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This is his Country or State Flag

Jon R lives in Minnesota, USA. He was 65 when he was diagnosed in November, 2013. His initial PSA was 5.70 ng/ml, his Gleason Score was 7, and he was staged T3a. His choice of treatment was Surgery (Robotic Laparoscopic Prostatectomy). Here is his story.

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.

UPDATED

January 2016

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.

UPDATED

March 2016

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.

UPDATED

March 2016

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.

UPDATED

March 2016

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.

UPDATED

May 2016

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.

UPDATED

August 2016

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.

UPDATED

October 2016

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.

UPDATED

April 2017

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.

UPDATED

October 2017

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.

Jon's e-mail address is: sjrhideaway AT embarqmail.com (replace "AT" with "@")


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