I've been visiting this wonderful site since my diagnosis and now feel that I have a story of my own to pass along.

Needless to say it was a severe shock to get the diagnosis of "a very aggressive cancer with probable involvement beyond the prostate." I had an 8 to 10-year history of BPH (Benign Prostate Hyperplasia) and PSA readings that swung from 2 to 5 and in between. When I had a PSA of 6 in 2004, I took advantage of my health coverage just before retiring to get a biopsy which was negative. It was the skyrocket rise from one year to the next in 2008-2009 that triggered the next biopsy and the diagnosis. My advice after all this, is don't be lulled by PSA readings that might be attributable to BPH or prostatitis -- stay on top of the situation and maybe have the PSA checked more often than usual.

Once I had my diagnosis, the urologist recommended hormone therapy which I began in May 2009 with a 4-month Lupron injection. The side effects are miserable at times, but tolerable. It remains to be seen how well I can recovery from this "chemical castration."

I was lucky enough to be near (well, 6 hours away) Mayo Clinic in Phoenix where I had a radical prostatectomy with the Da Vinci process on June 1. They sampled lymph nodes and "cleared the margins" during surgery. Three months later, I am totally recovered from the "minimally invasive surgery," and working on incontinence and psychological/physical effects of the hormone regimen. My PSA level at three months post-op is "undetectable."

Nevertheless, I am grateful for the advanced technique of robot-assisted surgery and the skills of the surgeons who did the job with their video screen and joy sticks! I would recommend this technology to anyone for whom it is available and considered an option.

At six months from surgery, my PSA levels have been undetectable at both of my 3-month visits to the Mayo clinic in Arizona. I am almost fully continent now, but have occasional small accidents due to physical strain (lifting, standing up from a squat or even getting out of a vehicle without being prepared), especially late in the day. One of the things I'd recommend to men who are having trouble regaining continence is to walk regularly and as much and as vigorously as you can, and simply to stand (rather than sit) as much as you can during the day. This seems to condition those muscles that are important to holding the urine. I also perform and teach tai chi chuan which puts steady demand on the legs, waist and abdomen, and has really helped with the incontinence problems. I truly think that exercise is one of the main keys to recovery of function. After years of BPH and with my prostate long gone, I have the best urine flow I've had for a decade or more! I'm also enjoying good coffee which I had completely given up for years trying to be kind to my suffering prostate.

As for the Lupron therapy, I still (after 8 months) have episodes of deep fatigue and despondency. I try to combat this with naps and by making an effort to work out to some extent every day. The physical activity really boosts my mood and outlook, and it gives me the satisfaction of playing a part in my own recovery. Nevertheless, I still am carrying 15 pounds of weight I would like to lose. Not very successful in that endeavor so far. Muscle tone is poor as well. I lift free weights in modest amounts but can't seem to regain/maintain any kind of muscle bulk or tone. Maybe this is all too soon to hope for. I'll see my PCP soon and get a complete lab test to see whether any testosterone has returned to my system. I have next to no sex drive and after six months after surgery I can't tell whether I'll have erections or not. This is perhaps due to the "double blow" of the Lupron and the fact that my surgeon (due to the aggressive nature of my malignancies) could not promise a " nerve sparing" approach to the prostatectomy.

So at this stage, I'm happy with the results of the surgery (no sign of remaining cancer), but confused about how soon to expect recovery of sexual function (if at all and to what extent) and overall physical well-being, such as weight loss, energy and muscle mass and tone. More later after my next trip to Mayo-Scottsdale. That will be at a time when I can take in a couple of spring training baseball games in order to boost my morale!

Today, when I got the "nudge" to up-date my story, I had coincidentally just returned from a visit to my GP who reported that my fourth PSA panel post-surgery showed PSA to be undetectable, same as the first three tests. Needless to say, I'm delighted at that good news.

I am what I have come to regard as fully continent - that is, after lots of Kegeling and working out to regain abdominal strength, I only have minor leakage when straining to lift something, or when I'm tired and have been on my feet in the shop for several hours without relief.

I still can't seem to shed the extra 8-10 pounds I put on as the result of Lupron injection prior to surgery. I am active, don't eat a lot, but can't seem to get rid of those pounds -- maybe aging has as much to do with this as anything else!?

Now for the less good news: I was told that due to the size of the prostate, the speed of PSA doubling (aggressive tumor) and the fair chance that the tumor had exited the prostate (proved not to be true), there would be no chance to do nerve-sparing approach to prostatectomy. OK, well at least he was honest. Result is that 17 months after surgery, I cannot muster any kind of an erection and my libido is pretty low too. I have an incredible partner in my wife and we've promised each other to work on physical intimacy in any way that remains to us under the circumstances.

I have considered trying the vacuum pump, but somehow just can't get the nerve up to do it -- probably fear of failure, and then what? Any advice or counsel from friends out there about the pump would be appreciated. [There are many men on the site who have used vacuum pumps or VEDs successfully. Using the Site Search Engine will provide 10 or 20 men's names. Another approach is to join a Forum where such matters are openly discussed - see Mailing Lists.]

Other than that, life is good and its quality is enough for me to be enjoying every moment I can! Best to all who might read this, and hopefully some of it will be of help to someone.

Reed

It's been nearly three years since I was on my way to June 2009 DaVinci prostatectomy at Mayo Scottsdale. To this date (April 2012( I have never recovered ability to have an erection. This had been clearly explained to me prior to surgery: this could not be nerve-sparing due to size of prostate and extent of area possibly affected in prostate area. I am just about fully continent -- little change since last update in that area.

In fall of 2011 I had a PSA reading of 0.12. Then in January 2012 my PSA was 0.2. My GP said he'd like me to see a urologist and I did. One general scenario we discussed if PSA continued to rise was "salvage" radiation. Well, PSA went down to 0.16 last month. Kept appointment with urologist and he ordered another blood test. I am awaiting results and assuming that the future will be determined by the differences between the latest and those prior PSA readings. This latest discussion with urologist included the idea of injecting Lupron accompanied by Casodex tablets for several weeks/months before beginning radiation. CTScans and MRI revealed that there is no metastisis, so the assumption is that we're dealing with something in the immediate area of the surgery. That's pretty much all I know for now. But I will up-date this as soon as there is more information and I have a plan of action.

It would be helpful to hear from anyone who has gone through this kind of recurrence after surgery. The numbers seem microscopic to me after the 13 PSA that triggered my surgery in 2009. But I guess anything no matter how small is enough to ring the alarm bells. Let me know if you've been in a similar situation and have any advice. I mostly hate the idea of hormone therapy and wonder if it's really necessary to accompany radiation. Thanks for "listening"! [I suggest a read of Ultra-Sensitive PSA to get a focus on this issue. Mike C recently reported that some doctors in Canada are no longer using ultra sensitive tests for monitoring.]

Thanks to Terry for the prompt to get busy and update my narrative!

Just about a year ago, and about three years after the surgery described in previous posts, my PSA began to rise, wandering around in the 0.21 to 0.15 range.In view of the original diagnosis (2009) of an aggressive form of PC leading to surgery, my doctor at M.D. Anderson (Albuquerque NM) recommended "salvage radiation" to catch any lingering (and possibly growing) cancer cells left after the surgery. He told me that this was not an unusual situation to be in after surgery and that the radiation treatments had a very good record of success. I went for it, and had 35 treatments of External Beam Radiation from July to Sept of 2012.

No drastic side effects other than afternoon fatigue for the final couple of weeks and for about a month or so afterwards. During the treatments I did a regular exercize routine three or four times a week at a local gym (light weights and cardio) which was pretty usual for me anyway and which my doctor encouraged me to continue throughout. So far, I'm satisfied that the treatments have had the desired effect of stopping any further rise in PSA and possible growth or spread of remaining cancer cells. Of course, these tiny variations in PSA even before radiation led me to wonder about the variability of lab analyses of PSA even when looking at a single blood sample. Further tests (every three months for two tests, then every six months) will tell the tale over time. But I've tried not to let that worry me. The treatment I got had minimal and so far temporary side effects and my PSA is now at a level "I can live with!" Thanks to the superb team at M.D. Anderson / Kaseman Presbyterian Clinic in Albuquerque for their very caring and expert work!

Summer of 2012 I went through a course of "salvage radiation" which was the second intervention in my course of treatment. PSA did go down at the time of the treatments which ended on 9 September 2012. PSA at that time was 0.15. Six months later however, PSA measured 0.17 and that still seemed pretty good to my oncologist and radiation therapist. But six months after that, they were less than thrilled to to find that the PSA numbers had doubled to 0.34, and three months later, when PSA registered 0.68 my oncologist was urging me to undergo a course of ADT. I knew that PSA doubling over six and then three months was significant, but I still couldn't grasp the seriousness of the situation since the numbers were consistently less than 1ng/ml! I also was a bit confused by the fact that the numbers seemed to have doubled so neatly: 0.17 to 0.34 to 0.68. Still not sure how/why that happened in such an exact fashion but it's probably irrelevant to my actual situation. My ADT treatment began on January 15, 20124 with a two-week course of Casodex tabs, one a day. Then the first three-month injection of Lupron was done on January 29, 2014. I have had one more three-month injection and will get another one the end of July 2014.

That means that at the time of this up-date, I have been on Casodex (2 weeks) and Lupron for nearly six months. I have experienced most of the announced side effects of the Lupron: I have gained about 6-7 pounds (noticeable since I normally weigh 165 and am about 5'9"); I have days when I am so tired I don't feel much like doing anything; I have what I call "brain fog" some days when it's hard to concentrate on anything and I avoid tasks like woodworking that would require focus and care; I have hot flashes ("sweats") several times a day and night; I've had headaches that haven't responded well to the standard remedies (Advil, Tylenol, Aspirin, Aleve); some days I would say that I am outright depressed, uninterested in doing just about anything and this is usually accompanied by the fatigue I described here as well: "Zombie days!" I have tried to be as honest as possible about my feelings throughout these narratives and I won't stop now. Earlier on, I could emphasize the positive -- I felt good to be taking steps to manage my condition and despite losing all genital-based sexual function, I felt pretty good about my physical condition and tolerance of side effects of the treatments I underwent.

BUT, this latest course of ADT is kicking my ass most of the time and I don't know how long I will be willing to continue it. I am striving to keep up my physical activity - some light to moderate weight-lifting; aerobic work on an eliptical and the use of a "Body Bow" (look it up on the internet) which I find helps muscle tone, flexibility and strength. I continue to teach Tai Chi Chuan to two classes a week which keeps my attention on balance and flexibility; I meditate regularly and all this does help me deal with this latest course of treatment. All of this helps for sure, but I am already feeling a loss of overall strength due to zero testosterone levels caused by the Lupron doing its job. This on-going, overall physical and mental/emotional condition is not something I want to endure for ever! Consequently, I am going to discuss with my oncologist going on to intermittent ADT treatments (pioneered, I think, by Dr. "Snuffy" Myers) where the Lupron treatments are suspended for periods of time and replaced by "active surveillance." One thing I will say I am happy about is the fact that there is still no evidence of any metastasis in bone or soft tissue. But overall, my response to this third course of treatment (RALP, salvage radiation, ADT) is one of discouragement. I say this not to be negative about the fact that I am still realtively healthy and free of mets. It is just an honest description of how I have so far dealt with this latest phase of what I know will be an on-going battle with no end in sight...

At last posting I mentioned that I was planning to talk to my oncologist about taking a "vacation" from the regular 3-month Lupron injections I have been on since January of 2014. I brought the issue up to him once and he was not supportive. His reasoning (which I understand completely) was to question why we would consider stopping a treatment that had resulted in consistent "undetectable" PSA readings since its beginning. I persisted because I wanted to see if I could get rid of some of the side effects for a while, and the second conversation resulted in his agreeing to suspend the Lupron so long as the PSA numbers did not rise. The difference in this second conversation was that I could refer to some information that said 1) that there seem to be no ill effects of stopping the ADT therapy-- and in fact some of the side effects do disappear -- if it was resumed when the PSA numbers rose above a certain threshold, and 2) that it is very likely that intermittent rather than continual treatment lengthens the time until the cancer may to mutate and become "therapy resistant" thus requiring the use of a different ADT agent.

During the past year I have been having monthly acupuncture treatments and using herbal dietary supplements to lessen the side effects of Lupron. My headaches have all but disappeared and my moods have been much more stable. The aim of these complementary treatments has been to strengthen the function of the liver and kidneys as they react to the presence of the Lupron, which they seem to identify as a toxin and work overtime to flush out of the body even while the therapy continues to suppress the production of testosterone. There has been little effect on hot flashes which continue now even after a month off the Lupron. No big change in muscle tone but I don't experience the days of profound fatigue that used to affect me for several days at a time.

I'll just have to see how this intermittent treatment goes with time. I am hopeful that the side effects will be milder even when I (inevitably?) go back on Lupron. I still enjoy teaching Tai Chi Chuan to two classes a week, I play golf every couple of weeks and more often if it works out, and I still exercise with hand weights and the "body bow" to try to retain (regain?) muscle tone.

That's about it for now. I'll try to post more information as the intermittent treatment progresses.

Blessings and peace to all readers, my fellow travelers on this difficult road!

At this posting it has been 16 months since I stopped receiving quarterly Lupron injections (ADT). Previously I posted the story of how I arrived at the decision to stop ADT treatments after 18 or 19 months, so I won't repeat that information here. I will be 75 years old in January 2017.

My last Lupron injection was in April of 2015. My MD and I have agreed to wait until the PSA has risen a significant amount before resuming (or deciding whether to resume) the Lupron treatments. Since stopping, the only "side effect" of the ADT that persists is the hot flashes. My oncologist is at a loss to explain. Does anyone out there have any wisdom to share about this?

Otherwise, I no longer suffer from the fatigue, the frequent headaches, the "brain fog", depression and other side effects I have already described in an earlier post. My quality of life has improved immensely! I must add, however, that no sexual function has returned.

At the same time, my PSA has risen slowly while the ADT is being withheld from 0.01 to the current (late November) 0.06. Next week I consult again with my oncologist to see if we can agree on a PSA number that would warrant returning to the Lupron injections. Given my vastly improved quality of life, I'm hoping that whatever trigger PSA number we agree upon, I don't reach it for a long time. I'll try to keep updating this as I go through this welcome "vacation" from constant Lupron treatments.

In July of this year (2018) I will have been "on leave" from my quarterly Lupron injections for three years. When starting this suspension of ADT treatments my PSA was 0.01 and it continued to be the same for the next seven quarterly tests. Beginning in January of 2016 the PSA numbers began to rise, reaching 0.29 for my latest test in November 2017. I am scheduled to have a blood test for my next oncology appointment the day after tomorrow with the appointment on the 22nd of March. Each appointment since the beginning of the rise in PSA numbers has become more and more stressful. Will this next number be the one that puts me back on the Lupron injections with all the side effects that come along with it? I have not yet discussed a "trigger" number that would warrant returning to the ADT treatments but I will bring it up at the next appointment. I will follow this post with the results of my latest test and information about the decision that was taken with my oncologist. I would be interested in hearing from anyone else who has been trying this "intermittent" approach to ADT therapy and would encourage them to post what their experience has been.

I continue to enjoy my vacation from Lupron injections. After about two years of quarterly Lupron injections, I went off this treatment in July of 2015 looking forward to an improvement in quality of life free of the side effects of the injections. At the time of quitting Lupron in August 2015, my PSA reading was 0.01, "undetectable" in most literature I've seen. My most recent PSA reading was in April of this year (2019) at 0.94. Clearly the numbers are rising as expected after withdrawing the treatment. But the rise has been slow and at each visit, my doctor and I assess the situation, looking for any drastic change in the rate of increase. None so far, so we continue to "wait and watch." Strangely, the only discomfort I experience after Lupron are continuing "hot flashes" several times day and night. No explanation from my doctor. But I do not suffer from the severe headaches, the fatigue and the occasional bouts of depression that came with the Lupron. So far, so good, in other words. But every quarterly PSA test and every doctor visit causes anxiety. I am grateful that my doctor has been comfortable so far with continuing to suspend treatments.

I continue on a "watch and wait" program after stopping quarterly injections of Lupron as of August of 2015. My PSA numbers continue to rise slowly as was expected, from "undetectable" to what it is now: 2.43. My Oncologist, who prescribed the Lupron and who agreed to follow the "intermittent" approach to ADT therapy since the summer of 2015, has just left the practice where I am being treated here in Albuquerque, so I am with a new Oncologist whom I have not yet met. Here's hoping he will see fit to continue this process of tracking the rise in PSA until there's reason to take action due to a sudden doubling, for instance. I don't yet know what he will want to suggest. But I do know what I will want to propose, namely, that we continue to do what we've been doing for nearly five years now.

This August (2021) would mark 6 years of "vacation" from treatment of my cancer!

Last January (2021) my PSA was measured at 3.42 and yesterday, April 20 2021 it's at 5.20. That's not quite doubling, but it is a significant rise. Of course, being off treatment for 5 and half years I was expecting a rise in PSA and expecting that there would be a moment when I would need to make a decision about going back on Lupron or some other treatment to get the PSA back down to Zero.

I don't know if that moment has arrived or not. I'm scheduled to meet (video) with my new oncologist in June, so will have yet another set of numbers to discuss with him then. Likely to be higher than 5.20, but who knows. I will post again this summer to let you all know how these things play out after that consultation.

It's been a while since I've added to my story. My oncologist is pretty conservative, which I like at this stage of my life with PC. I've been holding the PSA at bay with bi-annual Lupron injections accompanied by Casodex. But, while PSA has been around 0.0 for quite a while, it is now slowly rising, reaching 0.99 just two months ago. Since PSA is still being detected, my physician's concern is now whether the cancer has left the immediate area of the prostate which was surgically removed in 2010.

My current treatment is "chemotherapy" consisting of 4, 250mg Zytiga (Abariterone) tablets per day, plus 1 5mg Predisone tablet 2 times per day. Lupron injections continue bi-annually. I am scheduled for a PET CT Scan in two weeks. The hope is that we will find out if the cancer has become lodged in tissue or bone beyond the original area of detection back in 2009.

Since the CT Scan should tell us about possible metastasis of the cancer, I will post the results of that scan and include my Oncologist's plan of action, if any, as the result of the new information. So, cheers to any fellow travellers who're reading this, and I'll show up here again later this Spring.

Reed's e-mail address is: reedanderson3 AT gmail.com (replace "AT" with "@")