has spread beyond the pelvis. It is metastatic, meaning it has spread to other parts of the body such as the bladder, rectum, bone, liver, or brain.

Stages are divided further into sub-stages with letters and numbers. For example, the sub-stages of Stage I cancer are IA1, IA2, IB1, and IB2.

There are also different types of cervical cancers. The two main types are squamous cell carcinoma, which is common, and adenocarcinoma. A small percentage of cancers are adenosquamous carcinomas and an even smaller percentage are small cell and large cell neuroendocrine carcinomas.

Treating cancer

Before deciding on the best treatment, you and your healthcare provider will need to discuss:

  • The stage of the cancer.
  • The size of the tumor.
  • Your age.
  • If you’re pregnant. For cervical cancer found in its early stages, or for cancer diagnosed during the last trimester of pregnancy, treatment may be delayed until after the baby is born.
  • If you want to have children in the future.

Cervical cancer can be treated with surgery, radiation, or chemotherapy – or perhaps a combination of all three.

Surgery may be removal of the tumor, a hysterectomy, a radical hysterectomy, or a radical vaginal trachelectomy (RVT).

They type of surgery will depend on the stage of the cancer and if you want to become pregnant in the future.

  • A hysterectomy involves removal of the uterus and cervix.
  • A radical hysterectomy includes removal of the uterus and cervix, as well as the tissues next to the uterus, the upper part of the vagina, and sometimes the ovaries and fallopian tubes. Some pelvic lymph nodes may be removed as well.
  • A radical vaginal trachelectomy (RVT) may be an option if you want to become pregnant in the future and your cancer is in an early stage. The surgeon removes the cervix, part of the vagina, and the pelvic lymph nodes while leaving the uterus in place.

Chemotherapy with radiation is generally used to treat stage II, stage III, and stage IV cervical cancer.

After chemotherapy and radiation are complete, your healthcare provider may also suggest a hysterectomy.

  • Chemotherapy uses anti-cancer drugs that are either injected into a vein or taken by mouth.
  • Radiation therapy uses high energy x-rays to kill cancer cells. These x-rays may be given externally or internally. External radiation is like having a diagnostic x-ray; internal radiation is given through a cylinder placed in the vagina.

What’s the best treatment?

We’re not qualified to answer that. But we can urge you to bring plenty of questions to your healthcare provider.

Here’s a start:

  • How will you decide which procedure to use?
  • What will the treatment cost?
  • What are the side effects?
  • How will this affect my sex life?
  • How will this affect my fertility?
  • Will I lose time off work?
  • Do I have to stay overnight in the hospital?
  • Does this cure me?
  • How will I know if I’m cured?

If you are thinking about pregnancy in the future, you’ll also want to ask your healthcare provider questions such as these:

  • Am I a candidate for RVT (radical vaginal trachelectomy)?
  • Will I be able to keep my uterus?
  • Will I be able to keep my ovaries?
  • Can I harvest eggs before or after treatment?
  • I don’t have a partner. Can I freeze unfertilized eggs?
  • If I keep my ovaries and have radiation, will I be able to harvest eggs afterwards?
  • Can my ovaries be moved up higher for protection from radiation?
  • Can you recommend a reproductive endocrinologist?

If you feel you’re not getting the attention you deserve or answers to your questions, remember, you can choose someone else to provide your care. You’re in charge of your health – and you deserve someone to help you make choices.

What are the outcomes for cervical cancer treatment?

2_cervivorsMany factors affect a person’s outcome, including what stage you are diagnosed with, what your overall health is and how well your cancer responds to treatment. We also keep learning how important a person’s state of mind is to a cancer diagnosis.

Just to give you an idea of survival statistics, women who are diagnosed with stage IA cervical cancer have a five-year survival rate of 95%. Five-year survival rates look at people who were treated at least 5 years ago and refer to the percentage of women who lived at least 5 years after their cancer was diagnosed. Women diagnosed in later stages will see a lower 5-year survival rate – but remember, many women live a long, full life after a cancer diagnosis.

 

 

Try to stay positive and remember that we’re here to work with you, fighting to make every day after diagnosis better and easier.

An interesting fact about cervical cancer treatment: Only 3 new cervical cancer treatments have been approved over the last 20 years. Surprising, isn’t it?

The treatments that we have happen to work well for many patients. But there are patients who have a high risk of recurrence, regardless of their stage. Recurrence depends more on lymph node involvement than stage of cancer. So women with stage 1 may be harder to treat than women in stage 4 because of their lymph nodes. And we don’t have medications that work well in women once they’ve had a recurrence. So there is work to do!

All this being said, in order to develop new treatments, we need to have clinical trials. The truth is, clinical research is the only way we ever can get any medications for any of our health conditions.

  • We need clinical trials to drive progress.
  • We need trials to determine the safety and effectiveness of every type of treatment.
  • And in order to determine that safety and effectiveness, we need volunteers.

According to the American Cancer Society, “The biggest barrier to completing clinical trials is that not enough people take part in them. Fewer than 5% of adults (less than 1 in 20) with cancer will take part in a clinical trial.” 

You may be asking, “doesn’t that just make me a guinea pig for some pharmaceutical company?” The answer is no! It makes you an important part of medical research, a person who is helping to further the science and develop new treatments.

“I decided that if this clinical trial was good enough for Jimmy Carter, it was good enough for me!” Teolita Rickenbacker

 

But what’s the benefit to the patient? There are a few:

  • Access to innovative treatments: Clinical trials can give you access to innovative treatments that aren’t available to other patients. Only treatments that have been through clinical trials and are approved by the Food and Drug Administration (FDA) are available to patients.
  • Dedicated care: When you are in a clinical trial, your clinicians are committed to providing high quality care and monitoring. They are also committed to finding new and advanced cancer treatments.
  • Hope for success: Some patients run out of treatment options and clinical trials offer them hope. New and innovative therapies can be successful when other treatments stop working.
  • Possible coverage of medical expenses: Some study sponsors may provide payment for your medical care and any expenses (such as travel or accommodations during your treatment).

“I think being on a trial saved my life. I wasn’t nervous about being on the trial. I was hopeful I would be accepted. At the time, the trial increased my odds by 16%. I had to travel from FL to Houston for treatment to participate but it was worth it to me. When I hear about trials and the research that is being done, I am grateful for the scientists committed to finding treatments that will save lives.”
Linda Ryan

 

Clinical Trials 101

There are four phases of clinical trials. These all occur after research has already been completed in the lab and the drug is ready to be given to a human being.

Phase I: Phase I trials find the highest dose of the treatment that can be used without causing serious side effects. Phase I studies often involve a small number of patients and are trying to determine the safety of the drug. Patients may have different kinds of cancer in Phase I.

Phase II: After a drug is shown to be safe in Phase I, it is tested in Phase II to figure out the optimal dose and provide data to show whether the drug works. Patients usually have the same type of cancer but it may be at different stages.

Phase III: After making it through Phases I and II, a drug can move onto Phase III if the earlier results are good. Phase III trials are large studies with hundreds or thousands of patients in multiple study centers around the U.S. and often around the world. Patients often have a specific type and stage of cancer. Phase III trials are used to produce evidence to support FDA approval of the drug. Note: Sometimes you hear about global randomized studies. This means that there are sites around the world and that patients are randomly assigned to either the treatment being studied or the standard of care treatment.

Phase IV: Phase IV trials are called post-marketing trials as they occur after a drug is approved. They follow patients for many years to determine long-term side effects.

How will I be protected in a clinical trial?

Anyone who enrolls in a clinical trial will have to provide informed consent. What this means is that the doctor explains the trial, the procedure, the costs (if any) and the potential benefits and risks. You will have to read through and complete a lot of paperwork and sign a lot of forms. During the informed consent process, you want to be prepared with any questions. This is the time to ask the doctor what the logistics of the trial are, what will happen during the trial, and what you need to be prepared for during the trial. This is the time where you decide whether the trial is right for you.

Should you participate in a clinical trial?

There are many factors you should discuss with your clinician, review with your family, and think through for yourself.

1 – Understand the risks.

2 – Know what the benefits are.

3 – Find out if there are costs involved or if everything will be covered.

4 – See if the logistics will work for you and your family (including appointment schedule, transportation and lodging requirements if necessary, etc.)

5 – Think about your goals and expectations for the trial. Are they realistic? What do you hope to get out of the trial?

“My next treatment will probably be through a clinical trial. Scientists know that with recurrent cervical cancer, traditional treatments stop working sooner or later. And doing too many chemotherapy treatments could diminish the chances of being accepted in some clinical trials, so I need to choose each treatment strategically.”
Marilou Gougeon

Important Facts About Clinical Trials:

  1. Participation in a clinical trial is voluntary.
  2. There are very specific eligibility criteria for each trial. You may or may not be able to participate depending on your circumstances.
  3. You must give your written, informed consent before you take part in a trial.
  4. You have the right to leave the study at any time for any reason.

To find clinical trials, visit:

www.clinicaltrials.gov
www.emergingmed.com

The best way to prevent most cervical cancers is to avoid getting HPV.

And the best way to avoid getting HPV is not to have sex or sexual contact. But we know this is not possible for most people! And this is why we have various tools to help us prevent both HPV and cervical cancer.

Condoms

If you choose to have sex, have your male partner use condoms. Condoms can help protect against HPV. But since you can get HPV from skin-to-skin contact in the genital area, even people who use condoms can get HPV.

HPV Vaccines

There are three HPV vaccines – Cervarix, Gardasil and Gardasil 9) – that can protect against HPV infections.

  • Cervarix protects against HPV 16 and HPV 18 – the two types of HPV that cause approximately 70% of all cervical cancers.
  • Gardasil also protects against HPV 16 and 18, as well as HPV 6 and 11, which are the two types of HPV responsible for 90% of genital warts.
  • Gardasil 9 protects against HPV types 6, 11, 16, 18, 31, 33, 45, 52, and 48, protecting against the types of HPV that cause 90% of genital warts and 90% of HPV-related cancers.

Girls and young women should get any of these three vaccines to prevent cervical cancer; if they get Gardasil or Gardasil 9, they will also be protected against genital warts, vulvar cancer, vaginal cancer and anal cancer.

Boys and young men should get Gardasil or Gardasil 9 to protect against genital warts and anal cancer.

Just remember, even if vaccinated, women still need to get screened for cervical cancer!

Screening Tests

There are currently two types of tests that provide an early warning system for cervical cancer: a Pap test and an HPV test.

Pap test

First, a healthcare provider takes samples of cells from your cervix during your pelvic exam. (Collecting cells from your cervix only takes a few seconds and, though not comfortable, generally isn’t painful at all.)

Next, the cells are sent to a lab where your cervical cells are looked at under a microscope or through an automated magnifying machine to see if there are any abnormal cells. Possible Pap test results are:

  • Normal Pap result: The lab didn’t find any abnormal cells.
  • Unclear or inconclusive Pap result: The cells don’t look clearly abnormal, but they don’t look clearly normal either.
  • Abnormal Pap result: The lab found cell changes. The results are ranked by number of abnormal cells found.
    • CIN 1: mild – about 60% of CIN 1 cases go away on their own
    • CIN 2: moderate
    • CIN 3: severe

Most healthcare providers combine the moderate and severe categories: CIN 2/3.

If you have results that are CIN 2, CIN 3, or CIN 2/3, usually your healthcare provider will directly treat these abnormal cells.

Although the Pap test has helped decrease the number of American women with cervical cancer by about 75% in the past 50 years, newer tests are now needed.

HPV Test

First, a healthcare provider takes samples of cells from your cervix during your pelvic exam. The sample that was taken for the Pap test can be used for the HPV test. An HPV test looks for high-risk HPV that can cause abnormal cells. Some HPV tests can tell you if you have the two types of HPV 16 and HPV 18 – that put you at highest risk for cervical cancer.

If the test finds HPV, you might not have any abnormal cells now. But the HPV could stick around and create abnormal cells in the future. Knowing you have HPV lets your healthcare provider monitor you more closely for cell changes.

Possible results are:

  • Negative HPV result: You do not have HPV. You are at extremely low risk of developing cervical cancer within the next few years.
  • Positive HPV result: You have an HPV type that can potentially lead to cervical cancer. But don’t panic. This does not necessarily mean you have cervical cancer. It means you and your healthcare provider will be keeping a close eye on your cervix.

If you’ve ever had sex with anyone, you need to be tested. Some women think they don’t need to be screened. But they do! This includes women who have been in long-term relationships, lesbians, women who haven’t had sex in many years, and women who’ve only had sex once or with only one partner.

When to get vaccinated and/or screened

  1. Get the three dose series of HPV vaccine at ages 11 or 12. Young women who did not get the vaccine can get it through age 26; young men can get vaccinated through age 21. Men who have sex with men and immunocompromised men can get vaccinated through age 26.
  2. Begin getting Pap tests at age 21. Continue getting Pap tests every 3 years through age 29.
  3. When you reach age 30, the preferred method of testing is an HPV test along with your Pap test. Get both tests together every 5 years. Screening with the Pap test alone is also an acceptable option.
  4. Based on new guidance from professional medical organizations, your healthcare provider now has the option to screen you with an HPV test first starting at age 25, followed by additional tests if needed.

Why do the guidelines seem to constantly change? Although it may be frustrating, this is good news! Medical researchers are learning new information practically everyday about HPV and its link to cervical cancer. So the experts are continually reviewing new evidence to ensure that the guidelines give healthcare professionals the best and most up-to-date options available.

Note: If your Pap or HPV test ever has unusual results, or if you have had a history of abnormal cells or cervical cancer, your testing schedule may vary.

Here are some statistics to help you put cervical cancer into perspective:

  • Each year, more than 500,000 women worldwide develop cervical cancer and about 275,000 women die from the disease. The majority of these deaths occur in developing countries.
  • The American Cancer Society estimates that about 12,900 new cases of invasive cervical cancer will be diagnosed in the United States in 2015.
  • About 4,100 women are estimated to die from cervical cancer in 2015.
  • In the United States, Hispanic women are most likely to get cervical cancer, followed by African-Americans.
  • In 2011, African-American women were more likely to die of cervical cancer than any other group, followed by Hispanic, white, Asian/Pacific Islander, and then American Indian/Alaska Native women.
  • Most cases of cervical cancer are found in women younger than 50. It rarely develops in women younger than 20.
  • More than 15% of cases of cervical cancer are found in women over 65.

Sources:
American Cancer Society. Accessed online July 2015
Centers for Disease Control. Accessed online July 2015

Brought to you by the generosity of Cervivor