Is the Medical Profession Failing Men with Prostate Cancer?

Diagnosed at age 57, I was shocked when, in 2011, the U.S. Preventive Services Task Force recommended against routinely screening for prostate cancer in all men.

Even more shocking is how many doctors stopped screening for prostate cancer. A 2016 study published in JAMA Internal Medicine found that prostate-specific antigen (PSA) testing — a blood test used to screen for prostate cancer — decreased from 2010 to 2012. Testing fell from about 36 percent to 16 percent among primary care physician visits and from about 39 percent to 35 percent among urologist visits.

When you read between the lines, only 16 percent of primary care physicians routinely screen for prostate cancer. This leaves 84 percent of men going to their primary doctor without prostate cancer screening.

The odds for screening aren't much better when seeing a urologist. Approximately 35 percent of urologists screen for prostate cancer. This leaves 65 percent of men who visit a urologist untested for prostate cancer.

Here's the prostate cancer trend among younger men:

The number of younger men diagnosed with prostate cancer has increased nearly sixfold in the last 20 years, and the disease is more likely to be aggressive in young men, according to a 2014 analysis by researchers at the University of Michigan's Comprehensive Cancer Center.

Here's the trend for older men:

According to an article in the Cornell Chronicle, investigators examined data from the Surveillance, Epidemiology and End Results Program, a National Cancer Institute database that tracks cancer incidence rates. They found that the decline in PSA screening has significantly altered the way prostate cancer is now seen: 12 percent of men over 75 were diagnosed with metastatic prostate cancer in 2013, compared with 7.8 percent in 2011. And the proportion of men diagnosed with aggressive cancer increased from 69 percent to 72 percent during the same period.

In other words, the number of older men presenting with aggressive prostate cancer has increased.

I understand the good intentions behind the effort to save men from choosing unnecessary and aggressive prostate cancer treatment. No one wants to ruin the quality of a man's life if aggressive treatment of prostate cancer is unnecessary.

It's the underlying assumption I teake issue with. Men are fully capable of making the correct treatment decision based on their diagnosis when someone takes the time to address their previous experiences with cancer and the fear that arises when you hear the dreaded words: “You have prostate cancer."

Upon receiving the news that I had cancer, three words came to mind: pain, suffering, and death. I wasn't capable at the time of diagnosis to make a rational treatment decision. I think that's true for the majority of those who receive a diagnosis of cancer.

Men need time to decompress. They need time to sort out their personal experiences with friends and family they've known with cancer.

Then, they need time to receive their own specific diagnosis without the filters of fear and their past experiences with folks who've died from any form of cancer.

When information, rather than fear, drives a treatment decision, you get more appropriate treatment decisions.

The proof of this is the increase in the number of men choosing active surveillance.

The New York Times reported that 10-15 percent of early-stage prostate cancer patients were treated by active surveillance several years ago. Now, national data from three independent sources show that 40-50 percent of them are making that choice.

In other words, the data suggest that men are capable of making a treatment decision based on their diagnosis, rather than their fear.

It's always heartbreaking when I hear from a son or daughter who's lost their father, or from a partner who's lost the love of their life because they were never screened for prostate cancer.

It’s possible that your primary physician or urologist is among the group of physicians no longer screening for prostate cancer.

I'm not a doctor, which means I don't give medical advice. I'm a prostate cancer patient advocate with strong opinions about the need to resume prostate cancer screening.

Here are my opinions:

•Familiarize yourself with the various tests available to detect prostate cancer. A new urine test may replace the need for a prostate biopsy.

•If prostate cancer runs in your family, I suggest getting your first screening a decade earlier than recommended, at age 30. You are at a higher risk for prostate cancer.

•If you are African-American, get your first screening at age 30. You are at a higher risk for prostate cancer.

•All men should have at least one screening by the time you reach 40.

Men, given where we are with the politics and policies with prostate cancer screening, your life may depend on you taking control of this piece of your medical care.

For your sake and for the sake of those who love you, you can't assume that you don't have prostate cancer because your physician didn't screen or test you.

Note: This article appeared in Prostate Cancer News Today 

Rick Redner and his wife Brenda Redner wrote two award winning books. The first:

I Left My Prostate in San Francisco-Where's Yours?

provides men and couples with information and support before, during and after prostate surgery.

Their second book was written for couples living with erectile dysfunction. After living with erectile dysfunction for four years, Rick chose penile implant surgery. The couple share how implant surgery changed their lives and relationship.

The title of their second award winning  book is:

Everything You Never Wanted to Know About Erectile Dysfunction and Penile Implants.

20 Things Men with Prostate Cancer Wish Healthy Friends, Family Knew

I was diagnosed with prostate cancer when I was 57. My PSA (prostate-specific antigen) remains undetectable seven years after my surgery.

I expected there'd come a time when I'd give up my cancer survivor status. I thought I'd return to thinking about myself in the same way I thought about myself prior to my diagnosis. That never happened, and I don't believe it ever will. In other words, once a cancer survivor, always a cancer survivor.

It doesn't matter whether you're in remission for 10 months or 10 years. I suspect most of us living with cancer live with the possibility of a reoccurrence.

I realized I'll never go back to my pre-cancer days or identity. I'll always be a cancer survivor. I think all cancer survivors have certain sensitivites we wish our healthly friends and family knew.

I asked several men with prostate cancer what they wished their friends and family knew about living with cancer. Some of their responses are listed below. I added a few of my own.

1. Looks are deceiving. You can't judge how well I'm doing based on my physical appearance.

2. Living with cancer is highly stressful before, during, and after treatment.

3. Please don't share stories about miracle cures.

4. I don't want to hear stories about people you know who died from prostate or any other form of cancer.

5. Don't feel pressured to say something wise, give advice, or cheer me up.

6. If you're seriously interested in how I'm doing, listen rather than talk.

7. Before, during, and after treatment, physical, emotional, and relational challenges occur.

8. There's no such thing as a “good cancer."

9. Cancer isn't contagious. Using a cup, fork, or spoon at my home won't give you cancer.

10. If treatment has affected my erectile functioning, I probably feel awful about myself as a man and as a partner.

11. Sometimes I feel anger, jealousy, or hostility toward folks who are healthy.

12. I'm facing financial pressures. Missed work and high deductibles and co-pays changed my economic circumstances.

13. I may feel so discouraged or depressed that I'm sorry I survived my treatment.

14. I need breaks from thinking or talking about cancer.

15. The effects of treatment cause quality-of-life issues that are difficult to talk about.

16. My values and priorities may remain unchanged or undergo a radical transformation.

17. My relationship with my partner is changing. We don't know whether coping with cancer will bring us closer or tear us apart.

18. Comfort clichés like "You'll beat this" or "Think positive" can permanently damage our relationship.

19. Don't judge me if coping with cancer challenges my faith or the goodness of God.

20. Waiting for test results is highly stressful, even if I've been in remission for years.

After reading through this list, you may wonder what you can do to help your partner, family member, or friend cope with cancer.

Here are a few of my suggestions:

• Before you say or do anything, give up on the notion that it's your job to say or do something to make it easier to cope with cancer.

• Give the gift of focused listening. This means listening to things that are uncomfortable or difficult to hear without changing the subject or fixing a problem.

• Share some non-cancer-related time together. When possible, ask to go out together for a meal, a cup of coffee, a movie, or a walk. Any activity you can enjoy together is a valued gift.

• If you feel called to pray, rather than say, "I'll pray for you," ask if there's something specific you can pray for.

• Laughter is great medicine. Finds ways to share laughter. Watching a comedy together is one way to laugh together.• Give specific rather than general offers of help.

* Rather than say, "Call me if you need anything," say, "Is it OK if I bring a meal over tonight? What would you like?"

If you have other suggestions, please share them.

Note: This article appeared in Prostate Cancer News Today 

Rick Redner and his wife Brenda Redner wrote two award winning books. The first:

I Left My Prostate in San Francisco-Where's Yours?

provides men and couples with information and support before, during and after prostate surgery.

Their second book was written for couples living with!erectile dysfunction. After living with erectile dysfunction for four years, Rick chose penile implant surgery. The couple share how implant surgery changed their lives and relationship.

The title of their book is:

Everything You Never Wanted to Know About Erectile Dysfunction and Penile Implants.

7 Things to Do When the Misery of Cancer Won't End

When background music is playing softly, it's possible to forget the music is continually playing. When it’s blaring, the music never fades into the background, and it’s intrusive all the time.

You have a serious problem when your cancer-related symptoms are like blaring background music. Your pain or quality-of-life issues make life miserable every minute of every day.

Here's a partial list of issues that cause unending misery in the life of someone with cancer:

• Chronic, ever-present pain
• Fatigue
• Hot flashes
• Bladder or bowel issues
• Sleeplessness
• Nausea or vomiting
• Poor or no appetite
• Debilitating weakness

There are two types of relief to seek in the face of unending misery. The first is physical relief, and the second is psychological relief.

The three crucial physical issues to address are:

1. Pain control 

According to the Mayo Clinic, pain relief for cancer patients is possible. Pain relief does not necessarily mean you are pain-free. It means your pain may move from intolerable to tolerable. Make sure to discuss pain management with your physician. Ask for a referral if your pain goes unrelieved.

2. Nutrition 

Adequate nutrition is essential for cancer patients. If treatment affected your appetite, ask for a consultation with a dietician. If possible, ask for a dietician with oncology certification.

3. Sleep 

There are so many reasons why sleep becomes impossible. Anxiety before surgery, coming home with a catheter, pain, and a host of other reasons. "A good night's sleep may be a potent weapon against cancer," the Daily Mail reports, citing Professor David Spiegel from Stanford University. It's important to discuss any problems with sleep with your doctor. I asked for prescription medication to help me sleep a week before my prostate surgery and the two weeks of living with a catheter. I'm glad I did because I slept very well.

Once you've addressed pain control, nutrition, and sleep, you can move on to the psychological and relational issues that are important to address in the face of chronic misery.

Those areas are:

4. Environmental comfort

Knowing how to change your environment is essential. For example, I'm a stomach sleeper, which isn't possible when I have a catheter. In addition to medication for sleep, I spent two comfortable weeks sleeping through the night on a La-Z-Boy chair. Once my catheter was pulled, I went back to sleeping in my bed.

My three-hour drive home from the hospital was extremely painful. I don't remember how long I ate my meals with my family standing up because I was too sore to sit in a chair. I spent many hours in unnecessary pain because no one told me about donut cushions.

What you don't know can unnecessarily hurt you. It's important to adjust your environment to accommodate your physical issues brought about by cancer or your treatment.

5. Entertainment and fun 

Taking breaks from thinking and feeling the side effects of cancer or your treatment is vital to your mental and physical health. According to CancerToday, "In September 2011, a study published online in the Proceedings of the Royal Society B found that laughing increased patients’ pain thresholds, probably due to increased production of endorphins — hormones in the body that relieve pain."

What makes you laugh? If watching comedies, telling jokes, reading jokes, or a humorous friend tickles your funny bone, make sure you get a daily dose of laughter.

Pets are an enormous source of comfort. In The New York Times, a cancer patient wrote this about her experience with her dog: "I’m giddy these days since Oscar came into my life. Caring for a pet is a welcome distraction from the day-to-day reality of being a cancer patient." Whether it's a dog, cat, bird, or other animal, pets serve as a welcome distraction.

If you are well enough to continue with or develop new hobbies, now is a good time to give these activities a high priority. I wrote a book during my recovery from prostate surgery. My dog spent hours on my lap as I wrote.

If you're an extrovert and gain energy in the company of other people, arrange for visitation even if those visits are short.

6. Embrace spirituality 

The best article I've read about faith and cancer was written by John Piper before his prostate cancer surgery. The title gives an important spiritual message: "Don't Waste Your Cancer." (The writer has a Christian perspective.)

7. Take good care of and repair your relationships

Cancer is a reminder to live differently. It’s a time to forgive and repair broken relationships. It’s a time to tell your family and friends you love and appreciate them.

When you intentionally plan to take care of your self physically, emotionally, spiritually, and relationally, you’ll get welcome relief from unending cancer-related misery.

Note: This article appeared in Prostate Cancer News Today 

Rick Redner and his wife Brenda Redner wrote two award winning books. The first:

I Left My Prostate in San Francisco-Where's Yours?

provides men and couples with information and support before, during and after prostate surgery.

Their second book was written for couples living with!erectile dysfunction. After living with erectile dysfunction for four years, Rick chose penile implant surgery. The couple share how implant surgery changed their lives and relationship.

The title of their book is:

Everything You Never Wanted to Know About Erectile Dysfunction and Penile Implants.

 

 

Recurrence Anxiety Strikes Unexpectedly

The fear of recurrence is on the mind of every cancer survivor. For some, it's an overwhelming fear experienced every day. I'm in the group of men who tucks the fears away. I experience recurrence anxiety once a year, when it's time for my annual PSA check.

This week, recurrence anxiety returned unexpectedly and with a vengeance. I woke up one morning with severe back pain. Because I did not injure my back lifting anything heavy, my first thought was this could be a symptom of the return of prostate cancer.

The National Health Service says "[s]ymptoms that the [prostate] cancer may have spread include bone and back pain, a loss of appetite, pain in the testicles and unexplained weight loss."

Even though I had prostate surgery and the cancer was confined to my prostate, according to an article on Prostate.net, "Overall, a man who has undergone prostatectomy for localized prostate cancer has a 10 to 30 percent chance of experiencing prostate cancer recurrence during his lifetime."

If I weren't a prostate cancer survivor, I'd put my money on a diagnosis of a pulled muscle or a herniated disk. I'd wait a few weeks before calling my doctor. As a prostate cancer survivor, my fear directed me toward the worst-case scenario. I questioned whether my prostate cancer returned. After my third consecutive day of pain, I made an appointment to see my doctor. I was delighted to receive an appointment and an X-ray on the same day.

 I think it's stressful enough living as a cancer survivor. Now I'm coping with both recurrence anxiety and test-waiting anxiety! At the pharmacy, I paid $80 out of pocket for a muscle relaxer and pain medication. That was a vivid reminder of the out-of-pocket expenses involved In treating cancer or any illness or disease.

The next day, I took the day off from work because the combination of medications caused dizziness. I was unsteady on my feet. That was a vivid reminder of the unpleasant side effects of treating prostate cancer, my loss of urinary control and impotence. It also reminded me of the three months I was unable to work and the loss of income after prostate surgery. Most folks experience a significant loss of income while living with cancer.

Since my prostate cancer diagnosis, I've moved from private insurance to Medicare. At this juncture, Medicare will not approve magnetic resonance imaging (MRI). This means my physician has no way of knowing whether I have a herniated disk, since it will not show on an X-ray. As I wait (for who knows how long) to have MRI approval, I'm reminded of the hoops that patients with insurance must jump through to get diagnosed and treated.

Lessons learned from cancer survivorship

• Cancer is a gift that keeps giving in ways I wish I could decline.
• There are specific symptoms that require me to seek medical attention.
• Living with chronic pain is miserable. Therefore, it's tempting (but dangerous) to combine medications or take more than the prescribed dosage of pain-relieving medication. Mixing pain relievers with alcohol is never a good idea. Driving under the influence of certain pain relievers is illegal. Asking my wife to drive me to work is always a struggle.
• Any sudden life-changing symptom is a reminder that my status of good health is fragile and temporary.
• Waiting for tests and results is a reminder of my impatience. Doing something out of the ordinary or special helps me wait more patiently.
• When confined to a chair, I remember how comforting it is to for my dog to sit on my lap.
• Activities such as reading, watching TV, listening to music, engaging conversations, or even talking to my dogs can distract me from constant pain.
• When my wife asks me to refrain from working on any household projects while I'm home alone, I'm reminded of the importance of respecting my wife's concerns, whether I agree or not.
• When circumstances are beyond my control, I'm reminded of the importance of prayer.
• Sometimes not knowing is better than knowing. I'm no longer in a rush to receive bad news. It had been three days since my X-rays, and I was not in a hurry to hear the results.
• Difficulty falling asleep is a hazard of waiting to hear test results. I hate tossing and turning in bed past 2 a.m.
• Based on my symptoms, the likelihood of a ruptured disk is much greater than the likelihood of the return of cancer. Knowing this doesn't prevent me from worrying.
• Cancer survivorship is stressful because of both real and imagined difficulties.                             I received the results from my X-rays. It's not a return of prostate cancer. What a relief!                                                                                                                                 Note: This article appeared in Prostate Cancer News Today Rick Redner and his wife Brenda Redner wrote two award winning books. The first: I Left My Prostate in San Francisco-Where's Yours?provides men and couples with information and support before, during and after prostate surgery.Their second book was written for couples living with!erectile dysfunction. After living with erectile dysfunction for four years, Rick chose penile implant surgery. The couple share how implant surgery changed their lives and relationship. The title of their book is: Everything You Never Wanted to Know About Erectile Dysfunction and Penile Implants.

Harmful & Helpful Ways to Think About Prostate Cancer

In my fourteen years of living without a prostate and dealing with the quality of life issues that follow a prostatecomy, I discovered there are comments we say to ourselves and/or those we hear from our friends, family, and healthcare professionals have a positive or negative impact on the way we cope with cancer survivorship.

Following are six distressful comments men with prostate cancer hear frequently:

1. My (father, uncle, cousin, etc.) had the exact same cancer and he (recovered or died). What happened to someone else is irrelevant to a cancer patient, at best. It's downright annoying.

2. You're lucky you have the "good cancer." It's as unlikely as hell freezing over as it is thinking anyone diagnosed with cancer feels lucky.

3. You look great! How someone looks bears little resemblance to how someone with cancer feels.

4. If you try this (insert miracle cure), I'm sure you'll be cured. Unless you have earned your medical degree, most folks coping with cancer are not interested in hearing about your thoughts on a "miracle cure."

5. If you had (lost weight or eaten less dairy, sugar, red meat, etc.), you wouldn't have cancer. Blaming the behavior of the person with cancer may ease your fears about developing cancer. It's not in the least bit helpful to someone who has cancer.

6. Double nerve-sparing surgery will preserve your erectile functioning. According to a study titled, "Sexual Dysfunction after Radical Prostatectomy," published in the journal Reviews in Urology, "The recovery of erectile function is agonizingly slow, requiring as long as 18 to 24 months. ... Patients again assume that bilateral nerve sparing is synonymous with preservation of potency, not realizing that few men experience potency that is as good postoperatively as it was preoperatively. ..."

As men diagnosed with prostate cancer, it's important to develop realistic expectations regarding the quality-of-life issues you'll experience after treatment.

It also is important not to hold grudges against friends and family who say things that hurt rather than help us cope with cancer. Most hurtful comments come from a misguided notion of helping or ignorance, rather than an intention to cause harm.

The following are five unhealthy ways men talk to themselves about prostate cancer:

1. Constantly worrying that cancer will return. This fear is referred to as recurrence anxiety. Many folks with cancer live with a joy-killing fear that their cancer will return. Learning to cope with the possibility of a recurrence may require outside help from a support group or professional.

2. I'm no longer a man. Treating prostate cancer can temporarily or permanently affect erectile functioning. I never knew my sense of being a man was linked to my ability to maintain an erection until I lost my ability to maintain an erection. Men face two challenging tasks. The first involves discovering ways to enjoy sexuality that isn't dependent on an erection. The second involves redefining your definition of manhood. Men unable to successfully meet these two challenges suffer a devastating loss of self-esteem. They frequently struggle with depression.

3. My partner would be better off without me. Men who experience depression due to their loss of manhood believe their partner deserves a "whole man."

4. At least I'm alive. If that sentiment increases your gratitude for being alive, it's a healthy attitude. If that sentiment leads you to a place of passivity or helplessness, it's causing great harm.

5. I must give up on dating or entering into a relationship. These men believe their inability to attain an erection has totally destroyed their value, so they impose a lifetime sentence of loneliness by withdrawing themselves from dating or seeking a relationship.

Once we develop a negative narrative about ourselves or the way we think others see us, our self-esteem and/or guiding philosophy of life is set in stone.

Without intervention or a purposeful challenge of our negative belief system, we say and do things that fulfill that system.

Today, make a list of the negative things you say and believe about yourself and your identity as a cancer survivor.

Here’s seven things  I’ve learned to say to myself that defeats my negative self talk:

1. I’m fighting a war against cancer. This reality tranforms me from becoming a cancer victim into becoming a “Prostate Cancer Warrior.”

2. Despite my fears, I've braved testing, treatment, and lifelong consequences.

3. My lifelong quality-of-life issues are battle scars I've sustained fighting this war.

4. It takes bravery and courage to fight the war against cancer.

5. I’ve learned important and valuable life lessons about living and dying since my diagnosis.

6. I will wisely use my time now that I'm a cancer survivor.

7. There are verses in the Bible that offer comfort and support. For me, I found this verse greatly relieved my fears:

“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.”

~ Isaiah 41:10~ 

Add a few of your own guiding principles that challenge negative thinking.

Do you notice anything change as you actively challenge your negative thoughts and beliefs?

Per my contractual agreement I must mention this article appeared in:

Prostate Cancer News 

Rick Redner and his wife Brenda Redner wrote two award-winning books. The first:

I Left My Prostate in San Francisco-Where's Yours?

provides men and couples with information and support before, during and after prostate surgery.

Their second book was written for couples living with!erectile dysfunction. After living with erectile dysfunction for four years, Rick chose penile implant surgery. The couple share how implant surgery changed their lives and relationship.

The title of their book is:

Everything You Never Wanted to Know About Erectile Dysfunction and Penile Implants.