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:

Thursday, July 3, 2014

Sex Drive After Prostatectomy May Drop To Zero-Here's Why

Many men experience a reduction and/or a loss of their sex drive after their prostate is removed. This reduction can be a result of a variety of reasons such as:
1. Coping with cancer-the emotions of fear and/or anxiety can impact sexual desire.

2. Depression- men often experience post-surgical depression. When men are depressed they don't typically experience depression the same way women do. Women typically become sad. Depressed men are frequently agitated, irritable, and easily angered. They could experience a loss energy and interest in previously enjoyed hobbies and activities. Depression often leads to a noticeable reduction in desire and/or  interest in sex.

3. Losing urinary control- After prostate surgery the majority of men lose the ability to control urination. This lack of control may great impact a man's desire for sex.

4.Climacturia is a medical term describing orgasm-associated incontinence. Few if any men are told it's very possible they will leak and or urinate during their orgasm. For some men and/or women, urinating during an orgasm is either highly embarrassing or a complete sexual turn off, so the couple may avoid sex due to the appearance of climacturia. 

5. The Loss of Ejaculation- After surgery men lose their ability to ejaculate. This can affect the pleasure men feel. Some men will avoid experiencing orgasms because of the sense of loss or sadness they feel after an ejaculation free orgasm. 

6. A change in the quality or intensity or  painful orgasms-For some men there is a significantly reduced intensity of their orgasms so there is a reduction in pleasure. This could serve as a turn off. Some men will experience painful orgasms after surgery, and there is a built in desire to avoid pain.

7. A reduction in penis size-Some men report a noticeable reduction in the size of their penis. This may cause some degree of shame-which will greatly impact a man's interest in sex.

8. Erectile Dysfunction-The majority of men will experience the loss of their ability to experience an erection for a minimum of 18-24 months. The inability to experience an erection can have a devastating impact on a man's libido and desire for all forms of physical contact. 

I don't know why I haven't read this any where else but this seems obvious to me that prior to surgery each man had a number of triggers which could result in an erection. Some of those triggers for an erection were:
1. Sight-Men often get arouse as a result of seeing something that turns them on.
2. Sound- Certain sounds or sex talk can arouse men. There is a whole industry based on the power of sex talk to arouse men
3. Smells- Certain smells can arouse a man to experience an erection
4. Fantasy- Men have the capacity to use their imagination to think about sexual experiences that arouse them, resulting in erection.
5. Words-Some men are aroused by reading about sexual encounters.
6. Touch- Certain forms of touching can create a state of arousal.

After surgery, most men will experience a complete and total loss of sexually exciting, erection inducing triggers. For men, their erection is the signal they are sexually aroused. Unfortunately,
for a majority of men, prostate surgery results in the inability to experience an erection when exposed to previous erection inducing triggers. Men experience their flaccid penis as evidence they are no longer aroused and then go one to conclude surgery forever ended  their interest in sex. 

When men lose  their every trigger they had which produced an erection, there a a powerful emotional reaction this this loss. Now these previously exciting triggers result in a man feeling a sense of loss,  disappointment, frustration, anger and shame. Many men coping with erectile dysfunction feel that surgery robbed them of their manhood

In order to avoid feeling those powerful emotions a man will avoid everything that was previously exciting to him. Frequently, a man with erectile dysfunction will  avoid all forms of physical affection. By doing this he seeks avoid feeling shame and the awful reminder that he's lost his manhood. The strategy  to avoid all forms of physical affection adds a significant amount of stress and tension into the relationship. 

In my opinion,  the complete and total loss of sexual exciting triggers is what men experience as a loss in libido. Most men associate a  flaccid penis as a lack of excitement and/or interest in sex. So it's easy for a man to conclude that as a result of surgery he's lost his interest in sex. 

The couple discover much of  their  sexual history is lost to both of them. Behaviors that previously resulted in mutual excitement and pleasure now end with failure, disappointment and frustration. 

It takes a compete re-wiring of the brain for a man to learn he can be sexually aroused with a flaccid penis. Most men have no idea it's even possible to experience an orgasm with a flaccid penis. 

It's challenging (and possible)  for couples to find new ways to enjoy sex post-surgery. For a couple to reclaim their enjoyment of their sexuality and sex, it means learning to become aroused while experiencing a flaccid penis. 

To re-claim your sexuality post-surgery takes time, effort, experimentation, and new experiences to re-program your mind and body to experience arousal in completely different ways  than you did prior to surgery.  Men must learn how to find pleasure, enjoyment, and orgasms with a flaccid penis,  This  isn't a simple or easy lesson for a man to learn but it's an essential lesson to learn in order to re-claim and renew sexuality post-surgery. It doesn't take an erection to enjoy sex.  That's my take, what do you think?

My wife & wrote I Left My Prostate in San Francisco-Where's Yours? to help men and couples cope with life and love following prostate surgery.

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?

Saturday, June 28, 2014

Emotions & Prostate Cancer

How you cope with the diagnosis of prostate cancer and the aftermath of treatment depends upon a number of factors. Some of those are:
1. Your emotional intelligence-do you pay attention to your emotions, use them constructively, deny or ignore them?
2. Your support system
3. Your Faith
4. Your previous experiences with cancer of any kind
5. The state of your current relationship
6. The attitude of your partner to your disease
7. The quality of life issues you face as a result of your treatment decision.
8. Your previous history of coping with crisis
9. How your sexuality is tied to your identity as a man or woman.

I recently had the opportunity to write an article about emotions and prostate cancer. The link is here:
Emotions & Prostate Cancer

Your thoughts and comments about how your emotional life was affected by prostate cancer are welcome here.