Have you recently been diagnosed with prostate cancer? Or maybe you’re doing research for someone else who’s been diagnosed? Either way, you’re probably scared and worried. And maybe a little overwhelmed and unsure where to start.
Well, you’ve come to the right place, because that’s what this page is: A place to start. We offer a few quality resources in various categories to help you get started finding the information and support you need.
It’s not an exhaustive list, and there are other good resources, too (some of the ones we list may even have links to some of those others). But we don’t want to overwhelm you. With these resources you can learn a lot and, if you have questions they don’t answer, feel confident that you can find the answers you need.
When you’re ready to do more research on your own, check out our search tips page for some tips on recognizing good sources.
And, of course, talk with your doctor(s) about what you find. By working as a team, you can feel more confident in the choices you make.
Prostate Cancer Overviews
We like to start any research with overview guides. They help give a basic understanding of the disease so you can start to understand it enough to form your own questions as you dig deeper. These overviews offer a lot of information but are still easy to understand.
Prostate cancer: This page, from MedlinePlus, is very basic, but includes pictures.
What is Prostate Cancer?: This introduction to prostate cancer explains the disease, talks about how to plan your treatment and treatment options. There’s also a Frequently Asked Questions page with answers to … well, frequently asked questions.
Prostate cancer guide from Mayo Clinic: This overview explains the disease and offers ideas for questions to ask your doctor and brief explanations of common treatment options.
What You Need to Know About™ Prostate Cancer: This guide from the National Cancer Institute includes sections on nutrition, follow-up care and finding support, along with a description of the cancer and possible treatment choices. You can read it online or download it as a PDF or ebook.
Organizations Devoted to Prostate Cancer
There are a number of organizations working to increase awareness and funding for prostate cancer. They also offer a variety of support services for patients and their friends and family. These are some that seem very active.
Prostate Cancer Foundation: For more than 20 years, PCF has been funding promising research around the world. The website offers information about the disease, how to live with it and finding the support you need as you fight it.
Us TOO International Prostate Cancer Education & Support Network: This network of support groups offers information about prostate cancer, treatments, relapse, advanced disease and more. It also publishes a monthly newlsetter and has an archive of audio and video webinars and other publications. You can also search for local or online support groups on the site (we link to those in the Support section).
Prostate Cancer Canada: This Canadian foundation is dedicated to eliminating prostate cancer. It funds research and offers services to patients and their loved ones. Anyone can access the prostate cancer information on the site along with current and archived newsletters. If you’re in Canada, you can see if there’s a local support group near you, or call or email to find other support, including the peer-to-peer support program in which they match you with someone who has had a similar experience to you.
Prostate Cancer UK: This organization began in 1996 as The Prostate Cancer Charity. It funds research, campaigns to increase awareness and provides information and support to men with prostate cancer. It is, obviously, UK-based, but anyone can access the prostate cancer information on the site. In addition to written articles, many pages include video. You can also listen to the audio version of the organization’s Prostate Cancer Guide. There’s also an online message board where you can connect with other people dealing with prostate cancer.
Prostate Cancer Research and Clinical Trials
For a long time, prostate cancer got the short end of the stick in a lot of ways, both in terms of awareness and research. This has been changing and today researchers are actively trying to understand the disease and how best to prevent and treat it.
Depending on your situation, you might be interested in being part of the research by joining a clinical trial. For example, there might be a study showing promise for cancers at the same stage as yours. The trial could be the only way to get that drug (but you do still need to meet any other qualifications).
ClinicalTrials.gov is a searchable database of clinical trials submitted to it by the lead researchers or sponsors of the trial (trials may be funded privately or by the government). Here are results for two possible searches:
There is most likely a lot of overlap in these results, but some of the studies also look like they only show up in one list (at least when we looked at them). The lists are pretty long, so you can narrow them down by location, type of drug and more. Just click on “Modify this search” above the Search Details tab.
CenterWatch Clinical Trials List: These trials are all industry-sponsored. It is quite a long list, but you can narrow it down by location, age, gender and trial phase to make it more relevant to you. You can also sign up to get email alerts when new trials are posted (the link is at the right of the page).
Forums and Support Groups about Prostate Cancer
You and your family don’t have to face this journey alone. Others have been there or are going through it now. Connecting and sharing with them can help you feel less alone and give you hope.
Prostate Cancer Foundation Community: This community, on My Bridge 4 Life, offers a support area as well as a plan to stay sane and organized. You can use it in whatever way will help you most. Set up a blog to keep family, friends and other members of the community informed. Use the secure section where you can upload all of your medical information and medical provider contact information. Whatever will help you most.
You Are Not Alone: This Australia-based site, although ugly and sometimes hard to navigate, contains a lot of information, links and stories from other survivors. It was started by a group of prostate cancer survivors back in 1998 (which explains the look of the site).
The forum is equally ugly and basic, but it does seem fairly active with men who care about each other and try to help. Don’t be fooled by the first few pinned threads, which have no new activity for a few years. Scroll down a little and you’ll see plenty of recent conversations. No registration is required and search engines CAN find these pages, so don’t use your real, full name if you’re concerned about privacy.
Us TOO support resources: This network offers many different options for finding support. You can:
- Join the online community at Inspire.com: Discussion topics range from treatment options to exercise, clinical trials and how your diagnosis may affect intimacy. There’s also a section for wives, friends and other caregivers.
- Find a local support group: Search for a group in your state (in the US) or one of the other 12 countries with local chapters.
- Join a mailing list discussion group at Prostate Pointers: Email lists were one of the original ways to build communities online. Although they may seem “old-fashioned” now, there are still a lot of them around. Prostate pointers offers 14 lists to choose from. All are moderated to keep posts on topics. One of the lists welcomes wives, friends and other loved ones.
For other cancer support options, not necessarily specific to prostate cancer, check out our Cancer Patient Resources page.
Other Resources for Prostate Cancer
Sites/resources that don’t quite fit into the other categories.
Find a Urologist: The Urology Care Foundation offers this service to help you find a urologist (a doctor specializing in the urinary tract and male reproductive organs). Doctors in this database are members of the American Urological Association, and you can search by sub-specialty (you will most likely want to specify oncology/cancer).
Information for Kids About Prostate Cancer
If you have children, telling them may feel even harder than getting the diagnosis. We found a number of resources and articles that can help you talk with them in an age-appropriate way. There are also other resources, like websites and camps aimed at helping them cope over time.
Hopefully one or more of these resources is suitable for you and your child(ren).
They are not specific to prostate cancer, so instead of listing them here, you can find them on our Cancer Resources for Kids page.
Caregiver Resources
Being a caregiver is harder than you might have imagined. So if you’re caring for someone with prostate cancer, you need support and understanding, too. These resources can help.
His Prostate Cancer: This website is intended for wives, partners and family members of men with prostate cancer. It includes overviews of the disease, diagnosis, treatments and more. But it also shares stories and tips for helping your loved one cope and understanding how his disease can affect your life too.
“LadiesOnly” Prostate Cancer Forum: This forum is specifically for women who have been affected by prostate cancer. The site requires registration to view anything, so we can’t say how active it is. We’re including it because we’ve found it recommended by several other sites we trust.
There are many other websites and support groups not specific to prostate cancer caregiving. You can find some of them here.