I have not yet been diagnosed, but due to a strong family history of prostate cancer, and my recent PSA velocity and biopsy, wanted to begin a story.
Family history: I'm 53 and the youngest of 6 in the family. My brother is 2nd from the oldest, at 66. The other 4 are sisters. My brother, who is 66, was diagnosed in April 2014, I believe with Gleason 3+3 or 3+4, and T1c if I remember correctly, and chose to have his prostate removed a month or so afterward using the robot with Dr. Montoya at the helm, in Denver. My brothers urgency to have it removed was due to the fact that our dad died of prostate cancer at 74 years old, and it wasn't a good death, if there is any. My brother had been religiously testing his PSA and DRE yearly since he was 40, and a rapid rise in his PSA from 2-ish to over 4 is what initiated his biopsy and diagnosis. Also, my brother has had urinary frequency issues for a couple years prior - both him and my dad were big coffee drinkers, which I'm sure didn't help. My dad's diagnosis came because one of his legs had begun to swell making it visibly larger than the other, and he must've had some urgency because I remember him pulling over on the side of the road to pee multiple times when I would ride with him. This of course was back in the early 80's. I believe the leg swelling was caused by the bladder or kidneys not emptying fully. I believe by the time of the diagnosis, the cancer had spread outside the prostate making treatment difficult or impossible. Also, my dad's brother had prostate cancer, and was able to have his removed, and he lived to be 90 years old from what I'm told. So the family history is disturbingly strong. I've read they are linking breast cancer in a family to prostate cancer as well. My mother did not have breast cancer, but she had colon cancer which was caught early enough to have it removed while still encapsulated, so she required no other treatment than the removal of about 12 inches of colon. My dad's sister did have and died of breast cancer though. If I had to speculate, I'd say I would tend to take after my mothers side of the family. There are no other breast cancers in the family. Several in my family have to supplement due to low thyroid, including my brother.
I'm 53 and in pretty good health. I've been kind of in denial about the prostate thing, so I reluctantly started having the yearly physicals, DRE's, and PSA testing at about 50 years old. I initially - a couple years ago, went to my general practitioner to see what was causing me to have very little energy. I suspected low thyroid but after several tests over time, my thyroid proved to be normal. My cholesterol numbers are all very good, my blood pressure is low and good, I'm in decent physical condition, at 6'2" and around 180-185 lbs. I don't work out as much as I used to but I try to lift weights, hike, and ride a mountain bike on a regular basis. I very rarely run, as it's just not my thing. Anyway, the doctor tested my testosterone levels over the course of several months and found it to below the normal range. It was only at 262 and the low end of the range was 348. He suggested I supplement it, and so I chose to perform my own injections of a very small amount - 50mg I believe it was every other week. (I have to admit, that being a skinny kid, I I had experimented with both oral and injectable steroids of very small amounts and short durations when I was in my 20's and 30's. Never anything excessive by anyone's standards.) I performed these injections starting in Dec. 2014 and going until my brother got diagnosed in April, so for just 4 months, and so I became a bit paranoid due to his diagnosis and stopped. I still don't know if there is a good or bad relationship between testosterone levels and prostate cancer. It depends on who you talk to and what you read. I do know that even at the low levels I was taking, it did help my energy levels and sex drive. I was able to lift weights, ride my bike, and even run on the treadmill with much improved energy. My doctor tested my blood levels toward the end and I was still only at 342, so I was still below the low end of the range, but it helped none the less. For comparison, I had my brother test his level, which he had never done before, and his was over 600, and this is after his prostate was already gone, and he's 13 years older than me.
I don't have the exact dates of my PSA tests, but I did write down the numbers, and they went from 1.1, to 1.3, to 1.7, then to 2.4 most recently, which is why my GP sent me to the urologist. He felt the velocity was excessive, even though I was still below the upper end of the "normal" range of 4. This rise from 1.1 to 2.4 must have been over the course of 3 years. I've never experienced any symptoms, no frequency, no urgency, no pain, nothing. Perhaps within the last 5 years, I'd say semen volume has dropped as well as sex drive in general, especially lately. Not sure if those are symptoms of anything other than aging though.
My last visit with the GP was on 4/2/15, and the DRE was normal, and then he sent me to the urologist on 5/4/15, where the urologist did a DRE which was normal, but he did it so vigorously, I have to say it was painful. I thought I pissed when he did it, but I looked and nothing had come out, although I've been told some do during that procedure. Anyway, I asked the urologist if he wanted to do another PSA test, and he said, "what for?". He stated my family history and velocity were enough to warrant the biopsy. With great reluctance and disbelief, I scheduled the biopsy. Even with family history, and low testosterone, I feel pretty good in general and I feel pretty fit and feel my diet is pretty good, although I do love milk and milk products, which dairy is said to put one at greater risk of prostate cancer. So, these are the things that I've read that can put one at greater risk of prostate cancer: being tall - and I am, balding - which I am, eating dairy - which I do, family history - which I have, low testosterone - which some feel can put you at a greater risk, which I have. So I felt that I have a lot of things going against me.
Biopsy was on 5/19/15. They gave me instructions at my last visit, and you have to buy an enema and have to pick up a prescription for an antibiotic, and you have to fast for a few hours before your biopsy time. So I started researching. I have to say, that I've searched this site and found little if no mention of antibiotic side effects. To me, when I read about the unbelievable potential side effects of the preferred flouroquinolone antibiotics such as levoquin, cipro, etc., I wanted to write this story just to warn everyone of that aspect. I feel the dangers of a prostate biopsy may be greater than the actual removal of the prostate! So I was so afraid of the side effects of the Levoquin they gave me (3 pills - one the day before, one the day of, and one the day after), I almost cancelled my biopsy. Life changing side effects can happen on as little as one dose of Levoquin from what I've seen online. Do your research. I asked the urologist if I could use an alternate antibiotic and luckily, he gave me one for Augmentin, which I believe is just a strong penicillin type antibiotic. 6 pills of 850mg, 2 the day before, 2 the day of, 2 the day after. I found nothing on the internet about bad side effects of Augmentin, so I felt comfortable taking that one.
Biopsy prep: This probably didn't do any good, but in my mind, just to try to keep my intestines more clean, I started eating very lightly a day before, then quit eating the evening before and day of my 3pm appointment. I took the antibiotic as directed, and then took the enema 3 hrs before. It's much simpler than prep for a colonoscopy for sure. No laxatives involved. I don't believe 2 full solution enemas are recommended, but I did the first one, then filled the container with water and did another. I don't know how intestinal bacteria work(e-coli), but they are probably always there, and enema or no enema is not likely going to get rid of all of them.
So prior to the biopsy, I was hoping I made the right antibiotic decision, because one drug or another, one is still susceptible to sepsis after a biopsy, since they are poking 12 holes in your intestine - 13 if you count the lidocaine pain killer injection! One person recommended you ask your urologist to wait 5 minutes after the lidocaine shot to begin taking biopsy samples. I have to agree with that, although I didn't say anything, I wish I had, because he started sampling less than a minute after the lidocaine and it's not enough time. First the technician takes pictures of your prostate with the ultrasound device, then the urologist comes in and they are ready to start sampling. The urologist told me that the clicking sound the sample gun makes is likely more startling than the pain. I have to say that both the snapping sound and the pain are significant. I felt pain on all 12 shots. It's a jolt and it does hurt. My body jumped a bit with each shot. I was glad when it was over. But yes, I could've driven myself and had no problem driving myself home, although my brother offered to take me and it's nice to have someone along that has already been through it with you. The pain after is just a bit of discomfort, not really pain you'd need to take Advil for really, plus you don't likely want to take anything that might mess with your body's ability to coagulate the blood in your intestines. So, luckily, I did not experience any sepsis, which made me feel like I did the right thing switching to what I feel is a safer antibiotic. Had it gone the other way, I might have blamed myself for getting sepsis, but so far so good, no sepsis as of 5/24/15.
Yes, there is a bit of blood in the stool, and in the pee, but nothing significant for me. That was cleared up in 3 days or less, just one for the blood in the stool. Pee was totally red tinted one time, the rest was just a couple streaks. The next thing is something I was not prepared for, and that was the blood in the semen. They tell you it's going to be there, but when I saw it, it was like pure blood! It was scary to both me and my girlfriend. It makes you realize how much damage has been done to your prostate. So I hope that goes away real soon, but it's only been 5 days since the biopsy. I guess one might need to have more orgasms in order to clean out the remaining blood, but I will not be looking forward to that sight again. Very disturbing.
Anyway, I got the call 4 days later telling me that my biopsy showed cancer free! So that is definitely cause to celebrate, and to believe in all the prayers one says prior to something like this. My urologists recommendation was to perform another PSA in 6 months and I'm quite OK with that. I'm a free man for the next six months, although I am going to try to pay more attention to my diet - eat less dairy and meat. I've never been a big red meat eater, but I'm eating more fruit, less meat in general, and trying hard to avoid the dairy I love. I also started buying pomegranate juice, which is too expensive, but worth it if it helps save my life and save me from surgery.
BTW, for those that are wondering, my brothers PSA is very low, and he had some incontinence issues for months after the surgery, if not still very mildly. He does the Kegel exercises and I believe he's able to achieve an erection. I think occasionally he wonders if he'd have been better off using another method such as targeted radiation, but I think in reality, he's better off because the prostate is fully out and he doesn't have to worry too much about any remaining prostate tissue in his body growing and harboring cancer cells. I think it was the right thing to do and I'd likely do the same.
As for my low testosterone, I'm not sure how to proceed with that. I think I can live with not having much energy, and I've thought of B-12 injections, but have not tried that, as my GP wanted to test my levels rather than just giving me a shot. Testosterone injections may be risky in m, I just don't know. Another thing, is why do they just offer testosterone, and not other anabolics that have a greater anabolic index. There are other drugs on the market that have less androgenic effects and greater anabolic effects. Women bodybuilders are able to find and use drugs that do not cause the masculinizing effects of testosterone, just the muscle building effects. Also, what about using HCG, which supposedly can cause your testicles or pituitary to produce more of your own testosterone. Maybe someone out there knows the answers to some of these questions. I'm sure I'm not the only one that wonders these things.
I'll update this after the next PSA test.
12/11/15 - Update to my original story:
I had another PSA test in November 2015 and I was told it was 1.8, which I'm extremely happy about. I figure it must be good because the urologists technician called to report it and didn't even mention anything about when my next test should be. I'll have to either call back and ask, or assume another 6 months to a year.
What I had done differently since my previous PSA test: I initially tried to be a strict vegetarian as well as cutting out all milk products. Being a vegetarian is not that difficult for me most of the time. There are quite a few options for meat substitutes that are very good, and many people probably couldn't tell if you didn't tell them that it wasn't meat. Cutting out milk products was much more difficult for me. So, I decided to go ahead and eat milk products after a month or so of trying. I also failed several times and ate meat, but it was literally just a handful of times, so I didn't feel too bad about it. I think it was/is much easier to keep excess weight off while not eating meat, plus when I eat a vegetarian hot dog or corn dog for example, I don't feel bad about it because they have so much less fat. I actually really like the vegetarian corn dogs and Tofurky Italian sausage and would not eat their real meat counterparts again. But as soon as I took my recent PSA test - I didn't even wait for the results, I wanted to go out and enjoy some meat! I certainly didn't want to go through Thanksgiving and Xmas without being able to eat turkey! So I've decided to return to being as strict of a vegetarian as I can be after Xmas. Other things I've done differently were to try to drink a little pomegranate juice daily, which I wish was a bit cheaper to buy. Also, I had read that drinking a bit of baking soda water every day was a cancer cure, so I also tried to drink a bit of that every day, although I haven't been as regular with that as I should be. I continued to exercise as regular as possible (usually just a couple times a week), and was sure not to ride my bike several days before my PSA test because that is known to cause higher PSA values.
Energy levels: My energy levels are still just as low, but I'm getting along OK. I have not gone to my GP to discuss that since my original visit when he referred me to the urologist. I wouldn't mind being able to do something about it, but I'm not sure what to do that's safe. I'll probably need to schedule a full physical some time within the next 6 months, so I may discuss it with him again at that time. My sex drive could be better as well, but it's no worse than before, and everything is still functioning pretty well for my age I guess.
There were no lasting side effects from the biopsy, but I'm not sure it was wise to schedule the biopsy when they did in my case. If it were up to me, I would've waited 1 to 3 months and had another PSA test to try to confirm that one test is not a rogue number. Even though I have insurance, I still had to pay a considerable amount out of pocket for the biopsy, and I just don't like the idea of something so invasive being done to me unless it's absolutely necessary.
I guess I'll update this again after my next PSA test.
I plan on getting another PSA test in the next few months. I have not had any symptoms, which doesn't necessarily mean anything. I'll post results from tests when I get them. I continue to have poor energy which I wish I knew how to safely correct. My brother continues to do well and have good PSA readings after his prostate removal.
Update on 4/11/17: I had another PSA test on 3/17/17 and it was 1.9 which is good. I had forgotten about my scheduled test and rode my bike the day before and the result was fine anyway - who knows, maybe it would've been better had I not ridden? My testosterone level was 322 serum and 7.9 free. I have to believe that the rise in my PSA to 2.4 happened right during/after when I took the testosterone injections. So I have to conclude that PSA is related to testosterone levels to some degree. My GP tried to explain to me that while my serum test level was low, my free level was pretty normal. Since my energy level is so low, I don't know if I care what he's trying to say, because I still feel like shit!
I feel like looking into one of the men's clinics to see what they offer. I know it would be expensive, and potentially dangerous for the prostate, but I get so sick of the lack of energy and strength I have. Talking to the GP about this stuff is a waste of time. They typically don't have a clue about that stuff anyway. They hem and haw about testosterone supplementation, so I'm sure they don't know shit about HCG, hGh, etc. Anyway, I'll likely be considering this.
Rich's e-mail address is: firstname.lastname@example.org