If your doctor has told you that your PAP test was abnormal, make sure you understand whether the lab found cancer or just abnormal cells (cervical dysplasia). This is very important, because treatment is different for each. Dysplasia is not cancer, although sometimes the cells can keep changing and turn into cancer. Your doctor may want to to get your PAP more often, but you may not need any other treatment unless something changes.
If it is cancer, it’s still likely you caught it early if you’ve been getting regular PAPs (a great reason to do just that). It’s usually very treatable, although that does depend on how big the tumor is and whether it has spread. These things can also affect your treatment options.
You should, of course, discuss your concerns and options with your doctor. But sometimes you’re not sure what to ask. You may not completely understand what your doctor has said. Or you mind might just go blank when you hear the word cancer. That’s ok.
Take a little time to read about your diagnosis and understand it without the pressure of being in your doctor’s office. Once you understand the basics, you’ll be able to ask about your specific case and feel more confident you understand the answers.
We’ve included not only overviews, but sites where you can find support and other resources to help you cope during your journey.
Cervical Cancer Overviews
Start with a general idea of symptoms, treatments and prognosis. Once you understand the basics, you’ll have a better idea of what to do next.
Cervical Cancer Overview Guide: The American Cancer Society offers a brief guide to understanding this cancer, how it’s detected, treatment options and what to expect after treatment. There’s also a detailed guide, if you want more information. Both guides can be downloaded as PDFs.
The Mayo Clinic’s Cervical Cancer article: Helps you understand the two main kinds of cervical cancer, things that increase your risk of getting it and how to talk to your doctor.
What You Need To Know About™ Cervical Cancer: This booklet from the National Cancer Institute also covers the basics of diagnosis and treatment. You’ll also find section on getting a second opinion and being part of a clinical trial. You can also download the booklet as a PDF, a Kindle book (.mobi) or an Epub file for other ereaders.
Organizations Devoted to Cervical Cancer
National Cervical Cancer Coalition (NCCC): The Coalition advocates for cervical health by promoting prevention and early detection. It also supports women with cervical cancer through local chapters as well as online and phone communities.
Society of Gynecologic Oncology: This society of oncologists and other medical professionals works to promote high-quality care, with a vision of wiping out all gynecologic cancers. The website has a Survivorship Toolkit with downloadable forms to help you organize your care plan, keep your important information at hand and track your follow-up appointments.
Cervical Cancer-Free Coalition: This organization is working toward the goal of preventing cervical cancer by increasing HPV vaccination rates, increasing screening and making sure women get the treatment they need for abnormal PAP tests. As of this writing, six partner states have started programs to to meet these goals. The coalition hopes to eventually scale up across the nation and to other countries.
Finding Clinical Trials for Cervical Cancer
Although clinical trials are not for everyone, if you think you might like to participate in one, it’s a good idea to check out your options early. Many have very specific requirements, and getting certain treatments could disqualify you. Of course, you’ll want to discuss this with your doctor who can help you make a final decision and possibly help you enroll. But doing a little research on your own can help you feel more in control of your options.
ClinicalTrials.gov database: This link goes directly to search results for cervical cancer. It lists trials that are recruiting as well as those that have signed up all needed participants and finished trials. You can refine the results to show only trials recruiting or in a specific location, among other things.
Some of the completed studies may have basic results (without explanation) posted if you’re interested in seeing those, although they can be hard to understand.
Memorial Sloan-Kettering Cancer Center trials: A list of trials MSKCC is currently enrolling patients for. These trials may also be in the ClinicalTrials.gov results, but this shorter list may feel less overwhelming. And if you’re in New York, it may be an easier place to start.
National Cancer Institute trials database: You can do a simple search for cervical cancer (you’ll get a few hundred results). Or narrow the results by location, type of trial, drug, lead organization and more. NCI also offers help in your search with a phone helpline or LiveHelp online chat (find the link near the top on the left)
If you’re interested in reading about the results of recent cervical cancer clinical trials, the NCI offers a few summaries of treatment and vaccine trials.
Forums and Support Groups for Cervical Cancer
As important as support from family and friends can be, sometimes you just want to connect with someone who’s been there. Online communities and in-person support groups can help you find people who really understand what you’re going through.
NCCC Phone and Email Pals: Get matched with other cervical cancer survivors to support each other.
NCCC Online Support Communities: An active community with discussions on just about every aspect of cervical cancer and living with it. Discussion topics include a general discussion of HPV, sexuality after cancer, cancer stages and more. Share your successes, setbacks, worries, and whatever’s on your mind.
You can also find more general support resources for people with any kind of cancer here.
Other Resources for Cervical Cancer
You might also find some of these resources useful
National Breast and Cervical Cancer Early Detection Program: This is a program from the Centers For Disease Control and Prevention that helps low-income women get screenings for cervical and breast cancer. Each state runs its own program, and depending on where you live, you may also qualify for free or low-cost treatment.
Oncologist Database: The American Society of Clinical Oncology offers a searchable database of cancer specialists if you need to find a doctor. The database does not list cervical cancer specifically, so choose “Gyn Cancer” (gynecologic cancer) for the Oncology Specialty question.
Cancer Financial Assistance Coalition: Need help paying medical or living expenses, transportation or other bills related to your cancer diagnosis? This page lists some organizations that may be able to help. To see if there are any other sources of assistance, you can enter your zip code to find regional organizations.
What’s Your Risk of Cervical Cancer?: If you haven’t been diagnosed with it, but you want to know how likely it is you may get it, this site can give you an idea. Just keep in mind that low risk is not a guarantee you’ll never get it. And high risk doesn’t mean you definitely will.
HPV and the HPV Vaccine: This article on Cancer.Net (from the American Society of Clinical Oncology) explains what the virus is and how the vaccine can help prevent cervical cancer. Especially useful if your own diagnosis has you worrying about your daughter’s risk.
Immunotherapy: Learn about the different kinds of immunotherapy treatments so you can discuss them with your doctor to see if they might be right for you.
Information for Kids About Cervical Cancer
It’s not easy to tell your kids you have cancer, but often they know something’s wrong. The truth, offered in an age-appropriate way, may be less scary than whatever their imaginations have dreamed up. And it can help them feel important and useful to help with the caregiving.
Kids and Cervical Cancer Care: This article on EverydayHealth.com, may help you figure out the best way to tell your kids about your diagnosis and what they can expect.
For more information about talking to kids about cancer in general, click here.
Resources for Caregivers of Cervical Cancer Patients
Caregivers of cervical cancer patients need support too. It might feel selfish, but you’re allowed to feel sad, overwhelmed and in need of someone to talk to about it all.
The Foundation for Women’s Cancer offers some tips for caregivers to help you cope.
Thoughts From a Caregiver is one caregiver’s story about what she learned as a caregiver for a friend with cervical cancer.
Although we did not find much specific to cervical cancer, the caregiver experience is similar across all diagnoses. We have a page of resources for caregivers of patients with any cancer diagnosis here.
We hope you’ve found this page useful as you travel along your journey with cervical cancer. If there are other resources you’d like to see, please feel free to ask about them in the comments section. We will try to find out if they exist. Or, if you’ve found an especially useful resource we’ve missed, please share so we can add it.