Jennifer Edgecombe on Movember and Prostate Health Guidelines

Author(s): Scott Douglas Jacobsen

Publication (Outlet/Website): The Good Men Project

Publication Date (yyyy/mm/dd): 2024/10/06

*Video interview available here.*

Jen Edgecombe (She/Her) is the Director of sexual health and Well-Being for Prostate Cancer at Movember in Toronto, Ontario. With over 15 years of leadership in healthcare, Jen is dedicated to improving equitable access to cancer care and enhancing patient experiences. At Movember, she manages and delivers innovative prostate cancer initiatives, focusing on sexual health outcomes for patients and their partners.

Previously, Jen was Manager of Provincial Programs at BC Cancer in Vancouver, where she advanced patient-centred care and fostered cross-sector collaborations across British Columbia. Her role as Clinic Director at Lifemark Health Group and her long-term tenure with the City of Kamloops highlight her expertise in leading high-performing teams and implementing evidence-based practices.

Jen holds a Master of Rehabilitation Science in Oncology Supportive Care from The University of British Columbia. She is a passionate advocate for lifestyle interventions to reduce chronic disease burdens. She is actively involved in community engagement and public speaking.

Scott Douglas Jacobsen: Today, we’re here with Jennifer Edgecombe, the Director of Sexual Health and Wellbeing for Movember. How did you initially get involved with Movember?

Jennifer Edgecombe: Yes, thank you for having me. I’ve been with Movember for three and a half months. Before that, I worked at BC Cancer, the cancer control agency for British Columbia. I led the Patient and Family Experience team and the supportive care work across the province. At BC Cancer, I worked on projects that examined the experience of prostate cancer care for people in British Columbia—evaluating whether they had the information they needed, where there were gaps in knowledge about the next steps in care, and then developing educational processes to help people better understand what to expect and how to engage in shared decision-making. Through our focus groups with people affected by prostate cancer, we found that many were unaware of how significantly prostate cancer treatments would impact their sexual health and function.

So, when I saw the opportunity with Movember to address this issue, I applied immediately, eager to get involved in helping to find a solution to this prevalent and serious issue.

Jacobsen: When do men typically become more proactive about their prostate health? Is it only when cancer becomes a concern?

Edgecombe: Are you asking about screening guidelines?

Jacobsen: Yes, screening guidelines and general awareness of prostate health.

Edgecombe: The challenge is that every country—and even different regions within countries—has its guidelines based on the availability of doctors, tests, and the types of tests covered by public health systems, which can vary widely. Typically, we encourage people with prostates to begin the conversation with their doctors around the age of 50. However, for people of African descent, and those with a family history of prostate cancer, medical associationsrecommend starting the conversation about prostate health as early as age 40.

Jacobsen: Why is there a difference in the age recommendations for people of African descent?

Edgecombe: That’s a good question. There are biological factors at play. Some genetic factors predispose men of African and Caribbean descent to higher rates of prostate cancer than men of other backgrounds. Additionally, access to prostate cancer screening is not as readily available to some demographics. We want to ensure these conversations happen earlier so that treatment can be offered sooner and earlier, if necessary.

Jacobsen: What factors, in terms of environment, lifestyle, and wellness, also contribute to increasing the risk of prostate cancer?

Edgecombe: That’s a great question. There are genetic factors—if a first-degree relative, such as your father or brother, has had prostate cancer, you should consider getting checked. Prostate cancer is not a single disease; it consists of different tumour types and severities, so genetics plays a significant role. Lifestyle factors also matter—exercise, diet, alcohol consumption—all the things we know we should be mindful of contribute to someone’s risk of developing prostate cancer. If you have questions about your risk, speaking with a doctor is always a good idea.

Jacobsen: How much misinformation is there among men about their risk factors? Why don’t they check their health regularly, whether 40, 50, or older?

Jacobsen: Yes, this is a big issue for some individuals. There was a standard of care for a long time. In some areas, it’s still the standard to perform a digital rectal exam. This involves the doctor inserting their finger into a patient’s anus to check the prostate. For many individuals, that’s an uncomfortable and invasive experience, making it a test they would rather avoid.

Many health agencies have sidelined the digital rectal exam in favour of less invasive screening procedures. There are now blood tests that are quite accurate, and there are other tests your doctor can recommend. However, there seem to be two reasons people hesitate: first, the fear of testing because it feels uncomfortable, and second, the mindset of “if I don’t look at it, maybe it won’t exist.” Prostate cancer is a very prevalent disease, so it’s critical to encourage people with prostates to have these conversations and get checked as early as possible. This helps mitigate risk factors and ensures that testing starts early.

Jacobsen: What are comparable cancers in terms of prevalence in the general population?

Edgecombe: That’s a tricky question because there are cancers that are prevalent in the population, such as lung cancer or breast cancer. However, the impact and severity of those tumour types can be very serious. The survival rate for prostate cancer is quite high, so while the incidence of prostate cancer is high among North American men, the survival rate for isolated, localized tumours is also very high. I worry that comparing prostate cancer to something like lung cancer or breast cancer might cause more fear than necessary.

The important thing to understand about prostate cancer is that many people are diagnosed and go on to live very long, healthy lives. At the same time, there are comparable diseases in prevalence and onset, but the treatments and severity are not the same for most people. We want to encourage people to know their bodies and risk factors and get tested early to reduce those risks.

Jacobsen: What are some common detection and treatment modalities when resources are available?

Edgecombe: That’s a great question. The detection and treatment options can be quite sophisticated in more urban or well-resourced areas with advanced medical technologies. One common approach for some types of prostate cancer is called “active surveillance.” This means the doctor will monitor the tumour regularly without immediately resorting to treatment. The idea is to check periodically for any changes and intervene only if necessary, which allows many people to live for a long time with minimal impact on their quality of life.

Another common treatment is surgery, typically performed by a urologist. The urologist surgically removes the tumour, a widely available option since it can be done in most surgical centers. Another option for some people is radiation therapy. In Canada, for example, access to radiation therapy is limited by the availability of expensive machines called linear accelerators, which are not present in every facility. Surgery may be preferred in less densely populated areas simply because it’s more readily available.

For more advanced-stage prostate cancer, there are also hormone treatments and systemic therapies, which target the cancer more broadly and are used when the disease has spread.

Jacobsen: What about in more isolated areas where advanced technologies might not be available for detection and treatment?

Edgecombe: This is another tricky issue, particularly for people in the United States or Canada. In North America, we see significant differences in access to care depending on where you live. In privatized healthcare settings, especially in the U.S., there’s often greater access to innovative treatments and cutting-edge technologies. However, access can be more limited in more rural or isolated areas.

As I mentioned, active surveillance is a viable option for some patients, which can be helpful in areas where more advanced treatments aren’t easily accessible. When treatment is necessary, surgery is generally available because it can be performed in most surgical centers. Patients may have access to radiation therapy in more urban areas or facilities with better funding, but that depends on the availability of equipment like the linear accelerator. For those with more advanced prostate cancer, hormone therapy or systemic treatments are also available options, though again, access may vary based on location and healthcare infrastructure.

So some people might recognize these as chemotherapy-type treatments. As I mentioned, prostate cancer is not a single disease, and it manifests differently in different people. For example, two people can both have prostate cancer, but one may undergo active surveillance while another might need intense hormone treatment, such as androgen deprivation therapy or radiation therapy. It varies from person to person. Additionally, some may have access to advanced private hospitals in the U.S. that offer innovative treatments that others may not even be aware of.

Jacobsen: What are the impacts on sexual health? How are men who are undergoing treatment or are post-treatment for prostate cancer managing the sexual health issues that may arise as a consequence of various treatments?

Edgecombe: Yes, this is an important question. It’s essential to define how sexual function changes and why that might occur. Experts in this field use what’s called the biopsychosocial model to explain changes in sexual function. So, is it biological—something physical that has changed sexual function? Is it psychological—perhaps increased anxiety that is causing changes? Or is it social—factors like relationship dynamics or even broader social factors, such as whether the individual belongs to a minority sexual orientation or gender identity group? These are the three areas we look at when identifying changes to sexual function.

With prostate cancer, there’s added complexity. The risk factors for prostate cancer overlap with risk factors for other diseases that can also affect erectile function. For example, diabetes can cause issues with sexual function. So, suppose someone with diabetes also has prostate cancer. In that case, the question becomes: Is the problem due to prostate cancer, diabetes, or perhaps anxiety? It’s important to consider all these factors.

In many press releases and studies, numbers are given to describe how many people experience sexual health changes related to prostate cancer, but I want to caution us here. There are a few barriers to confidently reporting these numbers. One of them is underreporting—many men may not feel comfortable disclosing changes in sexual function, especially in a society that emphasizes masculinity and the importance of erections. Are they willing to admit that their sexual function has changed? Another factor is the complexity I mentioned—whether the issue is due to diabetes, anxiety, or prostate cancer itself.

Experts seem to agree that most men with prostate cancer will experience changes in sexual function. Some may be able to resolve or improve the issue. Still, we must give people the language and remove the stigma so that they can have these conversations.

Jacobsen: In the biopsychosocial model, what are the chances that sexual function or dysfunction will resolve itself, and how common is this resolution among men who have had or are currently suffering from prostate cancer, especially with the benefit of modern expertise and technology?

Edgecombe: That’s a great question. Much of the current work is focused on redefining sexual scripts, intimacy, and even the role of erectile function as a component of masculinity. It’s difficult to be certain about statistics when it comes to whether two people with the same prostate cancer will both retain or recover their sexual function after treatment. It’s highly individual, and what works for one person may not work for another.

On the biomedical side, various treatments are available to address biological issues. However, there’s a misconception among many people. Some think, “I’ll have the cancer treatment, and if there’s a problem afterward, I’ll just take a PDE5 inhibitor,” which is better known by brand names like Viagra or Cialis, and that will fix everything. The reality is that, for many people, those inhibitors won’t work because the underlying mechanism that they rely on has been altered by prostate cancer therapy.

Other devices, such as vacuum pumps and injections, can be used. Other rehabilitation treatments are also available, and clinics have been established to guide people and their partners through this process. When discussing the resolution, it’s important not to think about it as simply regaining the same function as before. Instead, there’s a shift towards redefining what sexual function means.

Many people define their sexual identity or “sexual script” based on their experiences at 17 when they have optimal health and function. Society tends to focus on penetrative sex as the ideal. Still, that mindset doesn’t always help individuals who have experienced changes due to prostate cancer. There’s an opportunity here to redefine what sexual health and intimacy mean and to encourage conversations that allow people to create a new normal.

Jacobsen: Why are the number of prostate cancer cases projected to double by 2040?

Edgecombe: You’re referring to the study funded by Movember in April. Several factors are contributing to the projected doubling of cases. First, the disease burden is already substantial. With more diagnostic tools becoming available, more cases are being identified. Additionally, lifestyle issues are playing a role. Unfortunately, society is not becoming more active and only sometimes adhering to recommended lifestyle guidelines.

These significant projections should be taken seriously because they will impact healthcare systems, individuals, families, and partners. It’s important to prepare for the increase in cases and ensure we have the resources to manage this growing health issue.

Jacobsen: How did the partnership with Movember come about? Aside from the study, what benefits have come from this partnership regarding raising awareness?

Edgecombe: Are you referring to the partnership with the International Society of Sexual Medicine (ISSM)?

Jacobsen: Yes.

Edgecombe: ISSM has been a global leader in sexual medicine for many years. When Movember was starting, it had always focused on prostate cancer—raising money and awareness about the disease. Early on, Movember identified that the number one side effect men were most concerned about after prostate cancer treatment was the resultant changes to sexual function. Initially, we thought it might be medication management or something else. Still, when we asked people directly, it became clear that sexual function was the most important issue for them.

So, Movember and ISSM created a partnership several years ago to address this concern and find ways to help people manage the sexual side effects of prostate cancer treatment. Together, they’ve been working to provide resources and solutions for those affected.

Jacobsen: I was surprised that the investment was so significant. Movember’s investment in prostate cancer research totalled USD 230.4 million.

Edgecombe: Yes, that’s correct. Across Movember’s entire portfolio, a large portion of that funding is directed towards various cause areas, with sexual health being one of them. The investment spans multiple research areas, and sexual health is a key focus.

Jacobsen: What kind of feedback have you received, whether from media, experts, or other partners, regarding the funding, research, and awareness raised by Movember?

Edgecombe: It’s important to note that while Movember has funded many studies—and research is critical—studies alone aren’t the solution. They are just one part of the puzzle in addressing these issues. The feedback we’ve received is clear: people want action. They’ve spoken about the challenges they face. The research helps us understand those challenges, but the goal is to turn that understanding into practical solutions that help people manage the side effects of prostate cancer treatment, especially regarding sexual health.

Jacobsen: This is the number one issue men are dealing with after prostate cancer. By coordinating and funding the development and implementation of clinical practice guidelines, Movember is truly putting its money where its mouth is and moving the conversation forward. This is going to completely change the experience of prostate cancer treatment for people around the world.

Regarding your question about the response, there has been a lot of excitement and optimism. For many, this has been a bleak area for a long time, and now there is hope. Physicians are going to be equipped with the tools they need to address sexual health changes with their patients. Patients, in turn, will receive the information they need to understand what will happen and how they can manage it. Nurses and allied health staff, including social workers and others on the care team, will also have the necessary knowledge. This ensures that the side effects will be addressed—not necessarily solved. Still, patients won’t be left at home, struggling with life-altering side effects and feeling like there’s nothing they can do or talk about.

This is going to change a lot of people’s lives.

Jacobsen: Has there been any resistance to the provision of these guidelines?

Edgecombe: Could you clarify what you mean?

Jacobsen: Sure. Have you encountered cultural or social resistance as Movember and the medical community introduce these new health guidelines, including recommendations and strategies to help patients? You mentioned earlier that redefining certain traditional models might be challenging in some subcultures within North America.

Edgecombe: Yes, that’s an important point. To clarify for anyone listening—Movember isn’t the author of these guidelines. Movember funded and coordinated the initiative, but these guidelines were developed by the world’s leading experts in sexual medicine, who synthesized the available data. Clinical guidelines represent the highest quality of evidence we have in medicine.

The guidelines consist of 47 clinical practice statements, and the first statement emphasizes that there should be a clinician-led conversation with the patient about realistic expectations for sexual function following prostate cancer treatment. This conversation must also include cultural and social factors. Part of this initiative’s work is ensuring that these conversations are sensitive to the individual patient’s cultural and social background. For example, you mentioned subcultures where traditional models might be more resistant to certain discussions. We recognize that people’s experiences in healthcare differ greatly based on these factors, so the guidelines must consider those differences.

This work is important because these underserved populations are the focus. In every region where we operate—Canada, the U.S., Australia, and others—we’re collaborating with local experts to understand who has historically had poor healthcare experiences, who might be missed by this service delivery, or who may face barriers to access. We’re then working to create culturally and socially appropriate approaches to care so that most people can benefit from it.

Jacobsen: As we’re looking at time, how can people get involved, whether through volunteering, financial contributions, offering expertise, or applying for positions?

Edgecombe: I’m new to Movember, but this work can only be done with people joining the cause. We’re approaching our campaign month in November, and if you can grow a mustache, that’s one way to raise awareness and funds. You can also get involved by moving your body—through walks, runs, or any exercise to raise money. Or you could host a fundraising event with friends and have everyone donate. It’s important to remember that this work requires significant investment, and we want to ensure we can continue impacting as many people as possible.

If anyone wants to get involved, please visit the Movember website for more information. Suppose you want details on the guidelines, this initiative, or sexual health and prostate cancer. In that case, we have a website called True North that is specifically for patients. We’re updating the True North website with the latest guidelines and resources from ISSM, so that patients can access the same information as their doctors. We want patients to be well-informed and empowered to participate in decision-making about their treatment. Those are two great ways people can get involved.

Jacobsen: Excellent. Any final thoughts based on today’s conversation, Jennifer?

Edgecombe: I appreciate the opportunity to talk about this. I believe that the way we, as a society, approach sexual health right now can be harmful to many people. If I can accomplish one thing in this role, it would be to see more people openly discussing changes to their sexual health—especially when it’s related to cancer. We don’t want people sitting alone, depressed, or suffering because of stigma or outdated beliefs about masculinity. I hope that through this work, we can advance conversations about sexual health and masculinity and foster more support for one another.

Jacobsen: Jennifer, thank you very much for your time today.

Edgecombe: Thank you, Scott. This has been great.

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More info:

• Grow The traditional way to Mo for Movember is to grow a moustache to raise funds for men’s health.
• Move to Get physically active by walking or running over the month for the 60 men we lose to suicide each hour across the world.
• Host A popular workplace option, get together with your colleagues and do something fun – trivia, a tournament or something creative.
• Mo Your Own Way: A choose-your-own-adventure challenge epic in scope and scale. Think big and go bigger. You make the rules.
• Learn more at Movember.com.

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