Breaking Stigma and Finding Support
Earlier this month, ProstateCancer.net sat down with the Movember Foundation and two Mo Bros, Doug Prusoff and Matt Gutt, to talk about Movember and its mission to provide a platform for mental health and prostate cancer awareness. You can read more about the Movember Foundation, Doug and Matt, and how you can get involved, in “Movember: Season of the ‘Stache” here.
Talking prostate cancer and mental health
Matt: Prostate cancer is like any other cancer - as soon as you get the word, some people think, “Oh my gosh, it’s the end of my world.” Most people get extraordinarily scared then they seek out information and start talking about it. One way to advocate on another’s behalf is to ask questions about their condition.
I made a personal pledge when I was diagnosed with prostate cancer to not keep it a secret. I think a lot of people choose otherwise, and that’s a totally valid choice. When I was diagnosed at 42, one of the easiest ways to give back was just to be completely open about my diagnosis. To talk to other people about prostate cancer, what my journey has been like, what the treatments are like, the side effects. I have friends who now have other friends who were diagnosed or at a high risk, and they’ve asked me to reach out to these guys to talk about my experience. Being an advocate in that way has been helpful.
One part of advocacy that is really important is finding a community and support for caregivers. While sympathy and concern are directed, understandably, to the patient, the suffering and struggles of caregivers often go unnoticed and unacknowledged. The caregiver is then left sitting in the background with their lives disrupted in a lot of other ways. I think those conversations are just as important as the ones with patients.
What do you say to those feeling lost or depressed?
Matt: The battle with prostate cancer is about time. The top of the mountain is a cure, but until there is a cure, it’s all about time. The advice I give other men and the advice I hear is, “You’re alive today. There are things you want to achieve before you die and you don’t know when that’s going to happen. There are things you can do now that will bring you great joy today.”
I’m not going to lie; the side effects can be brutal and extremely frustrating. With every new treatment to extend your life there comes some new side effect that somehow detracts from the quality of life. In my prostate support group, there was a lot of frustration around the sexual side effects and men who would say, “I can’t believe this. I can’t have sex with my wife anymore.” And my response to that is always, “Well you can’t have sex if you’re dead.” You have to step back and prioritize what you’re searching for in this journey. You have to keep those things in mind rather than dwelling on what’s happening right now in this very moment and all those frustrations.
An invisible disease
Matt: It’s normal to feel defeated; you’re not the only one. You have a lot of people who are standing behind you. One of the most frustrating parts about prostate cancer, depending on your stage, are the symptoms and side effects. When you’re first diagnosed you may have some symptoms and then you go on treatment and some those symptoms may go away. You’ll think, “Okay, I’m good. Everything’s been taken care of.”
I have metastatic prostate cancer now, so I have tumors in my chest and pelvis and one in my spine, but I can’t feel them. I don't know they’re there since there’s no outward sign. It’s that in-between stage. The only thing that reminds me of my cancer every day are all these treatment side effects; that becomes your malady from a day to day standpoint. It can be extraordinarily frustrating and bizarre because I always think people must look at me and think, “Well it doesn’t look like you have cancer. Your hair isn’t falling out and you’re not bedridden.” You can feel like a fraud some days. It can be frustrating when you have this diagnosis, you know how serious it is, but not physically feeling it can be hard to process.
The Movember Foundation’s resources and goals for the future
Doug: We look at the purpose behind fundraising in a couple of different buckets; two of which are focused on research support and men’s health services. For prostate and testicular cancer research support, the main focus for the foundation is better testing and treatments for these diseases. One of the Movember Foundation’s strengths is that we work with a global network of researchers. We’re able to pull people together beyond borders and support the research that will have the biggest impact on how people are treated in the US and globally.
The Movember Foundation also focuses on cancer navigation and support services. We’ve made big investments in those spaces to make sure that men, as they go through cancer treatment, have the support they need. This goes for both prostate and testicular cancer. It can take many years for new treatments to come down the research pipeline. For us, it’s crucial to make sure we have resources for men, their families, and caregivers in the interim. The Movember Foundation created a platform called TrueNTH, which offers support and resources for men facing prostate cancer.
Finding support and asking questions
Doug: The biggest message we tell people is to have these conversations with their doctors. You can also check out the information available on our TrueNTH platform and our decision support programs. When it comes to prostate cancer and treatment, there are so many choices and options to navigate. One thing I’ve heard too often from this community is this feeling of regret following a treatment decision. Offering men a place to get their questions answers and feel more sure about their choices is the core of TrueNTH. At the point of diagnosis, you have a place you can go where you know you can find good, solid information. The platform is a space to track and log personal information about your prostate cancer and find helpful, reliable information for patients and caregivers.
Matt: One way to offer support is to help people know what questions to ask their doctors or help them interpret the answers they get back from their provider. You want people to have the tools to advocate for themselves so they can feel confident saying, “Whoa doc, slow down.” One thing I noticed from being in online communities is the vast range of treatment options that people have pursued. So much of the decisions they make depend on their doctor and their type of cancer. You can’t really give anyone medical advice because there’s never one answer, but you can help lead them to resources so they can learn more about their condition and then know how to purse the right answers. Sharing your personal experience and learning from others can be helpful in the decision process. So much of this disease is the fear of the unknown. If you’re able to see what others have been through you can have some idea of what to prepare for.
If you're searching for mental health resources and support, you can learn more about Movember's Man of More Words movement here.
If you’re looking for more information about prostate cancer and what this diagnosis means for your life, you can check out the Movember TrueNTH platform here.
If you’re interested in signing up for more information, growing your mo, donating to the movement, or even starting your own Movember fundraising event, go to Movember.com or click here.
How much do you worry about prostate cancer coming back after treatment?