Endometrial cancer (also called uterine cancer) is the more common of the uterine cancers. In fact, according to the American Cancer Society, it’s the most common female reproductive cancer. It’s also the fourth most common cancer in women in America and is most common between age 60 and 70.
It is also different from uterine sarcoma, which is pretty rare.
Of course, none of this means much to you if you’ve just been diagnosed with endometrial cancer. You’re most likely much more interested in deciding what to do next and how to prepare your family.
To make the best choices for you, you’ll need information. The internet is a great place to find that (which you no doubt know, since you’re here). But sometimes the amount of information can be overwhelming. And you may not be sure what sites to trust.
That’s why we’re here. We’ll get you started with some good resources, organized into categories. So you can wade into your research at your own pace. Once you get a handle on your diagnosis, then you can start diving in deeper and finding more information on your own.
Don’t forget, your doctor can also be a valuable source of information. And once you do a little research, you’ll even feel more confident that you’re asking the right questions. And you’ll understand the answers!
So let’s get started.
Endometrial Cancer Overviews
A great way to get started is with overviews. These guides usually cover the basics of your journey, from symptoms through diagnosis, treatment and sometimes beyond.
Endometrial Cancer (MedlinePlus) : This is a good place to start. It’s a very short overview from the National Institutes of Health that includes pictures and links to more information about some of the tests and treatments you might have. Once you understand these basics, you can move on to some of the more detailed overviews.
Endometrial Cancer (Mayo Clinic): This page offers a thorough yet understandable overview of everything from symptoms and risk factors to test, treatments and possible complications.
What is Endometrial Cancer?: This set of guides from the American Cancer Society comes in an overview version and a detailed version. Depending on how much you already know, you may want to start with the overview and then move onto the detailed version.
Cancer of the Uterus (PDF): This is a short list of FAQ from the American College of Obstetricians and Gynecologists.
Organizations Devoted to Endometrial Cancer
Although we did not find any good organization devoted specifically to endometrial cancer, there are a number devoted to women’s/gynecological cancers as a whole. These include:
Foundation for Women’s Cancer : This foundation offers educational materials to help you understand your disease better and funds research to help improve diagnosis, treatment and outcomes.
Society of Gynecologic Oncology: This is an organization of health care professionals specializing in gynecologic cancers. The website offers information about the different cancers and has a searchable database of oncology professionals. There’s also a survivorship toolkit to help you through your treatment and beyond.
Research/Clinical Trials into Endometrial Cancer
There is a lot of research into endometrial cancer. Participating in a clinical trial can sometimes give you access to new and/or improved treatment options—but remember, that’s not a guarantee of a cure.
If you think you might like to be part of a trial, discuss it with your doctor to see if that’s really the best choice for you.
We list some databases where you can find current trials that are looking for patients that fit certain criteria.
Many of the databases will overlap, but often there are some studies listed only in one of them. Depending on how serious you are about finding a clinical trial, it can be worth searching them all. You will also want to get your doctor’s help to evaluate which studies are right for you.
ClinicalTrials.gov: Link goes to a list of open studies on endometrial cancer. You can modify this list to include only studies near you or find studies only for certain genders, age groups or other criteria.
National Cancer Institute Database: This form looks a little complicated at first, because it asks for a lot of information. But you don’t need to fill in anything except to choose your diagnosis from the drop-down list. If you can fill in other information you can get a shorter list that’s more relevant to you.
CenterWatch Clinical Trials List: A shorter, state-by-state list of trials currently recruiting patients. Again, you can narrow you search by applying certain filters. One of CenterWatch’s stated goals is to provide unbiased information on clinical trials.
Many cancer institutes also run their own clinical trials (sometimes in collaboration with other treatment centers). They often list their own trials on their websites. Here are links to endometrial cancer clinical trial lists for some of the top cancer treatment centers in the country:
- Dana-Farber Cancer Institute
- Memorial Sloan Kettering
- MD Anderson Cancer Center: Pick endometrial or endometrium or uterus in drop-down list (check them all, as they’re different lists)
These trials may also appear in the larger databases (it depends on whether the researchers submitted them), but if you live near or are interested in being treated at any of these centers, their own lists are much shorter and easier to sift through.
Forums and Support Groups about Endometrial Cancer
Connect with others who understand how you’re feeling and what you’re going through. Friends and family are wonderful sources of support, but they don’t always fully understand how you’re feeling. Other cancer survivors do.
EyesOnThePrize.org: This group offers support to women dealing with any kind of gynecologic cancer and their families. It offers an email discussion list (old-school by now, but still useful) and a searchable database of local support groups. You can even read personal stories and submit your own.
HysterSisters: If you need a hysterectomy, this site can offer lots of information and support. It has a whole list of articles covering topics from alternatives to types (yes, there are several types of hysterectomy), pre-operation preparation and post-op recovery. The community section has more than two dozen forums where you can find people going through just what you’re experiencing. It appears to be a very active community, with many forums containing brand new posts from the day we visited.
There are also many support groups more generally for cancer patients with any diagnosis. We list some of those on our Cancer Patient Resources page.
Information for Kids About Endometrial Cancer
If you have kids, you might not be sure how to talk to them about your diagnosis. Our Cancer Information for Kids page has links to resources with advice on having age-appropriate conversations and helping them cope as you go through treatment.
There’s also websites and other resources specifically for kids, where they can learn at their own pace and connect with other kids going through the same thing.
Caregiver Resources
If you’re caring for someone with Endometrial Cancer, you need support and understanding, too. We list a variety of online and local support sources on our Cancer Resources for Caregivers page.
If your loved one needs a hysterectomy due to her diagnosis, you might also be interested in:
MisterHysterSisters: This site, from HysterSisters, is for husbands, other family and friends of women who have had to have a hysterectomy (due to their endometrial cancer or other reasons).