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Men who are newly diagnosed with prostate cancer have difficult choices to make about medical therapy, and the last thing any of them want is to regret their treatment decisions later. But unfortunately, treatment-related regrets are quite common, according to a new study.

After looking into the experiences of 2,072 men diagnosed with prostate cancer between 2011 and 2012, the investigators found that more than one in 10 were unhappy with their chosen treatment.

The men were all younger than 80, with an average age of 64. Nearly half of them had slow-growing cancers with a low risk of recurrence or spread after treatment. The rest were in intermediate- or higher-risk categories.

All the men were treated in one of three different ways: surgery to remove the prostate (a procedure called radical prostatectomy); radiation therapy; or active surveillance, which entails monitoring prostate tumors with routine PSA checks and imaging, and treating only when, or if, the cancer progresses. More than half the men chose surgery regardless of their cancer risk at the time of diagnosis. Most of the others chose radiation, and about 13% of the men — the majority of them in low- or intermediate-risk categories — chose active surveillance. Then, at periodic intervals afterwards, the men filled out questionnaires asking if they felt they might have been better off with a different approach, or if the treatment they had chosen was the wrong one.

What the results showed

Results showed that after five years, 279 of the men (13% of the entire group) had regrets about what they had chosen. The surgically-treated men were most likely to voice unhappiness with their decision; 183 of them (13%) felt they would have been better off with a different approach. By contrast, regrets were expressed by 76 (11%) of the radiation-treated men and 20 (7%) of men who chose active surveillance. Men in the low-to intermediate-risk categories were more likely to regret having chosen immediate treatment with surgery or radiation instead of active surveillance. The men with high-risk cancer, however, did not regret being treated immediately.

The study was led by Dr. Christopher Wallis, a urologic oncologist at Mount Sinai Hospital in Toronto, Canada. Wallis and his team didn’t explore which specific disease outcomes or complications led to the regrets associated with particular treatments. However, the study did find that sexual dysfunction was significantly associated with treatment regrets in general. “And patients on active surveillance may develop regret if their disease progresses and they then come to believe that they may have been better suited by getting treatment earlier,” Wallis wrote in an email.

The study’s key finding, according to the investigators, is that regrets arise from discrepancies between what men expect from a particular approach and their actual experiences over time. “That’s the important take-away,” Wallis said.

In an accompanying editorial, Randy Jones, PhD., RN, a professor at the University of Virginia School of Nursing, emphasized that improved treatment counseling at the time of diagnosis can help to minimize the likelihood of regret later. This communication, he wrote, should consider the patient’s personal values, stress shared decision-making between patients and doctors, and aim for an “understanding of realistic expectations and adverse effects that are possible during treatment.”

“This study underscores the importance of not rushing into a decision, and fully understanding the time course of side effects and what can be expected from them,” said Dr. Marc Garnick, the Gorman Brothers Professor of Medicine at Harvard Medical School and Beth Israel Deaconess Medical Center, editor of the Harvard Health Publishing Annual Report on Prostate Diseases, and editor in chief of HarvardProstateKnowledge.org. “Only when these consequences of treatment(s) or surveillance are fully understood is the patient able to make a truly informed decision.” All too often, newly diagnosed patients respond by “wanting to take care of this as soon as emergently possible.” But with prostate cancer, patients have the time to fully understand what is at stake. “I urge my patients to speak with members of prostate support groups and other prostate cancer patients about the issues they are likely to face, not necessarily in the immediate future, but years later. The fact that this study evaluated individuals 10+ years following their decision is an important feature in helping us better understand the time course during which regrets may be experienced.”

As a doctor, I am constantly advising my patients to prioritize their own mental and physical health. Get adequate sleep. Eat healthy. Learn how to say no so you don’t collapse from exhaustion. Love and care for yourself like you do others.

I talk the talk but don’t always walk the walk — even though I know, both intellectually and physically, that self-care is critical to my well-being. When I am run down, my MS symptoms cry out for attention: left leg weakness and numbness, subtle vertigo, a distinct buzzing in my brain like a relentless mosquito that won’t go away no matter how many times I twitch and shake my head. I have become frighteningly good at ignoring these symptoms, boxing them up and pushing them away. Often, I can muscle through; other times it just hurts.

Recently, a friend challenged me to think about my relationship with my illness, to describe MS as a character in my story. This was a useful exercise. I conjured up an image of a stern teacher. She is frighteningly blunt and lets me know, loud and clear, when I disappoint her. She can be mean and scary, and I don’t really like her. But I must admit she is usually right. Still, I often defiantly dismiss her, even when part of me knows this is not in my best interest.

This holiday season, I wanted to do better. I needed to do better. So, as Thanksgiving approached, as I prepared to host 16 family members, many for multiple days, I paused to ask myself, What does MS have to teach me about self-care? I don’t like having this disease, but I do. I can’t change my reality, so I might as well benefit from the lessons MS is forcing on me. I believe they are relevant to all of us, whether we live with chronic illness or not, so I’ll share them here.

The first steps: Listen and observe

When my MS symptoms flare, it’s a message that I am tired, overextended, and stressed. I need to rest. I don’t always listen right away, but eventually I am forced to, and when I listen, I feel better. All of us can benefit from slowing down and tuning in to our physical selves. What sensations are you experiencing in your body, and what does this tell you about your underlying feelings and state of mind? Yes, we should heed our thoughts, but tuning in to our bodies takes us deeper, to feelings that might be hidden, secrets we might not want to acknowledge, a physical truth. If you don’t have a chronic illness, the messages might be more subtle — a vague tightness in your chest, a quick catch in your breath, a barely noticeable tremor in your hands — but they exist, and they signal stress.

The science is clear: the body’s stress response — though potentially lifesaving in a true emergency, when “fight or flight” is essential to survival — can be toxic in our everyday lives. Stress triggers our sympathetic nervous system to kick into overdrive in response to a perceived threat, releasing hormones such as cortisol and inflammatory molecules that, when produced in excess, fuel disease. Conversely, we know that pausing to take notice and interrupting this negative cycle of stress is beneficial. It can be as simple as breathing deeply and counting to 10. Our bodies know what’s up and let us know when we need to take care of ourselves. We must pay attention.

You are not responsible for everyone and everything

The holidays, essentially from mid-November through the end of the year, are a stress test we create for ourselves. The land mines are everywhere: more food, more drinking, more family dynamics, more unfamiliar (or overly familiar) surroundings. Personally, with my overinflated sense of responsibility, I experience a kind of dizzying performance anxiety every holiday season. I believe it is my job to make sure everyone present has a positive experience. For better or worse, I am someone who notices and feels the personal and interpersonal dynamics in a room. I sense and absorb even the most subtle discomfort, frustration, anger, shame, and insecurity, alongside the more upbeat emotions. Importantly, I also I feel the need to step in and make things better, to prop everyone up. It’s exhausting. But MS reminds me of how absurd, and even egotistical, this is. In truth, I can’t possibly care for everyone. Neither can you.

It helps to check our automatic thoughts. More than once on Thanksgiving Day, as the busy kitchen buzzed with activity and conversation, I intentionally stepped back and watched, reminding myself that I didn’t have to hold the whole thing up. Even though I inevitably slipped back into hyper-responsibility mode, these moments of self-awareness impacted my behavior and the dynamic in the room.

It’s okay to say what you need

To take full responsibility for my own well-being, I need to speak honestly and act with integrity. This means asking for what I need, clearly and without apology. Historically, I have been terrible at this in my personal life, burying my own needs in the name of taking care of everyone else’s, even rejecting clear offers of help. “I’m good, I’ve got it,” I might say, while simultaneously feeling bitter and resentful for having to do it all myself. This lack of clarity isn’t fair to anyone. MS reminds me that I need to do better.

This year, when my guests asked me what they could bring, I took them at their word and made specific requests instead of assuring everyone that I had it covered. When my mother started banging around in the kitchen at 7 a.m. with her endearing but chaotic energy, asking for this and that pot and kitchen utensil so she could start cooking, I told her I needed to sit down and have a cup of coffee first. She would need to wait or find things herself. She was okay with that. Family dynamics can be entrenched and hard to change, but clear communication can set new ways of being into motion, one baby step at a time.

I still have a lot to learn, but I am making stuttering progress, learning to listen to my body and honor my needs while also caring for those I love, or at least trying. Undeniably, I experienced some post-Thanksgiving fatigue, exacerbated by my daughter’s early-morning hockey game the next day, requiring a 4:30 a.m. departure. I felt it in my body — the familiar leg weakness, vertigo, and brain cobwebs — and, completely uncharacteristically, I took a nap.

Breathe. Count to 10. Take a walk. These strategies have long been advised to help you pause and rethink your reaction when you’re seeing red and an inch away from exploding. Under normal circumstances — maybe a little stress at home or at work — those strategies can be useful. But you may find they’re less effective in the pressure cooker we’ve been living in since the pandemic began. What can you do to avoid reaching your boiling point?

For insight, I turned to psychologist Stuart Ablon, founder and director of Think:Kids in the department of psychiatry at Harvard-affiliated Massachusetts General Hospital. Ablon is an expert at defusing explosive behavior among kids and teens with severe developmental delays in problem solving, flexibility, and tolerance to frustration — the skills that keep us from melting down.

Pandemic stress blocks our coping abilities

Ablon says many adults are struggling with a lack of these skills right now — not because we haven’t developed them, but because pandemic stress is blocking them. “When we humans are chronically stressed, we lose access to the part of our brain that performs skills like flexibility and tolerance,” Ablon says.

Blocked skills can reduce our coping abilities to those of little children, like toddlers who scream when they don’t get their way.

Practice empathy

Ablon says it’s crucial to stay calm or “regulated” when you’re feeling mad or upset, so you can access the skills needed to maintain control. And the best way to remain calm, Ablon says, is by practicing empathy — trying to sense another person’s perspective or point of view.

“Empathy is the most powerful human regulator we have. It’s been proven to de-escalate people in the most challenging of prison settings, and it can also work on an airplane or in line at Starbucks,” Ablon says. “Think about it: when someone listens to you and tries to understand your point of view, it calms you. You can feel your heart rate drop.”

How does empathy help you?

Calming others is great, but how does being empathetic keep you from exploding? It has a domino effect.

• Trying to understand someone else's point of view may change your mind about how you want to react. It will also give you something important to do, which will keep you focused so you can remain calm.
• Being calm enables you to access coping skills like problem solving, flexibility, and tolerance to frustration.
• Accessing your coping skills strengthens your ability to keep your cool.
• Because you’re calm, you’ll keep someone else from exploding, which in turn helps you continue to stay calm.

Four steps to help you stop seeing red

To practice empathy, Ablon recommends the following steps.

• Adopt a mindset that people are doing the best they can. “We’re all trying our best to handle what the world is throwing at us, with the skills we’re able to access at that moment. None of us wants to be losing it,” Ablon says. “Think to yourself, ‘This person I’m interacting with isn’t giving me what I want, but this person is doing the best they can right now.’ If you can exude that, you will help regulate them. It’s incredibly contagious — the same way a parent who stays calm can soothe a crying baby, or a kindergarten teacher with supreme calmness can regulate a whole class.”
• Be curious, not furious. Ablon recommends asking questions without jumping to conclusions, so you can find out where people are coming from. What are their circumstances? What’s driven them to this moment? What do they need?
• Practice active listening. “One of the most powerful things you can do to regulate someone is to repeat back to them what you’re hearing from them in your own words. It makes them feel heard,” Ablon says. “So ask questions, and when you get information, reflect back what you’ve heard. It’s called active listening.”
• Offer reassurance. Remind the person you’re talking to that you’re trying to help. “Say, ‘I’m just trying to understand. I know you must have an important reason and I want to hear more. I’m not trying to get you upset. I want to work things out.’ That’s very calming and regulating,” Ablon says.

It may not be easy to remain empathetic in these challenging times. But the more you practice this skill, the more empathetic you’ll become. That can deliver significant results. “If you can stay calm and approach someone kindly and with understanding,” Ablon says, “it will head things off at the pass for both of you.”