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Questions To Ask Your Doctor About Metastatic Prostate Cancer

A diagnosis of prostate cancer can stir up fear and worry. That's especially true when it's metastatic, or stage 4, prostate cancer, meaning that it has spread from the prostate to other parts of the body.

"The diagnosis of metastatic prostate cancer, or any cancer for that matter, is emotionally debilitating," says Eleni Efstathiou, MD, PhD, a professor of medicine and chief of genitourinary medical oncology at Houston Methodist Neal Cancer Center in Texas. "We consider cancer to be the worst that can happen to us, and a lot of it has to do with stereotypes of older times where we didn't have [effective] treatments."

Today, oncologists have many treatments to slow stage 4 prostate cancer. The more you know about your cancer and how your doctor will manage it, the less frightening it will seem. Whether you've just been diagnosed, or your cancer spread after treatment, here's what to ask your doctor about metastatic prostate cancer.

Where Has My Cancer Spread?

This is one of the first questions to ask your oncologist about metastatic prostate cancer. Stage 4 prostate cancer manifests in different ways, says Dr. Efstathiou. It can range from cancer that has spread to only one or two places and is easy to treat, to tumors that have reached several organs, like the bones, lungs, and liver.

Your doctor will have you undergo imaging scans such as a computerized tomography (CT) scan, bone scan, or MRI to see exactly where in the body your cancer has spread. Knowing where your cancer has spread will also help your doctor determine the best treatment option for you.

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How Aggressive Is My Cancer? The answer to this question will help determine which treatment you receive. The most common way to get that answer is to determine your Gleason score, which is a grading system for prostate cancer that rates how aggressive your cancer is based on how your cancer cells look under a microscope.

[2] The sample of cancer cells are taken during a prostate biopsy. A higher score, which means your cancer cells look more abnormal, indicates a more aggressive cancer, whereas a lower score suggests less aggressive tumors.

Efstathiou adds that in general, prostate cancer that is first diagnosed at the advanced stage tends to be more aggressive than prostate cancer that comes back after treatment.

Should I Get a Second Opinion? If you've just been diagnosed with metastatic prostate cancer, you have the right to a second opinion.

[3] In fact, it's encouraged. Each oncologist has their own treatment methods and style. Seeing two — or more — doctors will give you a better perspective on your options.

Most insurance companies will cover the cost of a second opinion. Still, it's a good idea to check with your insurance company before you make the appointment.

What Are My Treatment Options? Options for treating metastatic prostate cancer include radiation therapy, hormone therapy, chemotherapy, targeted therapy, immunotherapy, and sometimes surgery.

[4] Typically, the first treatment is hormone therapy with a combination of two drugs — one that blocks your body's production of testosterone (a hormone that helps prostate cancer grow), and another that stops testosterone from getting into the cancer cells to fuel their growth, says Efstathiou.

Which treatment or combination of treatments you get will also depend on your cancer's location and genetic makeup. For example, if your prostate cancer has spread to the bones, radiation treatments that directly target bone problems may be considered. Or, if your cancer cells have a BRCA1 or BRCA2 gene mutation, you might get a type of targeted drug called a PARP inhibitor. This medication makes it harder for the cancer cells to repair their own DNA, which accelerates their death.

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If your doctor doesn't suggest genetic testing, ask for it, Efstathiou suggests.

Your health is another consideration. If you have another serious medical condition like heart disease or diabetes, your doctor might recommend a treatment option different from that given to someone without those conditions.

Learn About Treatment Options for Stage 4 Prostate Cancer

What Side Effects Might I Experience From Treatment? The drop in testosterone levels from hormone therapy can cause side effects such as:

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Each of the other treatments comes with potential side effects, too. Be sure to ask about the side effects associated with the specific treatments you will be given.

How Can I Manage Side Effects?

Not everyone who gets hormone therapy has side effects, says Efstathiou. If you do, your doctor has treatments or lifestyle recommendations to manage them. For example, antidepressants help with depression and hot flashes. Exercise can improve fatigue and weight gain.

Do You Recommend a Clinical Trial?

None of the prostate cancer treatments that are prolonging lives today would have been possible without clinical trials, says Efstathiou. These studies can give you access to new — and potentially more effective — cancer drugs. And you don't have to wait until you've run out of treatments to enroll in a study.

Ask your doctor whether you qualify for any trials of new therapies for metastatic prostate cancer. Before you enroll, make sure you understand what the therapy is expected to do and what side effects it might cause.

What Lifestyle Changes Should I Make? Treating prostate cancer involves more than just medication. Lifestyle changes are important, too. For instance, obesity is linked to a higher risk of dying from prostate cancer.

[7] Eating more fruits and vegetables and fewer saturated fats, exercising often, and losing weight if you're overweight are all good strategies for staying healthy during your treatment.

Don't forget to manage your stress. "A lot of men come in already being type A personalities — stressful people with stressful lives. And then on top of it is the stress of [living with] cancer," Efstathiou says. Staying active, practicing relaxation techniques like meditation and deep breathing, and seeing a mental health care provider if you feel overwhelmed, are all good stress-relief strategies.

What's My Outlook?

This question is on the minds of many of Efstathiou's patients. Your doctor can't tell you exactly how long you're going to survive with prostate cancer. That depends on a lot of factors, including the aggressiveness of your cancer, where it has spread, and how well it responds to treatment.

You do have reason to be optimistic, though. Survival rates for metastatic prostate cancer are improving as new drugs come out. Instead of asking "How long will I live with prostate cancer?" men should ask, "What is going to be my quality of life?" Efstathiou says.

Personalized Prostate Cancer Care Helps Bridge Disparities

African Americans face a higher rate of diagnosis and mortality from prostate cancer than white Americans, highlighting challenges in the realm of health equity.Credit: FatCamera/Getty Images

Prostate cancer is the most common non-skin cancer in men, comprising 29% of new male cancer cases, and trails only lung cancer as the second deadliest male cancer in the United States, according to the American Cancer Society's 2023 estimates. This silent assailant, often asymptomatic at its onset, also signals a deeper societal concern — African Americans face a 70% higher rate of new prostate cancer diagnoses than white Americans, highlighting a critical area of focus in the realm of health equity.

"This disease hits the African American population harder," says Michael Whalen, associate professor of urology at The George Washington University (GW) in Washington DC. "They have a higher incidence of diagnosis and are almost twice as likely to die from prostate cancer."

The evolving landscape of prostate cancer treatment challenges clinicians to stay updated, mindful of not only potential side effects but also financial ramifications. The team at GW Cancer Center merges cutting-edge personalized treatment with a mission to narrow the racial gap, fostering a health-care environment where equity and innovation go hand-in-hand.

Perspective shift

Metastatic prostate cancer, the most lethal form of the disease, has seen a shift in treatment approaches. Traditionally, androgen deprivation therapy (ADT), which curbs the testosterone production fuelling the cancer, has been the primary treatment. However, the CHAARTED trial, which highlighted early chemotherapy benefits alongside ADT, and the STAMPEDE trial, which explored combinations such as surgery and radiation, have ushered in intensified systemic therapy, markedly improving survival rates (A. Isgandarov et al. Urologie 62, 369–375; 2023).

A precision-medicine approach is necessary to control and cure prostate cancer while preserving functional outcomes. At GW Cancer Center, patients are stratified not only using National Comprehensive Cancer Network guidelines, but also by incorporating tissue gene-expression profiling and germline testing. The detection of heritable gene mutations is important for advanced disease to tailor the treatment approach and increase success rates.

Whalen notes that while there is growing interest in focal therapy for localized prostate cancer, surgery is still the primary curative option for many men based on their risk category and health status. The surgery involves removing the prostate, seminal vesicles and pelvic lymph nodes. Advancements including robotic surgery have reduced risks and improved recovery times. The era of robotic surgery has also brought improvements to post-operative functional outcomes such as continence and erectile function. Enhanced magnetic-resonance imaging and a high-tech fusion biopsy platform, employing 3D imaging of the prostate, are regularly used to boost disease detection rates.

Radiation, another cornerstone, is delivered by machines such as linear accelerators. Modern techniques like intensity-modulated radiation therapy and stereotactic body radiation therapy allow precise targeting of malignant lesions, reducing damage to adjacent tissue and organs. These technologies have been vital to treating tumour deposits at many locations throughout the body.

"Another part of our multidisciplinary approach is having certified genetic counsellors," adds Whalen. "The BRCA1 and BRCA2 genes that people associate with breast cancer are implicated in prostate cancer as well."

Cutting-edge care for under-served communities

Fayez Estephan, assistant professor of medicine at GW, recently won a fellowship for his work leveraging human epidermal growth factor receptor 2 (HER2), a protein expressed on cancer cells, as a disease marker to advance targeted therapies and precision medicine in prostate cancer management.

"Every patient diagnosed with breast cancer is tested for the HER2 receptor," explains Estephan. "Advanced prostate cancer is an area of need — we don't have a lot of therapeutic markers. Now that we have better agents to target the HER2 receptor, we wanted to take another look."

Estephan and Whalen's work at GW Cancer Center enables patients to enrol in several cutting-edge clinical trials, often combining treatments across multiple disciplines. The ongoing Southwest Oncology Group (SWOG) 1802 trial explores the impact of definitive prostate therapies including surgery or radiation in metastatic settings, a shift from the conventional use of systematic therapy alone. The INNOVATE trial combines ADT with salvage radiation. The GW team is working to improve patients' access to such trials, particularly those from historically under-served communities.

"About 40% of our prostate cancer patients are Black," says Whalen. "But Black representation in clinical trials throughout this country is notoriously low. One reason for that may be potential mistrust of experimentation. We need to navigate those social barriers."

The story of patient Y, a 63-year-old Black man currently taking part in the SWOG 1802 trial at the GW Cancer Center, underscores some of these barriers. He relates a journey familiar to many: a primary care physician unfamiliar with the critical signs of prostate cancer, where his escalating fatigue was overlooked.

"I told him I was tired climbing the staircase. But he was busy during his visits, and he couldn't determine the clues," says patient Y. There is frustration in his voice as he recounts the missed opportunities for an earlier diagnosis, which may have altered the course of his treatment.

Patient Y values the community-oriented approach at GW Cancer Center and the rapport he shares with the medical staff. Nonetheless, he grapples with treatment-induced regret, chiefly the loss of sexual function, a common side effect that underscores the complex journey of prostate cancer patients. Practitioners need to prioritize these quality-of-life concerns, Whalen says, rather than only focusing on quantity of life. Further investigations are needed to work towards achieving success on both fronts.

Redefining personalization

At GW, a leading academic medical centre, community is the key to providing comprehensive, personalized care for cancer patients. This ethos extends to monthly free cancer-screening clinics, dedicated patient navigators, reduced-cost pharmacies and a close-knit team that encourages frequent interaction among staff and trainees.

"Being able to champion clinical trial enrolment among under-served populations and give them world-class care, that keeps me engaged," says Whalen. "Because it's a teaching institute, working under the impressionable gaze of students and residents — who will in turn become the future leaders of our profession — means we have to perform at a high level."

Estephan says engaging patients in clinical trials reflects a core belief at GW Cancer Center — achieving the best outcome requires treating both patient and disease from many angles.

"In personalized medicine, we tailor a therapeutic plan not only to treat the cancer but also to serve the patient's social needs — what's best for patient A might not work for patient B," says Estephan. "Recovery from prostate cancer is trying to mediate and mitigate all these toxicities coming from the disease — the treatment, as well as the financial and social aspects. That takes a team approach, which is what we have here at GW. We're really proud of that."

11 Of The Best Peer-Support Resources For People With Cancer

Over two million people are predicted to be diagnosed with some form of cancer in 2024, according to the American Cancer Society (ACS). With an increase in rates for certain cancers, the ACS reports, people diagnosed with the disease could benefit from talking to someone who knows what they're going through now more than ever.

With a cancer diagnosis often comes months of treatment, side effects, and, for some, an impact on mental health, according to the ACS. But, experts suggest that receiving support from someone with a similar experience to you can be helpful when trying to cope with the disease.

"When patients undergoing treatment for cancer have the opportunity to meet peers in similar situations, they can open up to those who will truly understand them, receive and give guidance, and motivate one another to persevere," says Yael Zack, MD, medical oncologist and hematologist at White Plains Hospital's Center for Cancer Care. "This is deeply powerful."

Whether you've just been diagnosed or you're in remission, we've gathered some resources to help you connect with someone who shares your experience and get the support you need. 

Cancer Hope Network

Cancer Hope Network provides a one-on-one peer support service for both people with cancer and their caregivers. Through this program, nearly 500 trained mentors volunteer to pair up with someone who needs a compassionate listener and supporter. You can request a match through their website for free, and they'll connect you with a peer.

Not only does this organization provide peer matching, but they also offer community, educational, and financial resources on their site. You can also participate in events like their annual CHN Golf Classic or their Chrysalis Masquerade Ball, which raises money to keep growing their support system. 

Endometrial Cancer Action Network for African-Americans (ECANA)

The Endometrial Cancer Action Network for African-Americans (ECANA) was founded to provide a safe space for Black and African-American women to come together and talk about endometrial cancer. You can join others diagnosed with the disease every Friday for Survivors' Sanctuary, a virtual group for women seeking support and information for this cancer type. Part of the Survivors' Sanctuary is their Chair Yoga and Conversation series, a recurring virtual event featuring light yoga where women can swap their stories and share their symptoms.

ECANA's website also offers information on diagnosis and treatment, common cancer terms, and other helpful resources. You can sign up for their quarterly newsletter to hear about upcoming events.

Friend for Life

Friend for Life aims to help you navigate cancer by pairing you with a survivor who has a similar experience to your own. These volunteers are trained to help you through diagnosis, treatment, and recovery. You can fill out an online questionnaire to get the process started, and Friend for Life will match you with a volunteer who understands your situation.

Friend for Life hosts an annual fundraiser, An Evening with Friends, to support their peer program. They also offer a newsletter featuring the latest in cancer news, tips for living with cancer, and inspiring stories.

Imerman Angels

Imerman Angels connects people with cancer and caregivers who are seeking support to one of their "Mentor Angels" – survivors and caregivers with a similar history. Once you've filled out their online questionnaire, you'll get paired with someone trained to offer you comfort and empathy through your cancer experience. You can also register to become a mentor yourself. 

The organization's annual Brunch Run, which takes place in Chicago, Illinois, raises money to fund all their cancer support systems, including their library of educational resources and webinars.

Malecare

Malecare offers a wide range of peer support groups for those diagnosed with prostate cancer. These in-person and digital groups are designed to make men with this disease feel comfortable, heard, and helped. Depending on your circumstance, you can choose to join their Advanced Stage Prostate Cancer, Early Stage Prostate Cancer, or Gay Men's Prostate Cancer group.

Malecare can also help you find clinical trials to participate in around the country, and their free mobile app, Cancergraph, can help you track your symptoms and side effects as you go through treatment.

When patients undergoing treatment for cancer have the opportunity to meet peers in similar situations, they can open up to those who will truly understand them, receive and give guidance, and motivate one another to persevere.

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METAvivor

METAvivor is an organization dedicated to supporting people diagnosed with metastatic breast cancer, as well as funding research on the disease. METAvivor offers peer-to-peer support groups across the country, all led by other people with metastatic breast cancer. You can also apply to be a support group leader and receive training on how to set up and manage a new group.

The organization hosts multiple fundraising events throughout the year in support of metastatic breast cancer research and highlights patient stories on its website. 

National LGBT Cancer Network

National LGBT Cancer Network focuses on support, education, and advocacy for the LGBTQIA+ community. In an effort to provide LGBTQIA+ people with cancer more community, the network hosts peer support groups via Zoom three times a week, where you can talk about your diagnosis, life in general, or just say, "hi."

This organization also offers guidance on how to find LGBTQIA+-friendly providers, caregiver resources, and a resource library full of valuable cancer information.

SHARE Cancer Support 

SHARE Cancer Support works to help women with breast, metastatic breast, ovarian, uterine, and cervical cancer learn about their diagnosis and find support in their community. They offer virtual peer support groups for each cancer type, as well as for caregivers. You can also call their National Helpline at 844-ASK-SHARE if you have questions, or if you just need to talk to someone about your cancer experience.

Beyond peer support, SHARE provides free, virtual cancer workshops where you can learn more about your disease, get a chance to move your body, or simply chat with the other women attending. 

Sisters Network, Inc.

Sisters Network, Inc. Is the first and only national organization in the U.S. Focused on supporting and educating Black and African-American women with breast cancer. The organization's affiliate chapters provide peer-to-peer support through monthly meetings and in-person community outreach programs all over the country, on top of providing breast health resources to local communities.

Each year, Sisters Network hosts their Stop the Silence Walk, created to honor Black women with breast cancer and help raise funds for the organization's financial assistance program. On their website, you can find a comprehensive library of breast cancer resources and access free educational webinars.

Young Adult Survivors United (YASU)

Young adults (YAs) diagnosed with cancer can often experience a gap in emotional care. Young Adult Survivors United (YASU) attempts to fill that gap and help enhance quality of life for YAs during cancer treatment and recovery. YASU provides nationwide, virtual support groups, where young survivors can talk about their diagnosis and lean on one another in a safe space. They also offer in-person socials in the Pittsburgh area, where you can share a meal or just hang out with people who understand you.

YASU has free respite trips if you're in need of a break, which you can go on with a loved one or on your own, but if a group-hang is more your style, their annual Young Adult Cancer Camp – where you'll get a chance to meet other YAs with cancer, and participate in creative and physical activities – may fit the bill. YASU also has several fundraising events throughout the year, and provides financial assistance for young people with cancer.

4th Angel Mentoring Program

The 4th Angel Mentoring Program, sponsored by the Cleveland Clinic, is a free, national program providing personalized peer support for people with cancer. Through this program, you can connect and speak one-on-one with a volunteer mentor by phone, through email, or via online chat. These mentors have first-hand experience with cancer, and are trained to answer tough questions and share positive strategies for coping.

4th Angel also offers cancer resources on their website, providing information to help guide you as you go through treatment and recovery. 

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