“Getting palliative care doesn’t mean you’re dying!” says Northwestern University medical oncologist and PCF-funded investigator, Alicia Morgans, M.D., M.P.H.
But a lot of patients, and their families think so; instead, the reaction may be: “Oh, no. It’s time. I’ve been moved to palliative care, which means I’m now in hospice!”
Not at all, says Morgans: “We all deserve a chance to feel better, and palliative care doctors have expertise in treating pain, depression, anxiety,” and other symptoms that men at any stage of prostate cancer may be feeling. “If you are experiencing these things, you owe it to yourself to reach out and feel better. They’re highly treatable – and they’re common.” Palliative care simply means easing symptoms and pain and keeping up nutrition in men who don’t feel like eating.
Think about it this way: As the great, retired Texas Ranger, Gus McCrae, explains in one of the greatest lines from Larry McMurtry’s novel and epic miniseries, “Lonesome Dove”: “It’s not about dying, it’s about living.”
Palliative care can help you live better. It can be especially helpful for men with a new diagnosis of metastatic prostate cancer. If you are living with cancer, Morgans says, “you should be just as aggressive with your quality of life as with your treatment.”
Not every man with advanced prostate cancer needs palliative care, she adds. “But if you have certain symptoms, such as pain, depression, anxiety, issues with eating and drinking, that aren’t getting better, you should think about partnering with palliative care – at least meet a palliative care practitioner, reach out to add that support.” You can see a palliative care specialist as needed. “You may not feel it’s necessary to continue, and you don’t have to.”
The role of palliative care in prostate cancer has not been well studied. But in patients with other forms of cancer, palliative care has been shown to make a significant difference, Morgans says. In one study, “we found patients with lung cancer who dealt with their symptoms, who worked with palliative care and symptom management teams in addition to their ongoing, regular lung cancer treatment, did better. Patients who had palliative care involved from the very beginning lived longer than patients who did not. If that’s what it takes for your symptoms and your life to be better, reach out!”
It makes sense: If you are in pain, you don’t eat; however, if you’re on a narcotic for pain medicine, it may not only diminish your appetite, but make you constipated. If you don’t eat, not only aren’t you getting nutrition to help your body stay strong and fight the cancer, you may not feel like being as active as you normally would, and you may start feeling depressed. You may not be sleeping well, which, in turn, may also contribute to depression. If treating these symptoms – not directly related to the cancer, but to the treatment of it – helps you eat better, drink fluids, sleep better and feel better, your quality of life is going to improve dramatically.
However, Morgans adds that “many men don’t complain,” and it’s up to their friends or family to mention symptoms to the doctor. “There have been studies that caregivers will bring up as much as 50 percent more complaints, particularly around pain issues. Often, I will ask men if they have any other questions or symptoms they want to discuss,” and they don’t say anything. “Then, if there’s a caregiver in the room, I always ask if there’s anything I missed, or something they want to share. And often, the answer will be, ‘He didn’t say anything, but yesterday he couldn’t get out of bed,’ or ‘He couldn’t climb the stairs.’
“Many men are stoic. They want to seem tough and manly for their families, which is unfortunate – because they can be just as manly and take care of these symptoms and actually feel a lot better.”
Whether or not you choose to add palliative care to your treatment of prostate cancer, it’s very important to share your symptoms with your medical oncologist, Morgans advises. “The pain experience of men with advanced prostate cancer can be variable. Some men can have widespread metastatic disease in their bones and not feel a thing, and other men can have a single site of cancer in a rib that can be tremendously painful and can really limit them from doing what they want to do.”
Target the bones: “Spot radiation,” stereotactic body radiation therapy (SBRT) or stereotactic ablative radiotherapy (SABR), is external-beam radiation therapy that’s focally directed – aimed at a spot of metastatic cancer in the bone. “It has been immensely beneficial to many of my patients,” Morgans notes, although not everyone responds in the same way. “Some men can get radiation to a bone met and start to feel better quickly, but some men start to feel better a couple of weeks later.” Bone-targeting drugs such as radium-223 can also provide great relief. “Radium allows us to treat many areas all at once,” and is administered as an infusion.
What else can help improve your quality of life?
Manage your stress. Morgans hopes to look at the role of stress management in improving pain and quality of life in men with prostate cancer; in the meantime, although there’s not scientific proof that it helps, “any intervention that can improve the quality of one’s life – if it doesn’t cost that much in terms of time, energy, effort, and money but it makes you feel better – presumably makes your life better.
Exercise? If you’re not already exercising regularly, don’t just jump into it without checking with your doctor first to make sure it’s safe, Morgans cautions. “Being active can help with pain – but you need to understand why you’re having the pain first.” If you’re having pain, don’t try to power through it on your own! “See your doctor to make sure you don’t have spinal cord compression or a fracture.” Once you get the green light to exercise, “develop an exercise plan that’s safe for you. Activity is always a good thing. Trying to be as close to normal is always a good thing, and it will make you feel better.”
Consider joining a support group: Perhaps a less-recognized major benefit of talking to other men with prostate cancer, Morgans suggests, “is that they give you an opportunity to sort of gauge what’s normal and what’s not – and if you think it’s normal to live in pain, you’re wrong, because there are things you can do. It may help you feel empowered, and also may encourage you to reach out to your doctor or palliative services.”
Don’t just jump on the medical marijuana/CBD bandwagon: “No data about CBD oil have been published in reputable journals, and I don’t prescribe CBD oil myself,” says Morgans. “I don’t have a license to prescribe medical marijuana, and most oncologists don’t, either.” Morgans worries about marijuana and its derivatives, including CBD oil, interacting with other medications – especially painkillers. “Using multiple drugs that have similar effects on the body can be dangerous, though we understand that some men want to use CBD oil and can do it safely. No matter what you use, telling your doctor about it to ensure safety is the most important thing.”
Morgans also is concerned that medical marijuana might mask other symptoms, or cause its own problems. “I’ve had patients overdose on CBD oil,” she says. One of Morgans’ patients had gone to a clinic and gotten a form of medical marijuana that was activating, “and caused weight loss and appetite suppression, rather than just lower anxiety or control nausea. The woman standing behind him in line said she had lost 80 pounds from it.” For many men with advanced prostate cancer, the goal is good nutrition and maintaining a healthy weight – not losing it excessively. Morgans’ patient switched to a less activating form of the drug and stopped losing weight.
However, if you are taking medical marijuana or CBD oil, please tell your doctor! “Don’t feel your doctor is going to judge you. It’s important for us to know. If I give opioids to a patient and he is also using marijuana and taking sleeping pills, I need to know,” to avoid drug interactions, and also to discuss the increased risk of drugs that can impair balance and affect driving.