I wanted to write to give those men that are following me hope. I was only 50 when I was diagnosed with Prostate Cancer.
My PSA has been over 4 for several years. I had a negative biopsy five years ago. The first biopsy had more discomfort than I expected. That is medical lingo for it hurt. The Urologist doing the biopsy did not use a numbing agent prior to doing the biopsy. My primary care doctor wanted me to go back to the Urologist two years ago to get another biopsy. I went to the Urologist office and talked about the discomfort that I experienced during the previous biopsy. He wrote me a prescription for three tablets of Tylenol-3 (Tylenol with 5mg of codeine). After thinking about it overnight, I called and cancelled the appointment. Then this April, my primary care doctor again wanted me to go back to the Urologist. This time I went to UT Southwestern Medical Center in Dallas. The biopsy experience there was night and day better. They used Lidocaine as a local anesthetic before doing the biopsy.
Lesson for men following me: If you need a biopsy; ask the Urologist if he plans to use a local anesthetic. If he says no, find a better Urologist.
The biopsy came back positive, 5 of 18 cores were Gleason of 7 (3+4) with up to 20% of the cells being cancerous. It also showed cancer on both the left and right sides. Since it was not slow moving (Gleason of 6 or less) [it unusual to have a Gleason Score lower than 6, which is the 'entry level' since January 2010. Prior to that 'entry level' was 2] and it was more than just one or two cores, I needed to take action. I selected robotic surgery at UT Southwestern Medical center in Dallas. I ruled out the radiation treatments because they seemed less certain of getting rid of the cancer and after radiation, surgery is a real mess.
I was very pleased with my surgery. Very little pain, waked around the entire hospital floor 12 hours after surgery and went home the next day. I will have a Foley in for 11 days and have 18 days scheduled off work. I likely could go back work earlier, but I have unused sick days and my FMLA request would cover me for up to 30 days if I wanted.
Now the good news for men following me: Today is one week after my surgery. I still have the Foley in but had a rather full erection and a very nice climax. I also got the pathology report that shows the cancer was totally contained within the prostate with 1 mm margins.
I will be happy to email with anyone that wants to discuss my outcome, and hopefully help them feel better about their decision.
I will also follow-up with updates to my progress on this site.
It is now 8 weeks post-op and I have several items of good news to report:
1. My 6 week PSA was < .05 which is the lowest measure my lab shows for a PSA
2. ED has not been a problem. On 0 to 10 with 10 being firm like when I was a teen and 6 being firm enough for intercourse, I have been getting 6 - 8 most of the time. [See Glen Leslie on this subject!] The doctor has me on 20mg Cialis three times a week. No side effects from the Cialis. Out of pocket cost looks like about $70 a month after insurance for me. Plan ahead for your medical flex account if you are near annual enrollment. Check with your insurance company, some don't cover it.
3. I leak a little every day. However, I am generally at one pad a day. I work at a desk 7 a.m. to 4 p.m. and one pad always covers that. Sometimes when I get home, I may change for the evening. I leak very little before noon and then a little more as the day goes on. No leakage at night at all since I am lying down.
Three months post-op update: I had my second PSA test and it was undetectable.
No problem with ED. I told the doctor my erections were just as good three days after Cialis as the day I would take the pill. He said it was OK to stop taking them if I did not need them. I would rate them as an 8 on a 10 point scale now.
I still have a little stress incontinence. Mostly when I cough or pass gas. I have gone several days without pads, but most days I still wear one. Never need more than one. Usually just a teaspoon all day as far as the leakage goes. I have about 20 pads left in the bag I ordered, I will have to decide if I want to reorder. Initially I used Depends, but after reading others here, I switched to Tena Guards for Men. I agree they are much more comfortable.
It is now nine months post-op and I don't have troubles with impotence or incontinence. PSA is still zero. Life is great.
I stopped wearing the pads the day after I posted my three month update. I realized I was just concerned that I might leak.
Summary: All good news at 9 months.
I just got my new PSA score yesterday. It us up from 0.06 to 0.07. I know that it does not count as a recurrence until it reaches 0.20 (some say 0.10), but I do wish that it had stayed at 0.06 or dropped back down to 0.05. I am 54 years old, and my doctor has started me back on testosterone injections a few months ago at my request. Recent studies seem to indicate that having your testosterone in a normal level (around 500 - 700 for a guy my age) is a good thing and involves no more risk for a prostate cancer survivor than a low testosterone of 150. If you do get a recurrence, then you may what to get hormone treatments to drop your testosterone down to near zero, because that does slow the growth.
I feel good and have very minor incontinence when I sneeze or sometimes a little at night if I have drank lots of water within two hours of going to bed. Erections are fine, the Cialis (half of a 20mg tablet) helps but I can do fine without the Cialis too.
I am 4 years post operation this month. Life is great. PSA back down to 0.06 a few months ago. No side effects. However, when I go to the men's room I can empty my bladder faster than most men. See there are actually benefits to having your prostate removed...
No urine leakage, No ED issues, overall a very positive time health wise. I am still taking 10 mg Cialis a few times a week because it helps make erections easier. I am still taking 200mg testosterone shots every two weeks. They help my desire for sex and give me more energy for life in general. I am 55 years old.
Five years Cancer Free now. My PSA has gone up to 0.10 and 0.11 since I have been on the testosterone shots. I expected the rise, to me it does not indicate a return of the Cancer, but rather just an increased PSA due to the testosterone. However, I will continue to have it checked by the same lab every six months. I want to watch for doubling time. If it doubles in less than two years, I will be more concerned.
Continued no leakage, and no ED.
It has been six years since I had my prostate removed. I am 57 years old now and have very little side effects. Maybe a teaspoon of urine twice a month, that is the extent of my urine side effects. I don't have any real erectile dysfunction issues. I do still take 10 mg Cialis (half of a 20 mg tablet) a few times a week. It is not required for me to function, but it does help make me quicker to rise.
Overall, I am very happy with the outcome. My PSA is up from 0.09 to 0.12 but I am not concerned. I am on Testosterone replacement therapy and that causes my PSA to read higher. I get my PSA checked twice a year, and just continue to enjoy life.
Tom's e-mail address is: tkc11 AT pobox.com (replace "AT" with "@")