I don't think there is enough time or space to recount my whole experience so I will try to be brief as possible and still make some sort of sense. I have about fifty pages of experience and thought notes in a file I keep on this subject. This hit me out of nowhere like I suppose it does for most victims. I never thought "I" could have cancer. I kept waiting for "the mistake" to be found but it never happened. This was for real and it was no mistake. The GP doctor questioned my desire to check my PSA saying it could cause me a lot of needless worry for no good reason. He was right of course but there was a very solid reason for worry as the biopsy showed a large percentage of cancer positive cores - ten of twelve and about half over fifty percent with several to the edge of the core sample. In short, I choose surgery as the primary treatment since it left a chance of a second "curative" treatment if it failed. I was told up front that there could be no nerve sparing attempted because of the advanced state of the disease found at biopsy. This was just another piece of bad news and more on that later. Surgery experience went as planned. I have a twenty two page journal about that healing experience but I won't get into that here. At my first check-up I was told that though they had been hopeful that they got it all, it appeared there were some positive margins found during the pathology report and the need for follow up radiation was suggested. More bad news. Four months into recovery and things seemed to be progressing well when I had a heart attack and had a quadruple by-pass performed. (Stress is not good for your heart and I guess it got to me.) After recovering from the heart attach and that surgery it was on to radiation therapy to try to control my slowly rising PSA. Radiation is a walk in the park compared to surgery by the way but I think I would still go with the surgery if I had it to do over again since radiation fries your insides and leaves a lot of scar tissue that makes any further treatment very difficult as far as curative procedures if radiation fails. Radiation can have some nasty effects a long way down the road also so it is not to taken lightly even though it seems harmless at first. Anyway, radiation knocked the PSA down from a .12 to a .07 at last check. That is it for any curative treatment options so now it is a waiting and hoping game from here on. Welcome to the club huh! It is back to the grey area of not really knowing what the end will be and that is the part of this disease that is also devastating. The disease "may" kill you even though it doesn't have any symptoms and the treatment WILL cause you a lot of anguish, both physically and emotionally. Knowing the physical side effects ahead of time is one thing, but actually being there and experiencing them is something one cannot really be prepared for. The song lyric that goes, "You don't know what you've got till its gone." says it like it is. The emotional effect of it all is something that I have not been able to put behind me yet after two years and is hardly a minor side effect. Support groups might be of help but are few and distant. I am ashamed that it is bothering me so much but am powerless to overcome that it appears. My heart surgery is a past memory but this cancer experience is with me every day thanks to the many reminders of it every day and the possibility of it coming back in spite of all the sacrifices made to try to eliminate it. I feel a little like one of those walking dead zombie characters. I seem normal on the outside but I know that I am incomplete and dysfunctional and, on the inside, mourning what has been lost in the hope it is all for a good reason. J.R.
Have been looking through this site trying to come to conclusions but have had no success other than to reinforce the fact that we are all experiencing different aspects of the same thing. I was hoping to find some conclusion to how serious it is when a seminal vesicle is involved with cancer. I keep hearing hints that this is very bad news but have heard no real facts as to why or how serious. Is it because no one wants to convey bad news? All my urologist said is that it appears we didn't get it all and there were positive margins and invasion of one seminal vesicle. I had the radiation and that dr. said my PSA was so low that he was confident that I would die from something other than prostate cancer but still no definition of what the SV invasion might mean. I realize no one can predict much of anything about this disease but it would be nice to at least know what area of risk I am in. Trying to keep a positive attitude that I am done with this disease but also realize I have to be realistic and on guard.
No changes experienced here. Still trying to deal with and get over the feeling of loss from this ordeal. That would be a lot easier were it not for several factors. One is the feeling that this ordeal is never quite over. One can never have the assurance that it is in the past and can be just a memory. You never know if it will come back and that threat is always in the back of one's mind, not letting you let go and move on. Another problem in letting go is the fact that one can never know if the right decisions were made. Would my life have been normal if I had never learned of the presence of this disease? Would I have died from it? Will I still die from it after all this misery and loss? As an engineer type, I am used to dealing in facts and there is no such thing with this disease. I am not a gambler and that is what this disease is all about. It is, at this stage in history, just a vast ongoing experiment as the medical industry tries to find a good way to deal with this illusive enemy. I hate to even think this but finding a cure - or better, a prevention, would be devastating to medical profits made from this disease. Somehow, I don't believe that will be a factor in the near future. Maybe some day all these cancer "treatments" of today will be thought of as we now view the practice of bleeding people to "cure" in the days of old. It appears that the best method is to choose a course of action and then put blinders on because once a path of treatment is taken, there is no going back and other paths are inaccessible. Your outcome and final destination is yours alone. Some folks try to help by saying things like,"If you have to have cancer, prostate cancer is one of the most curable." First of all cancer is not curable and second, I have noticed that the folks saying these things either never had a prostate or still have theirs. Cancer is cancer no matter what type it is, they all suck!
I am ashamed of myself in not handling this better. So many others have done so much better with more serious situations. In reality I have been very fortunate so far - so why don't I feel that way? It is time to "man up" and move on but easier said than done. Work in progress here.
O.K., I am going to write about this in spite of what might be considered trivial and even humorous in light of the bigger picture. So go ahead, laugh, criticize, do whatever makes you feel good. Please pardon what may become a play on words here as the subject lends itself nicely to such comparisons. As this site shows in one of its features, humor is sometimes the only alternative to solutions for some aspects of this ordeal we all go through here.
I have come to the unexpected conclusion that one small side effect of treatment for PC is really having a big impact on my acceptance of what this disease has done to me. That side effect would be the drastic loss of size and mass of my penis! It is one of those "What the _ _ _ _ !" moments to discover this on top of all the other serious side effects that one endures from this treatment. I was told from the start that I would be undoubtedly, totally, and permanently impotent after treatment due to the advanced state of the cancer. No nerve sparing was possible and still be hopeful of getting all the cancer. O.K. I can handle that and deal with it. I tried my best to prepare myself for what was given to me as a fact. Though there is no way to be fully prepared for reality, it happened and if that is what it takes to beat this disease, so be it. What I was not prepared for - and was not warned about - was the loss of about fifty percent of my flaccid penis! Having been circumcised at birth, now having what masquerades as a foreskin is quite a surprise as the little guy backed up into his own skin like a turtle in full defense mode! It was insult piled on top of injury! Come on! This is just not fair! This side effect, that seems to be considered too minor by the medical community to even warn about - or even acknowledge at times, doesn't appear to be so minor at this point. I guess I never gave much thought to how much pride one places on this part of his anatomy. Who would think it means so much to one's self image? As I remember it, I can see it as something admirable before. Now, it is humorous, cute, but nothing to take any pride in. Its present, miniaturized, state is a constant reminder of a bad experience. I am finding it to be a stumbling block to mental recovery and moving on. Adding this surprise side effect to the fact that there are no assurances that the cancer is defeated is not much help in maintaining a positive attitude.
I have the feeling the the medical community knows the cause for this and could do something to eleviate the outcome but sees no reason to do so. As this organ depends so much on blood flow for proper health, why not re-establish a proper blood supply to and from it after they are done cutting and and cauterizing everything else? Insurance pays for breast reconstruction after breast cancer so why shouldn't some extra preservative precautions be undertaken to prevent this affliction from happening after having a prostatectomy? Isn't this procedure bad enough without adding this added insult to one's self image? All I am asking is that we are allowed to keep what we had to begin with even if it is dysfuctional.
Maybe most feel that I am over reacting to this and I probably couldn't argue the fact. I am not proud of my feelings but they are what they are. If nothing else, this is a way to at least express them somehow. That is the only help available to me at this point. Hopefully in a few years when I am still alive and free of this disease yet, I also can also laugh at these words and be embarrassed by them.
Nothing new here as it has been a while since last blood test but it is due soon again. Just want to express my admiration to my fellow victims here on this site. A lot of courage is shown in the face of much adversity. Some stories bring on a lump in the throat and wet eyes! (Since my prostatectomy I seem to be more prone to emotions. I wonder if this is another side effect or is it just from the commonality of having this disease and knowing what others are experiencing. Maybe it is just another effect of loosing so much of one's manhood from this experience - each new treatment takes away a little more.)
My guess is that we are all stuck with this situation and might as well get used to it. Many new advances are being made in treatment but that "ounce of cure/prevention" seems a long way off yet. Hang in there! Jon.
Just a short update here to record the latest PSA. Not much else has changed and the PSA remains the same it seems, coming back as less than 0.1 which is as low as the VA lab test reports. I won't get the more accurate test till Oct. when I get my other yearly physical. Hopefully this means it stayed at, or even better, went below the 0.07 it was at last check. I guess I will take this as good news for now though one hates to chance jumping up and down with joyful relief with this disease. I was fearful of course especially being it is about 18 months since radiation and I have heard some have experienced a spike at about that point after radiation. Testosterone was normal, whatever that number is for a 68 year old , so I am hoping the low PSA means there is no cancer to use the hormone as fuel. No more up-dates for six months will mean good news, here's hoping! Jon.
Not much new to add in my case. I just want to note that I have been monitoring the updates on the site and just feel the need to comment. I can see no trends of any single treatment being superior to any other. Results of treatments and circumstances of disease are endless and infinitely variable making any generalizations impossible. I see some accounts that are so very positive, with the person being very happy and satisfied with the successful results of his treatment. At those I feel very happy for them and honestly, also feel some envy on my part. I see some accounts that border on tragic, and for those I feel sorrow and compassion along with a realization that things can be worse and I should feel fortunate.
In conclusion, it appears that each person going through this will have a different set of circumstances and results to contend with. No individuals going through the same treatment will have the same results in the end. What worked for one may fail for another. Always, it is a gamble in every aspect and result. Advances are being made in the area of diagnosis and treatment but virtually nothing in the area of prevention or cure. Treatment consists of destroying body parts to "maybe" kill the disease. We are still all victims of chance in trying to deal with this mysterious and dangerous adversary. The vast majority of us will never be free of worry from this disease. Wouldn't it be nice to be able to just turn off the thinking about it constantly! Hang in there! Jon.
Just to up date here as I had a physical and the PSA test done. PSA is slightly up from last year, now at 0.09 from 0.07 last year at this facility. I am not sure how to interpret that slight rise. Hopefully it is just a fluctuation and not the start of a trend. The nurse said she would be very happy with that number - I didn't comment, as much as I wished to - just too many quips I could think of! I of course would very much like to see all zeros! Other than that possible "slight" glitch, all other parameters came out very well from the physical and even improved over last year's checks. That is good news and I will try to make that over ride the PSA concerns.
I hate what this disease and the treatment has done to me but have to believe it was my best choice. Had the treatment been less severe, I believe I would be in more serious trouble from the disease. I hate saying this but, my present situation is preferable to what the cancer might be doing to me today had I not opted for allowing such drastic treatment. I hope and pray it proves to have been enough and not too late.
My complements to this site as it is a great help to all of us in this situation. It is a place of refuge and reassurance for all of us suffering from this private war. Jon R.
Just got back the results of another six month PSA test. Same as last year at this place (the VA) so it has not moved! I will take that as good news! My civilian test six months ago came back as 0.09 so it either is still this or hopefully even lower now. What a relief!! Too early yet in my journey to get too excited but some good news is always welcome and taken into account. Not much else to add today, all else about the same. As with my last civilian physical, all parameters of today's physical came back normal or improved over last year. Told the wife she was stuck with me for a while yet the way it looks! Best to all my brothers out there who are in this involuntary club! Jon.
Just received my yearly PSA test result. Not really what was hoped for and beginning to be concerned again. It now comes back at .13 so I would have to assume the trend is a slow rise over the last three years telling me I am not done with this rotten disease. Not sure when action needs to be taken or when/if it should be started. No matter how one feels about the matter, nothing much one can say to change the situation. So far I have done nothing as far as treatment since salvage radiation four years ago. Just not feeling very good about this right now, any further words would be pointless I guess. Hang in there guys, Jon.
Just a notation here, no real changes going on. Still visiting this site daily and coping with things. Mostly concerned these days with thoughts about my slow progression in PSA results and thinking ahead - maybe not the best thing to be doing, but feel being educated on what the next "phase" of fighting this disease might be is a wise move.
I have to comment on an update I read a week or two ago. The author understandably wanted to remain out of contact. His story concentrated heavily on the negative aspects of this journey that we are all aware of. Looking on the bright side was not in his story at all. I cannot agree or disagree with anything he said. There were no thoughts in there that all the rest of us haven't had. Still, dwelling on the negative is not very helpful in this arena where there are so few positives. It is a challenge not to do so and I am guilty of the same thing. This journey is not for sissies no matter what course one decides to take. Every decision or non-decision has its consequences. Some are immediate and some may not surface for years. The statistics given were worth noting but, as with all statistics, we need to keep in mind that they do not usually apply directly to any one person. Statistics can be slanted in many directions and all seem plausible. In the end, it is still - pick what poison best suits you. This is an incurable disease and one can pick any way he wants to deal with it. Any choice will be a gamble of some kind with consequences, whether he chooses to fight it or let it run its course unhindered. This is the hand we were dealt and it is our choice of how we want to play it. One is not usually given a choice of being dealt in but how you play it - or don't play it - is your choice. There will be winners and there will be losers. This disease has been studied for many years and still there is no definitive way to predict its outcome for any one of us. It is the ultimate definition of unpredictable. It is indeed a frustrating situation that breeds contempt for this disease and its treatment. For now, it is what it is and we are forced to endure all the discontent that situation brings. How we do that is our choice. The best to all my cancer brothers out there! Jon.
Just back from my yearly VA physical today. If accurate, it is better news than I got from the last six month check of 0.13, coming back at less than 0.1 today - as low as the VA checks it. To me, that may break the rising trend from 0.07 two three years ago. As I said, if that is accurate, it might mean there is no change and that the more accurate check I got locally six months ago may be prone to catch small changes that aren't relevant. (?) At any rate, I feel better that there may still be hope that the beast is asleep or better yet - GONE. That would make all the sacrifices so much more - justifiable - I guess would be the word to use. I wonder if the nurse noticed my near emotional celebration at the news today. I think I caught myself in time, as I know one should never let down his guard when dealing with this disease. As an added bonus, all other parameters of the physical came back in the normal range, (cholesterol was 89!) That is good news for someone having had a 4x heart bypass shortly after cancer treatment! In spite of the clouds today, the sun still shines!! Best to all my cancer brothers out there! Jon.
Just want to update here with some encouraging news. Got news of latest PSA and it has GONE DOWN from .13 to .1! The downward reading is not the exciting part but is that it didn't continue the upward trend of the past couple years at this facility! I am hoping this means I am at a stable point and that means no cancer issues. Only time will tell however but at this point I am cautiously celebrating. All other parameters of the physical were excellent also.
A little essay I wrote a little while ago that I think a lot of us can identify with;
Losing one's prostate to cancer treatment is a little like losing electricity in your house. After one gets used to not flipping on a light switch that does nothing every time one enters a room, we try to make up for the inconvenience by making use of flashlights or any other substitute we can think of. You are soon brought to a point where you realize and appreciate how important it is to have power in the house. All the light fixtures, switches, and appliances are there but nothing works without the power that brings it all to life. At this point things begin to get frustrating. Fortunately a power outage is temporary -- a prostate outage is permanent!
I don't say all this to discourage anyone from treating this rotten disease but just to help and prepare those unfortunate enough to be entering this arena - you can live without a working prostate just as folks lived without electricity years ago, but - it will be life changing.
All hang in there and stay positive as hard as that may be at times. Encourage each other when needed. Jon R.
I forgot one note in my latest update that I am hoping is significant. I had my testosterone level checked at my last physical also and it came back on the higher end of normal. That, along with the drop in PSA from .13 at this facility last year to a .10 this year, has me hoping that with this "abundance" of testosterone and a drop in PSA, that there is no cancer to use this testosterone as a fuel and whatever is causing the PSA reading is normal tissue. One can cautiously hope. Jon.
I have been monitoring this site long enough now to have formed some opinions about this extremely unpredictable disease and its equally unpredictable treatments. NOTE; opinions only!
PSA testing - As with so much concerning this disease, this is also a controversial issue under constant scrutiny and guess work. Some say it is responsible for much over treatment while some say it is an important and life saving tool. I will not argue with either side of the coin as both are real possibilities. In my case, it may have saved my life. I can't prove that either, however it was the only thing that told me I might have cancer and the cancer turned out to be fairly advanced and aggressive. This disease often gives no indications until it is established to the point where options are few and often futile. I say get tested early for a baseline and keep checking from there on.
Penile atrophy after treatment - I think this is an under reported affliction, after all who wants to admit to this? I think surgery is the worst offender here as parts of the "pipeline" are physically removed but it seems this is a common problem from all treatments to some extent. I hear very few reports claiming things are the same as before in this department even with those having "full" recovery. This "small" problem is often unreported and very often not warned about before hand. With surgery, the more serious the cancer, the wider the cut and the worse the result for the penis it would seem. (Still alive, healthy, and able to complain however!)
This disease is the ultimate in gambling and guessing. One very seldom knows what the best course to take is. One could be diagnosed with this cancer and not do anything and live to a ripe old age with no problem from it - or - it may kill you. You may treat it aggressively and it may still kill you. If you treat it, the only for sure thing in this arena is that, treatment will cause some issues for you that are very possibly life changing. Of course, treatment may also get rid of this disease for you and that is what we all hope for if this course is chosen. Not treating it is like leaving your campfire burning when you leave and thinking it can't start a forest fire. Best to all cancer brothers out there, Jon.
Just back from my yearly VA physical. Good news on all fronts. PSA has not moved. On with life for the next six months! Jon.
Time to update again. Had my fall physical and all came back very well. PSA was up slightly to .11 from .10 last year at this facility. Not concerned at this point as it has been hovering one side or the other of .1 for several years now. Variaitons are acceptable as long as they aren't consistantly in the up direction. Looks like another six months of success has been achieved and now on to the next six mionth period. All hang in there in attempts to put this behind us and move on. Jon R.
Guess it is time to update before I get a reminder. Hope everyone else is doing well! Nothing note worthy here I guess. Last test showed no change. Good news there. I have finally come to accept my non functional life. Better than the alternative. I always knew that to be true but not easily accepted under the circumstances. It has just taken me a long time. It is hard loosing part of yourself but still have arms legs, eyesight, most of my hearing,etc. These are things we use every day and take for granted until we are made to appreciate their worth. Computer crashed before COVID so now using notebook thing so hope this works. Hang in there folks! Jon.
As with many on here, a year goes by quickly. Time for another update. Not much to report. PSA up slightly again so at this pont it appears a general trend (.1 seven years ago to .13 at this time) but nothing extreme. I don't see it as a problem at this point. The highly publisized covid scare, politics and our rights, now in jepardy, seem to be more important things to be concerned about. Just more uncertainties to pray about. Jon.
Time to update I would guess. Not much to report this time so no news is good news. The last two years has been hard on everyone and we are all waiting and hoping for better days ahead. Partisipation in this site has dwindled also it appears, which is too bad, as it is a valuable resource for those just entering this arena.
My stats have not changed so just holding my own here and slowly relaxing and moving this cancer concern to a lower level. Still have all the side effects from the experience that remind me on a daily basis of what I have been through and that these things are now a part of my life. No choice but to accept that they are here to stay and just move on living in spite of them. Life is good compared to the alternative so I try to just deal with the imediate issues that face us every day from the chaos and adversity caused by the last 20 months in our country. This too shall pass - we all hope.
Now seventy five (I think) the aging process is in the forefront of issues for me. Hard to admit but I am not the man I used to be in so many ways. While still continent, I do notice more problems in that area and worry that age will not be my friend for that issue. Impotence and even small continence issues are a personal embarrassment and hard on the male ego. It is tolerable, though not enjoyable and I am thankful for a very understanding spouse! Best to all in this position and blessings to those just entering into this "club". Jon
Time to update again after my yearly physical. Not much to report and that is good news at this point after ten years post treatment.
I was worried a bit, as my previous numbers had been very slowly rising and in the past few months I have experienced increasing discomfort in my left hip and leg. I was concerned it could be the cancer returning and invading my joints. Luckily (?), my number was actually at the lowest it has been in the last ten years (.09) and the Dr. said my hip and leg discomforts were likely from the aging process. Better than the alternative I guess. I am fortunate to be experiencing "old age". I keep fighting that also by staying active on the bike trails and splitting wood for winter heat and doing my many hobbies when time permits.
It is easy to overlook the importance of this very helpful site when things are going well. Participation has dwindled in the last few years it is sad to observe, but it is still a very helpful aid to anyone just entering this cancer journey. It helped me a lot when I needed it and I am here, willing to help anyone who cares to contact me with questions about the experience or just wants to talk. Jon R. in Minnesota.
Just been reminded it is time to update again so here it is. 12 years after treatment, I am still standing and no additional symptims. My last PSA was a bit disturbing as it has risen from the .1 area to a .19. Not a big change but something to be concerned and watchful about. Will test again in a couple months to check for any changes or trend.Hopefully just a glitch.
Jon's e-mail address is: sjrhideaway AT embarqmail.com (replace "AT" with "@")
