YANA - YOU ARE NOT ALONE NOW

PROSTATE CANCER SUPPORT SITE

BRONZE

Chris Merrow and Deb Koltenuk live in Connecticut, United States. He was 53 when he was diagnosed on 1 March 2005. His intial PSA was 5.0 ng/ml, his Gleason Score was 4+3 = 7 and he was staged as T1c. His choice of treatment was Surgery. Here is his story:

I am writing this on March 30, 2005. I was diagnosed on March 1. This was the result of an annual physical that showed my PSA had increased from 3.0 ng/ml to 5.0 ng/ml in the last year. I made an appointment with a urologist the following week for a biopsy. He called me days later with the results- cancer in 2 of the 8 cores sampled and a Gleason score of 7 (4+3). We set up an appointment for a few days later to sit down with me and my wife to discuss my case and treatment options.

At first I wasn't really phased by this. I had known several men who have been treated for prostate cancer who seemed to be doing just fine.

As I dived into the literature and began to research my situation my level of anxiety started to increase. I realized that this was to be a life changing experience.

I am 53. I retired 6 years ago. I was in government, my last job was as the HIV/AIDS Administrator for the most of the State of Connecticut. This gives me an all too familar knowledge of medical jargon, the vocabulary of death and dying, and the nuances of the medical establishment. I was able to retire earlier because my wife is the CFO of a division of a Fortune 500 company and my salary as a civil servant had always paled by comparison.

After retiring my main occupation became playing tournament tennis. I have been ranking in the top 10 of men's senior tennis in New England for the last 5 years, To play at this level I need to be in top shape. My routine has had me in the gym 3 days a week, lifting weights and doing cardio and on the court at least 3 other days. I am in great shape for someone my age, I regard myself as a semi-professional athlete.

There was really no debate as to my course of action, the only decision was whether to have robotic or open surgery. This was decided for me by the discovery of two small hernias during the course of subsequent exams. I can get the hernias repaired at the same time with open surgery and not with robotic.

The big decision for me became who was to do the surgery and where I was going to have it done. I live in Hartford Connecticut which is equidistant form New York and Boston. I could not find adequate data bases on surgeons in those cities, nor for surgeons in Hartford. I was forced to rely on anecdotal information from doctors who are friends and a few aquaintances who have gone the route. After processing this I chose to have the surgery done in Hartford by Dr. Vincent Laudone. I am scheduled to go in 8 days from today, April 6.

Right now I am trying to get my body ready for the ordeal. I am decafffinating, I have quit drinking, I am trying to keep up my exercise regimen. I have a feeling getting off caffeine is important, caffeine withdrawals are difficult and from what I have read it is not a good idea to do caffeine after surgery.

I find I care little about the potential side effects. I care only, perhaps morbidly about margins and the spread of the disease. My mother died recently of lung cancer, it had spread from her throat, and there was months of talk of positive and negative margins, and the ubiqutious "did we get alls", phrases I never want to hear again.

I am dreading the catheter. I am a light and difficult sleeper, I have never been able to sleep on my back. I think this is going to drive me nuts. I am debating the wisdom of getting a supply of ambien and valium for this period, wondering how this drugs will affect my recovery.

This is where I am now. I have valued reading the experiences of others on this site. Hopefully when I update my post I will have a good result to report.

 

UPDATED

June 2006

 

The continuation of my story.

The good news is my PSA is >0. I became almost completely continent from the time the catheter was removed - 8 days after surgery. I had needlessly gone out and bought a case of Depends, a plastic mattress cover and other materials I thought I would need but didn’t. My erectile function fully returned after about a month. More on that later. Eight weeks after surgery I was able to play a major tennis tournament, I am 54 and have been ranked in the top 10 in men’s senior tennis in New England for 6 of the last 7 years - so I was in really good shape prior to surgery. I won my match 4-6. 6-4 7-5 in the third set on a 102 F degree day. It was, granted, too much. I was barely able to drive home, defaulted the next round, and was prone for a day or so. The guy I beat Errol Coard was one of the first Afro Americans to play Wimbledon. That was truly my Lance Armstrong moment, an amazing high.

From this one can conclude that my recovery was miraculous and all is good. I should be a poster boy for the success of surgery-I had an RPP because I had two hernias done at the same time-discount rate by the way, and didn't go the robotic route.

But all was not totally well. After surgery I developed colonic edema which kept me in the hospital an extra six days, it was quite painful, and it kept my thumb on the morphine machine. I blew up so I looked like I was about 10 months pregnant. Then, after I went back to get the catheter removed, I reread some of the material the doctor had given me and I noticed a section that said call the office immediately if you experience any leg pain. I thought I had a simple pulled muscle but called nevertheless and they said come done here immediately for an echo ultrasound. As feared I had a blood clot in my leg. Fortunately it was in a small vein below the knee. But if one reads the literature on blood clots, the chance of developing a pulmonary embolism, one will scare one’s silly. It is a more serious condition than the prostate cancer itself, with a 20% mortality. So we start 4 weeks of treatment for the clot. The doctor advised that walking, with heavy support hose was good, so I walked my ass off, getting up to about 5 miles a day 3 weeks after surgery, which helped considerably with the speed of my recovery.

So my main advice to your readers here is that IF YOU HAVE LEG PAIN POST SURGERY CALL YOU DOCTOR IMMEDIATELY.

The second strong piece of advice I want to pass on is that my biopsy results pre-surgery showed that I had a Gleason 7-(4+3). My post surgery results showed that 10 percent of my main tumor was Gleason 5. Thank God it was fully encapsulated. As we all know if Gleason 5 cancer gets out of the prostate, one’s mortality rate soars. My surgeon said my cancer was right at the margin. So again I am extremely lucky. If I had waited and the Gleason 5 got into my lymphs in all likelihood I wouldn’t be writing this today. So my advice to those on the fence is DON'T WAIT.

So again, I am lucky and every one reading this should think I should be extremely grateful. I am sometimes. But other times I sink into a dark depression. Even thought my erectile function returned my libido didn’t. My sex drive disappeared and remains lost. I can stimulate myself through pornography but not naturally. For me this is a major issue for I was always a highly sexual man, even though married and faithful, I loved to flirt, to be desirable, to play the game. That is all gone. Again, one may say big deal, but each of us has our own hierarchy of needs.

This caused a depression I previously had to return, and started me drinking heavily. This lasted for a few months. I gained close to 30 pounds. I grew more disgusted with myself. Finally this April I hit the wall. Something had to give. So on April 1st, my wife’s birthday is April 2nd, I stopped drinking and started working out hard again. I am retired, so I am able to work out or play tennis close to 30 hours a week. It is now June 1, 2006 and I am still sober. (I have a 1000 bottle wine cellar now with a padlock on it-I really liked to drink). I have lost 12 pounds and am slowly getting back into shape.

But honestly, everyday is a struggle, an example of the AA adage a day at a time. I know I have much to be thankful about, I have been extremely lucky, maybe that is part of the problem. But as of today, that is where I am. Best of luck to anyone who reads this, if I can help anyone in anyway, please don’t hesitate to email me.

 

UPDATED

January 2008

 

 

Its been a over a year since I last posted. All is good. I want to update a couple of things I think important

In my post one year visit to my urology group, I was passed on to a different doctor. He took a look at my info, and told me that I was in fact of Gleason 9 and not 7. I had not discussed the post op biopsy with the doctors before. A little over 5% of my tumor was Gleason 5, which upped my score. This caused me considerable consternation.

I wanted to mention this because my tumor was right at the edge I barely had clean margins. If I had waited at all, I scheduled the surgery as soon as I could after the initial biopsy. I think I wouldn't be here today writing this, the Gleason 5 cells would have been out of the box.

I write this to stress the danger of delaying further treatment if you are younger than 65 with a Gleason score of 7 or above. I first thought I was a 7 and was really a 9, the mortality tables are much different. Although if I had known the 8 week wait for surgery after the biopsy results came in would have been far more nerve wracking. So maybe all turned out for the best. Although it still gives me the shivers to think I was carrying Gleason 5 cells, if my PSA ever comes back with a +0 reading I think I maybe in huge trouble.

 

UPDATED

May 2008

 

 

Its now May of 2008. I just had my blood drawn and presume I am >0 but 3 years out this still creates anxiety. Every time I have a blood test I insist the lab mail me a copy of the results and not just to my physician.

It's a distant anxiety, not really pressing, but its still there. I really wonder if it is ever going to go away.

The reason I am updating is I want to briefly muse on the process of aging. As noted earlier I am an athlete, in better shape now than when I first posted, because I have add yoga to my routine. I can't recommend doing Yoga more strongly for anyone, especially someone confronting and recovery from a life changing disease like cancer. Done right with the right teacher, Yoga brings peace, equanimity, clearer focus, there are a myriad of benefits. I don't wish to sound preachy, of course this is just my opinion, but this site is about shared experiences all of which are relative.

Cancer has become just one of many health issues I am confronting as I age. 6 months ago I learned I had glaucoma which means daily eye drops for the rest of my life. Last month I had a wicked attack of diverticulitis, which was extremely painful until I got diagnosed by a CT scan and fed antibiotics for 2 weeks. In looking up the causes of the disease there were only three, lack of fiber in your diet, lack of exercise or age. It surely wasn't the latter two so it was simply age. The CT scan I had for this revealed "significant calcification of left anterior descending coronary artery". A stress test and more diagnostic work is scheduled next week. I have no idea what this is going to led to. Again the cause is simply age. I am only 56.

The prostate cancer was the first great insult to my body that I had ever suffered. The last three years has seemed like one new event after another, with little let up in between. My experience with the cancer has inured or hardened me so I can more readily take each new blow in stride. And that's what aging is looking like right now, a continuing series of insults and indignities.

I desperately long for a year or so free from further bad news, from new disease, I just want to feel healthy and reasonably normal for a longish period of time. I am trying not to grow depressed by the potential realization that this is not going to happen. That here on out is going to be a near constant parade of one thing after another.

But hey, if you are reading this, we're all still alive. And that is all, in the end, that really matters.

shanti/peace

chris m

 

UPDATED

September 2009

 

 

In the last year there have been a couple of developments worth mentioning. In the months after my initial surgery, open not robotic because I had a couple of hernias repaired at the same time, I noticed that my left testicle was significantly enlarged and the tissue surrounding it in the scrotum was swollen. For the next two years it remained the same, it was not really bothersome, I discussed it with my urologist in each check, and we decided just to leave it alone. Then last spring 2008, the swelling increased and the testicle became painful. I went to see my urologist, and he said I had epididymitis, an infection/inflammation of the epididymis which is the tissue surrounding and supporting the testicle. The usual treatment for this is antibiotics. I did two rounds-60 days of Leviquin with no relief. The next step is an epididymectomy which is the surgical removal of the epididymis which I had done at the end of last year.

I realize this is rather arcane. I never knew such body parts existed. But, this was a definitely a post prostatectomy condition and I make mention of it here because some one else might develop it and not have the faintest idea what is going on. It is relatively rare. But it is painful, and for me, psychologically, adding insult to injury. As I previously mentioned I am, or perhaps was, a tournament tennis player. I lost last season to the epididymitis, it was just to painful to play with a swollen infected scrotum. And this season I ripped some knee ligaments which required surgery from which I am still recovering.

Sorry to bitch but this is getting old. I seem to be in a surgery a year mode. But, I keep telling myself that I lived very hard, inflicted a lot of abuse on my body, and I was going to have to pay my dues sooner or later. I guess its sooner. I am trying to make peace with aging, with the fact that my body can't do what it once did athletically, and sexually, which is still hard to cope with four years post surgery. I am not enduring this as gracefully as I thought I would. It is a constant depressing struggle. And yea, I know, the cancer didn't kill me, I should look at the bright side, I do, but there are times when that is not quite enough, and I get pissed off, and wish all this had never happened.

shanti

chris .

My e-mail address is: chris.merrow@comcast.net