After my diagnosis, I started reading many books, including "A Primer On Prostate Cancer" (The full title of the book is A Primer on Prostate Cancer. The Empowered Patients Guide. The ISBN number is 0-9658777-6-0 and it has been available at Amazon and Barnes & Noble as well as at the Life Extension Foundation site, whose support saw the book published.) by Donna Pogliano and Dr. Stephen Strum, and "Guide To Surviving Prostate Cancer" By Dr. Walsh. I also went to several support meetings.
My initial thought was Surgery (RRP) then I opted for Seeds. After second and third opinions, as well as lectures, I am now looking into Davinci Robotic Surgery.
It has not been easy making a decision as to what treatment to select, but finally I have made up my mind,(after having made up my mind several times without acting on the decision of Seeds, Cryosurgery, Laproscopic, RPP, Robotic).
Up until last night (September 15,2005) I had settled on Davinci Robotic Surgery, after reading up on it, and going to a lecture by a well known Davinci "Artist." I decided to call my Memorial-Sloan Kettering(NYC) surgeon who also does the procedure, and asked him why he did not want to perform this procedure on me. He clearly stated that due to the fact that even though I had a T2a stage PCa,and because he had felt a slight "Hardness" on one side of my prostate, that he wanted to be able to digitally feel the prostate prior to its removal,and decide at that time how little, or much adjoining tissue to remove. He told me this would not be possible with Robotic Surgery, and there would be the possibility of either leaving cancerous tissue, or unnecessarily removing tissue which would otherwise have been left intact. Furthermore, if he needed to perform a nerve graft on any bundle(s) he would not be able to do so with Davinci without switching to open surgery.
The man does over five PCa surgeries per week, and has an incredible track record of success.That pretty much settled it for me as to what to do. I am scheduled for surgery on October 27th. I will have an Endorectal Coil MRI scheduled for September 30th. I understand this is not a pleasant experience, however,it is not painful, although somewhat uncomfortable. I may have a couple of Martinis prior to the MRI.
I went for my Endorectal Coil MRI. Was nervous as hell, after hearing different stories from other who had gone through this. I even told the doctor that I may "Freak Out" due to the closed quarters of the MRI. He prescribed one pill of Ativan, which relieves anxiety.
The afternoon of my MRI I took one prior to arriving at the hospital. An hour later, at the hospital, I was told the doctor had an emergency and my MRI would have to be postponed til the next day. I asked for another prescription of Ativan for the next morning, but did not take the pill, as it seemed to do nothing for me, (I even took the subway home with no less anxiety than normal) and was told by a patient who had just come out of the MRI that it was no big deal. The next morning I went for the Endorectal MRI. I was placed on a moving table, and had a small "Probe"(-The endorectal coil placed where the name implies.).. no discomfort, or pain. I was told the coil acts as an " Antennae", and gives a precise picture of the Prostate and the area. I was moved into the large cylindrical tunnel like tube, which was air conditioned, well lit, and not so confining that I would have freaked out. The doctors and the nurse kept speaking to me throughout the procedure, which lasted an hour, and I had no problem with the procedure. Indeed, it was a bit noisy, like pipes clanging around me, but since I am a composer, I interpreted the sounds to be some sort of "Avant Garde musical performance". At one point, I even fell asleep during the procedure.
The next day, I returned to the hospital in order to give my first of two donations of blood, as suggested by Dr Eastham at Memorial Sloan Kettering. This was also no biggie. It took ten minutes, and all the time I watched TV on a small screen attached to the comfy recliner. Afterwards I was taken to a room with a selection of juices and sugar enhancing snacks. Next week I go for my Pre-admission tests prior to my November 1, 2005 surgery. I hope to get back to this report after my surgery.
Today is Thursday November 3rd. I just arrived home from my surgery, which was performed on Tuesday November 1. I must say that it was not as terrible as I had been told by some, especially after resigning myself to the surgery, reading as much as possible about it, working out physically,and with a positive psychological attitude in order to get through the procedure, it was not as bad as I thought it would be. I also had faith in my doctors at Sloan Kettering, and after speaking to many who have had Surgery , I now feel it was the right choice for me.
The doctor mentioned that all tests including microscopic showed no cancer outside of the prostate, and that all nerve bundles were kept intact. In fact a test was done in order to ascertain that potency, and continence would return. I was given a course in using the Foley Catheter, Vicodin, in case of pain (which I have taken sparingly) and some stool softeners. I can eat and drink whatever I desire, obviously in moderation at this time, and will return on Monday the 14th to remove the Catheter, and obtain my post-surgery blood PSA reports. More to come as I recuperate at home.
Here I am, one week and two days post surgery. Pain has subsided substantially, as has the swelling around the genital area. (I am beginning to recognize my penis again!) Doing my daily walks, and doing lots of reading and writing. Energy seems to be returning, as well as "Horniness".
The one thing I must stress emphatically is DRINK LOTS AND LOTS OF WATER, otherwise what happened to me may happen to others. I stopped drinking my required 4 bottles of water per diem. I had a glass every few hours. I then noticed that throughout the day, the bag began to fill up with reddish liquid, rather than the usual urine color. After emptying the bag, I later noticed that no more liquid was entering the bag. Nothing. Nada. Nix. I then began to feel extremely bloated, and noted that urine was seeping out around the tube, not within it. Before calling the doctor,I decided drink a full bottle of water, and to remove the bag from the Catheter. I began to pour sterilized warm water INTO the tube leading to the penile area. Suddenly, lots of blood clots were released, and the urine began to again be released through the Catheter tube. I reattached the night bag, and all liquids look normal and bag fills up nicely.
I hope my details are not too vivid, but I hope it helps others to avoid what I went through. The catheter is scheduled to be removed on Monday the 14th of November.
Today was the day the catheter was removed. The nurse of Dr. Eastham, who I had met before, entered the room and explained that it would really not be a painful procedure. She proceeded to inject saline water into the catheter tube, and told me I would be feeling a bit of bladder pressure, and urgency to urinate, which I did. She then explained she would be removing the water from the tiny inflatable bulb which had been inserted into the bladder and filled with the saline solution in order to prevent the catheter from slipping out. This she did via a hypodermic needle inserted into the small secondary tube extending from the outside of the catheter, and which had been sealed after originally having been filled. Thus far, no pain. She then asked me to hold a jar at the opening of the Penis, and told me I would be urinating into it upon pulling out the catheter, At the count of 3, she quickly pulled the catheter out. I only felt a bit of a tickle, and the famous Catheter, which had been part of my life for 13 days was gone. Hallelujah! I urinated into the urinary jar, and during the urination the nurse asked me if I was able to stop it midstream, which I was able to do with no problem. I was so glad I had done my pre-surgery exercises of Kegels, which really help maintain continence and control incontinence. She told me the Doctor recommended that I do 200 per diem!!!! (1 for 10 seconds, hold for ten, and repeat as many times as possible throughout the day, until I achieve 200.)
I was also given some "Pads" in case of unwanted dripping, which I thought I would not need. In any case, I placed a pad in my undergarment, took a bus home, and by the time I arrived at my place, the pad was soaked. It was then I realized that my bladder and muscles had become accustomed at letting the catheter do "all the work", I replaced the pad with a new one, and began to do my Kegel contraction every time I felt an urge to urinate, When the urge got bad enough, I went to the bathroom, and had a normal urination....good to the last drop. This seemed to solve any leakage problems thus far. I'll know better tomorrow when I return to work for several hours. Later on I'll discuss the Prescription of Cialis/Viagra and why. Also the post-operative biopsy reports, which at first freaked me out, until I was able to absorb the reality of the tests, and the final outcome of the surgery.
It has been 18 days since my surgery. Catheter was removed this past Monday, as described in my earlier update. I returned to work 15 days after the surgery. Since my work does not require any heavy physical activity, I had no problems. I still wear a pad. although I am now getting much better at retaining, and controlling urination. I do know, "When Ya Gotta Go, Ya Gotta Go".. Otherwise your body will do it for you wherever you are. The control, and flow are getting much better and I do sleep totally dry. I still get up once per night as I used to prior to my surgery. I do know that it takes some work and awareness to stay dry during the day. Doctor says I will be able to get back to "normal" with a bit of patience and continuation of Kegel exercises. Kegels sure help, and are becoming an integral part of my daily activities. (Besides, its easy, and no one knows I am doing them. I hold for ten seconds, and relax for ten. I do as many as possible before I feel my pelvic muscle getting tired.)
Dr. Easham gave me a prescription for Levitra, which I am supposed to take daily, in order to get blood flowing back into the penis. Mentally I brought forth my most positive thoughts regarding achieving sexual function ASAP, and NOT feeling sorry for myself, or acting like my sexual life was over. My nerve bundles were spared during surgery, and I wanted those bundles to get back into action.The doctor also emphasized the fact that I could get back to sexual activity immediately, or at least try. Amazingly for the past two days, I have been able to achieve erections as well as orgasms with no problems and no pills. In fact I wake up with the proverbial "woody". The orgasms I must say feel the same, and just as intense as they did previously, however, there is no ejaculation which is no biggie. In fact, it saves on getting up after sex to get a washcloth for "The Post Orgasmic Clean-Up". Tonight I will take a Levitra to see if there are any enhanced benefits. After all, I have the prescription, why let it go to waste.
I am scheduled to return for post-op PSA test and review on January 4, 2006.
I am adding this post surgery note as my situation with stitches may affect others, and what to do about it.(This is NOT to discourage anyone from surgery. Only to be aware of a possible problem, and to take care of it IMMEDIATELY)
It is now November 29th: twenty eight days past my surgery at Memorial Sloan Kettering Hospital in NYC. After I was told I could remove the strips of tape around my surgical scar,( Two weeks after surgery) I noted there was bleeding, and inflammation around a section of my scar. There was also some oozing of pus, and the area became painful to the touch. I called my doctor, and described the situation. His assistant told me it was a "Common"problem. That I should keep the area clean, and that it would become better within a few days.
Four days later, I could hardly walk from the pain. The swelling and redness had become much worse. I again called my doctor, and the nurse told me to "Keep it clean, and put some gauze on it. Change it twice daily"and "Take an anti-inflammatory such as Tylenol." I followed the directions. The situation got worse.
Two days ago, on a Sunday, I could no longer take the pain.I was losing sleep. The swelling became worse, as did the oozing. I called the doctor's phone, and since it was a Sunday (Thanksgiving weekend at that), a recording told me if there was a problem to call the Immediate Care Unit of the hospital. There, after several tests I found out from a young urologist on duty that I had a severe infection as well as separation of some of the incision area. Tests also showed urinary tract infection.
I then went through a painful process of the reopening of some of the incision in order to place some drainage tape on the area. I am now on antibiotics. I have to change the drainage tape after showering. In retrospect, this was worse than my surgery. My point is: Don't do what I did. Dont wait for the area to get inflamed. The surgeon may be a wonderful artist in performing RRP, but he (or she) may not know how to treat a simpler problem with the incision.
My stitch infection problem has cleared up....turns out I was in need of antibiotics, and after receiving a week of "Augmentin" the problem has cleared up. Most importantly, on my follow up visit 7 weeks after surgery, my blood tests show an undetectable PSA reading!!! I am due back for another PSA late April of 2006. Will update as necessary.
Thanks to Terry, and all others who have contacted me in support, and with their input.
I would like to comment on that wonderful word SEX!! But first a note about my earlier incision problem. All is well, and the incision is almost unnoticeable. It had gotten inflamed, because I neglected to wash it, and change my bandages. However, I suggest to others to ensure that you take your antibiotics after the surgery to prevent any inflammation. I played hero, and did not follow Docs orders to a T.
Now, back to SEX!
It's been about two months, and my sex drive has returned. I was given a prescription of Cialis, but did not take it, due to not having any erectile problem. My doctor stated that it is IMPORTANT for me to take it in any case, to increase the blood flow to the area. Interestingly enough, although there is no ejaculate, my orgasms are much more potent, and last longer. I don't know why, but that's where I am at.
Its been six months since my surgery. Just had my second follow-up exam, and I was told PSA is UNDETECTABLE! (Thank G-d). I think I made the right choice in getting the prostate and the Cancer out of my body, rather than other choices available to me.( In my heart I KNOW, I made the right choice).
Sexual life has been great. Orgasms seem stronger, and last longer than before RPP. I believe it's because the body seeks to find sperm, and continues its contractions. Sort of like a woman's orgasm. No ejaculation, but it's not different without the sperm. I do take my Levitra almost daily to keep the blood flowing (as the Doc suggested ), however, if I don't take it, the erections as still there.
Doing my daily Kegels, and find that I no longer need pads, except when at the gym, and even then, I could accept the few drops that escape during lifting.
It has been one year. I just had my PSA test, and thankfully, it's "0" Undetectable.
It was however a stressful day at the hospital. I have been having difficulty in urinating for several weeks. Very slow stream at times. I told my surgeon this during today's consultation, and it was determined that some scar tissue may have formed in my urethra. I was given an exam via a cystoscope(sic) and upon review, was given a catheterisation of the urethra and the bladder. A somewhat uncomfortable experience, but not as bad as it sounds.
I am, however glad that the PSA is undetectable. That is to me the most important news I received.
Hello! It's been Two years! Just went for my six month checkup, and thankfully, all is well. My PSA reading is negligible, according to my doctor (It's 0.5 ng/ml.) I am told I need not return for another PSA reading for one year, but the doc suggests every six month, so I will return in May of 2008.
Thankfully, my health is great. I am working, working out, sexually all is fine, except for the lack of sperm (No need for cleanup towels after sex!!!!) Doing my daily Kegel exercises in order to prevent any urine leakage (and there is none, except when working out strenuously and drinking too many liquids.
TODAY WAS MY THIRD YEAR CHECKUP, AND MY PSA IS O.O!! I AM WRITING THIS IN ALL CAPITALS, BECAUSE, AS MY DOCTOR AT SLOAN KETTERING (JAMES EASTHAM) AND MY FLORIDA DOCTOR, (DR.ZIFFER) STATED, I AM NOW CONSIDERED CANCER FREE!!!.
My next checkup is May of 2009. Good luck to all who are going through PC.
Its been just about three years [Well, no, actually almost FOUR years since November 2005, at least the way we count in Australia!]. Dr. Eastham, as well as Dr. Scardino believe in pronouncing patients Cancer Free after three years, not the common belief of two years. I guess they are extremely conservative and careful. Went for my physical in June, and PSA was Undetectable.
I am eating right, and taking Maitake Mushroom in concentrate form as well as Sauteed Maitakes Mushrooms, as this is mentioned on the Sloan Kettering Site as one of the natural sources that inhibit return of malignancies. (I am not advocating this, only that its mentioned in the Sloan Kettering Webpages).
I am going to the gym religiously, and eating the right foods, (Although at times I do sneak in a Mc Donald's burger or two into my diet. I have no Leakage, nor sexual problems. I am planning on celebrating my 3 year landmark at a fun restaurant with Julie, and getting another PSA test, just to keep on top of things. Will report back in a few.
Best to all who read this. I hope it helps.
Four years since my surgery. I sent the blood test samples from the lab in Florida to Dr. Eastham at Memorial Sloan Kettering, in New York City. Dr. Eastham called me several days later to report "Undetectable PSA!! Keep up the good work". (Actually its due to his great surgery, in my humble opinion.)
Will report back in one year. Best to all. FW.
Thankful for over five years cancer free. PSA Undetectable. (0.00) Watching my diet, taking Maitake Mushroom supplement as indicated by Sloan Kettering doctors, and working out daily at my gym.
Thankful for over six years cancer free. PSA Undetectable. (0.00) Watching my diet, taking Maitake Mushroom supplement as indicated by Sloan Kettering doctors, and working out daily at my gym.
Had my full physical last week, and thankfully, PSA reading was undetectable, as well as all other vital signs. The doctor even used an "Extra Sensitive PSA Test" (whatever that means). But it makes me even more thankful that I chose the right hospital, and the right doctors, seven years ago!
I just received my PSA results, and thankfully, it is undetectable (0.0).
It is always of slight concern when going for my yearly physical, even after being Cancer Free for over eight years. This year it was especially worrisome for me as a good friend passed after having PC and deciding on having Robot Assisted Radical Prostatectomy at a local Florida Hospital, which did not totally remove the Cancer. I am still against Robotic Surgery for PC, due to what my surgeon had explained to me before my decision on which procedure to select.) He had told me that with Radical Surgery (IMHO Still the "Gold Standard) he is able to hold the Prostate in his hand and feel the entire prostate as well as see, feel and remove surrounding tissue for microscopic determination of any cancer while still in the operating room. Something to consider before selecting the method, and the hospital. Just my own personal opinion, after seeing my own results, and the results of others who have gone through PC surgeries.
Thankful that all is well. Physically, mentally and spiritually. Psa at 0. Will go for next physical in the fall of 2015.
I had my yearly checkup, and my (thankfully) PSA reading is 0.!! HOWEVER, months after my surgery years ago, I had trouble urinating, and it was determined (See early story) that scar tissue had developed in my urethra from the surgery (Apparently fairly common). Dr. Eastham, at Sloan used his "Roto-Rooter" stent to open up the blockage. And I was told that it may recur.
Well, it's been 12 years and I thought it did recur this year (the Scar Tissue Forming at the incision). I had noticed slow painful urination and at times, after jogging, blood in the urine, so I visited my Urologist.
Bottom Line: Thinking it was scar tissue returning from RPP, at the suggestion of my urologist, I had a Cat Scan done, which revealed Kidney, and Bladder Stones which were causing the bleeding. (I have had this problem for years, having nothing to do with the Prostate surgery) Thankfully, having PSA is 0.0.!! THAT to me is a blessing.
Had yearly checkup. All is well.
Manfredo's e-mail address is: adsong AT comcast.net (replace "AT" with "@")