Hearing you have pancreatic cancer can feel like a punch in the gut. It rarely has many symptoms in the early stages, when it’s easiest to treat. If your cancer has been diagnosed early, there’s a chance your surgeon can remove it all (but no guarantee).
But even if your doctor can’t remove it all or your cancer is already at an advanced stage, you have options. These options range from fighting to putting your affairs in order. But only you can decide what option is right for you. This page is here to help you find the resources to better understand your disease and your options so you can make the best decision for you and your family.
Technically there are two kinds of pancreatic cancer, exocrine pancreatic cancer and endocrine pancreatic cancer (also called islet cell cancer). For the most part, resources talking about pancreatic cancer mean exocrine pancreatic cancer. Some may mention islet cell cancer briefly, but it’s very rare and generally covered separately if at all.
On this page you’ll find links to easy-to-understand information about pancreatic cancer. We’ll also point you in the direction of organizations that may be able to help you explore your options, cope with your prognosis, or find other help you may need.
They’re organized into categories so you can find just what you need to help you deal with your stage in your journey.
In addition to the resources on this page, which are specific to pancreatic cancer, we have some more general resources for cancer patients. Most are available to people with any kind of cancer diagnosis.
Pancreatic Cancer Overviews
Overviews are a great place to start understanding your diagnosis. They give you bite-sized chunks of information that won’t overwhelm or confuse you.
Pancreatic Cancer, from MedlinePlus: This very simple overview is perfect if you’re starting completely from scratch. It’s short and to the point. It includes pictures and links to more information.
Pancreatic cancer, from Mayo Clinic: This overview includes questions to ask your doctor about your cancer and your treatment options.
Pancreatic cancer (Beyond the Basics): This overview is from the patient information section of UpToDate, a resource to help doctors make the best decisions for your care. This information is free, but you also have the option of subscribing to the site to find the same information doctors see. Subscriptions are paid, and you can buy either 7 or 30 days of access at a time.
Pancreatic Cancer Overview: This overview guide from the American Cancer Society provides easy-to-understand answers to common questions about pancreatic cancer. There’s also a detailed guide with more information. You can download both guides as PDFs, if you want your own copy.
Organizations Devoted to Pancreatic Cancer
Here are a few organization founded specifically to support research, education and advocacy for pancreatic cancer.
Pancreatic Cancer Action Network: PanCAN began back in 1999 and was the first organization dedicated to advocating for pancreatic cancer patients. It funds research, lobbies Washington for more funds for research and provides patients and their families with information and other resources. Its current goal is to double the pancreatic cancer survival rate by 2020.
Pancreatica: This organization exists to advocate for more awareness of and research into pancreatic cancer. It raises funds and awareness through walks and runs held throughout the year and throughout the country. Its website offers a wealth of information to help you sort through your treatment options. There are even links to abstracts of recent research papers related to pancreatic cancer. The navigation can be a little confusing at first, but the site is well worth exploring.
Lustgarten Foundation: This foundation is dedicated to advancing the understanding and improving the treatment of pancreatic cancer. It funds research, sponsors run/walk events and helps to educate patients, caregivers and the public about this disease.
Research into Pancreatic Cancer
Although pancreatic cancer gets less attention than some of the other major cancers, there are many researchers dedicated to learning more about it and improving survival rates. The NCI posts summaries of noteworthy pancreatic cancer trial results on its website. A recent trial (from 2013) showed promise in extending life and even slowing progression of the disease in some patients.
If you think you might like to be part of a current clinical trial, talk with your doctor about your options. You can also search several online databases to find trials you might qualify for. You will probably still need your doctor’s help to enroll.
ClinicalTrials.gov pancreatic cancer trials: This is one of the biggest databases, with studies back by both government and industry funding. You can modify the list to include only studies close to you, among other filters. A search on pancreatic neoplasms brings up a slightly different list.
CenterWatch pancreatic cancer clinical trials: CenterWatch lists trials by state, making it easy to see if there are any near you. You can also sign up for email notifications to be notified whenever new trials are posted.
NCI Clinical Trials Database: Pick Pancreatic Cancer from the drop-down list and then choose the stage of your cancer to get the most relevant results. You can also get a more targeted list by answering the other questions on the page. Or skip them if you’re not sure.
Pancreatic cancer clinical trials at MSKCC: Memorial Sloan Kettering has a list of its current clinical trials on its website. If you live nearby or are willing to travel, it’s worth a look at what they’re doing.
Pancreatic Tumor Registry: This unique program from Memorial Sloan Kettering Cancer Center is working to find genetic causes of pancreatic cancer by looking at families with a history of disease. Although this research can’t help you if you already have cancer, taking part could help others, including your own family, in the future.
Forums and Support Groups about Pancreatic Cancer
Pancreatic cancer is one of the scariest cancer diagnoses because of its low survival rate. As much as family and friends will want to help, they may have trouble understanding just how you’re feeling.
But other pancreatic cancer patients do understand. Here are some places to find them.
Pancreas Cancer Discussion Page: From Johns Hopkins Medical Institution. This forum is unmoderated, but appears quite active. There were several dozen posts within the past 24 hours when we visited.
PANCREAS-ONC List: This email listserv is from the Association of Cancer Online Resources (ACOR). ACOR hosts dozens of cancer-related lists, some for specific cancers and others for more general issues you may be having related to your cancer, like the CANCER-DEPRESSION or CANCER-FINANCE lists.
If you’re looking for local, in-person groups, try doing a search for “pancreatic cancer support group” (without the quotes) and add your location.
You can also find support groups for cancer patients in general here.
Other Resources for Pancreatic Cancer
Resources we’ve found that don’t quite fit anywhere else.
Johns Hopkins Pancreatic Cancer Blog: Opinions and current information on pancreatic cancer from the folks at Johns Hopkins.
Information for Kids About Pancreatic Cancer
If you’re worried about how to tell your kids about your diagnosis, you’re not alone. There’s quite a bit of information on talking with kids in an age-appropriate way to help them cope with a parent’s cancer.
We list some good ones one our Cancer Resources for Kids page.
This page also includes resources specifically for kids to use. There’s websites with games and activities, support groups just for kids and even camps for kids whose parents have cancer. Take a look and see which ones might be right for your child(ren).
Caregiver Resources
Taking care of someone with pancreatic cancer can be exhausting. Yes, it’s true, and there’s no reason to feel embarrassed or guilty about that. You’re human, and you need support as much as your loved one.
People in these groups understand.
CancerCare Pancreatic Cancer Caregiver Support Group: This is an online support group led by an oncology social worker. It allows you to connect with other caregivers of people with pancreatic cancer. You have to register and each “session” runs 15 weeks. You can join even after the session has started.
Caregivers on CancerConnect.com: This page offers some advice on your role as a caregiver and taking care of yourself. There’s also a link to join the site’s online community of caregivers. Seeing the forum requires registration, so we were not able to verify how active this community might be, but CancerConnect.com seems to have a good reputation.
To find more resources for caregivers of people with cancer (but not necessarily pancreatic cancer), visit our Cancer Caregivers Resources page.