10 Shocking Things about Narcolepsy that the Media Doesn’t MentionNarcolepsy isn’t the snoozefest we imagined. It’s a fascinating neurological disorder with aspects of dream sleep sneaking into daily life in odd ways like experiencing hallucinations and being paralyzed head-to-toe.
Surprised? I was too — when I was diagnosed 8 years ago in law school.
Julie Flygare, JD — founder of Project Sleep and author of “Wide Awake and Dreaming: A Memoir of Narcolepsy”
Hi! I’m Julie Flygare, a writer and yogi living with narcolepsy in Los Angeles. Here are the most shocking things you didn’t know about narcolepsy and the media doesn’t mention:
10.Narcolepsy is not a joke.
As a young law student at Boston College, I realized I was having mysterious health issues but — narcolepsy?! “Nooo, that’s just a joke about someone falling asleep standing… I don’t have that!”
Popular films like Rat Race, Deuce Bigalow: Male Gigolo and Moulin Rougefeature comical characters with “narcolepsy” falling asleep mid-sentence while standing. This is not what doctors are looking for to diagnose narcolepsy. Narcolepsy’s sleepiness is often much more invisible and pervasive, and that’s just ONE of five major symptoms. Yet, because of the comedic portrayals, people often laugh when they learn I have narcolepsy, even though I have a serious neurological disorder like epilepsy or Parkinson’s disease.
9.People with narcolepsy do NOT sleep all the time.
Individuals with narcolepsy may fight sleepiness during the day but be unable to sleep at night. “Disrupted nighttime sleep” is a major symptom of narcolepsy. Check out this amazing graphic by Falling Asleep.
8.Emotions may cause scary paralysis.
Everyday emotions like laughter, surprise or annoyance may cause scary temporary muscle paralysis — jerky knee-buckling, jaw slackening(talking like you’re drunk), head bobbing or collapsing to the ground unable to move for 30 seconds to a minute. This is cataplexy, a very serious symptom affecting 70% of people with narcolepsy.
7.Napping is not a luxury.
People with narcolepsy are not “lucky” to take naps, they are experiencing extreme neurological sensations. Napping is often inevitable, unwelcome and difficult to plan for in most school or work settings. I struggle with “nap shame” — feeling embarrassed or weak for napping, even though it’s an essential part of my treatment to be able to work full-time and exercise daily.
6.Narcolepsy involves terrifying hallucinations.
Ever woken up but been unable to move your body? This is sleep paralysis, which happens to 1/3rd of all people, but happens more frequently in narcolepsy. Sometimes accompanied by visual, auditory or tactile hallucinations as REAL as reality. This redefines “living a nightmare”.
5.Doctors don’t know narcolepsy.
According to a recent study, 91% of primary care doctors and 58% of sleep specialists are NOT COMFORTABLE diagnosing narcolepsy. Only 22% of sleep specialists could name all five major symptoms. As a result, people go undiagnosed for 3 to 25 years. Misdiagnoses include epilepsy, depression, and schizophrenia.
4.Sleepiness doesn’t always LOOK sleepy.
Narcolepsy’s sleepiness may manifest as hyperactivity, irritability, moodiness, attention deficits, fogginess, or memory problems. These behavioral and cognitive changes are very real, but not what we think of “sleepiness” — i.e. droopy eyelids, yawning or nodding off.
3.Neurological disorder without a cure.
The leading theory is that narcolepsy may be an autoimmune disorder caused by the loss of cells in the brain (called hypocretin or orexin) which help regulate waking, sleeping and dreaming. There is currently NO cure or replacement for the lost neurons. Patients manage with multiple medications and diligent attention to their health and schedules. No two cases of narcolepsy are exactly alike — what works for one patient may not work for another.
2.Sleepiness is NOT laziness.
The sleepiness of narcolepsy is neurological and uncontrollable and is not a sign of laziness or lack of will power. Imagine staying awake for 2–3 days straight. That’s how a person with narcolepsy feels daily. If I felt like being lazy, I would watch TV or play games. Sleep is not that fun, I don’t even remember it.
1.You know someone with narcolepsy.
Narcolepsy affects 1 in every 2,000 people — 200,000 Americans and 3 million people worldwide, including many children. Narcolepsy is invisible, we may look “healthy” on the outside while fighting internally or behind closed doors. Misperceptions cause many to keep it private. Yet, people with narcolepsy are your friends, neighbors and colleagues.
Loneliness obviously has a powerful role in mental health, triggering symptoms of anxiety and depression when feelings of social isolation take a toll on our emotional wellbeing. The need to surround yourself with loved ones and a fulfilling circle of friends in order to maintain a happy, positive outlook on life is self-explanatory, but what is not often discussed are the potentially damaging effects of loneliness on physical health, as well.
One study published in the British Medical Journal found that feelings of isolation and loneliness in seniors between the ages of 65 and 86 led to a 64 percent increase in the risk of developing dementia, an extraordinary spike in odds highlighting the importance of fostering meaningful relationships at all stages of life. An additional study published in JAMA Internal Medicine reported that seniors experiencing strong feelings of loneliness felt debilitated in their everyday lives, resulting in trouble completing routine activities like bathing, getting dressed, walking and climbing stairs.
A 2013 study from the AARP reports that 40 percent of adults report frequent overwhelming sensations of loneliness, a number that has doubled from 20 percent in the 1980s. “Social isolation is a growing epidemic — one that’s increasingly recognized as having dire physical, mental and emotional consequences,” Dr. Dhruv Khullar, physician at NewYork-Presbyterian Hospital and a researcher at the Weill Cornell Department of Healthcare Policy and Research, wrote for The New York Times last year.
Contrary to popular belief, feeling lonely isn’t always a result of social isolation. Sometimes, it can be a physical symptom beyond our control. Researchers at Brigham Young University published a literature review this year detailing the complex relationship between loneliness and cardiovascular issues like coronary heart disease and stroke. They determined that social isolation increases the risk of cardiovascular disease and that the government and the medical community need to do more about it. “Given projected increases in levels of social isolation and loneliness in Europe and North America, medical science needs to squarely address the ramifications for physical health,” concluded the analysis.
New research is telling is that preventing loneliness is a critical component to staying healthy, much like eating right, exercising, and steering clear of vices like tobacco, drugs, and too much alcohol. The silver lining among all this rather depressing information regarding loneliness and physical health is that making time to be social isn’t just a weekend and after-work indulgence—it’s an essential investment in our overall health.
A new study published in Biological Psychology sheds light on the neurobiological processes that link stress to cravings for cocaine.
“Despite intensive research efforts, drug addiction persists as one of society’s most significant health-related issues, and treatment options are limited,” explained study author John R. Mantsch, the chair of the Biomedical Sciences Department at Marquette University.
“The development of interventions aimed at relapse prevention is particularly important for improved outcomes in patients with substance use disorders. Much evidence suggests that stress is a critical contributor to drug use and relapse. While it is clear that there is a relationship between stress and drug seeking, the exact nature of this relationship and the underlying mechanisms are unclear.”
“The goals of this study were to develop a new model for studying the contribution of stress to drug seeking and to examine the mechanisms in the prefrontal cortex through which stressful stimuli promote drug seeking,” Mantsch said.
Previous research has established a link between stress and drug cravings, and some studies indicate that stress can act as trigger for cravings.
The findings from new study, which was conducted on rats, suggests that stress can set the stage for — but not necessarily directly trigger — cocaine-seeking behavior. Stress appears to set the stage for cravings through its actions on the medial prefrontal cortex, an area of the brain that plays a major role in executive functions such as planning.
“Clinical reports suggest that, rather than directly driving cocaine use, stress may create a biological context within which other triggers for drug use become more potent,” Mantsch told PsyPost.
“In this paper, we use a preclinical rodent model to demonstrate that, during periods of stress, elevated glucocorticoids mobilize endocannabinoid signaling in the prelimbic prefrontal cortex to attenuate inhibitory transmission and promote cocaine seeking behavior.”
“Our findings establish a novel mechanism through which stress can promote susceptibility to relapse in individuals with substance use disorder and therefore may reveal opportunities for new and more effective treatment strategies aimed at relapse prevention,” Mantsch explained.
But there is still much that scientists don’t understand about the link between stress and drug abuse.
“There are several important questions yet to be addressed,” Mantsch told PsyPost. “First, the time-course of stress effects is suggestive of a glucocorticoid mechanism that this not mediated by the canonical glucocorticoid receptor, which typically functions by regulating gene transcription, resulting in effects that take time to develop.”
“Secondly, the output pathway from the prefrontal cortex that is regulated by stress and mediates drug seeking needs to be confirmed. Third, it is unclear if the effects of endocannabinoids on drug seeking can be reproduced by cannabis exposure. Such an observation could suggest that acute cannabis use can promote relapse.”
“However, it should be noted that in contrast to cannabis effects which will be exerted throughout the brain, the effects of stress on endocannabinoids are likely not uniform throughout the brain,” Mantsch said. “Moreover, THC (the primarily active cannabinoid constituent in cannabis products) and endocannabinoids have different actions at receptors that may predict distinct effects on cortical signaling and behavior.”
“Finally, we are in the process of determining if there are sex differences in the effects of stress and glucocorticoids on relapse susceptibility.”
The study, “Stress Promotes Drug Seeking Through Glucocorticoid-Dependent Endocannabinoid Mobilization in the Prelimbic Cortex“, was co-authored by Jayme R. McReynolds, Elizabeth M. Doncheck, Yan Lib, Oliver Vranjkovic, Evan N.Graf, Daisuke Ogasawara, Benjamin F.Cravatt, David A.Baker, Qing-Song Liu, and Cecilia J.Hillard.
If the embarrassment of talking to your doctor about impotence has kept you from getting a prescription for Viagra, you may be in luck—if you live in the United Kingdom. Regulators there have decided the little blue pill can be sold over the counter, without a prescription, to men 18 and older. Pfizer, the drug’s manufacturer, hopes to have 50mg tablets on shelves by the spring.
The UK regulatory body that made the change, the Medicines and Healthcare products Regulatory Agency (MHRA), said it did so in part to discourage men from buying pills from unregulated online merchants. On the site for Viagra, Pfizer warns that it’s “one of the most counterfeited drugs in the world,” which seems plausible to anyone who’s ever waded through the quagmire of boner pill solicitations in their spam folder.
Fake viagra can contain harmful ingredients—Pfizer says it’s found pills containing blue printer ink, amphetamines (you know, speed), and metronidazole, an antibiotic that can cause an allergic reaction, diarrhea, or vomiting instead of making you tumescent.
"Erectile dysfunction can be a debilitating condition,” Mick Foy, MHRA's group manager in vigilance and risk management of medicines, told the BBC, “so it's important men feel they have fast access to quality and legitimate care, and do not feel they need to turn to counterfeit online supplies which could have potentially serious side-effects.” (Sildenafil, the active ingredient in Viagra, is already available free of charge through the UK’s National Health Service.)
Of course, not every bootleg blue pill contains printer ink, speed, and drywall, and it’s worth drawing a distinction between dangerous fakes and knock-offs that are more threatening to Big Pharma’s profits than they are to public health. (Reuters reports that sales of Viagra have declined since 2012 as Pfizer's patents expired.) The fake drug industry is the shadow side of the above-ground, regulated industry, and by many accounts it’s becoming increasing difficult to police. On any one of the tens of thousands of fly-by-night pharmacy websites, a counterfeit (but perfectly safe and effective) Viagra might be indistinguishable from one that’s potentially harmful. As an eager consumer, you can’t know.
The MHRA wants to steer men away from such sites and toward their neighborhood pharmacist, who will decide whether Viagra is appropriate for each patient who inquires. They can offer advice on whether and how it should be used, and nudge people toward their doctor when necessary. People with liver failure, severe kidney failure, or who have severe heart disease or are at a high risk of cardiovascular disease, or take certain medicines that could interact with Viagra shouldn’t take the blue pull, and it’ll be up to pharmacists to mediate with patients.
That has some pharmacists concerned. Before making its decision, the MHRA had 47 responses to its public comment period; 33 supported making Viagra available over the counter, while one was “unsure.” Among the 13 who didn’t support the plan were eight pharmacists, some of whom were concerned about abuse and misuse of the drug, or that patients might withhold health information in order to get it. The MHRA decided the benefits outweighed those risks.
All of which is well and good, but also academic if you’re living outside the UK, in places where Viagra still requires a prescription. Tonic reached out to Pfizer to see if the company plans to push for over-the-counter status in other countries. The response was not exactly illuminating. “While we do not have information to share on specific Rx to OTC switch programs in the United States, generally we consider prescription drugs—both within the Pfizer portfolio and outside it—for potential switch to non-prescription status,” a Pfizer spokesperson said in an emailed statement. “Our objective is to provide consumers with significantly greater access to medicines with well-established efficacy and safety profiles without a prescription.” And, again, Viagra sales are down globally.
So if you’re a guy in the US waiting for Viagra to be available without a prescription, seems like there’s a sliver of hope. But in the meantime, why not trust your doctor?
A research project that began 20 years ago with an interest in how lithium treats mood disorders has yielded insights into the progression of blood cancers such as leukemia. The research, which centers on a protein called GSK-3, will be published in the Nov. 3 issue of the Journal of Biological Chemistry.
Lithium is considered a highly effective treatment for bipolar disorder and other mood disorders, but it still works in only a fraction of patients and has a number of side effects. Furthermore, its mechanism of action is poorly understood, hampering efforts to improve on it.
In 1996, Peter Klein of the University of Pennsylvania discovered that one of lithium's biological activities was inhibiting GSK-3, an enzyme that modifies other proteins by attaching phosphate molecules, a process called phosphorylation. Lithium's effect on GSK-3 affected the development of animal cells, but it is still unknown what connection, if any, this has to psychiatric disease.
Since then, Klein -- now a professor of medicine at the University of Pennsylvania -- has been investigating many different aspects of GSK-3 activity. "In this paper, we were trying to find out what proteins in the cell are affected by GSK-3 inhibition," Klein said. "We compared cells with GSK-3 to cells completely lacking GSK-3 to ask how other proteins changed."
"Mood disorders are so multifaceted in terms of the pathways and pathologies involved; it's really difficult to pin down a specific pathway," said Mansi Shinde, a former graduate student in Klein's research group who led the new study. "We said: Let's look at what GSK-3 does, and that would maybe lead us toward what lithium does."
The research team used mass spectrometry to compare phosphorylation of proteins from mouse embryonic stem cells with fully functioning GSK-3 to cells in which the gene encoding GSK-3 had been deleted. The resulting massive dataset is called a phosphoproteome -- a comprehensive catalog of proteins that are phosphorylated by GSK-3. Analyzing the data yielded some surprising findings.
Conventional wisdom had suggested that GSK-3 phosphorylates proteins that contain a specific amino acid sequence, but the new phosphoproteome showed that the majority of proteins whose phosphorylation depended on GSK-3 did not contain this sequence. Notably, the phosphorylated proteins included a group called splicing factors, which splice together different sections of messenger RNA, changing the proteins that they encode. Absence of GSK-3 changed the splicing patterns of more than 200 messenger RNAs.
The finding that GSK-3 could affect RNA splicing pointed to an unexpected connection: leukemia. Several factors newly discovered to be phosphorylated by GSK-3 are also known to be mutated in acute myeloid leukemia, a condition in which aberrant splicing causes uncontrolled white blood cell proliferation. This observation could also explain why one of the side effects of taking lithium is increased white blood cell count.
"The effect on the splicing factors and other mutations associated with leukemia was completely surprising to me," Klein said. The group is therefore now pursuing investigations into how GSK-3 affects the growth of healthy and leukemic blood cells.
Shinde and Klein are not yet sure whether GSK-3's effect on RNA splicing explains its role in mood disorders. The effect of GSK-3 on messenger RNA in neuronal cells, with or without lithium, would need to be examined to determine this. The study underlines how investigations into the basic biological function of a drug target can lead in unexpected directions. "[The GSK-3 phosphoproteome] is a really large data set," Shinde said. "It's a resource for the field." "The relevance to leukemia could be direct and something worthy of immediate study," Klein said. "The role in psychiatric disorders is a major interest of the work, but the impact would be down the road, not immediate."
People who die from opioid overdoses are significantly more likely to suffer from chronic pain and depression, according to a new study that highlights the risk of combining opioid pain relievers with benzodiazepines, a class of anti-anxiety medication.
Researchers at Columbia University Medical Center analyzed over 13,000 overdose deaths among Medicaid patients and found that over 61 percent had been diagnosed with back pain, headaches or some other chronic pain condition. Many also suffered from depression, anxiety, bipolar disorder, schizophrenia and other mental health problems.
Significantly, nearly half of those with chronic pain (49%) filled a prescription for opioid pain medication during the last 30 days of their lives, and just over half (52%) filled a prescription for benzodiazepines. Prescriptions for anti-depressants, anti-psychotics and mood stabilizers were also common.
“This medication combination is known to increase the risk of respiratory depression, which is the unusually slow and shallow breathing that is the primary cause of death in most fatal opioid overdoses," said Mark Olfson, MD, a professor of psychiatry at Columbia and lead investigator of the study.
“Most persons with opioid-related fatalities were diagnosed with one or more chronic pain condition in the last year of life. As compared to people with opioid-related deaths without diagnosed chronic pain conditions, the decedents with chronic pain diagnoses were more likely to have also received substance use and other mental health disorder diagnoses. They were also more likely to have filled prescriptions for opioids, benzodiazepines, and other psychotropic medications and to have had a nonfatal drug overdose.”
The Columbia study included opioid overdoses linked to both pain medication and illegal opioids such as heroin, but was limited to Medicaid patients who died between 2001 and 2007. Since that time, opioid prescribing has declined, while illegal opioids and counterfeit medication have become increasingly available on the black market.
Public health officials have only recently started warning about the risks of combining opioids with benzodiazepines, and some insurers now refuse to pay for the medications when they are prescribed jointly.
A recent study of overdose deaths in Florida found that benzodiazepines such as Xanax and Valium killed nearly twice as many Floridians in 2016 as oxycodone. Another study in Pennsylvania also found that overdose deaths involving benzodiazepines exceeded those from opioid painkillers.
The Columbia study was published online in the American Journal of Psychiatry. The study was funded by the Agency for Healthcare Research and Quality, the National Institute on Drug Abuse, and the New York Psychiatric Institute.
Pain News Network
As pretty as they are, real Christmas trees can make you wheeze and sneeze. It's likely not the tree itself that triggers allergies but the microscopic mold spores that can harbor in its branches. If you can't resist buying a live tree despite winter allergies, take it home a week before you plan to decorate it and leave it in a garage or an enclosed porch. Then give it a good shake to try to get rid of any spores.
Hallucinogen-persisting perception disorder, or HPPD, causes a person to keep reliving the visual element of an experience caused by hallucinogenic drugs. But what do the flashbacks in HPPD feel like, what causes them, and how might they be treated?A person with HPPD has frequent visual disturbances. They do not relive any other aspects of a drug trip, only the part that involved vision. The way the flashbacks in HPPD affect a person's vision can be frustrating and may cause anxiety.
This article explores the symptoms and causes of HPPD. It also discusses how a person experiencing HPPD can manage their condition.
Contents of this article:
What is HPPD?
A person with HPPD has frequent visual disturbances, which may cause anxiety.
Unlike the immersive flashbacks that some people have after taking drugs, HPPD flashbacks are purely visual. This means that a person with HPPD just has visual disturbances, such as seeing blurry patterns, size distortion, and bright circles.
These individuals do not relive any other aspects of the feeling of being on drugs.
HPPD flashbacks are not usually pleasurable, and they can become annoying if they occur frequently or last for a long time. The flashbacks may also cause anxiety.
HPPD does not cause people to have full hallucinations or delusions.
Someone experiencing HPPD is usually aware that it is a visual disturbance and can determine what is real, as a 2012 study explains. This qualifies HPPD visual disturbances as pseudohallucinations.
HPPD can affect the way a person perceives visual input.
According to a 2016 review, there are two types of the condition:
The visual disturbances a person with HPPD may experience include:
Experiencing the symptoms of HPPD can be distressing.
It is usually apparent to a person experiencing HPPD that they are not seeing things in the way they used to. This can be unnerving and may cause anxiety.
Some people with HPPD experience visual disturbances alongside other symptoms. These may include:
Depersonalization disorder is a mental health condition where a person may feel like:
Researchers do not fully understand how these conditions relate to HPPD, but many report that they experience them alongside visual disturbances.
Causes and risk factors
A person with HPPD may experience visual disturbances, such as bright circles and blurry patterns.Researchers believe that people are at risk of experiencing HPPD if they take hallucinogenic drugs recreationally. However, they do not yet understand the type or frequency of drug use that causes it.
According to a 2003 study, HPPD is reported most commonly after illicit use of LSD. There are also reports of people who have only used hallucinogens once or twice experiencing similar symptoms.
HPPD is not caused by brain damage or a mental disorder. It is also not the result of current intoxication or by an amount of a drug staying in a person's system. Nor is HPPD caused by a "bad trip." These are all common beliefs about HPPD that are not true.
More research is needed to understand the changes in the brain that cause HPPD symptoms.
Disclosing any past drug use will enable the doctor to give an accurate diagnosis.
If a person is experiencing visual disturbances, they should speak to their doctor.
There are some other conditions that could be the cause. As such, the doctor may ask a number of questions to reach a diagnosis.
It is important to be open and honest about any past drug use, to help the doctor reach the correct diagnosis.
A person's relationship with a doctor is confidential. The doctor is there to provide the best course of treatment and not judge lifestyle choices.
Most doctors do have an awareness of HPPD as a condition. If a doctor is not sympathetic to a person's symptoms or does not want to explore HPPD as a diagnosis, then it is a good idea to speak to a different doctor.
Management and treatment
There is no one recommended course of treatment for HPPD. However, there are two drugs that initial research suggests may be effective. These are:
The effectiveness of drug therapy can vary from person to person. Every person who has visual disturbances as a result of HPPD experiences them slightly differently.
The 2012 study also recommends the following to help manage symptoms:
HPPD symptoms may cause anxiety. In turn, stress and anxiety may make HPPD symptoms worse. Trying mindfulness, yoga, or meditation may help to reduce stress and anxiety.
Most people who experience HPPD only have symptoms for a short time after drug use. However, there are examples of people experiencing HPPD symptoms over a number of years.
A doctor can help provide advice on managing HPPD symptoms and may prescribe a course of drug therapy to help.
As researchers come to understand more about the condition, a more extensive range of treatments may become available.
Source -Medical News Today
“Abusing Sedatives To Get Skinny.” “The Women Sleeping Their Lives Away To Lose Weight.” Recent headlines like these about the “Sleeping Beauty” diet (taking sedatives to avoid eating, a.k.a. narcorexia) seem designed to shock. And shock, they do. But the behavior is not new.
I dabbled in it a decade ago when I lost a boyfriend to a motorcycle crash and was downsized out of a job that I adored. During that trying time, the only thing I felt I could control was my weight. So I began working out two hours a day and ate no more than 1,000 calories. Since I often hit that piddly number by 4 p.m., I’d pop a sedative. Sleep was the sole way to escape my unbearable hunger.
Ironically, doing that for nearly four months slowed my metabolism while fueling my depression. What’s insidious about eating disorders is that they often begin as a disciplined strategy to improve your body and life, but once they take over, they make both worse. “You’re essentially shutting off your life to not eat,” says eating disorders expert Rachel Salk, Ph.D. “That’s how powerful and destructive these distorted thoughts can be.”
Once I realized that the weight-loss plan I’d started so I could feel in charge of my life was crippling it, I sought help. Headlines like the ones above do anything but help, and in fact seem to exist to feed disordered ideas to pro-anorexia blogs.
by David Hill
UNIVERSITY AT BUFFALO
The anxiety many men experience after being diagnosed with prostate cancer may lead them to choose potentially unnecessary treatment options, researchers report.
“Emotional distress may motivate men with low-risk prostate cancer to choose more aggressive treatment, such as choosing surgery over active surveillance,” says the study’s lead author, Heather Orom, associate professor of community health and health behavior in the University at Buffalo’s School of Public Health and Health Professions.
“It underscores what we have been pushing a long time for, which is, ‘Let’s make this decision as informed and supported as possible.’ If distress early on is influencing treatment choice, then maybe we help men by providing clearer information about prognosis and strategies for dealing with anxiety. We hope this will help improve the treatment decision making process and ultimately, the patient’s quality of life,” adds Orom.
Researchers measured participants’ emotional distress with the Distress Thermometer, an 11-point scale ranging from 0 (no distress) to 10 (extreme distress). The men were assessed after diagnosis and again as soon as they had made their treatment decision. The majority of study participants had either low- or intermediate-risk disease, and were more likely to have been treated with surgery, followed by radiation and active surveillance.The study involved 1,531 men with newly diagnosed, clinically localized prostate cancer, meaning the disease hadn’t spread to other parts of the body.
“Men’s level of emotional distress shortly after diagnosis predicted greater likelihood of choosing surgery over active surveillance,” the researchers report. “Importantly, this was true among men with low-risk disease, for whom active surveillance may be a clinically viable option and side effects of surgery might be avoided.”
While prostate cancer is a major disease in the US, it is not a death sentence, according to the American Cancer Society, which estimates there are nearly 3 million prostate cancer survivors alive today.
However, overtreatment is a concern, and surgery and radiation therapy have side effects that include erectile dysfunction and incontinence, which, for the majority of men diagnosed with low-risk prostate cancer, can be avoided by instead choosing active surveillance to monitor the cancer and considering treatment if the disease progresses.
“There’s an interest in driving the decision-making experience to prevent overtreatment and ensure that men have full information about all the side effects so they can make a choice that’s preference and value driven,” Orom says. “We don’t want men to make a decision that they’ll regret later on.”
“The goal of most physicians treating men with prostate cancer is to help their patients and family members through a difficult process and help their patients receive appropriate treatment,” says coauthor Willie Underwood, an associate professor in Roswell Park Cancer Institute’s urology department.
“To do so, it is helpful for physicians to better understand what is motivating men’s decisions and to address negative motivators such as emotional distress to prevent men from receiving a treatment that they don’t need or will later regret,” Underwood adds.
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