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John K lives in Pennsylvania, USA. He was 54 when he was diagnosed in January, 2014. His initial PSA was 7.00 ng/ml, his Gleason Score was 7a, and he was staged Unknown. His initial treatment choice was Surgery (Robotic Laparoscopic Prostatectomy) and his current treatment choice is None. Here is his story.

Not something you expect to hear at age 54 but should not have been totally surprised since my father had it at age 65. He is still kicking at age 84 after surgery.

After the shock and let's say that was a full week you start thinking clearly again. Things were rushed at first. It started when my GP noticed a spike in my PSA. He sent me to the urologist and he did a digital exam. Well there was some firmness and he said lets redo the PSA test in another month.

I knew things were going the wrong way when I got a phone call in two days saying we need to do the biopsy. Getting that done while not pleasant was not all that hard to get through. He said to call in a week to find out the results. Well two days later I get the phone call. There was a message on my answering machine to call. At that point I knew what I had. So my wife and I met with the doctor and we got good news from his perspective it is early and things surgery is the way to go. He also scheduled me for a bladder scope which came out clear.

Now at this point things are going way too fast for me to understand, but I caught a break because he no longer does surgery. At first I said well this is OK because his partners are all experienced. Then he says he wants me to meet with a new young doctor that will be joining the practice in March. If there was one thing I read that I remembered is if you are going to have surgery then you want someone that does more than just a few of these.

Thus I put out the word I have cancer and started to look for both new doctors and more information. I'm glad I started to think clearly again. It is so hard to stop thinking when you hear that word cancer.

So this is where I am at. I have a new doctor that I will meet with during the first week in February in Pittsburgh. He is extremely experienced and also will include a radiologist in our meeting. So basically I am starting at page one again.

After doing tons of reading I am still not 100% certain of what treatment I want and of course it will depend on the findings and interactions of the new doctor. I am leaning towards surgery but want to know more about radiation.

What I find very frustrating is that there is no book or rule that says your cancer is this and you do this for treatment. You're really left to two options. What the doctors think or what you personally find out from your own research. Then of course age is a factor, for example at age 54 I would pick a different treatment for the exact stage of cancer than at age 65 or 70.

I know I don't have a lot of facts or numbers for people to see right now but this all goes to show how confusing this entire process can be. Once I get the numbers I will post them and then try to give you a better idea of why I choose the course of treatment.

It is so easy to just rush into things, after all it is cancer and the only thing you can think of is dying in a month. Well I can say sit back and take some time to think when it is in a so called early stage.

UPDATED

February 2014

Giving everything a little time is important to get a clear picture and thought process. First let me up date the important parts. My PSA went from a 3.10 to 4.16 over a three month time period. I do not know at this time what is was prior to the 3.1.

The biopsy found two samples at a 6 and one sample a 7 of 11 samples.

Life settled down and I met with a surgeon and radiologist. My digital exam revealed a small hard spot but nothing that was a great concern to both doctors, yes I had two in one day.

The radiologist said he could treat me but said at my age and the great possibility that it is contained said surgery would be a better first choice. He said he really would not want to do radiation on someone age 54 if he does not have to.

The surgeon was hand-picked by me from references that were given to me. I like him so that was a plus. He confirmed the same findings as my original surgeon and the radiologist. So having three doctors agreeing is pretty good.

This was the general overview of all three doctors. The cancer had not spread from what they can tell. Methods used bladder scope, biopsy, PSA and Digital Examples my symptoms. They are getting up some night to go to the bathroom, using a little more force than usually to go and some dribbles after. All three said there is no rush but that at this early stage it is best do get it taken care of with surgery.

My surgeon is experienced and will be using the da Vinci method. He is very experienced in this procedure doing several hundred. He was upfront about what I should expect not promising anything magical but common sense.

The surgery is set for March 14th giving me more than enough time to prepare and also do some more homework.

In addition I talked to my family doctor and he too supported the surgery at this point in time.

What I can share at this point is this. When you hear the word cancer your life will change and you will think death and your mind will go through a period of time that it is not clear. Take some time to find out what you can about the degree of cancer you have. Then do your own home work to learn about the cancer and the different treatments. I let people know I had cancer hoping to learn about others but most importantly to get references of other doctors and treatments. It worked I got several to investigate.

Now at this point I am hoping the surgery goes well but most important my follow ups are giving me the results I am hoping for no cancer. I will update after surgery.

UPDATED

March 2014

Today was my one week follow up from surgery. The surgery went great last week and I was up walking around the next day. I was home in less than 48 hours of my surgery. To be honest there is nothing special to say about the surgery. I had a good surgon and team that was experience in robotic surgery and it went like a text book. The key is finding a surgon that had done a lot of the robotics procedures.

Today confirmed for me that robotic surgery was the right choice. The results are good. First the Gleason grade did not change from a 7. There were no signs of cancer from the pathology report. The only so so news was that is was in the margin in one place but had not gone outside.

Thus my recovery was extremely fast and taking the surgery option was right for me.Today I don't even feel like I went through major surgery. I can not even comprehend how fast I got back on my feet.

Of course I have some leakage but really only after going to the bathroom and it is not much. I was expecting a lot more. I think a full month will give me a better indication if is is going to be this easy for the incontinance issue.

As far as the ED, well it has only been one week and I just got the cath out today. I'm probably going to need more time to see how this works out.

Game Plan - even though there was some in the margin we will see how the PSA tests go before evening thinking there needs to be additional treatment. My first one is in 6 weeks and if it is fine every six months for the next five years.

Personally I am happy to have it out of my body and now I know 100% what I am dealing with. That takes a ton off my mind. I would have hated to have to deal with this in another five years at age 60 when it could have been more complicated.

I'm sorry to be so brief but it all went that well.

UPDATED

May 2014

Well it has been a good but long six weeks. I ended up with blood clots in my lungs along with first time ever guot in my knee. I did spend an extra 5 days in the hospital with bad lood clots in my right lung.

However I am doing extremely well except of course I have to take blood thinners for a total of six months. But at my doctor visit today I got the good news, no signs of cancer and a 0 PSA score. In addition I no longer have any restrictions on my activities.

My bladder is working at 100% and leaks are next to none, that issue just keeps getting better that I say I am at 100%. The ED well it there and I just got some prescriptions for that so maybe later I will start it and see if it is going to work. The only real down part is that I did put on some extra weight over since March 13, about 20 pounds. However with the blood clots and gout and cath that I had to get redone for a total of three weeks and I not complaining. Life is pretty well back to normal for me.

I will update in three months since that is my next follow up. If that is clear then it is every 6 months.

UPDATED

August 2014

Wow my six month check up, time goes by fast. My PSA is zero and of course that made for a great day. I am still on blood thinners for the clot that formed after surgery, but I expect to be off it in another month or two.

I have no complications except for ED. I have no leakage and everything from that point of view is just like pre-surgery. Except of course I have no issues what so ever going to the bathroom. I don't even have to get up in the middle of the night to do so.

I have that extra 20 pounds that I gained though and now will work to take it off.

My next PSA test will be in February, though the doctor said I can now get those done by my primary docotor and will only need to come back to him if there are any issues. That saves me a 7 hour trip which includes travel time and the actual appointment. In addition I will work with my primary doctor on the ED problem.

Surgery worked for me at this point. Except for the blood clots in went perfect and I am 100% back to what I would call life before knowing I had cancer. Once again the surgery was a breeze and the only thing I didn't like was the cath, but that was just short term. I no longer use pads and never once had a leakage in the past month. I will be honest I didn't even do the exercises that were recommended.

UPDATED

March 2015

Wow one year and I am doing well with no signs of cancer. ED is the only side effect that I have. I have no problems with holding my bladder at all and no need for any pads etc. I wish I could add something more exciting but really being cancer free is pretty exciting to me.

UPDATED

April 2016

It has been two years and no problems with my 2-year blood test. When everything is good there is not much to say.

UPDATED

June 2017

Doing just fine so far.

UPDATED

August 2018

I'm doing fine at little over 4 years. Unfortunately my wife is now battling cancer.

UPDATED

January 2020

I'm coming up on 6 yrs in March. Just had a checkup and no concerns. I still get PSA checked twice a year. My wife has passed one year after surgery for breast cancer and so far she is good too.

UPDATED

May 2021

I just thought I would give a update for 2021, as I move into my 7th year everything is great. I have been cancer free. My wife has been cancer free for 2 years since her breast cancer in 2018. In addition I survived Covid. I caught it in January this year. Some other good news I retired in June 2020 at 61. Life is great.

I just had my PSA done today and i got my results, .06.

I wish everyone a great 2021.

UPDATED

June 2022

2022 is half over and both my wife and myself are still cancer free.

I'm doing just fine with no issues, bladder control has been normal. For me surgery was the right call. I still get my PSA checked twice a year. This has been my choice even though my doctor gave me the option for once a year.

UPDATED

August 2023

Well I had a little issue. From about March to November my PSA doubled

It went from .04 to .08. While I wasn't concerned my doctor said it doubled and he sent me to my urologist. He sent me to an oncologist. Yeah. I had one hormone shot in February follow by 34 low doss radiation treatments. They were every day except Saturday and Sunday. Honestly it was bad. Though I had to drink a ton of water prior to every treatment. I was a good student and always had a full bladder for treatment. Afterwards I had another PSA around June. For now all is good. I get my next PSA test next week with a follow up with oncologist.

UPDATED

September 2024

I get checked and a PSA test every 3 months. Everything has been good since my radiation last year. (Feb 03 / Mar 03) I have had a MRI and all organs are good. At this time I have no issues but get nervous every quarter when my PSA blood test is done.

John's e-mail address is: johnoleskey AT msn.com (replace "AT" with "@")


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