My dad got prostate cancer at age 70. He was treated and the word was he is an older man and that is quite common as you get older. My mom got breast cancer, followed by my sister at age 40. Even though she was treated, it was quite aggressive and kept finding new places in her body. She ended up dying of it at age 46 after a very courageous battle. I mention this because I heard there was a tie between family history of breast cancer and the raised possibility for prostate cancer.
Two years ago, at age 55, my brother got prostate cancer. Had his prostate removed and is cancer free. Now I had another family tie, which raised the alert flag. That started my insistence with the doctor to include a PSA test with my yearly physical even though I was 43. At roughly 2.6 for the first check. Well, in May, I had a high PSA reading (4.6) at this year's physical. A second test was 4.01, but my doctor sent me to the Urologist due to family history and the number jump.
A biopsy revealed Gleason scale 6 tumors on right sections of my prostate. I am due for Bone and Cat scans next and from there, another visit to the doctor. I'm little in disbelief but will take each day one at a time.
My story is just beginning.
Since being diagnosed with prostate cancer, I heard the treatment options and after consulting with two different Urologists, decided to have the prostate removed through the Da Vinci method, scheduled for September 8, 2010.
There have been a number of up and down moments since scheduling surgery over a month ago. The post recovery is giving me more anxiety than the surgery itself. Right now, I am feeling confident that surgery will go fine, and I am preparing myself to do what it takes to recover, to fully recover.
I am lucky to have had the cancer caught early; I have many prayers, thoughts and encouragement coming my way. I feel lucky to have that which is giving me the strength to press on. May God bless us all on our journeys.
Later: Two weeks after surgery: Surgery is over. Not being a great anesthesia handler, I spent most of the surgery day not feeling too good. Got up and walked with a nurse overnight and again the next morning and sent home the day after surgery. Since surgery, I had a catheter for a week. Though not comfortable, you find a way to manage and it got more tolerable. That said, I am glad it is now part of the past. The biopsies taken of the lymph nodes and tissue around the prostate came up cancer free which continues us down the road of validating the cancer was confined to the prostate.
I am feeling improvement and healing from surgery. However, I do find I tire fast and one to two naps per day are really helpful.
I wear a pad for incontinence and feel like I am improving there as well. The Kegel exercises, done before surgery and after the catheter was removed have helped and I feel more control is being gained in this area. With what used to be the second valve now being the main valve, the body has to get used to that. That second valve is used to sending you a pretty powerful signal that you need to go, so retraining that signal to tone down a little seems to be part of the recovery; though realistically, I probably will be going more often than I used to. My brother who has gone through this, said, it may not necessarily be more often, but when you do need to go, you want to be near a bathroom and try to wait too long. So plan ahead when you are at a public event.
When I stand up or move abruptly without squeezing that muscle, I may get a drip, but nothing too out of control. Passing gas is also a little tricky as it involves relaxing that same muscle. As for urinating, I get up about once overnight to go after going into this not getting up at night. During the day, I go about every 2 hours instead of about every 3 to 4 before surgery. I have been a water drinker both before and after surgery which affects this as well.
Though not a perfect situation, the thought of continuing to improve and of being cancer free help give me the fuel to press on.
March 6, 2011. I am now at 6 months since surgery (Sept 8, 2010). I am progressing in a good direction and feel confident I am on a good path to a full recovery. Through Kegel exercises and getting used to using the urinary muscles, I was able to give up daily use of a pad at three months after surgery. Some rare slip ups, but those are few and far between and remind to keep doing my exercises. The exception here was when I got a cold accompanied by a cough. Coughing was a strong enough reaction that I did wear a pad for a day or two until the cough settled down. I can wait up to three or four hours between bathroom breaks, so I feel I am back to the urinating schedule I had before surgery. Admittedly though, I make a point not to wait very once I have the urge to go. No reason to push it if I don't have to.
As for ED, I am using a vacuum pump about twice a week (causes a Mr. Purple, but good training I guess) and taking 20 mg Levitra two to three times a week. On nights I take the pill, I can get a hard erection that reminds me of the days of old. On non-pill other days, I can get hard enough to have sex, but not as hard as I used to. It does appear the nerves are starting to come back, as there is more overall feeling and erections are happening. This is why I feel I am on a good path, but not there yet. Joy has been patient and willing to help me be comfortable. One thing that has helped is stimulation of my nipples. You may not be into that, but it has helped me.
About a six weeks after surgery, I had pain in my penis and some blood discharge. Upon calling the doctor, they informed me that was normal and to relax for the day or two, nothing strenuous. If this happens to you, I encourage you to call your doctor, but thought I would share my experience. At times, I feel a little pain where the urinary tract was connected back together. I understand this is normal. It is more of a "just letting you know I am here" kind of pain.
My doctors appointment in January included my first PSA test, which came back undetected. Still on a good path.
Sharing my story helps me work through my journey and I hope it can also help you on yours. God bless you and you are not alone.
In response to an update reminder, Tom said:
I was waiting for results on a scare I had, but ended up being normal. I will get the update in this week.
Tom Z
September 2011 - one year update.
I have been happy with my progress to date. PSA tests have continued to be 0. I have been ahead of the curve on my recovery and believe my age has helped me in this area as I was younger than most (45, now 47) when I was diagnosed. Incontinence is not an issue except for an occasional reminder when I sneeze or get a coughing fit. I do keglars occasionally when I think about it, and this has seemed to be enough.
As for erectile dysfunction; I am continuing meds. I take Levitra three times a week, but have dropped from 20mg to 10mg. I have found no issue with this switch. I feel my body is progressing and sex is good. I do climax faster than I used to and hope that as the nerves heal, I may be able to last longer.
The nerves are a little confused, but I am glad they are coming back and an hopeful they will get back to normal. Case in point, when I wipe my backside, I can actually feel sensation roll through to my front side. A little strange, but not a big deal. My doctor has noted this is not unusual and said it is part of the nerves trying to cover each other to get signals relayed to the brain. He compared it to himself when he had knee surgery and now when he touches his knee he can feel it in his shin. This may not give you warm and fuzzies, but I look at it as my body trying to heal and so I see it as the place I am at on my journey.
March 2012 (written at end of April)
18 months after surgery. I continue to make progress. Incontinence, same as in one year report. I do my normal activities with little worry about the issue.
Erectile dysfunction has also improved. I did try to go without any meds in November for awhile, but after about four weeks, I realized I wasn't ready for that so I went back on the meds. In January, I was put on the drug ?? which is the same medicine, just delivered quicker so I only need to take it just before sexual activity. Though possibly unrelated, I started experiencing ringing in my ears shortly after switching to this medicine. I stopped taking it in the middle of February to see how I would be sexually and I am glad to report that after 8 weeks (through middle of April) I have not taken any medication, and have been able to have sex normally. I am hoping this time may signal the end of needing meds, but I have them available if needed. Still climaxing quicker than I would like.
As things appear to be getting more normal, but I did have a scare. Prior to surgery when I would be involved in foreplay, I would release a little clear sticky liquid, kind of like a lubricant. After surgery, this no longer happened. Nothing was released, as they had removed the sack the produces the liquid the sperm travels in. Nothing being released was what I had been told and now expected. Well, this sticky liquid has come back. I did find out from my surgeon this is released from para-urethra glands and this release is normal. I was glad to hear that. Blessings and well wishes to all.
September 2013 (3 year update at 48 years old)
PSA remains at 0
At 36 months, incontinence is a rare issue. If only really do the Kegel exercises if I get an instance that reminds me about it being a good idea to continue to do them, but like I said, it is rare.
I can still be a little slow to harden at the start of sex, but I do get there. When I told the doctor that I wish I lasted longer during sex, he prescribed Clomipramine (25mg). He said it is a drug used for many things, and prolonging sex was also found to be an effect for some people. It worked for me. I do appear to last longer than I had before using it. He prescribed it daily, but I noted a slightly hazy vision change with it, so I use it only a couple times a week. My yearly eye doctor appointments have stayed the same, so I am not sure if the eye haziness is related to the drug, hay-fever or another factor.
I feel I am in a good place and continue to monitor for changes. Blessings to all on your journey.
At 48 months, things remain status quo. No sign of cancer. I continue getting PSA tests every 3 months and see the urologist/surgeon annually. I rarely take the prescription drug Clomipramine noted in earlier update due to the mild side effects, but I climax faster than I would prefer because of it. I still have it and may go back on it again and see what happens. Overall, I am happy with where I am at.
I wish you all the best and remember, you are not alone!
December 2015 (5 years at 50 years old)
At 60 months, things remain status quo. No sign of cancer. I received my 5 year certificate and have now graduated to yearly visits to the urologist/surgeon and I believe the same for PSA tests. Incontinence has not been an issue. As for sex, I have not taken the prescription drug Clomipramine noted in earlier update, but may go back on it as I would like to last longer before climax. I am able to have sex and enjoy it, which is great! Overall, I am happy with where I am at. I feel blessed to have progressed to this point.
I wish you all the best and remember, you are not alone!
Feb 2, 2017 (6 years, 52 years old)
I am still cancer free and rolling along in the same mode as last year. I have since started taking L-Citrulline as a natural alternative to ED meds and have had some benefits so I will continue to take it. Best wishes as we all continue our journeys.
December, 2018 (8 years, 53 years old)
I am still cancer free and rolling along in the same mode as last year. I continue taking daily, 1000 mg of L-Citrulline (an amino acid), as a natural alternative to ED meds and am satisfied with the results over the side affects I had with ED meds. Best wishes.
No changes in the last year. PSA is still 0. Taking L-Citrulline to help with mild ED. I am happy with my quality of life. Continuing to do Kegel exercises which helps leakage by keeping pelvic muscles strong.
All continues the same for me. I hit the ten year mark since surgery, so that is good news. I remain cancer free. Still following the same routine, with similar results. God bless and keep looking forward!
No changes. I continue cancer free and am following the same practices as before. I am satisfied with my quality of life. Take care and be positive.
6/23/24: Given the time since my last update, here is a short update. My oncologist retired, so I will be seeing a new doctor later this year for my yearly cancer check-up. I am continuing in a good place, same as the previous update.
Tom's e-mail address is: tjzim AT comcast.net (replace "AT" with "@")
