YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

BRONZE

Lynn Metts and Kimberly live in Virginia USA. he was 47 when he was diagnosed on April 10, 2006. His initial PSA was 2.85 ng/ml, his Gleason Score was 3+3=6 and he was staged T1c. His choice of treatment was Radical Prostatectomy. Here is his story:

Similiar to Glen Leslie, I would like to tell my story as it happens to me. If you are lookig for someone to identify with, I am

1) a retired US military officer and use military health care,

2) am a newly wed, and

3) am proudly religious .

So here is the first installment.

The "Call" (Being Diagnosed)

Most people remember exactly what they were doing or where they were during major disasters or life changing moments. Examples are the Space Shuttles blowing-up, September 11th, and when you were told you had cancer.

I was diagnosed on 10 April 2006. I actually planned to have my taxes turned in on time this year (April 17th for those in the United States). But my wife got me an appointment on 17 April to hear how bad I had cancer, and figure out my treatment options. I blew off preparing taxes and instead began researching cancer. Luckily, I found the YANA website. I soon found I could search that list of Mentors by factors similiar to my case. For me, this meant finding anyone around 47 years of age at diagnosis. I was fascinated by the stories of 3 men in particular:

Glen Leslie, NY, Surgery
Tim Canney, GA, Watch and Wait
Scott Dally, Surgery

I emailed each one. Over the next three days, each Mentor had pro-actively called me to discuss cancer and encourage me. The most amazing thing about these men is that none of them pushed their chosen treatment option on me.

How did I "end" up on a biopsy table?

I never would have gotten a biopsy if not for my wife. I was married Christmas Eve 2003. In October 2005, my father was (age 74) was diagnosed with Prostate Cancer. So my wife hauled me into the family doctor at Walter Reed Army Medical Center. I had been peeing frequently. But my biggest problem has been pain in the left testicle. If you are anywhere near Walter Reed, let me assure you that they spare no expense at performing tests. I was immediately sent for a sonogram of the abdomen and groin. Testicles appear to have "cysts", but the prostate came in at 58cc (20cc is normal - at 60cc they worry).

The Finger.

Next stop was Urology. The staff noticed the close relationship I have with my wife, who followed me everywhere. And they noticed I did whatever she wanted. Well, I was finally asked to drop my trousers and put my hands on the table so they could perform a DRE (digital rectal exam). My wife said "I can leave". But the doctor quickly said, "No m'aam. You are just fine right here." Half way in, I told the doctor he had to stop. To my horror, he simply looked at my wife, then at me. She had taken me this far, and all I heard was "Buck up". Urology put me on UroXatral, which I can not tolerate due to the headaches. I was changed to Flomax after UroXatral caused me to have searing pain in my left eye. And after a month, I quit taking Flomax due to mild headaches. However, the brief time on Flomax seems to have lingering good side effects. I no longer have to pee two minutes after drinking. I have read that some people negotiate the dosage with a doctor. I thought it was unusual when I was asked to come back to Walter Reed to discuss changing the drug to Flomax in person. Turns out they actually wanted to tell me that, after reviewing my case I was considered high risk for cancer due to the large prostate size, slightly elevated PSA (2.85), and the fact my father had cancer.

The periscope.

So, on March 13th, I had the biopsy. It can't say it was painful, but it was the most uncomfortable thing I have ever fealt. After the instrument is inside, it actually wasn't so bad. But about half way in, I was begging Dr. Stutzman (retired Chief of Urology) to stop. In his cowboy drawl, he reminded me that my pretty little wife was outside, and asked if I wanted her to think I was a wimp (all the while he continued to push the probe).

Group meeting on treatment options.

Doctor Stutzman called me on 10 April and simply said "Yeh, you got some cancer there." At Walter Reed, you then schedule to meet with teams of doctors in the Prostate Cancer Research Center to hear your detailed diagnosis and pick a treatment option. My wife got me in to the next session on Monday 17 April. We arrived to find six other families accompanying men that also had just been diagnosed. I was by far the youngest. And I believe we were all scared so bad we wanted to cry. I know my fear was that radical surgery was the only option the military would provide. I was determined I wanted radiation to allow for better sexual function. Every newly diagnosed person was eager for information. I spread the news about the wonderful people I had met throught the YANA web site.

So why did I pick radical surgery?

Well, as you can tell by my profile, I have picked the one treatment that I had ruled out. Walter Reed had me sit with Surgeons, Radiation Oncologists, Radiation treatment doctors, sex therapists, and Psychologists. Just like with YANA, no one "pitched" their cure. This is remarkable because I hear that "civilian" doctors pitch their treatment because they make money from your business. In fact, the only "opinion" I received was from the Radiation specialists. He advised "against" me having radiation because, if the cancer came back, which it could since I am so young, you can't later have surgery. If you have surgery first, then cancer comes back in 15 years, you can have radiation. Then, if the cancer comes back in 15 years, you can live a while on hormone treatment.

It ain't about you. (Advice on picking a treatment) My wife got me going to church in August 2005. I attend downtown Baptist Church in Alexandria, VA. Pastor Dale Seeley is the most amazing preacher I have ever met. He "teaches". The first sermon was "It Ain't About You". Basically, there is nothing you can "do" to get in to heaven. You get in by God's grace. Whether you have have a different view on getting into Heaven, the "It ain't about you" is a good principle to live life. I have a 19 year old daughter named Ashley and two step-daughters named Lindsey and Yvonne. My actions today can affect my daughters dramatically in 20 years. My wife Kimberly supports any decision I make. Now, she might feel slighted to see that my decision was based on consideration of her. Well, if it was just for my wife, I would have picked radiation. I want to maintain a normal sex life, so "we" are sacrificing some quality of life for life. Also, we are adopting a new-born baby in October.

I will continue to send in my story as it develops. I would like to mention that while I may emphasize how my religious faith, family, and experience with military health care, other people have extremely valuable information that I refer to help and give me strength. For example, Glen Leslie freely spiels about coping with sexual side effects after radical surgery. Scott Dally has survived 10 years with hormone therapy because the cancer had spread to his lymph nodes. And Tim Canney is taking the bold step of Watch and Wait.

I heartily recommend reading their stories.

UPDATED

July 2007

 

 

PSA is still undetectable (0.001) after 12 months.

June 15th was the one year anniversary of my surgery.


The Operation.


My surgery was performed at Walter Reed Army Medical Center. About 10 patients arrived at 5:30AM. We all changed into our surgical gowns and put into beds in one large pre-operation waiting room. Intravenous fluids were started, priests came by, and then doctors who repeatedly asked if we knew what type of surgery we were going to have. I was the only prostate patient in the 1st surgical shift. Walter Reed runs about 3 surgery shifts each day. All I remember was being rolled down a hallway with operating rooms on each side and the doctors looking for Operating Room #2. I remember the door opening and nothing else till I woke up in Recovery. I was told I was actually awake and responsive, but they give you a twilight drug so you can’t remember anything. The first waking sensation was having a warm blanket put on me. I was weak. I lost about 2 pints of blood during the operation. It took a full 3 months to regain the strength to stay awake all day. I left the operating room at about noon, and stayed in Recovery till 6AM the next day. One nurse sits within arms reach between 2 prostate surgery patients. They do not want patients to have any stress on the abdomen. The nurse gave me a book of puzzles and encouraged me to work on one as a form of low stress stimulation.



Catheters and Pads

I can’t say that I was ever in pain. The biggest nagging issue is being hooked to a urine bag. Due to scheduling issues, I kept the catheter for 3 weeks instead of the normal 2 weeks. Before taking out the catheter, I had to drink a large glass of water. The doctor pulled the catheter out as I exhaled a deep breath. No pain, but a really weird sensation. I was able to hold the urine until I had walked to the toilet. Then my bladder literally let loose with a gush. The trouble came when I had to drink more water and pee to show them that I didn’t have any blockages. I was allowed to roam around the hospital and drink. I drank about 32 ounces. By the time I walked back to the Urology Department, I had leaked so much that my clothes were soaked. I was scared that I couldn’t hold fluid and that I would wet the bed when I slept. I bought plastic bed pads and huge diapers. Walter Reed was great about explaining what would happen before and after surgery, but this topic wasn’t covered well. I should have stayed in the Urology Department and drank a cup or two of water while sitting down. I could have then released the small amount immediately after encountering the stress of standing up. My situation was odd in that I did not have a lot of time to practice Kegals before surgery. Even without building up the alternate muscles via Kegals, I was relieved to find that you don’t leak while lying down on your back. So the first night was great. In the first 3 months after surgery, I practiced Kegals on a strict routine. The use of pads quickly went from 4 large high absorbency pads down to one small pad now. I am sure I get be totally free, but I have not practiced Kegals religiously and I have been working 80 hour weeks for 9 months. When I get very tired, drink alcohol, or eat very spicy foods, I still leak. Well, back to Kegals.


Pills and Withdrawals

A couple weeks before surgery, I felt like a mule head kicked me in the chest. To deal with the anxiety, I was given 15 pills of Ativan (generic name: lorazepam) and told to take them as needed. After the surgery, I had been taking a cocktail of pain killers in addition to the anti-anxiety pills. The last pills I took were about 9AM and the day the catheter was removed. I usually never take pills, so just stopped. My trouble came the following day after going to sleep. I woke up at midnight with a ringing in the ears, a terrible headache, and alternating chills and sweats. The next morning I called the hospital, but they were convinced I was dehydrated. I had begun taking Levitra and was afraid I was having a reaction. I stopped taking Levitra, but still went through a night of withdrawal symptoms. My mother-in-law immediately keyed in on the fact that I had been taking Ativan and suspected addiction after only 10 pills. I had the choice of working with the hospital to take lower doses over about 6 months, or to go cold turkey. I spoke to a pharmacist who said the worst effects would be over in 4 days, with some symptoms lasting up to 2 weeks. Since I figured I had survived 2 sleepless nights, I chose to go cold turkey because I needed to go back to work. Ativan has a side effect that it dampens mental skills. I have to read and analyze for my work, so could not afford a drawn out recovery with reduced mental faculties. The bottom-line is that the withdrawal from the prescribed medicine was the single worst consequence of the cancer surgery. The internet has web sites devoted to horror stories about anti-anxiety drugs. Benzodiazepines, a class of drug most specifically used to treat anxiety disorders can become addictive extremely quickly (3 pills). The four most common are: Ativan (generic name: lorazepam), Xanax (generic name: alprazolam), Klonopin (generic name: clonazepam), Valium (generic name: diazepam). Rather than risk getting hooked on these drugs, please use the resources of YANA to reduce anxiety. Every person I have encountered is willing to talk. This interaction helps reduce anxiety.


Erections

After the catheter is out, the penis is a small piece of limp noodle with a little mushroom like button on the end. Another YANA member, Glen Leslie, has helped me tremendously to cope with recovery. Basically, if you are going to have erections naturally, they will occur between 12 to 18 months. Walter Reed has all patients take 10Mg of Levitra for the first year after surgery. This causes the penis to inflate a little while limp. Well, to inflate to what limp used to be. They give you about 6 20Mg pills to take to attempt sexual activity each month. About a month after surgery, I accidentally took 60Mg within the same 24 hour period (30Mg at night and 30Mg the next morning). I thought I was going to die. I had terrible light headedness. But the penis swelled up hard and to within an inch of old length, yet much bigger around. Also, I could tell that urine leakage had totally stopped. However, I could not feel romantic or keep my breath. I have tried lower dosages but have not seen great results. I will simply wait for natural erections to return. I have found tremendous pain upon orgasm in the crotch area near the rectum but about where the prostrate would have been. It started out being a hot, wet feeling. The pain is reducing. If I do not see improvement in the next 3 months, I am going to explore the possibility of blood clots. Glen Leslie has found a doctor that can rinse the blood sacks of the penis with a saline solution. Each time, Glen was able to remove considerable blood clots and now has normal erections.


Cancer: Curse and Blessing

We all know the bad side of being told you have cancer and the life changing trauma associated with surgery. I have also found that cancer has changed my life for the better. In particular, I have learned to not only love, but to cherish friends and family. While recovering, you have time to notice the little, or big things people do. For example, while I was doped up on Ativan, my wife refinanced the house. If my signature was needed on paper or voice was needed on a phone, she made people think it was me. I forgot I had an adjustable rate mortgage that was about to balloon. She also earned the money and paid all household bills for 3 months. We have only been married since 2003. I was attracted to her for physical beauty. I married her because of her good heart. And now I find she is smart and loyal.


Next Report

I will give my next update as I progress on the path to normal erections. I definitely have the libido.

Lynn's e-mail address is: lmetts@klmfs.com