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Wayne Kullberg and Cynthia live in Texas, USA. He was 60 when he was diagnosed on January 4, 2006 and his initial PSA was 4.35 ng/ml, his Gleason Score was 3+3=6 and he was staged T1c. His choice of treatment was Laparoscopic Robotic Surgery. Here is his story:


This is written at 14 weeks post op.

I was diagnosed with prostate cancer from a biopsy taken on Januray 4, 2006. I had two PSA tests in June of 2005 with readings of 2.20 ng/ml and 3.40 ng/ml (one was a periodic test and the other was for life insurance application). My PSA 6 months later in December of 2005 was 4.35 ng/ml, which was the reason for the biopsy.

My diagnosis was T1c, Gleason 3+3, on the left side only.

I was a candidate for both radiation and surgery. I did not consider any other treatment choices. At the very start I was attracted to radiation treatment - primarily because it avoided the event of a major surgery. I consulted with an oncologist, radiologist and an urologist who treated by both radiation and surgery, depending on the patient. These consultations and internet research eventually lead me to the choice of da Vinci robotic surgery performed by Dr. Ash Tewari at New York Presbyterian Hospital.

The following were my primary considerations in my decision:

1. First and foremost, I wanted the treatment to give me the best probability of a cure. Comparisons between surgery and the various radiation choices are difficult - mainly because of the range of radiation treatments and what seemed to me to be more loosely defined or varied definitions of a radiation "cure". Whereas the definition of cure for surgery was quite simple - an undetectable PSA for 10 years. However, in comparison attempts it appeared to me that surgery cure rate was always at least equal to or better than radiation.

2. I wanted the quickest and most definitive probability of whether my cancer was contained within the prostate or extended beyond the prostate capsule. The pathology of the removed prostate and surrounding tissue would provide me immediate (within a week) indication of whether there was any detectable metastasis. By 8 weeks after surgical removal of the prostate, an undetectable PSA will give an indication of the greatest probability that all the cancer was contained and removed with the prostate. If there was evidence of metastasis either by pathology or follow up PSAs, a surgery treatment would allow me to immediately (or from the 8 weeks post op PSA) start considering advanced treatment choices. On the other hand, radiation treatments would not allow me this timely knowledge of cancer containment or metastasis. Since with radiation treatment there is no pathology available from the prostate or surrounding tissue, there is only follow up PSAs to go by. I read on the RCOG website (Dr. Critz) that the mean time for the PSA following radiation treatment to reach the level of indicated cure is 2 years. I simply did not want to wait that long to know if I was potentially cured.

3. I chose robotic surgery because of the less invasiveness as compared to open, as well as the minimal loss of blood, less anticipated pain, and quicker recovery time. I made the assumption that, other factors being equal, cure rates would be similar for open and robotic.

4. On practically every website giving advice on prostate cancer treatment choices, the point was emphatically made that the singular most important decision factor was the skill of the doctor, regardless of your treatment choice. I made the assumption that, once up on the da Vinci learning curve, that a surgeon's skill level with robotics would be similar to his skill level at open surgery.

5. Because it is virtually impossible for any layman to assess when a surgeon is far enough on the robotic learning curve, and because of the relative short history of the da Vinci machine (about 5 years in the U.S.), I only considered the top two names I found associated with robotics. These were Dr. Menon at Henry Ford in Detroit and Dr. Tewari at New York Presbyterian. These were both surgeons that Don Cooley recommended to me and Don has recently added a robotics category to his "artists" web page, listing both of these men.

6. I kept seeing Dr. Tewari's name in articles and studies I was reviewing about robotics. I became convinced that in the area of robotics, he was a known quantity, and clearly among those at the top of the field. In a phone conversation with Dr. Tewari I learned that is his surgical positive margins were less that 3% which was much better than for surgery in general. He took intra-operative frozen sections to determine during surgery if there was any cancer in the tissue surrounding the removed prostate. If the pathology indicated cancer in this area, he would remove more tissue. Prior to surgery, we wanted me to have an endorectal MRI as a further diagnostic aid. I learned that in his previous approximate 100 operations, he had been employing a new technique to allow a quicker return of continence. He said this have been successful in 40% of his patients to date.

I had my surgery on February 24, 2006, 7 ½ weeks after my biopsy. All indications at this date (14 weeks post op) are that the surgery has successfully removed the cancer from my body. The pathology reports showed no cancer in the surrounding tissues, clear margins, and all the cancer contained within the removed prostate. The surgeon reported that both nerves were spared. My follow up ultra sensitive PSA at 8 weeks post op was less than 0.003 ng/ml. For this I am eternally grateful.

I had read many favorable accounts of men who had robotic surgery recovering with minimal pain and a quick recovery time. I developed this expectation for my own surgery. This was not to be the case. In several areas my recovery was not normal. The following were the notable issues:

1. I required morphine when waking after surgery because of back pains resulting from the position on the operating table. I have a lower back problem, so this was not a surprise for me.

2. My hospital time was normal. Post op day 1 was good. Ten hours after the surgery I was up and starting my mile of walking. I did have some blood clots in the bladder which stopped the flow of urine into the catheter. Several times I had to have my bladder irrigated to remove the clots. I was released about 26 hours after starting the surgery.

3. On post op day 2 I developed bladder spasms, which at times were quite painful. Apparently, I have a rather sensitive bladder. I had no idea of what was causing the pain. Unsure of what I should be expecting, and because it was on a weekend, I waited until post op day 3 to get help. The pain had become constant and severe enough that I eventually had to the ER at 3:00 AM and get morphine for the pain. Because of the time of day, it took a while to get Dr. Tewari involved, but when learning of my condition he correctly identified the problem and treated accordingly. This event set back my internal healing by a good week I would guess. Following this, I had only one other bout of bladder spasms which lasted only on hour. Bladder spasms are not very common, but I think it runs in my family as my sister has similar problems.

4. By post op day 4 I developed a new abdominal pain, and my belly looked like I was 8 months pregnant. Again I didn't know what was causing the pain. I returned to Dr. Tewari's office and he correctly identified that I had become constipated. So started with the suppositories was well as prune juice, milk of magnesia and mineral oil. At about 7 days post op, my bowels were getting pretty much back on track. Getting the bowels working properly is not an uncommon issue following a major surgery, and was complicated by the additional morphine I had taken.

5. I was expecting my catheter to be removed at 7 days after surgery. Probably because of my complications, my JP drain filled much faster that what I was expecting. The first several days it had to be emptied at least every two hours. It wasn't until post op day 15 to 16 that the flow rate into the JP drain had slowed to the point indicating I could have the catheter removed. On post op day 17 I had a cystogram which showed no urine leakage and had the catheter removed, but left the JP drain in one more day just to be sure.

6. About post op day 4 my scrotum enlarged to the size of a big grapefruit. It was not at all painful and the only challenge was one of containment. The swelling took several days to go away. I had prior knowledge of this, so was not surprised.

During my recovery, at catheter removal plus two weeks, I was continent during my sleep and experiencing just a bit of stress incontinence during my daytime activities. Urinating was much easier than prior to surgery. At catheter removal, I started on 50mg of Viagra daily, but after trying all three common ED meds, I switched to 10mg of Cialis 3 times a week. At the post op plus 14 week mark I am getting irregular partial nocturnal erections (maybe 25%) and some return of libido. I use a VED daily for therapy, but not yet for intercourse. A blood test at 4 weeks post op indicated a slight anemia, which was probably the cause of my fatiguing somewhat easily. By about 8 weeks post op I had returned to normal energy level and pre-surgery physical activities. I currently rate my continence at 99%. Basically, it is not an issue.

I will update again after my next PSA test.

UPDATED

September 2007

 

 

This update is written at 19 months post op.

My PSA remains undetectable - <.003. This still remains the bottom line for me.

My libido has returned to about the same as pre op, or at least as how I remember it. Over the last 19 months, my ED has slowly and consistently improved. How much it may improve over my present state is anyone's guess. But I would rate it at about 85% in general. I still use Cialis at 10mg, three times a week as a therapeutic dose. I feel certain that a normal dose of Cialis or some other ED med would have an increased affect on my erection ability. I used the VED for therapy for about a year, but have discontinued its use - primarily because of my work schedule and living situation. But I feel my erection ability has improved enough to the point where I am comfortable letting the VED go for the time being.

At this point, continence is generally not a consideration. I initially had some stress incontinence, but that has mostly disappeared lately. I still sleep with a pad under me. A couple months ago I wet the bed shortly before time to get up. My bladder was full but I was still too sleepy to get up and as a result I leaked a bit. Again, this has been rare and is mostly not a consideration.

There is one area of incontinence however that has appeared that initially was not a problem. I have noticed as my libido has returned that there are occasions when during sexual arousal that I will leak. My Uro says that this sometime happens. But it really catches you by surprise.

One thing that has been a real plus for me is that I now regularly sleep through the night without having to get up to urinate. For 20 years prior to my surgery, I had very rarely slept through the night without having to go once and often several times. So for me to sleep through the night now is something I really like. Also, when I urinate, my flow is good and my bladder empties well. In this regard, I don't miss my prostate one bit!!!

Again, should any reading this want to correspond or call me, please do so.

 

UPDATED

December 2008

 

 

This update is written in early December, 2008. Next February I will be 3 years post op.

My last quarterly PSA was <0.01 ng/mL. It has varied from <0.01 to 0.04 over the past year.

I have occasional stress incontinence, but it minimal and so basically not an issue.

My erection ability still continues to improve. I continue to take 10 Mg of Cialis three times a week. I get 20 mg pills, cut in half and take on Mon, Wed and Fri. Using this method, my insurance covers it.

Anyone wishing to contact me may do so.

Best wishes to all, Wayne R. Kullberg .

My email has changed to wrkullberg@verizon.net.

My phone remains 972-897-6693.