Saturday, January 7, 2017

Base Your Prostate Cancer Treatment on Your Diagnosis NOT Your Fears

The following article appeared in Prostate Cancer News Today on 11/18/2016 on this link:
The Toughest Decision You'll Ever Make

I’ll never forget the question my urologist asked me during my appointment to discuss treatment options: “How would you like to treat your prostate cancer?”
I thought he was joking. I had a palpable lump, 4+3 Gleason score, and a potentially life-threatening disease. How could he expect me to come up with an intelligent answer about treating a disease I knew next to nothing about?
I can’t think of another illness, injury, or disease where I’ve been asked to decide the course of treatment. The only thing I knew at that time was I wanted to treat my prostate cancer aggressively.
I thought back to the dozen books I’d checked out from the library. The easiest form of treatment I could remember was brachytherapy. This option appealed to me because it would require only treatment and there wasn’t much down time. My primary objective was finding an aggressive treatment that was, first and foremost, convenient for me.
I was startled when my urologist ruled out my decision. He said that based on my urological history, I would not do well with brachytherapy. I’d just used up all the knowledge I’d accumulated. I had nothing else to offer. I knew he did, so I searched for a way to get him to tell me what I wanted to know.

The Answer

I formulated a question to get the answer I needed to hear. I asked, “If you had my urological history, a palpable lump, and a Gleason score of 4+3, how would you treat your prostate cancer?” Without hesitation he said, “I’d go for surgery.” I had my answer. I said, “That’s exactly what I want to do. I want surgery.”

The Warning

He gave me a serious, life-altering warning. “Given your urological history there’s a high probability you’ll never regain urinary control,” he told me. Under normal circumstances I’d never forget a life-changing warning like that, but given the anxiety and fear I was coping with, I’d forgotten his warning by the time I left his office.
The warning came back to me two weeks after my surgery and after spending my first day in diapers. By the end of that day, I passionately hated living in diapers. The possibility of living this way the rest of my life caused more grief than prostate cancer. I wondered if I’d made the worst mistake of my life in the way I decided to treat my prostate cancer.

Removing fear from the decision

  • Don’t rush into treatment. Take time to investigate the effectiveness and quality of life issues of each treatment option.
  • Talk to men who are further along in the journey with the treatment choice your are considering.
  • If you base your treatment option on your fears about cancer, the odds are high you’ll suffer some unnecessary and permanent quality of life issues.
  • Base your treatment decision on your diagnosis rather than your fears.
This is by far the most challenging task you’ll face as you consider your treatment options.

How & Where do You Want to Receive Your Biopsy Results?

This blog appeared on Prostate Cancer News Today on 10/24/16 on this link:
Receiving Your Biopsy Results

In my previous column, I talked about the first phase after a biopsy — the waiting. Here, I’m looking at phase two, which begins the day you receive your results.
In a study titled Disclosing a Diagnosis of Cancer: Where and How Does It Occur?, researchers reported on a survey given to hundreds of cancer patients being treated at a National Cancer Institute center in Maryland. Their findings:  “Of  the 437 patients who completed the survey, 54% were told their diagnosis in-person in the physician’s office, 18% by phone, and 28% in the hospital. Forty-four percent of patients reported discussions of 10 minutes or fewer, 53% reported discussions lasting longer than 10 minutes, and 5% could not remember … Higher mean satisfaction scores were associated with diagnoses revealed in person rather than over the phone.”
I wanted some influence as to where and how I’d receive my biopsy results.   
The Where — I did not want to receive the news in my doctor’s office. Part of that decision involved my not wanting to drive 30 miles home if the news confirmed my suspicion of having prostate cancer. I wanted to hear the news in the safety and security of my home.
I’m in the minority. Most people prefer to be told their results in their doctor’s office.
The How — After the biopsy procedure, I asked my doctor if he’d call me with the results. He agreed to do this. I anticipated that I’d get about 10 minutes of his time.
To use that time efficiently, I decided to prepare a list of questions in advance. As it turns out, my list contained one question: I wanted to know my Gleason score.
The Call — My phone rang at 7:30 on a Sunday morning. In my life, early morning phone calls usually involve an emergency or bad news.
It was my urologist. I was struck by his tone of voice when he asked, “Am I speaking to Richard Redner?” I knew beyond a shadow of a doubt he was about to tell me I had prostate cancer.
My wife, Brenda, was sleeping at the time. I ran upstairs, woke her up, and told her I was speaking to my urologist about my biopsy results. I put the phone on speaker and told him I was ready.
He said, “I regret to inform you that you have prostate cancer.” He didn’t say this, but I imagined I heard it loud and clear: “You’ll be dead within a year.”  I asked my only question. “What are my Gleason scores?” He said three cores were 4+3, the others were 3+3. I was confused. I thought all cores would have the same score, so I asked him “What does this mean?” He said, “You have a moderately aggressive cancer.” My filter deleted the word “moderately.”
My Suggestions:
• Ask your doctor if treatment options are discussed on the same day you receive your biopsy results, or whether that will require another appointment.                                                                                                                                             • Bring your partner, a friend, or family member to the meeting, rather than receive the news alone.
• Decide how, when, and where you want to receive your biopsy results. Write a list of questions you’d like answered.
• Take notes or record your Gleason score, and all the answers to your list of questions. You’d be surprised how much you’ll forget.

Waiting for Biopsy Results is the Pits

This blog appeared on 10/14/16 on Prostate Cancer News Today:
How to Wait For Biopsy Results

After your biopsy, it can take anywhere from one to three weeks to receive your results. For many men (I’m in this group), waiting for your biopsy will be a highly stressful time. For me, each passing day of waiting was more miserable and stressful than the next. I don’t wait well. In the express lane in the grocery store, I’ll count how many items are in the carts of people in front of me. To the everlasting embarrassment of my wife and children, using a loud voice I might say: “Doesn’t the express lane have a 15 item limit?” There’s no doubt in my mind, if I had to drive to face a firing squad, I’d be in the left lane passing everyone I could. How I waited for my biopsy results taught me a few valuable lessons I’ll share with you.
Online, I found this definition of the word wait: “To remain inactive until something expected happens.”
I divide the waiting period into two phases. Phase one is the time you spend with no information about your biopsy results. Phase two is the day you receive your results. Here are some of the things I did in phase one.
I knew absolutely nothing about prostate cancer, so I went to our public library. I checked out a dozen books. I wasn’t reading to obtain facts about prostate cancer. I focused my attention on the worst information I could find. I ignored and dismissed the fact that “Nearly 100 percent of men diagnosed with prostate cancer while the cancer is in early stages are still alive five years after diagnosis.” I locked into the fact that “prostate cancer is the second-leading cause of male cancer-related death in the U.S.” I was selectively filtering the information I was reading in order to prove to myself that a diagnosis of prostate cancer is a death sentence.
The more frightened I became, the more I relied on mood-altering behaviors to help me cope. Examples of mood-altering behaviors are using drugs, alcohol, TV, computer games — anything that removes you from reality to avoid experiencing reality is a mood-altering behavior.
I used food. As I ate more, I gained weight. As I spent too many hours in front of the TV, I distanced myself from my friends, family, and my wife. I set myself up to experience isolation at a time when I needed lots of support.
If I had a do-over, I would:
  • Read a lot less
  • Spend more time with my family
  • Take my wife on a weekend or week-long romantic vacation
  • Spend a lot less time in front of the TV
  • Exercise regularly
  • Eat less junk food
  • Find people further along in the journey to talk with both in person and online
  • Listen to my wife’s fears and concerns
  • Rely more on my faith and spend more time in prayer
Which (if any) of these suggestions appeal to you and/or your partner in your time of waiting for your biopsy results?

Overcoming Fears of a Prostate Biopy

This blog appeared Oct 6th 2016 in Prostate Cancer News Today at this link:
Overcoming Biopsy Fears

After my urologist felt “a suspicious lump” and scheduled me for a prostate biopsy, anxiety and fear became  my constant companions. There were two primary sources of my fear. The first involved my fear of the procedure. The second involved the fear of receiving my biopsy results.
Knowing next to nothing about a prostate biopsy, I did what is second nature when needing information. I went online and searched “preparing for a prostate biopsy,” and received more than 150,000 Google hits. My eyes glazed over. The amount of information was overwhelming.
I allowed my fears to determine the questions that needed answers. I’ve come to believe that anyone who is told they need a prostate biopsy should receive a list of Frequently Asked Questions. Here’s my list of questions; hopefully, the answers will reduce your fears as it did mine.
How is a prostate biopsy performed? A transrectal biopsy is the most common method used. A  thin needle is inserted through the rectum, into the prostate. Several thin cylindrical “cores” of prostate tissue are removed and examined for prostate cancer.
Is the procedure painful? The experience of pain is highly subjective. You should know if or how your urologist plans to reduce your pain. If you’re told there’s no need to reduce the pain, it’s my suggestion you insist on pain relief. With pain relief,  I’d say my pain level was at six on a scale with 10 being the most painful. Thankfully, the test doesn’t take very long.
What are the ways to reduce the pain? My urologist injected lidocaine, which is a numbing drug, into my prostate to reduce the pain. The good news is the injection worked. The bad news is the injection to reduce your pain is mildly painful.
What are the risks of a prostate biopsy? You’ll receive and sign a form detailing the risks of a biopsy. The most common risks cited are bleeding at the biopsy site, rectal bleeding, or infection. You may see blood in your urine. Your semen may be blood-colored for a week or so. Temporary impotence is not listed as a risk, but I was in the minority of men who experienced temporary impotence, lasting approximately two weeks, after my biopsy.
Can a prostate biopsy rule out cancer? Yes, but a negative biopsy is not necessarily a guarantee of being cancer-free. According to researchers at the Oregon Health and Science University Cancer Center, up to 25 percent of prostate biopsies give a false negative.
What do I need to know in order to understand my biopsy result?  Your Gleason score is a measure of how aggressive your tumor is likely to be. It is made by a pathologist looking at the cancer under the microscope.
Receiving the answers to your questions and concerns before your biopsy is the best way to prepare and reduce your fears about this procedure.

Just My Imagination Running Away With Me

This blog appeared here on Sept 21st 2016 In Prostate Cancer News Today: Here's the link
Receiving the news I needed a biopsy was the first time in my life that I had to deal with the possibility I had a life-threatening disease. For a doctor, telling someone they need a biopsy is a regular occurrence. For the patient receiving that news, it’s both traumatic and life changing.
When you receive the news you need a biopsy, it’s highly unlikely the medical system will acknowledge or address the emotional needs of the person receiving this news. I was totally unprepared to cope with the possibility I had prostate cancer. I left the doctor’s office in a daze. I couldn’t believe it was possible to have a potentially life-threatening disease, without any symptoms or warning.
On my first night, my imagination turned against me. I spent a good deal of my sleepless hours reliving how everyone I knew who was diagnosed with cancer had died. I had a host of people to remember, both personally and professionally. As a medical social worker, I witnessed people die from cancer in a hospital setting. Most of these deaths occurred before the hospice movement. In pre-hospice days, most doctors would not provide adequate pain control. In those days, the primary medical objective was to avoid creating drug dependency, rather than eliminate pain.
I suspect that’s the reason every cancer death I could recall involved people who suffered a great deal before they died. I replayed their suffering multiple times. After wallowing in those gruesome images, I inserted myself into the story. I imagined it wouldn’t be long before I’d be one of those people in chronic pain, dying from prostate cancer.
Unfortunately, most of the people I knew who’d been diagnosed with cancer had died within a year of receiving their diagnosis. From my perspective, a diagnosis of prostate cancer was the equivalent of a death sentence. So I began to imagine everything I’d miss out on. Three of the most painful losses I experienced that night were:
*Not living long enough to walk my daughter down the aisle
*Not living long enough to be a grandparent
*Not living long enough to enjoy retirement with my wife
I was convinced I’d die before any of these events occurred. By the time morning arrived, I was convinced my survival depended on my receiving a rapid diagnosis and treatment. I believed the only way to delay dying from prostate cancer depended on my ability to find a urologist who could get me in for a biopsy in less than 30 days. Even if it meant I’d need to travel to another city. I would have flown to the moon, if necessary, to cut down on my waiting time. Convinced my life depended on receiving a diagnosis and treatment as quickly as possible, I began the task of finding a urologist who would perform my biopsy in less than 30 days.
I’d entered into a race against time to diagnose and treat a silent enemy capable of killing me.

Why I Left & Why I came back

A few months ago, I was approached by BioNews Services. I was asked to blog about prostate cancer. I had mixed feelings about their offer.

The Pro's
1. They offered to pay me for each blog. Not a lot, but it is nice to be paid for your work.
2. They offered me greater exposure. The number of people who read my blogs on this site reach to         the double digits. On occasion I'll reach a three digit number.  On their site, all my blogs reach
    several hundred people. For me it's more rewarding to reach several hundred people rather than           twenty.
3. They spruce up my blogs with graphics and a more appealing and professional look than I could         give them.

The Con's
1. My original agreement was that I couldn't post any of my blogs here. (Which explains my absence)
2. They determined the length of the blog. In other words my word count was limited. Which meant I
     have to sacrifice details in order to keep the word count down.

For me the pro's outweighed the cons.  I currently blog for BioNews Services.

Recently they changed the agreement and allowed me to share my blogs on my personal blog. So I'm going to link my blog here, so those who want to follow me here can do so. It's a pleasure to be back!

Sunday, November 6, 2016

Where do men get support coping with erectile dysfunction?

It's been estimated that erectile dysfunction is involved in the breakup of 25% of marriages that fail. One of the most frustrating things for partners to cope with is the anger and defensiveness of men who refuse to seek help. In addition to refusing to seek help, most men withdraw both emotionally and physically with their partner.

I'm asking men who are coping with ED to share what (if any) forms of help they've tried:
1. Consultation with a Physician
2. Talking with their partner
3. Joining an online ED forum
4. Attending an ED support group
5. Seeking advice, support & information from a friend or family member
6. Reading articles about ED online
7. Reading a book(s) about ED
8. Going at it alone without doing anything

If you've had a positive experience(s) seeking information, help or support please share the source and the results of that help.

If you've had a negative experience share that, and what you've done since that time.

If going at it alone has caused both you and your partner nothing but misery check out the book my wife and I wrote:
Everything You Never Wanted to Know About Erectile Dysfunction and Penile Implants