Who’s a survivor? You are, if you are trying to get your life back after a diagnosis of prostate cancer.
Survivor. What does that word bring to mind? (Besides, of course, the name of the rock band whose song, “Eye of the Tiger,” went double-platinum in 1982 and was the theme of “Rocky III.”)
There are more prostate cancer survivors now than ever before. More men are being cured of localized disease, and more men are living longer with advanced cancer than ever before. This is great news! It also means that, as men live longer after treatment for prostate cancer, they have new things to deal with – which brings us to the evolving area of cancer survivorship.
Survivorship is basically the day-to-day effort to live your best life during or after treatment for localized cancer, or between and in the midst of treatments for more complicated disease. It’s such a big part of cancer treatment now, in fact, that medical centers are devoting significant resources to it. One of them is Dana Farber, where medical oncologist Alicia Morgans, M.D., will soon become the new Medical Director of Cancer Survivorship.
The criteria for survivorship used to be a lot more strict, she notes. “The old-fashioned definition would say that patients living with cancer are not survivors” – that a true survivor could only be someone whose cancer has been cured. That has changed. “Now, anybody living after a diagnosis of cancer is a survivor and deserves to have the best quality of life possible.”
Good news: for many men recovering from treatment or living with prostate cancer, help is available. But it may be up to you to ask for it, if your doctor doesn’t address it specifically.
Note: Here is where your spouse, partner, family or friends can help. Those who love you may be aware of some things that you might not have noticed, and their insights can help your doctor take better care of you – if you say it’s okay for them to talk about it.
“Men are stoic, and may not feel comfortable admitting a weakness or vulnerability, or they may not have the words to describe what they’re going through,” says Morgans. “Or, they may not perceive a problem, but their caregivers or loved ones may. Raising their concerns – with the permission of the patient – to the doctor can be very helpful.” This is especially true, she adds, in cases where the patient is experiencing “psychological distress, depression, anxiety, and may not recognize it. Sometimes the caregiver can say, ‘You don’t realize it, but you’ve had a really short temper.’ Or, ‘You may not recognize it, but you’re sleeping all day, and you’re not eating.’Or, ‘Your cancer is controlled, but your behavior is very different, and you seem really down.’ We may not perceive these changes as being different or outside our norm, but if they’re empowered to speak (with your permission!), your caregiver or family members can really help reflect back to us more accurately what’s happening with you.”
While visiting the doctor, phone a friend! If it’s not possible for a family member to be there at the appointment, no problem! “We can often call or conference a loved one in,” with Zoom, FaceTime, or through the medical center. There are also “electronic ways,” Morgans adds, for loved ones to communicate with the doctor. You can write an email to the doctor, using the patient’s portal – or even your own. “In many systems, caregivers can have an account that’s connected to the patient. I have many patients whose spouse has an adjacent account. Others just use the patient’s account.”
Be sure to identify yourself, that this is the patient’s daughter, spouse, or friend. “Don’t represent yourself as the patient if you’re not the patient.” This does happen, Morgans says. “Sometimes wives will get on there as the patient, and you know it’s the wife: women tend to talk a lot more than men! I’ll see a long description, and write back, ‘Is this John’s wife?’” The information is still appreciated, she adds.
“If there’s something they think the doctor needs to know, and if they’re empowered by the patient to speak to us, the caregiver or spouse can intervene in a meaningful way.”
Sexual health is “one of the most underrecognized issues” for prostate cancer patients and their partners. One big reason why is that men just don’t want to talk about it, either because they keep hoping it will get better, or they just decide to be stoic and carry on. “Even though we have a roadmap for how to address these issues after surgery or radiation, we often lack the support system,” says Morgans. “There are way too few sexual health counselors specifically dedicated to helping men recovering from prostate cancer.” And yet: “This is an area of high interest to many patients. Sexual health affects their personal experience, their mood, energy, everything they do.” It also affects the health of their partners.
Although this is the issue many men wish would just go away, what they need to do is just the opposite of hoping for the best: be proactive. If you had surgery and you haven’t already had this discussion with your urologist, find out what you can do for penile rehabilitation. This may include pills such as Viagra, Cialis, or other PDE5 inhibitors; vacuum devices for stretching the penis to protect against scar tissue formation; in-office or at-home treatment with a small TENS unit to stimulate nerve regeneration and help with return of urinary control; penile injection; or a penile implant.
Don’t suffer in silence! Don’t listen to anyone, yourself included, who thinks, “Your cancer has been cured. Just be happy with that.” There are many steps you can take to recover your sexual health – but they won’t happen if you don’t ask for help.
Intimacy: This is not the same as sexual health, but men on ADT and their partners still need intimacy. If your oncologist or medical center does not provide counseling in this area, ask for a referral to a sexual health counselor, and keep this in mind: you are not alone, whether you’re the patient or his partner. There are thousands of couples dealing with this issue, as well. Your doctor also may be able to recommend support groups, online and affiliated with local medical centers.
Fighting Back on ADT
ADT will try to affect your overall health, but here’s the good news: you can fight back, Morgans. Arm yourself with what it might do, and you will be better able to protect yourself against its tactics. So here, in no particular order, are some of the things ADT might affect, and countermeasures you can take:
Bone health: Prostate cancer can affect your bones, and so can ADT, in different ways. Treating prostate cancer in the bones not only protects them, it can improve survival! ADT raises your risk of osteoporosis – but not only is this treatable, it’s not a “done deal” that every man on ADT will develop it! “Avoiding fractures is so important,” says Morgans. “Men who have fragility fractures (due to osteoporosis) can lose their mobility and independence, and can have some major changes in their lives until those fractures are repaired. If we simply follow the guidelines we already have on how to care for bone and prevent osteoporosis, we can improve those outcomes pretty dramatically.
“A lot of the complications associated with ADT are absolutely things that we can address head on, try to prevent and to reverse; for instance, we have effective therapies to counteract bone thinning and lower the risk of fracture and complications from weak bones. Many of the known side effects of ADT are not necessarily inevitable.”
Your risk of cardiovascular disease: Here’s some good news: A new drug, Orgovyx (relugolix), was approved in December 2020 by the FDA for men with advanced prostate cancer, based on results of the Phase 3 HERO study. It lowers testosterone, but it works in a different way. It’s also administered differently – a once-daily pill instead of a shot – and it has a significantly lower risk of major adverse cardiovascular events compared to Lupron (leuprolide). If you have cardiovascular risk factors, such as high blood pressure, high cholesterol, a family history of cardiovascular disease, diabetes or pre-diabetes, if you’re overweight or if you smoke: heart disease needs to be on your radar, because ADT can make it worse. “Multiple studies have shown that men who have cardiovascular risk factors, particularly if they are not addressed, have higher rates of complications and even death on ADT,” says Morgans. But treating these risk factors with diet, exercise, and medication if needed, can “improve overall survival and also quality of life. When your body is healthier, you feel better.”
Note: For just about every category on this list, exercise is one of the answers. Men on ADT who exercise lower their risk of having cardiovascular and cognitive effects, developing insulin resistance, diabetes or pre-diabetes, obesity, and high blood pressure. “All of these are modifiable risk factors,” says Morgans.
Depression: “Depression is highly treatable,” says Morgans. “This is important, because evidence suggests that men treated with ADT do have higher rates of depression than men who have prostate cancer but are not receiving ADT.” But depression is underdiagnosed and undertreated in men on ADT, she adds, “perhaps because of reticence to ask for help, or a perceived stigma with mental illness,” or perhaps because it has crept up, and the patient hasn’t recognized that there’s a problem. This is where friends, family and caregivers can help. Depression can affect sleep, appetite, and memory, as well.
Cognitive changes: ADT can cause cognitive decline and dementia. However, this is more complicated than it sounds, Morgans notes. For one thing, symptoms of depression can be mistaken for cognitive decline, and can improve with antidepressants and exercise. For another, there are multiple forms of dementia, including vascular dementia. “If that risk is increased because of ADT, then a medicine that reduces the risk of major adverse vascular events could feasibly lower the risk of dementia, as well,” although this remains to be proven in large-scale studies. In general, “what’s good for the heart is good for the brain,” and taking steps to improve your cardiovascular health will help protect your cognitive function, too. “We also have strategies and mental tricks to help improve memory, and even medicines that may slow the progress of Alzheimer’s.” The key is to tell your doctor, and get further evaluation and help if needed. “The choice of therapies may help, as well,” Morgans notes. “In multiple ongoing studies, some really interesting MRI data suggests that there may be differences in some distribution of blood flow in the brain” between androgen-targeted medicines, “including one study with darolutamide that has just launched.”
Hot flashes: “At its basic level, ADT is lowering testosterone, which keeps men’s bodies functioning in a way they’re used to,” says Morgans. “Just as we see when women go through menopause, there are widespread changes. The constellation of symptoms is much broader than just the effects of ADT on the prostate cancer cells themselves.”
Among the most annoying and persistent – and undertreated – are hot flashes, which “can affect mood, sleep, and cognition,” says Morgans. A novel approach on the horizon is a “wearable,” she adds. It’s like an Apple watch, and can be linked to your phone. The basic idea is to stimulate the autonomic nerves on the wrist, with a cool sensation. “PCF is actively engaged in supporting work that can potentially improve quality of life and reduce hot flashes in men on ADT. This is an area with much room for improvement, where attention is needed, and pharmacologic therapies aren’t as effective as we wish.”
For now, treatment with antidepressants may help; so can exercise. Many men seek relief of symptoms with holistic treatments, including relaxation therapy, hypnosis, cognitive-behavioral therapy, and acupuncture.
In addition to the book, I have written much more about prostate cancer on the Prostate Cancer Foundation’s website, pcf.org. The stories I’ve written are under the categories, “Understanding Prostate Cancer,” and “For Patients.” As Patrick Walsh and I have said for years in our books, Knowledge is power: Saving your life may start with you going to the doctor, and knowing the right questions to ask. I hope all men will put prostate cancer on their radar. Get a baseline PSA blood test in your early 40s, and if you are of African descent, or if cancer and/or prostate cancer runs in your family, you need to be screened regularly for the disease. Many doctors don’t do this, so it’s up to you to ask for it.
©Janet Farrar Worthington