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Personal stories

01.02.2018 6.61 18.08.17
 I was very nervous about the biopsy. My friend told me it 'wasn't too bad'. That helped but it is a scary thing to face, not only the procedure but facing the results after the procedure.
 I was given an antibiotic to take before the procedure and had to use a fleets enema just before the appointment. I got to the appointment and was very nervous. The nurse talked to me and told me the whole thing takes about 10 to 15 minutes. That helped to hear, how bad could it be if it was so fast?
 I was taken to the exam room and asked to just pull my pants and underwear down to my ankles and lay on my left side on the exam bed. I then had to move so my buttocks were kind of hanging off the edge of the bed towards the doctor. He was very reassuring and explained the procedure to me.
 He told me he was going to insert an ultrasound probe in my rectum and that it might be uncomfortable but shouldn't hurt. He told me the more I could relax the easier it would be. Easier said than done, but I tried and it was somewhat uncomfortable but it didn't hurt.
 He then told me he was going to numb the prostate and that I would feel s sting much like getting your mouth numbed at the dentist. This too wasn't too bad. After a minute or two he explained he was now going to take 12 core samples, the probe allowed him to shoot a needle through my colon into the prostate and obtain a sample.
 The first sample made me jump on the table. It didn't hurt as much as it surprised and scared me. There was a sound like spring being released, and a very minor poke, kind of like being hit with a rubber band. The other 11 cores went fast and some were a little more intense snap than others, but none was really painful. In about 10 minutes I was sitting up, pulling up my pants and on my way.
05.02.2018 6.61 18.08.17
 About 4 days later I received a call that I had prostate cancer and was asked to set up an appointment to see the doctor. I went to his office and he gave me my results. Out of 12 cores, 6 came back as cancerous. 5 of the 6 where Gleason score 3 + 4 and one was 4 + 3 giving me a score of 7b and T1c (tumor present, found in a needle biopsy performed due to an elevated serum PSA but not detectable clinically). I was told that was moderate as far as the aggressiveness of the cancer.
 The doctor had written on my results the following:
Robotic surgery to remove the prostate
Seed implant
Beam radiation
 He told me that the above three options were the only ones he felt were an option for me. He told me if I chose surgery all I needed to do was schedule it. If I chose one of the other options he would refer me to another doctor since he didn't do those procedures. He stood up held out his hand and said: “Let me know what you choose.” And at that, the appointment was over.

Alone and Adrift
 I walked out of the office with my head spinning. I had cancer, I had to choose a treatment and had no idea how to do so. I got on the Internet and started looking at Gleason scores, treatments, everything I could find on prostate cancer. My friend had sent me the website: and I now devoured the information. The first thing I learned was to step back, take a breath and realize this isn't a decision that has to be made in a day, or a week or even a month. Take your time, talk to people, read as much as you can and be informed.
10.02.2018 6.61 18.08.17
 The fall of 2017 during a routine physical my PSA was at 4.3, this was the first time it had been above a 4. My doctor wanted to check it again in a month and it was still 4.3. He tested it again in 3 months and it was 4.7. At that point, he sent me to a Urologist. I kept arguing that 4.7 was still pretty low and I didn't think I needed to see a Urologist. I even found sites on the Internet that claimed you shouldn't even have a PSA because they aren't accurate. I guess you could say I was in denial and didn't want to face it or worry about it.
 I had an appointment with the Urologist and he did a rectal exam and told me my prostate felt normal size but that he recommended a biopsy just to be safe since my PSA was rising.
 I had a friend at work who had been diagnosed with prostate cancer the year before, he convinced me to get the biopsy, so I agreed to the biopsy.
01.05.2018 6.61 18.08.17
Getting a Second Opinion
 I was 64 and ½ when diagnosed and some information said that if the patient was over 65 the chances of dying from something else before the prostate cancer took you were well over 50%. I guess I was still in denial and wanted to believe I could just sit back and ignore this, but thankfully I decided to at least get a second opinion. My friend who had had robotic prostate surgery suggested I speak to his doctor.
 I set up an appointment to see his doctor and had my records and results released to his office. When we met he spent over an hour with me, talking and explaining different options. I found him self-assured and very open with his advice. Before I get to what we talked about, let me say after the hour conversation I changed doctors and became his patient.
 For a little background, at the time I was diagnosed I was obese, 6 feet tall and weighed approximately 315 pounds. I had also been diagnosed with Gout in January and had lost about 11 pounds on a Gout diet. My first Urologist never mentioned my weight at all in our short conversation.
 Dr. L, the Urologist I visited for my second opinion told me, that of the three options the first doctor gave me, he wouldn't recommend the seed implanting procedure. He told me that it had kind of fallen out of favor as there were some problems with placement and even migration of the seeds. He felt that either Radical Prostatectomy or External Beam Radiation were my best options.
 He told me because of my weight he wouldn't be comfortable doing a Robotic Radical Prostatectomy. He explained that during robotic surgery the patient is tilted head down at a 45-degree angle and that this is a very dangerous position for someone who is overweight. So he felt my best options were Open Radical Prostatectomy where the patient is kept level or External Beam Radiation. He assured me that both were good options with very similar initial outcomes and even very similar long-term outcomes. However, the one big difference was that if cancer returned after either treatment, then there was a big difference. If I had my prostate removed (Radical Prostatectomy) and cancer returned I would still have External Beam Radiation as a valid option. But if I went with External Beam Radiation in the first place and cancer returned then my options were limited, you can't have a second round of radiation and the radiation makes the prostate very hard to remove after the radiation.
 This meant that if I had my prostate removed and cancer came back, I had External Beam Radiation in my back pocket that I could still use. That convinced me to go with open surgery.
 Dr. L felt that I had time and he would like to give me 3 months to see if I could lose some weight. We agreed that I would attempt to get down to 270 pounds before surgery.
 I left his office feeling assured for the first time since my diagnoses. I also felt like I had a partner in this who cared as much as I did and was committed to my outcome. This made all the difference in the world.
01.08.2018 7.05 24.07.18
 I again hit the Internet to see how I could speed up my weight loss. I had to be somewhat careful because if I did a crash diet it would bring on a Gout attack. What I ended up doing was what I call a modified Keto diet. Very low carb (10% or less of my daily calories – most of those from above ground vegetables) the rest of my calories from protein and fats. I gave up low-fat foods and went with full-fat dairy, etc... I also started drinking at least 2 tablespoons of Apple Cider Vinegar in water at least 2 times a day. I also did intermittent fasting, I would only eat between noon and 6 PM. I hesitate to even call this a diet, it was a lifestyle change and I started losing about 2 pounds a week. Some weeks I would lose 5 pounds and some weeks I would stay the same, but it all worked out to about 2 to 3 pounds per week average.
 I was 280 pounds at my three-month follow-up. Dr. L said he felt that I was close enough that we could safely do the open surgery. He said it would be anywhere from 6 to 8 more weeks before I would get on the schedule and that would give me more time to lose more weight.
01.10.2018 7.05 24.07.18
 The day of surgery I weighed in at the hospital 262! The surgery lasted about 3 hours and another hour in recovery. I had little pain after surgery, uncomfortable but not really pain. I spent 2 nights in the hospital and then was discharged with a Foley catheter. I found I couldn't lay flat, it stretched my abdomen and made my incision hurt. I slept in a recliner for the first three days. I felt very weak and tired and didn't feel much like eating so I didn't eat much. On the third day home I took a shower and started feeling faint. Before I could do anything I passed out and spent 5 hours in the ER only to find out that I had not been eating enough calories to keep my body functioning. I had to start forcing myself to eat, but I quickly got back some strength and started feeling much better.
16.10.2018 7.05 24.07.18
15 Days after Surgery
 Got the catheter and staples removed today. Not a pleasant experience but not bad either. Incontinence when standing up from a sitting position, laughing, sneezing or coughing. Quite a bit of leakage, but able to empty the bladder easily. Using cheap diapers in my underwear, and changing them often.
17.10.2018 7.05 24.07.18
Day 2 Post Catheter Removal
 Stayed up late watching baseball playoffs and had too much iced tea. When I woke up I didn't have time to get up before my bladder released. Learned to cut down on fluids a few hours before bedtime and get rest, being too tired isn't good. Seeing a little more control today, not leaking as badly when standing up.
18.10.2018 7.05 24.07.18
Day 3 Post Catheter Removal
 Much more bladder control, drips, and dribbles but no loss of control when standing from a sitting position, no problem at night.
20.10.2018 7.05 24.07.18
Day 5 Post Catheter Removal
 Control continues to get better, but there are ups and downs.
29.10.2018 7.05 24.07.18
1 Month since Open Surgery

I am doing very well. Minor soreness after driving and walking around a store. I also found that I become exhausted must faster than the slow easy walking I was doing at home. The soreness is in the groin where the muscles were cut, not bad just like sore muscle pain. Bladder control is coming along very well, minor dribbling. The most dribbling happens at night when I wake up and need to urinate and have to sit up in bed and then stand up. I think using the muscles to get up forces some urine out, but it seems to be less each night.

I haven't had a repeat PSA yet, that will be at the 3 month mark. I am very happy with my decision to have open surgery. I hope not to need any further treatment, but it is nice to know if I do, I still have radiation as a viable option.

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