Prostate Cancer - My Story
Disclaimer: Follow your medical professional’s directions in all aspects of your condition whether it's beginning stages of prostate enlargement or you have been diagnosed with cancer.
Caution - Some comments in this story may not sound pleasant (and believe me it isn't), and that's why I put it in here to tell my whole story. If you’re offended now, you won't be if you’re going to have this operation. You will experience this.
It all started around the year 2005. I was having issues releasing urine and felt that my bladder was not emptying completely. My general practitioner doctor visit issued a prescription for Uraxatral. I asked how long would I have to take this and he said the rest of your life.
A few years went by and my Prostate-specific antigen (PSA) count was increasing. The number was above the normal by a count of one. Around 2007 I was sent an urologist and he asked me when I would turn 60, as the number is allowed to be a little larger the older one gets and also depends on your race.
He recommended a biopsy. This is done using a probe in the rectum and punching up to twelve holes into the prostate. This is done to get a core sample and it may or may not hit a cancer section of the prostate, if the prostate is, in fact, cancerous.
After the biopsy an antibiotic is required for 10 days. I went back to the doctor and all seemed okay so he decided to continue to monitor the PSA levels. So every six months I would get a PSA blood test and return to the doctor.
By 2012 the PSA levels were doing a yo-yo: sometimes the number was fourteen and sometimes the number was eight. I had another biopsy and this time the results showed an infection; thirty days’ worth of antibiotics. We kept on monitoring my PSA levels, which were again up and down and not level.
In 2014 we talked about some options and decided on a Transurethral Resection of the Prostate (TURP), which involved an instrument inserted up the urethra and "coring out" some of the inside of the prostate to help reduce its size. A biopsy was performed on the removed tissue and the results were negative. This procedure meant a reduced diet and overnight stay in the hospital, three days wearing a catheter, taking antibiotics and pain medication when needed and three weeks off work. Thankfully, there were no urine control issues after the catheter removal and I had a much better flow, but that went away after a year or so. Short lived one might say.
For the next two years we continued to monitor PSA levels. They always seemed to stay at seven or greater; increasing, decreasing, never constant. October 2016 meant another biopsy. At first, I asked to wait until January 2017, but when the doctor came back in the exam room I changed my mind and said let’s set it for the next time the technician comes to your office.
I had the third biopsy in October 2016. I returned to the doctor’s office a week later for the follow-up. Cancer was in one of six samples taken: 20% of the one sample was cancerous.
There is a scoring system called Gleason Scoring System for prostate cancer. My score was 3+3=6: a high normal, possibly slow spreading, not too aggressive. I figured that if cancer showed up two years after the TURP and the score was 6 it was aggressive enough for me.
For some reason I wasn't surprised, or maybe it didn't really sink in. I thought “Well, okay and so?” I know that the survival rate of prostate cancer is very good since mine was caught early I felt that I had a good chance of survival.
The doctor and I talked about different options and he encouraged me to get a second opinion. We talked about doing nothing and continue to monitor the PSA level. I didn't like that option. We talked about radiation treatment by placing pellets in the prostate. We talked about freezing the prostate a process called Cryotherapy. We also talked about total prostate removal Radical Proststetomy. I felt that was the best option for me because if the cancer is contained in the prostate there's a very good chance that it will be removed once the prostate is removed from the body.
The doctor ordered a CT scan. I went back to his office a week later to find out the results of the CT scan of my pelvis. He said the cancer was contained within the prostate and also told me there is a 72mm long cyst on my right kidney. He referred me to a world renown surgeon in Celebration, FL for the removal of the prostate. This surgeon has done over 10,000 prostate operations. Though I live about 60 miles from Celebration it is still a drive and a lot of traffic in the Orlando, FL, area, I read the information about the surgeon and the information about the robot, “da Vinci”, device. I looked at the videos on the surgeons website and on the “da Vinci” robot prostate removal process.
On November 21, 2016 I had an appointment with the surgeon. He told me what would happen. The surgeon has a team that only works this type of issue. He told me about the procedure: six holes in your abdomen, four for the surgeon and two for the technicians.
I would spent one night in the hospital, wear a catheter from four to seven days and an adult diaper for about two weeks, and then a pad for two more weeks.
I had to perform Kegel exercises prior to the procedure and start again three days after the catheter removal. This is to train your system to hold urine as the muscles above the prostate are no longer there. This will depend on each and every person. Of course the older you are the longer it will take.
I met with the case worker and she gave me a package of paperwork so big that I thought I was buying a house, a boat, and a car at the same time. Everything in there had to be done in a time frame.
This may not be the case with all surgeons but this is what the Doctor wanted. Far be it from me to question the man who has done over 10,000 operations.
My thoughts during the weeks and months after finding out I had prostate cancer and before the surgery may surprise you. For the first few weeks I was somewhat happy: happy that something finally showed up. After almost twelve years of enlarged prostate, three biopsies, medication, having urine control issues because of the bladder not being completely empty, having to use the restroom twelve times a day and getting up four to five times each night to use the restroom. The ordeal was finally coming to an end.
As the weeks turned into months depression set in. I felt I was alone with this. I felt my spouse didn't understand what I was going through and was about to go through. I felt I wasn't being understood. Yes, at times there were late night tears, but that too passed as the surgery date got closer. I had all my pre-op testing complete by mid-January with the exception of blood tests three weeks before the surgery date, and all that was left was waiting until April for the surgery date. That's when I had too much time to think. Even though I was still working which help pass the time, it's was always on my mind.
1. Second opinion of the biopsy I had in October, from a different lab and sent to the surgeon's office. I had to contact the original lab and give the information to the lab I wanted it sent to: also ensuring the insurance company would cover a second opinion. For some reason I was billed $1.40, the difference between Medicare and my second insurance.
2. Chest X-Ray
4. Complete History and physical with medical clearance
5. Cardiac Clearance with history and physical: in my case the cardiologist performed a cardiogram
6. MRI Closed 3T high field
7. NM Bone scan whole body
8. Three weeks before the surgery these tests were performed:
a. CBC W/DIFF
b. BMP, Blood
d. Urinalysis complete, reflex culture
e. Testosterone, Free + Total W/SHBG, SERUM
f. LH + FSH, Serum
g. Estradiol, Serum
h. Albumin, Serum or plasma
In early February I received a surgery date of 4 April 2017 at 12:30 P.M.
Two days before surgery I had to change my diet to light meals with no red meat. One day before surgery I was told to drink all liquids and have no solid foods. The day before the surgery I had to do a bowel prep in the morning and an enema before bed; shower before bed, after the enema, wash with disinfectant soap and sleep on fresh changed bedding. In the morning I had to do another disinfectant soap shower then we were off to the hospital.
Morning of: I arrived at the hospital and was met by the concierge. We went over some forms and I was then taken to the pre-op area. I think I was tagged with every tag the hospital had in its inventory. I told most of the nurses that I felt like I was on the nature channel with so many tags. I was given a hospital gown and compression socks to wear. The pre-op lab tech inserted an IV into my left hand. The anesthesiologist gave me some medication that would relax me. It must have worked because all I remember is maybe seeing the da Vinci robot and nothing else for the next four hours.
Post-op recovery: I remember someone saying to me over and over and over again “Breathe”. I was then taken to my room: a very bumpy ride and I got a little sick (as expected) from the anesthesia. I was very sleepy and the nurse kept coming in to check on me because I should have been awake and starting to sip water. Later that night the nurse told me that he was concerned that I wasn't awake enough and that maybe I was sensitive to the anesthesia.
About six hours later the nurse had me get up and walk around the floor of the ward. This makes your body release gas. It starts with stomach gas for the first few days. I didn't have much of an appetite and mainly sipped water and ate ice chips. I was released from the hospital around noon the next day with a lung exercise breathing device to help prevent pneumonia. I was to use this device at least ten times an hour during my waking hours for the next seven days.
Now I'm in recovery and have new concerns of not being able to control my bladder. Sometimes it seems okay and other times I experience leakage that I don’t immediately realize. Normal? Maybe so, but I have to give it some time. It's been thirty days since the catheter was removed and I am (one could say) 69 years-old so I’m not sure how long it may take to get that under control. Things are getting better and each day control is stronger. There is still leakage but not as bad as it was , so the healing process is moving in the right direction. From what I've read, it may take three months to one year to regain total conteinence.
Bowel movements are the worst even though you are given laxatives to take it didn't seem to be enough for me. They don't want you to strain as the bladder is now directly sewn to the urethra and they don't want the stitches to tear out. I eat a lot of fruit and drank prune juice to help with soften bowel movements.
The doctor ordered Viagra for one year; half doses three times a week for a month and then a full dose one day a week while taking the half doses two days a week. Hopefully your insurance plan covers the cost because this is very expensive. The company does offer 50% off when you send in a coupon. In my case I'm lucky enough that it's available with my drug plan. The reason for this is to help with blood flow to the genital area and to help with erectile dysfunction. Also the surgeon wrote a prescription for a Vacuum Erectile Device that you may have to pay for out of your pocket if your insurance doesn't cover. In my case neither of my insurers covered the cost, but since this surgeon has so many patents the company offers half off. So the cost isn't too bad. This, too, is to help with blood flow to the genital area and to help with erectile dysfunction.
I'll add more as the recovery process continues. I hope in some small way this will help you have a different outlook and a more knowledgeable experience for this type of operation. As I said in the first paragraph, follow your doctor’s instructions.
4 June Update - Followed-up with the surgeon May 24, all seems Okay. The doctor said he thinks he got all the cancer but will need monitored every three months for the next two years. PSA level was 0.01. I'm returning to my regular urologist and have an appointment in August. I'll provide feedback from that appointment.
10 August update - An appointment with my normal urologist reviled a PSA level of 0.014. This is good. We talked about the future and what to expect. He seems to think that it's taken care of but of course it needs to be monitored for a few years. So we set a schedule of at least every four months PSA and office visits. We both felt the removal of the prostate was the best option as compared to pellets or monitoring the PSA levels. Monitoring and not doing anything of course would only get worse in time.
We also talked about the cyst he saw on the CT scan last year. The next appointment in December he will order an ultrasound test and we will continue from there.
The next appointment is in December of this year 2017, and I'll make a comment at that time.
21 December update - The appointment went well. The PSA stayed the same at 0.014. We talked about keeping up the exercises. He performed a rectal examination to ensure there were no bumps and or lumps. All seems good, the next appointment is in 6 months and I'll make an update then.
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