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 Cancer Institute, where PCF-funded medical oncologist, Alicia Morgans, M.D., M.P.H, is Medical Director of Cancer Survivorship.
The criteria for survivorship used to be a lot more strict, says Morgans. “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: this new mindset means that 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.”
For more tips on wellness during cancer recovery, download PCF’s guide, The Science of Living Well, Beyond Cancer.
Read more in Part 2: Matters of Survivorship: Sexual Health