Three weeks ago my PSA results indicated I might have a problem. Two weeks ago my urologist did a biopsy and the results indicated I have prostate cancer - about 20% in left node.
My doctor recommended surgery at Johns Hopkins in Baltimore, Maryland, supposedly the best in the USA. In a few weeks I will go to Hopkins for my first consult and will probably have the surgery in early May.
I took the cancer news and surgery lightly, but now, after doing a lot of research on the web and reading Yana stories, well I think the surgery (and after effects) will not be pleasant. I cannot believe this is happening to me - cancer! I am in very good shape, have never had surgery, except for two serious motor vehicle accidents many years (45) ago.
Oh, stay tuned. I will provide updates as they occur. And, Yana, thanks for having me.
I never knew how to interpret the old saying "No news is good news". Does that mean if you don't get any news at all, well thats good news? Or conversely, any news you receive cannot be good news?
Well the latter seems more appropriate for me today as I recently got off the phone with Dr. Burnett from JH. I visited him Monday, 22 Mar 04, for a consult. Burnett called the walnut a T1c as he found no nodes nor evidence of hardness, that was encouraging. Dr. Burnett's a very likeable gentleman, upbeat, and being an ace surgeon (five radicals/ week) he naturally recommended surgery at JH as my first course of action. But this was pending the biopsy reevaluation by JHs' pathology department, headed up by award-winning pathologist, Dr. Epstein.
The pathologist here at the Newport Hospital called the biopsy specimen a 4+3=7, 20%, 10 samples, which indicated something might have to be done. Dr. Epstein's team called it 3+5=8 with probable pentration to the outer epidermal layer.
To me it is a no-brainer, out it comes, regardless of possible after effects. Damn the torpedoes, full speed ahead. Dr. B. said he wants operate in four weeks, six weeks at the max.
Me, being an iconoclast, scheduled the op for my 68th birthday, May 5th. Yeh, 2004AD.
I first postponed then cancelled my scheduled surgery at John Hopkins due to simple logistics. JH was a days drive from home, temp accomodations for wife were distant and expensive, and the hospital reminded me of an industrial factory, like a Ford Motor Assy plant. The JH complex is huge, thus tightly compartmentized, few hospital staff members know the physical layout of the factory, no staff member knows any other person at the hospital outside of their own department. Incoming patients are treated like draftees into the US Army, you must wear a sticker badge (like hello, my name is joe) wherever you go; JH is undoubtly the finest treatment center in the USA but it was too IMPERSONAL for me.
So another call to my local uro and he recommended Brigham Woman's Hospital, Boston, Massachuetts, and Dr. Jerome Richie. Boston is 90 minutes away by auto and a relatively small hospital. BWH is associated with Dana Farber Cancer Institute and the teaching facility for Harvard Medical College. Pretty good credentials in my estimation. Dr. Richie performs four Radical Retropubic Prostatectomies per week. He agreed to do nerve sparing surgery and was successful on the non-cancerous right side of the walnut. BWH pre-surgery evaluation of my biopsy slides was Gleason 4 + 5 = 9.
Whew, the more people that read the same tissue, the worser the results. But the gland, when removed, was reexamined and the TOTAL Gleason came back 3 + 4 = 7, the same as the first evalution performed at my local hospital. So, please read on for my follow-up comments.
My surgery was performed 15 June at Brigham Women's Hosp Boston and everything came out fine. The entire gland was biopsied on 18 June; the Ca was contained to the left side, encapsulated with no evidence of spreading, all surrounding nodes were clear. Prostate Ca is kind of unusual in that you are not aware of it as there are no body functions malfunctioning, no pains, no lumps, bumps, nothing to give you an idea that you might have a problem. The operation is similiar to having a defective body part removed, like tonsils, brain, kidney, spleen, or heart, or whatever.
My stay in the hospital was 52 hours. Check-in was Tuesday at 0530 and I was discharged 0930 Thursday. The operation was performed on the day of admittance, instead of requiring an overnight stay the day before the op. The bill is a little over $29,000, $565/hr. But thanks to Part B and TriCare for Life, my only expense will be an extra charge for a private room. And that expense is well justified as Bobbie was able to spend both nights in my room, sleeping on the sofa couch. So thank you Mr. and Mrs. America for taking care of my bills. I assure the taxpayers the money was well spent. And I have never met a more attractive chaplain (assistant); it must be very hard for this beautiful young blonde lady to adhere to the ten commandants.
The operation was nothing, at least nothing that I remember. Two hours in surgery and I was zonked the whole time. But now the post op recovery, which requires 6 to 12 weeks, is another story. Like Naval aircraft, I have a constant hydraulic leak with occasional blockage of the fuel dump tube. Wearing my post surgery diapers makes me look like Baby Huey, 'member him?
One out of nine white guys get prostate cancer so eighteen of you out there can thank John Snuggs and me for taking the hit, taking the bullet, so you may live free of prostate problems.
I am participating in a study to eliminate the prostate biopsy which really is a big pain in the ass. Like when the urologist spears the gland ten times with a little spring-loaded silver dart to extract tissue samples. Similiar to spending time in a max security prision with some bad-ass bro's from Homosassa Florida. But anyway, the docs are trying to identify certain unique antigens in the blood that prostate cancer cells produce. When the study is validated, the blood markers will identify the presence of PCa and, hence, no mo' biopsys.
Pain pills; they really work, makes a guy feel like getting out of bed and doing something, like shave and shower, look out the windows, make a pot of coffee. I will not be riding a bike for the foreseeable future. You know how the bike seat is, you normally support yourself on the hump but that hump is exactly where the prostate is/was, and it is still tender. You can't see your prostate but you know when it isn't there. Like the World Trade Center towers, when you look for them you know they ain't there. And horseback riding is a never-never. The last time I went riding was 48 years ago after drinking several pitchers at the EM club and I won't miss it.
Today is two weeks after the surgery and I have been having good days, ungood days, and really bad days, like yesterday. But today is mighty fine, the sun is shining, about 72 F, and I am munching on a freshly boiled corned beef. Sex has entered my mind but it is easily dismissed. I am incontinent, dribbling a lot, sneezing is the worst thing to do. But life goes on, seasons change, and I can rationalize ANYTHING.
Thanks for sharing this with me, good luck and God Speed to all of us. Joseph Smith
I had a minor(?) problem associated with the initial surgery performed June '04. My urine flow was diminishing over the last several months and urination frequency becoming more frequent. The flow had lessened to an extent that I could not force the urine out, it just kind of trickled out. So a trip to my local uro revealed that scar tissue, where the urethra was attached to my bladder neck, had built up to such an extent, that in the very near future, I would not be able to urinate at all. The local uro could not even insert an examining catheter due to the blockage.
So back I went to Boston Brigham Woman's Hosp for a consult with the Uro Department Head (surgeon who performed original procedure). He recommended and performed a procedure which removed most or all of the scar tissue and now I piss like that famous "Russian Race Horse". It was a full-fledged day surgery with all the bells and whistles normally associated with hospital surgery. I went home the same day, again with a catheter inserted.
The tube came out three days later, no problems. And this time I did not experience the unbearable 'Bladder Spasms' like I had during the initial prostate removal. All seems well now 'cept I have a funny feeling, like pressure, between my legs, aft of the scrotum and forward of the anus (in America we call this area "taint". I'll keep tabs on this problem, it might be caused by me using an exercise rowing machine with a hard seat. Oh, by the way, the area I am experiencing the pressure is right where the prostate used to be. Wonder if any other gents had a similiar prob after an RRP?
Oh, notice the PSA level..0.010 ng/ml. Just hope it stays down. PC has been getting some good press here in the States, several well known figures have come down with the problem.
Even though I've had three minor problems since my surgery, I'm still satisfied with RRP procedure. The initial surgery was performed 15 June 04 at Brigham Woman's in Boston. The worst thing about the surgery were the bladder spasms that occurred when the catheter was in place. The spasms are so painful that you want to remove the catheter as soon as possible. And when the catheter is removed, no more spasms.
So, on with my update. In November 04, my urine stream was greatly diminished and my local urologist sent me back to Brigham to have the "stricture" removed. The stricture is caused by scar tissue forming at the site of where the urethra was reattached to the bladder neck. This stricture only occurs in a very small percentage of RRP procedures, and unfortunately I am in that small group. Well, in January 05 the scar tissue again reformed so that I had to have the tissue re-cut, this time by my local urologist. What the surgeon usually does is to make a small cut in the scar tissue with a "cold knife". The surgery only takes about 10 minutes but you are admitted to the hosp, given general anaesthesia, and sent home the same day. The surgeon used a rubber catheter about the diameter of a garden hose which caused me a GREAT DEAL OF DISCOMFORT. The catheter was removed early due to my pain.
Now wait, I am not finished yet... four weeks later the scar tissue grew so fast that another procedure was necessary. This time, my elderly urologist had a younger associate from his office perform the surgery. The new doc used a different technique; he made a series of very small incisions all around the diameter of the scar tissue and injected the scar tissue with a type of steroid. Now we just have to wait and see. If the stricture does reappear, the doc will repeat the surgery as necessary. He also left a small diameter silicone catheter in for a full week and I experienced no spasms or discomfort.
The only alternative to this procedure is to open up my stomach, cut out the old scar tissue and graft some skin around the new incision. This is MAJOR surgery and I really don't want to do it. Besides, the surgeon would have to remove some skin from the side of my penis to use in the graft transplant. He suggested, jokingly, that I might require some skin donors seeing as how I am not amply endowed. So, fellow YANA members, when I send out the call for some skin donations, remember your old buddy Joe here in Newport.
Latest PSA 0.01 ;>}
My latest PSA, October 18th 2005, was UNDETECTABLE. ;>)
In response to my reminder, Joseph had this to say:
Thanks for the reminder to update my history. I will do so in a couple of days. PSA is still 0.01. Several men have contacted me inquiring about the post op surgery to permently do away with bladder strictures. Appears my uro a developed a successful technique; I will include it in my update. Joseph
(I'm still waiting for the full story, Joseph!!)
The PSA results continue to show that I am cancer free. Every antigen test since my surgery has shown the PSA to be undetectable, i.e., less than 0.01. I have had no further problems with bladder neck constrictions since the last corrective procedure which used the new cutting technique with the application of steroids. But I am now embarking on a new adventure.
About twelve years ago I was diagnosed with hypogonadism, meaning my testosterone level was at the bottom of acceptable standards. Testosterone normally declines in a man as he ages but there is is a point where the level is unacceptably low, hence hypogonadism. While not life-threatening, hypogonadism can result in lowered muscle mass, bone degradation, low energy, and a general feeling of getting old(er).
Originally my non-uro doctor in Florida prescribed testosterone patches to increase my levels. The patches iritated my skin and I voluntarily stopped using them. When I returned to Newport I visited a local uro who confirmed the hypogonadism and recommended I take testosterone shots every three weeks, I don't remember the dosage amount. Well my next test showed the PSA went from 1.1 to 2.2. And the following year the PSA soared above 4. That's when the uro discontinued the shots and performed a biopsy. You can read about the results of the biopsy and surgery in my earlier posts.
Over the past several years I have been feeling lethargic, no energy, lots of sleep time, getting weak, generally not feeling that great. This past summer several pro baseball players admitted taking testosterone supplements to increase their performance and energy levels while playing ball. Okay, so I made an appointment to visit my uro and asked about the possibility of taking testosterone supplements and what effect it would or might have on my cancer or PSA. This must have been my lucky day as the Doctor lit up and told me about a medical conference he attended this past August at Harvard Medical School in Boston. One of the guest speakers was a Prostate cancer researcher who started his lecture by saying he was refuting all past evidence and announced recommended treating guys like me with testosterone supplements.
His theory is that once the cancer is removed (as in my case the cancer in my Prostate gland was still encapsulated and surrounding lymph nodes were free of cancer cells), increasing a man's testosterone levels should not impact any cancer cells if they were non-existent. So, we shall see. A uro visit is scheduled for May '07 and I continue having my PSA checked every three or four months. After being on Testim1% 50mg for three weeks I am aware of an improvement in my mental and physical state. The Testim gel is applied to my shoulders every morning.
So wish me well. And if anyone has some kind condolences for me as I had to put down my nine year old, perfectly healthy Nova Scotia Duck Tolling Retriever as he bit two people; I never realized how much a guy could grieve for his dog.
PSA is still undetectable, 0.01 as of last Monday. I am starting to have a small dribble when I laugh/cough hard, when standing up from a sitting position on the floor, and also when sleeping. But my skivvies absorb the moisture so it is currently not much of a problem.
Nerve sparing DID NOT WORK. I am currently taking TESTIM 1% to increase my testosterone levels but it is not working as my tes and free tes levels are still out the bottom of the acceptable range. I will discuss these probs with my uro this Tuesday. And my uro's technique for eliminating scar tissue from reforming works just fine; I've had no problem with the scar tissue regrowing and lessening or blocking my urine flow.
I am convinced I did the right thing with the RPP surgery but the new robotic surgery sounds promising.
My current PSA level is 0.040 which is up from the previous test of 0.030 which is up from all the previous tests of 0.010. The increase is probably caused by my daily (double) dose of Testim 1%, a testosterone supplement. I take the Testim 1% to combat my Hypogonadism. My uro said do not worry about the increase in the PSA as the supplement is definitely making me feel better, mentally and physically.
Now some good news for my fans out there, the bladder neck scar tissue remains a non-issue. The last procedure, several years ago, eliminated the problem, permanently it seems. My urine flow is as it was when I had the last procedure and shows no signs of lessening. Continence is normal save for a couple of drops when I sneeze/cough hard or when finishing my third martini (up, Tanqueray, two olives please).
Sex occurs often but only in my dreams. Every six months I visit my uro for the PSA test and a DRE, which I am starting to enjoy. Again YANA, thanks for having me.
My latest PSA was 0.05. It's been almost five years now and I've been problem free for the last four.
I have corresponded with several guys who are/were interested in my Uro's technique for eliminating the scar tissue where the urethea joins the bladder neck... several have reported back that their surgeon successfully removed the scarring tissue problem. I am living proof it works.
Still taking a daily morning dose of Testim 1%. I definitely thinks it makes me feel better.
Latest PSA is 0.1, same as the previous two tests.
Suffer from hypogondism and use testosterone to build up my T levels. Using two tubes of Testim 1% daily for the last couple of years raised my T level to mid-range for a guy my age. However I grew to hate the daily morning application of the gel as it was tedious routine. I requested and my urologist agreed to go back to the old fashioned method of T injections, like every three weeks. Not only is it much cheaper than Testim and the occasional trip to the uro's office is a little pain in the ass but not much, and it is much better then applying the gel.
For any doubters out there, taking T supplements is harmless for me as all my cancer symptoms are gone. A normal T level is essential for bones, muscles, energy, and physical performance, just ask Lance.
My latest PSA test, taken on 16 December 2011, is 0.40. Over the last couple of years it has gone from 0.012, to 0.2, 0.3, and now 0.4. My uro states, that although the increases are minscule, we will continue monitoring the PSA twice a year.
As for my hypogonadism, the T level is now 233, kind of normal for a guy my age (75). I have switched from Androgel to Axiron (60 mg daily) as I found the underarm application to be less than a bother the top of the should application.
George and Terry, keep up your good work.
Joseph, Newport, RI
My March 2012 PSA was 0.5. Over the past several years the PSA has gradually increased from 0.1 to 0.2 to 0.4 to 0.5. My uro said the increases, while rising almost 400%, are incremently small and no cause for concern. I continue taking 60 mg Axiron daily and my T is 280, which is normal for a 75 y.o. guy. If the C returns, I probably won't fight it with any treatment that will cause me grief, what the hell.
Over the last eight years my PSA has gone from undetectable to 0.9. My GP and Uro became concerned and suggested running some tests. A complete body scan and a thorax level MRI result proved negative. My Uro then arranged an appointment with a radiation Oncologist who explained the pros and cons of a seven and a half week radiation program. Summing up, the rad treatment is only successful around one third of the time and may result in increased incontinence and several other problems which I forgot about. So I negated that idea and consulted with the surgeon who performed the RRP in '04. He, my Uro, and I agreed to immediately stop taking the Testosterone and wait and see. Within two weeks, the PSA dropped to 0.5. I will have another PSA test done next week to see where I am at. T is supposed to give you several improvements like increased energy, more muscle, bone strength, etc. But to be truthful, I FEEL BETTER NOW then I did when taking the T. Just the opposite of several notable athletes who were star performers (and got caught). There has been a lot of press lately about the necessity of PSA tests. While I can agree with that, my Uro and I consider it necessary for me to continue regular tests.
My PSA is holding steady at 0.6 and T-level at 246. My PSA has not increased since I stopped taking the T supplements.
August 2014: PSA 1.03, doubled in last six month. T-level way down to 156. Uro put me on Casodex which, I understand attacks and kills Cancer cells, similiar to an oral form of chemo. So I guess that means I have CANCER... Next PSA in thirty days, then another ninety days later. If PSA declines, uro will put me back on testosterone supplemental therapy. My T level is so low that I am not feeling well, really not enjoying life. I have ALL the associated problems and symptoms of Hypogonadism. We'll see. And when I am terminal with six months left I will start smoking unfiltered Camels (cigarettes, not a real camel animal). Terry, RIP. It was nice working with you.
My PSA; and T-level have been moving over the past year. PSA doubled from 0.3 to 0.7 to 1.2, back down now to 0.53. T-level, taking 0.75 units of testosterone in butt every 14 days, went up to a record shattering 1067. the max is 1070, test was reverified at 1067. the following test T was down to mid 500's. Also suffering from tender nipples. uro had my nips radiated thrice, no change in soreness. am now taking casodex which is a junior cousin to lupron. The uro thinks I might have a few CA cells floating around, haven't attached to anything as proven by a recent ct scan. Will be retested next Jan, will let you know the results. The GOOD NEWS is that the fatigue I have been complaining about for the past several years is going going away, almost gone. I self cured myself by reducing the amount of sugar in my daily diet. Previously I would drink 64 ounces of oj every two or three days, that in addition to my addiction/craving for jelly beans. What I was doing was to have a sugar crash everyday. Not by eliminating those two products, plus anything else that contains copious quantities of sugar, I no longer experience fatigue. And how many doctors weren't interested in my symptoms to investigate. And I am not pre-diabetic. And as I soon be eighty, I have a right to brag about my recent surgeries. Had the carpel tunnel tendon cut away, no more midnight tinglings but wrist sore, prob for about the next several months. And had the cataract in my port eyeball replaced. Both minor out-patient surgeries but as usual, the pre and post op procedures were a burden.
PSA as of yesterday was 2.51. Three month's ago 0.52. Six months ago 1.5. I will stop taking Testosterone immediately, have already canceled tomorrow's shot. I am currently taking .5 units, down from .75, and down from 1.0 units. Will see Uro in two weeks to discuss new course of action? Still taking Casodex which is the mildest form of pill chemo. Had my six months checkup today, GP praised me in all respects, except one, i.e., PSA.
My latest PSA shot up from around 1.0 to 5.4. I stopped testosterone treatments last year when PSA went from 0.5 or so to over 1. Uro started me on Casodex. Now with latest PSA number my uro gave me a one month Lupron shot to see how I feel. I have not been feeling great for a several years with constant tiredness and I really don't know if the Lupron is making me feel worse, maybe so. Certainly not doing my mental health picture any good. I researched Lupron and learned it was for advanced Ca. An immediate cat scan noted one or more lymph nodes enlarged which worried the Uro. No surgery possible, maybe a visit to an oncologist is next, we'll see. But I really will not submit to radiation or chemo... I will not prolong a miserable life for a measly few months. Not surprisingly, 90% of doctors here in USA feel the same way. I will opt for termination currently available in several states with prognosis of six months left by two doctor.s If that is not approved, there are other ways and I have done my research. Poor wife. Am now 81 and starting to feel my age. Just a couple of years ago I looked much younger than my age and felt much younger inside and mentally. Now life is depressing. My most famous activity is SLEEPING; I am not lazy but simply tired and fatigued. Have slowly gained weight over the last few years but I don't care what I look like, hey being an octogenarian has certain privileges. Also my primary care doctor said I am not fat, just shy of it. Also being diagnosed with any kind of Ca makes a person eligible for medical marijuana, which I am taking advantage of in a minor way. Due to my life's occupations I never had the opportunity to use weed but now, because I can do so legally, I imbibe. It does give my spirits a noticeable uplift that I truly enjoy. Am slowly getting my affairs in order, wife and adult daughter will be financially gifted. Oh yes, scotch and soda, with a twist of lemon, is now my cocktail of choice. Health insurance is not expensive, $100 a month, deducted from my SS, plus my military Tricare for Life, allows me free unlimited medical services/hospitalization/prescriptions indefinitely. Not bad for serving 20 years in the USN, plus my generous retainer check every month. Will keep you posted.
Joseph's e-mail address is: firstname.lastname@example.org