Thursday, July 31, 2014

Are Kegels The Magic Bullet For Developing Urinary Control After A Radical Prostatectomy?

I'll start with the bad news first, Kegels are not a magic bullet.That said, men who do Kegels before and after surgery do better with regaining urinary control than men who do no Kegels or men who begin Kegels after surgery.

After surgery I had severe urinary incontinence. I was going through 15 diapers a day. It was both physically and emotionally draining. I hated the quality of my life and more than anything I wanted to regain urinary control as quickly as possible.  Before and after surgery  I was told to do  6 sets of ten Kegels a day.

I have a philosophy in life that''s probably caused as much trouble as it's relieved. It goes like this, if 20 is good, then 200 is ten times better. I figured I could regain urinary control much faster if I went from 60 Kegels a day to a few hundred a day.

With a misplaced confidence in my philosophy and without discussing my plan with my Doctor I began my plan of performing hundreds of Kegels a day. It didn't take me long to realize I began leaking worse than before I started performing hundreds of Kegels a day. I got so discouraged and depressed I went from doing hundreds of Kegels a day to quitting completely. In other words, I gave up on Kegels.

I learned the hard way that performing hundreds of  Kegels  causes fatigue and increased leakage.  I learned this after discussing my failure with my Doctor. Based on his experience and advice, I went back to performing 60 Kegels a day.

On my  Website Survey 32% of 300 men said urinary issues were the worst part of coping with life without a prostate.

I discovered the hard way it's not possible to cut your recovery time half by doubling the amount of Kegels you perform. Here's one out of  many life issues where more is harmful rather than helpful.

I hope by reading this you are spared from the trouble and healing delay this misplaced philosophy caused me.

Here's a link to a good article about Continence After A Radical Prostatectomy

If you want more tips and insights with regard to coping with life without a prostate, check out my book on

Tuesday, July 22, 2014

Double Nerve Sparing Surgery-Hope or Hoax?

I believe the overwhelming majority of men who undergo double nerve sparing surgery are set up for long term disappointment. Disappointment is an understatement. In fact I'm beginning to wonder whether the expectations men are given post surgery could be considered a hoax.

A  hoax is defined as: something intended to deceive or defraud. So my question is whether or not men are receiving accurate information about the return of their erectile functioning post-surgery.

I'm aware that many men never loose their erectile abilities. As soon as the catheter is removed, they are capable of achieving an erection.  I also know of men who after a period of weeks, months, or years regained their pre-surgery levels of their erectile abilities.

I'm also aware there is a very large group of men who are either disappointed, angry, depressed or devastated by their lack of erectile abilities after double nerve sparing surgery.  Every man who is offered double nerve sparing surgery should be told the following:

"Double nerve sparing does not necessarily mean a return of erectile functioning. Even if there is a return, in all probability it will not be comparable to your preoperative abilities." 

If you received that information, you were provided with accurate information.  I believe far too many men went into surgery expecting a return to preoperative erectile functioning. There are a few reasons why this could have happened.

It's possible you were given inaccurate information. It's also possible you were told but didn't remember. Another possibility is the  issue was never discussed. Whatever the caused this gap between what you expected vs what actually happened doesn't matter in terms of the devastation men experience post-surgery.

Men who experience this expectation gap experience anger, depression, bitterness, a loss of self esteem or manhood, and relational  problems. Too man men suffer emotionally, sexually, physically, and relationally as a result of the gap between what was expected and what actually happened with regard to erectile abilities.

Make sure you understand ALL the effects that surgery will have on your sexuality. For example a man will no longer ejaculate. Spontaneous erections may be a thing of the past. No amount of visual auditory or physical stimulation will result in an erection without the use of ED medication, penile injections or a vacuum pump. Orgasms may be less intense. It's possible you'll leak urine before, during or after an orgasm.

Far too many men are choosing aggressive treatment and unnecessarily suffering some of these consequences when aggressive treatment may not be necessary.  My advice is this: Don't let fear determine how you treat your prostate cancer. Get all the medical tests necessary to give the most information possible about your cancer. If it's life threatening treat your cancer aggressively. The risks and consequences of surgery may cause you to consider other forms of aggressive treatment. If your cancer is not aggressive, seriously consider active surveillance.

If you want more information about the surgical option check out my book:
I Left My Prostate in San Francisco-Where's Yours?

Friday, July 18, 2014

Conflicting Advice For Men Regarding Prostate Cancer

Men can and should be confused about the advice and warning they receive about prostate cancer. On the one hand there is  The United States Preventive Services Task Force who recommends that regardless of age, men without symptoms should not routinely have the prostate-specific antigen (PSA) blood test to screen for prostate cancer. The logic behind this decision comes from the fact that too many men are choosing to aggressively treat their prostate cancer when aggressive treatment isn't necessary.

In other words men are basing their choice of treatment on their fear of cancer rather than the specifics of their diagnosis.  That's definitely a problem that needs to be addressed. That said, keeping men ignorant about the possibility of prostate cancer is equally dangerous.

Here's another fact men need to know before they blindly follow the recommendations of the U.S Preventive Services Task Force:
 The number of younger men diagnosed with prostate cancer has increased nearly 6-fold in the last 20 years, and the disease is more likely to be aggressive in these younger men, according to a new analysis. Typically, prostate cancer occurs more frequently as men age into their 70s or 80s. However, the researchers found that when prostate cancer strikes at a younger age, it's likely because the tumor is growing quickly.

To read the article where this quote is taken from click on this link:
Incidence of Aggressive Prostate Cancer Increasing In Young Men

I don't know about you, but when it comes to making life and death decisions I prefer to error on the side of caution. That's why I believe it's important for men, especially those men who have a family history of prostate cancer to begin screening as early as in their twenties and thirties.

The incidence of aggressive  prostate cancer found in young men is on the rise. Men need to based their decision making based on reality rather than the  ridiculous  recommendations from the Task Force. That's my take away from this, what's yours?

Saturday, July 12, 2014

Where's God When I Have Cancer?

This is in rough draft, but I wanted to post it before it's in it's finished form.

Vikor Frankl was no stranger to suffering. He survived many years in Nazi concentration camps. He witnessed and personally experienced man’s cruelty, and brutality. He noticed something different about those who gave up, or became as cruel as the Nazi’s vs those who remained kind and caring, and who fought to live under terrible circumstances. What he learned is found in some quotes from his book- Man’s Search For Meaning:

1. “In some ways suffering ceases to be suffering at the moment it finds a meaning, such as the meaning of a sacrifice.”
2. “Life is never made unbearable by circumstances, but only by lack of meaning and purpose.”
3. If there is meaning in life at all, then there must be meaning in suffering".

Frankl witnessed first hand the outcome of those in the concentration camps who found meaning and purpose to suffering vs those who gave in to their suffering by experiencing despair.  Frankl’s discovery confirms what was written centuries before he was born:

To everything there is a season,
A time for every purpose under heaven:
(Eccl 3:1)

Frankl's observation reflects a Biblical truth which applies to those  with no faith or those of any faith. Everyone has the potential to discover meaning and purpose in their suffering. That said,  the God of this universe offers some very specific ways to grow and mature though suffering. Those who choose to suffer without God will miss out on many blessings from the hand of  God.

God does not want us to waste our suffering or giving into despair. Therefore, He seeks to give our suffering meaning and purpose. A purpose that’s laid out in these two Bible verses:

My brethren, count it all joy when you fall into various trials, knowing that the testing of your faith produces patience. But let patience have its perfect work, that you may be perfect and complete, lacking nothing. (James 1:2-4)

And not only that, but we also glory in tribulations, knowing that tribulation produces perseverance; and perseverance, character; and character, hope (Rom 5:3-4)

God is working His purpose in the worst of our suffering, IF we allow Him to do so. Do not think for a moment I under estimate or make light of the suffering and pain that comes from cancer. I know the suffering can become so overwhelming, it can drive the one who is suffering or the healthy person witnessing the suffering  away from a belief in God.

 A reasonable question is what is God doing while I’m suffering?
 Believe it or not God offers you comfort. Comfort directly from heaven, and comfort through an army of comforters who've had Divine training and experience with suffering. Here's the Bible verse that confirms this:
 Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our tribulation, that we may be able to comfort those who are in any trouble, with the comfort with which we ourselves are comforted by God. (2 Cor 1:3-4)

A skeptic might ask: How can I know this is real?

Paul was a man who knew all about suffering and listed some of his experiences when he wrote:
 From the Jews five times I received forty stripes minus one. Three times I was beaten with rods; once I was stoned; three times I was shipwrecked; a night and a day I have been in the deep;  in journeys often, in perils of waters, in perils of robbers, in perils of my own countrymen, in perils of the Gentiles, in perils in the city, in perils in the wilderness, in perils in the sea, in perils among false brethren;  in weariness and toil, in sleeplessness often, in hunger and thirst, in fastings often, in cold and nakedness-- (2 Cor 11:24-27)

In spite of all his suffering he wrote these words:
For I consider that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us. (Rom 8:18)

In other words our hope is in a future what begins after we die. Death is the vehicle, which transports us to a new life and a new world.

 So we are always confident, knowing that while we are at home in the body we are absent from the Lord. For we walk by faith, not by sight.  We are confident, yes, well pleased rather to be absent from the body and to be present with the Lord. (2 Cor 5:6-8)

Those who will inhabit this world have this promise:
And God will wipe away every tear from their eyes; there shall be no more death, nor sorrow, nor crying. There shall be no more pain, for the former things have passed away."  Then He who sat on the throne said, "Behold, I make all things new." (Rev 21:4-5)

Suffering isn't meant to turn you away from God, it’s purpose is to draw you closer to God. A God who gave his only Son to die on cross, in order to pay the price for your sins and mine. By doing this, Jesus cleared the way for us to enter into a new world without sin, suffering, and death.

You can go though your experience with cancer with God or without God. You can experience meaning and purpose from your suffering or give in to despair. You can accept or reject His comfort. You can accept His offer to enter into a new world without suffering, pain and death, or reject that world.

We choose what meaning and purpose we will give to our suffering once we receive the news we have cancer. I decided to join the army of Divine Comforters. What will you do?

Wednesday, July 9, 2014

How to Cope With Life & Love Without a Prostate

I've heard from thousands of men who've had their prostate removed. I've learned where you land post-surgery in relation to urinary control and erectile functioning are not the deciding factors with regard to whether or not you wind up bitter and/or angry about the quality of your life. I've known men who never regain urinary control or erectile functioning who are grateful to be alive. They state they are closer than ever to their partners. As a couple they've explored and discovered alternative ways to have a mutually satisfying sexual life together, that does not depend on erections.

Then there are men who've lost their relationships. They have given up on sex.
Many of these men despise and blame their surgeon for ruining their lives. These men frequently state they would have preferred to die of prostate cancer than live the quality of life they have. Even though they are currently cancer free, they remain angry and bitter.
As a Medical Social Worker I was trained to look at a number of factors such as:
1. The couple's previous history of resolving crisis.
2. The current state of the couple's relationship.
3. The couple's support systems.
4. The couple's sexual history and their level of satisfaction with that prior to the dx of cancer.
5. A couple's willingness and flexibility to try different ways to satisfy each other.
6. How much of the man's erectile abilities determine how he feels about himself as a man.
7. How realistic their expectations are about life  without a prostate.
8. The couple's previous experiences with cancer.
9. The role of faith or the absence of faith in coping with prostate cancer.

These are a few of the issues that impact how well a couple will do post-surgery.
My wife and I believe hearing from couples who've walked this walk and are willing to share the tough and intimate realities of life without a prostate is very important. It's the reason we were willing to overcome our shame and  embarrassment in order to share our journey with you. From receiving the news I had prostate cancer, to the hospital and into our bedroom we share intimate details of our success, failures, and life lessons we learned along the way so other couples will  successfully cope with life and love without a prostate. You can check out our book and read a few chapters FREE by clicking this link:

Tuesday, July 1, 2014

Anger and Prostate Cancer

There are many places anger may appear in the journey from the diagnosis of prostate cancer to make an appearance. Your history in dealing with anger will have a significant influence in the way in which you'll make your anger known to others. We'll start at the beginning of the journey with prostate cancer. Before we begin it's important to know that every individual is unique. It's quite  possible that you were not angry during your journey and may find it difficult to relate this blog to your experience with prostate cancer.

Many people experience angry after receiving the diagnosis of prostate cancer. Anger is often a response to frustration or when things don't go the way we hoped or expected. Few people expect to get cancer. It's an undesirable life changing event. Anger can occur when we lose something that's valuable to us. Our good health is one of those valued possessions we take for granted until it's lost.

If you are a person of faith you may find yourself angry at God for allowing cancer to become part of your life. It's possible you'll become angry with your Doctor because you expected s/he would tell you the best way to treat your cancer. Instead it's highly likely they will present you with treatment alternatives and you find out it'up to you to make a what could be a life and death decision about a disease you know nothing about.

At some point in the journey you may find yourself angry with your healthy friends, relatives, and/or partner.
As you face losses as a result of your diagnosis of cancer it's natural to compare what's going on in your life vs what's going on in theirs. Envy of others health or good fortune and lead to anger.

The majority of those in the healthcare field who work with cancer patients have experienced angry cancer patients who've lash out at them.

If you've decided to treat your prostate cancer with surgery there are many more places for anger to appear. I was angry about the lack adequate pain control the first night after surgery as well as on the drive home.
I was angry that much of the hype about surgery wasn't true. I couldn't go home after a 1 day stay, I needed to say another day. I was angry when the catheter was removed and I couldn't get the hang of living in diapers. Leaking through my clothing multiple times a day was humiliating to me.

Expectations after double nerve sparing surgery are high. Many men find themselves angry about coping with erectile dysfunction. Most men are lead to believe their sex lives will return to pre-surgery levels within 18 months.  The reality very few men return to their pre-surgical erectile abilities.  ED frequently lasts significantly longer than 18 months. Many men find sex less pleasurable as a result of losing the familiar and pleasurable sensation of ejaculation which surgery takes away.  The loss of ability and pleasure associated with sex often leads me into a state of depression. Men who get depressed often become angry. In other words in men, anger may be a symptom of depression.

Another place for anger to appear is when we receive our post surgical pathology report. Our goal for choosing surgery was to cure our cancer by having our prostate removed. Many men receive the news that their cancer has spread outside their prostate. This means additional treatment is required.  Receiving bad news about your cancer can result your feeling both fear and anger.

Sadly, anger leaks out to other places. This emotional is often directed at the safest targets which unfortunately happen to be the most important people in our lives, our spouse and our children. We may be unaware this is happening, while the people living with you  feel like they are walking on egg shells.

I tend to think of anger as I do an alarm clock. When the buzzer goes off it's time to pay attention. Here's where your history with anger comes into play. My father dealt with his anger by yelling. That's where and how I learned to deal with anger. I yell. It's taken me decades to learn that yelling when I'm angry does much more damage than it does good.

Anger can be used constructively or destructively. The next blog will examine the constructive and destructive ways to use anger along the journey of coping with prostate cancer.  How do you deal with anger? What do you hope to accomplish as you express your anger? How does your anger impact your most important relationships?