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This member is a YANA Mentor This is his Country or State Flag

Dave Robbins and Karen live in Arizona, USA. He was 59 when he was diagnosed in May, 2012. His initial PSA was 4.50 ng/ml, his Gleason Score was 7b, and he was staged T2c. His choice of treatment was Surgery (Retropubic Prostatectomy). Here is his story.

I am posting the stats of my disease on the chance that there might be someone reading this that has a similar case or perhaps just a medical interest.

It is a common practice in online support groups, (especially PCa) to provide "stats", so here they are, albeit a bit out of context! Lol!

Age At Diagnosis: 59

Pre-Op PSA: 4.9

Diagnosis: Prostatic Adenocarcinoma

Surgery: Retropubic Radical Prostatectomy (RRP) 07/16/2012

Pathologic Stage: pT2c,pNO,PMX

Gleason Grade: 4 3=7

Extraprostatic Extension: Neg.

Lymph Nodes: Neg.

Seminal Vesicles: Neg.

Positive Surgical Margins: Multifocal Involvement, R.Apical (1mm) R.Lateral (3mm)

Tumor Quantitation: <5% Of Prostate

Tumor size: 1.1cm.

High-Grade PIN

Perineural Invasion: Present

I just saw Doc E. this morning for a follow-up due to a rising PSA (Prostate Specific Antigen) of 2.9 to 4.53 in 4 months.

He had been checking my prostate and PSA values for several years without much concern. The gland felt normal on palpation and I am currently asymptomatic.

My father had died of prostate cancer when he was only fifty nine and his brother in his early seventies so, despite my intense fear of finding out bad news, I have been very careful to have frequent exams including a PSA and DRE (Digital Rectal Exam).

Doc had decided to call this "BPH (Benign Prostatic Hyperplasia) until proven otherwise". Ar my current age of 59, that would not be surprising.

The last jump however seemed to unnerve him a bit and he recommended that I see a urologist for further evaluation.

I was a bit shaken by that news but Doc reassured me that he felt confident that is there WAS an issue, that we were catching it early. In fact, he seemed more concerned about my cholesterol levels than my prostate!

I called Doc K's office when I got home and was able to get an appointment for the following Monday

Well it's over and I survived.

For anyone who might possibly read this and is considering having a needle biopsy of the prostate, or if you're just plain curious, here's the bottom line (I can't believe I just said that!)

Don't be a wuss like me and let your imagination run away with you.

THERE IS NOTHING PAINFUL OR SCARY ABOUT IT, even without any anesthetic whatsoever.

It took all of ten minutes and I was dressed and out the door.

The most uncomfortable part of the whole thing was when he stuck a Q-tip loaded with Betadine up there to clean the local area. It stung a little because my butt was already sore from multiple times on the john due to the pre-medication, in this case, Cipro.

I'm not going to do a play by play of the whole thing but for those who are worried about what it will feel like here are the facts.

The dreaded ultrasound probe: Feels pretty much like getting a DRE from someone with large hands. No worries!

The needle punch: Sounds like a cross between a large rubber band snapping and a stapler.

Feels like a tiny prick. I had 12 cores done and really only noticed 2.

It happens so fast there really isn't much time for the brain to respond to the pain signal. Again, no worries!

So...what IS the downside? NOW WE WAIT! Waiting for a week not knowing what the results will be. That's the hard part.

Oh yeah... In case you're curious, if you are without health insurance and are self pay as I am, this procedure will set you back somewhere between $1500 to $2500 total out of pocket cost depending on who does it and where it's done.

Date: 2012-06-15 08:56:29

It's Friday morning, nearly two full days since the biopsy. Still have a small amount of blood in the urine, otherwise feeling ok.

My own imagination seems to be my biggest enemy in dealing with this. I keep going over every possible scenario in my mind which just adds to the anxiety. Even if the results come back negative, the waiting game will still continue for the rest of my life. Watching and waiting.

I'm going over to a client's house today to service his pool, then some yard work around the house. Hopefully, getting out and working will take my mind off this for a while.

Going to try to talk with my brother in law on Sunday and get his feedback. He went through this several years ago and seems to be doing fine. Maybe a good conversation with a PC survivor is what I need.

I worry about how my wife is handling the stress. She is my rock and is incredibly supportive and understanding. She is also nearly ten years my senior and has a mild cardiac arrhythmia. I need to learn that this IS NOT all about me!

Date: 2012-06-16 16:09:59

Not too much to say today. Getting out and doing stuff seems to help deal with the stress of waiting. I am WAY too pre-occupied with myself and I can't decide whether that's ok or not. Am I just selfish or do I deserve a break?

I don't want to be a cancer patient much less a cancer statistic.
I hope there's something good on cable tonight. I could use a decent comedy right now.
Damn I'm depressing, I don't know why the wife puts up with me.

Date: 2012-06-17 18:36:24

It's Sunday night. Hot as snot here!!! Had a pretty good day. The wife convinced me to go see a movie with her so we went and saw 'Prometheus'. It was worth the price, I guess.

It's funny, I want to know the lab results as soon as possible and yet at the same time, I don't. Is that weird or what? I wonder if others in my position ever feel this way.

I can clearly see that if I really DO have cancer, I'm definitely going to need to find a good support group. I hope my wife will join me in that as I feel it would benefit her as well.

If I AM ill, I would like to be able to help others come to grips with their disease through my own experience but I'll never be able to do that unless I can get out of my own pool of self pity. I want to have the same courage and insight that Chris Hitchens had through his life and untimely demise. Instead of asking "why me" I want to be asking "why NOT me" instead. This thing is causing me to look at myself in a whole new way.

I may be discovering that I'm actually a worse coward than I thought. Am I afraid of my death because of the stress and hardship it will likely put on those I love and love me or is it really just because I don't want to personally go through it?

Fuck it! It really doesn't matter in the long run anyway. We're all just a collection of atoms anyway.

Date: 2012-06-19 08:56:46

Dr. K just called me about five minutes ago. The biopsy is positive.

"Fairly extensive on the right side".

I am now officially a cancer patient.

I am numb.

I expected this but it doesn't help.

I will know a lot more after our meeting tomorrow. Right now, I kind of feel like a victim of 'Murphy's Law'. If something can go wrong, it will.

A lot will depend on how aggressive the tumor is and if it is still confined to the prostate.

One thing I DO know is that my life is going to radically change.

Date: 2012-06-20 16:54:12

Saw Dr. K today. It's a Gleason 7 (4 3) Apparently the tumor occupies most of the right side of the gland.

He says it could be a lot worse. Surgery (RRP) scheduled for July 16th.

They like to wait 3 or 4 weeks after the biopsy for any swelling to go down.

He says he is aiming for a full cure. I hope he's right!

He will do an RRP aka, a retro-pubic radical prostatectomy (try saying THAT 3 times fast!)including a lymph node dissection.

After that, if the nodes and surgical margins are clear, we're done for a while. If not, there will be a course of radiation. Yummy! ;)

While this news is no guarantee that more involvement won't be found during surgery, I still am a little relieved as I thought I was facing a death sentence.

Being told that you're probably facing an early death can ruin your whole day!

************************************************************************

"Everyday above ground is a good day". --- Antonio "Tony" Montana (Scarface)1983

Date: 2012-07-12 16:19:07

I find myself starting to stress out about the upcoming surgery this Monday. I suppose that's normal. I don't really know what's bothering me the most. The actual operation or what they'll find in there.

Sometimes I think my BIGGEST concern is how my dear wife is going to handle it if things don't go well. She's had enough stress, disappointments and losses in her life without adding this to it.

Friends are telling me to always keep a positive attitude. For me, it's hard, especially with OCD. I WANT to be an optimist but then I find myself getting into this deep funk where I feel that I don't deserve a good outcome. It's like a feeling of guilt or possibly a lack of self worth. I should have done more with my life. I should have not taken for granted those who have trusted me and freely given me their love.

In short, I've truly lived a selfish life so why should I be given a break now?

I think I'm beginning to trade alcohol for rational thought. VERY POOR LIFE CHOICE!

*Pours a large glass of wine*

*About a half hour or so later...*

Well, the wife and I had another one of our conversations about death and dying. I think both of us feel a little better now. It may sound morbid to discuss that stuff, especially at this stage of the game but then again, what if we NEVER addressed it. How would the surviving partner feel?

I do apologize to anyone reading this if they frequently find the content somewhat depressing. These entries are not intended to be inspirational although, at some point, with any luck, they may be.

This journal is merely a "stream of consciousness" reflecting my personal moods and feelings at any point in time. My sincere hope is that if reading about MY experience with cancer helps even one other person embarking on the same journey, then it is more than worth the effort. I know that at least for me, it helps to be able to ramble, even if few if any read it.

Once again, I invite anyone who wishes to interact with me to please do so. I am not contagious! (Yeah, I used to think cancer was contagious!) ;)

**********************************************************************

Now for the humor:

Doctor: Well, Mr. Johnson, I have some good news and some bad news.

Patient: What's the bad news?

Doctor: You have incurable prostate cancer, and you probably have less than a month to live.

Patient (stunned): Well... what's the good news?

Doctor: Did you see that hot nurse out in the reception area?

Patient: Um... yeah?

Doctor: I'm fucking her!

Cheers!

Date: 2012-07-09 21:14:43

Went for pre-surgical testing and education this morning. Actually, it was a fun experience. These people are AWESOME!

Honesty and humor seem to be paramount. (No, not just "tumor humor"!)

I'm now wearing a wristband that cannot be removed (at least not by me) containing all my pertinent information. I'm thinking it might be fun to tell people that it is a a radiation dosimeter and they need to stay at least ten feet away from me at all times. That way, I can save a fortune on deodorant! ;)

Not a whole lot to say tonight. Seems as though people we know are either getting sick or dying almost every week. This is not what we would like to hear but it IS normal, natural and the way things are meant to be. A little depressing though!

I'm still drinking way to much just to try to cope. I was honest with the pre-surg person this morning regarding that. She was sympathetic and non-judgmental which I appreciated IMMENSELY! She asked me if it helped and I said yes, it does. It keeps my sense of humor up and the knots in my stomach down. Right or wrong, it WORKS!

I'm gonna state right here though that the issue that probably bothers me the most is THAT I'M SUCH A FUCKING COWARD!

I promised some kind of humor in each entry so here it is.

***********************************************************************

-Most people think life sucks, and then you die. Not me. I beg to differ. I think life sucks, then you get cancer, then your dog dies, your wife leaves you, the cancer goes into remission, you get a new dog, you get remarried, you owe ten million dollars in medical bills but you work hard for thirty-five years and you pay it back and then -- one day -- you have a massive stroke, your whole right side is paralyzed, you have to limp along the streets and speak out of the left side of your mouth and drool but you go into rehabilitation and regain the power to walk and the power to talk and then -- one day -- you step off a curb at Sixty-seventh Street, and BANG you get hit by a city bus and then you die. Maybe.

~ Dennis Leary

Date: 2012-09-27 18:30:02

This was a taste of the first few weeks after diagnosis. I realize I tend to have a somewhat rambling style which may not have a place on this site but I AM a good listener and am quite well informed regarding Pca.

I hope to hear from you.

More later.

UPDATED

August 2015

Interestingly, it would appear that for some reason, I never documented the details of my actual surgery. Other than taking a little longer than usual (4+hrs) it was actually a walk in the park.

Post-op recovery was quick (2.5 days) and relatively painless. They kept offering me Tylenol or morphine for pain. Which one do you think I chose?

Dr. K called this morning with the results of the PSA I had done last Monday. The results were less than pleasing.

PSA level was 0.4 as opposed to <0.1 or undetectable as we had hoped. I admit to being a bit bummed.What this means in a practical sense is there is still active cancer somewhere in my body, most likely in the prostatic bed where the positive margins are. (Whoopee)!

Adjuvant radiation therapy is now a certainty and I already have an appointment for this Friday with a radiation oncologist. With any luck, the radiation will mop up this mess and the wife and I can get on with our lives. She is very concerned and I hate to have her go through this. She's been through enough already in her own life.

I have absolutely NO idea how and where this is going to go because the statistics are so complex and frequently contradictory. Funny part of this is that I already knew that there was around a 30%-50% chance an elevated PSA. I was just hoping for a better outcome but I guess I'll just have to get used to this new lifestyle.

Just got back from the appointment with the radiation oncologist. As expected, we are going with a course of IMRT (Intensity Modulated Radiation Therapy). I go This Tuesday for a cat scan (with a REAL cat) and then another appointment will be made for a simulation. After that, I should know the duration of treatment but I assume 8 weeks. My wife and I were very comfortable with the doctor who spent over an hour with us going over details and answering our questions. My blood pressure was 180/90 when we arrived and less than half that when we left. See what a pathetic wuss I am? Doc says there is about a 50%-75% chance this will eradicate ALL the cancer, assuming it really is confined to the prostatic fossa. I have to admit, I wasn't that pleased with those stats but I guess beggars can't be choosers. I'm afraid I'm still looking for that answer that ALL of us in the club want to hear but will probably never get. You're permanently cured. Little did I know at the time that none of us ever hear that statement. Turns out I've also put on 29 pounds as a bonus since all this crap started!

Bottom line on the radiation therapy: If you need it, by all means get it!

I had 35 sessions on a Varian Rapid Arc for a total of 70gy. The only noticeable side effects were mild fatigue about 3/4 of the way through the treatments and a mild case of radiation proctitis which developed weeks after the treatments ended.

Guys, we've all heard the horror stories of radiation therapy from decades ago. Believe me when I say things are not like that anymore.

There is no need to fear!

Feel free to email me anytime with worries or questions and I will do my best to help.

Now...go and have a good laugh at something (or someone).

Cheers!

UPDATED

September 2016

Hi folks,

This is the latest update since August, 2015. I really wish I could say all is well but that is not the case.

Since the end of the IMRT treatments in 2012, everything has been ok in the sense that there have been no catastrophic issues to deal with.

In July 2015, I began to notice blood spotting in my urine. Went to my primary Doc who thought it might just be a UTI.

Things went well for a couple of weeks till one morning, I went to void my bladder and it was pure blood!

In an effort to avoid writing a large book about what happened during the next year, I am going to just give the facts with short commentary.

Turns out, I have radiation induced hemorrhagic cystitis. It appears that during treatment, the beam took a little more than intended and the bladder lining was essentially "burned". This resulted in the formation of new blood vessels in the bladder lining which are extremely delicate and tend to bleed if disturbed at all. This issue wound up requiring two separate surgeries, a week apart to control. Quite honestly, it was pure hell for a while. I still have occasional spotting if the perineal area receives any significant pressure e.g. bike riding.

To make matters worse, the cancer is back. PSA was fairly stable for nearly three years. My last test, around a month ago revealed that it doubled in three months. 0.8 to 1.8. Not good.

If, in fact this is a true trend, we will probably start ADT in the form of Casodex first for a month or so and then begin Lupron. I am not looking forward to that! At this point, we do not know where the cancer is located and it is way too early for scans. Am I scared? I guess, a little bit but I have at least two other potentially life threatening conditions running concurrently and the cancer is the least formidable of them.

Now, the answer to the big question. If I had to go through all of this again, would I change anything?

Actually, very little. Please bear in mind that my case is somewhat atypical and most prostate cancer patients will never go through this nonsense.

What I might do differently would be to use radiotherapy in the form of Brachytherapy (seeds). Surgery, in my case, was not curative and I was left 100% impotent as well as 100% urinary incontinent. With brachy, you don't have issues like positive margins which seems to be what got me.

Most importantly, make sure you know and understand all your options when you are diagnosed. I moved far too quickly out of fear. Even if it is a highly aggressive tumor, it is not going to kill you today, or next week or even next month. Taking one's time, within reason, can avoid a lot of unwanted side effects.

I honestly have no clue what my future holds. I just play it a day at a time.

Cheers to all the members of our unique club! -- Dave Robbins

Dave's e-mail address is: papapurplehaze AT cox.net (replace "AT" with "@")


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