My Walk With Cancer

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maltratado45
Regular Member


Date Joined Jun 2010
Total Posts : 84
   Posted 6/30/2010 7:51 PM (GMT -6)   
I want to tell my cancer story. 
 
It starts in mid 2004 at the local blood bank where I am an over 16 Gal. donor.  We are doing the initial workup and the nurse says "Jim, I don't like the way your heart sounds today so here is a permission slip for your Dr. to sign after you see him."  "But I don't have a Dr."  "Why not?"  "I never been sick."
 
It's raining outside which is why I went to give blood after lunch.  I just need a Dr. to sign this stupid form, should be no big deal, right?  Boy am I a novice.
 
I first go to our major hospital with over 50 Heart Specialists on staff and say "Hey I need someone to check my heart."  Wrong thing to say there.  Man people start running and everybody gathers around, "Are you all right, just lay down on the carpet while we get a wheelchair or a gerney."  "No, No I'm fine but I need somebody to check my heart now and sign my slip so I can give blood this afternoon."  "Things don't work that around here Sir."  All of a sudden it was cooler in that place.  "We could make an appoinment for next week Sir."  "Naw, forget it, I'll just get it done somewhere else, Goodby."
 
I then go to a Heart Association, which is a collection of heart Dr's.  They say appointments are being made for next month.  "Bye."
 
Man, I'm halfway mad but I go home and get a cup of coffee and cool down.
 
Hummm, maybe that Dr. who's job I finished last month can sign this so I call his office around 4:30 PM and he answers the phone.  "What do you need Jim?"  "Someone to listen to my heart Sir."  "Can you be here at 7:30m AM tomorrow?"  "Yes Sir."  "See you then."
 
He listens for about 2 minutes hooks up a ECG machine reads the printout and says, "Where's the paper?  I'll sign, Oh and almost as an after thought, by the way, when was the last time you had a physical?"  " My Army discharge in 1969."  " But Jim it's 2004."  "I know but I've never been sick Doc."  " I gotta an idea Jim.  Go to my friend around the corner who is building his practice and get a complete physical ON ME."  "Really Doc, OK."
 
I go give blood and only lose about 3 hrs.  But I'm self employed so who cares. But Fate steps in where wisdom never resided.
 
Next day I get a call from the Dr. to pick up a prescription for a full blood panel workup and an appoinment card.  Blood test and appointment in 1 week.  Thats the way to do medicine.  You just have to push a little.  Well, we will see.
 
He gives me a through going over and ends with the surprise.  "Jim, you have an elevated PSA of 13.8.  Now this does not mean you have cancer but with your permission I will give you a referal to the same Urologist I gave my Father and for the same reason.  (Note:  This will come up again later.)
 
The following week he gives me the famous DRE and orders biopsy and bone scan for the following week.
 
Results appoinment with the request for my wifes attendance.  "Jim , you have prostate cancer graded T2c Gleasons grade 3+4.  Somewhere around that time the appointment was over for me.  He kept talking but I did not hear.
 
My wife continued to collect and harvest taking notes and asking questions.  To this day I have absolutely no memory of what happened.
 
He did tell for us to go home and later we were to see him in a couple of weeks to talk some more.  At that next appointment he spent over an hour filling us in on the many choices for treatment.  He dicussed each in detail and she took notes again but I heard better also and we were able to talk about it some more privately after that second consult.
 
I spoke to my GP Dr. again and he assured me this guy was "A" grade so we returned and said cut it out.
 
Well we had bad weather and some schedule conflicts with my work which delayed the surgery into deep winter.  I finally get a call the operating room is free on 14 Feb 2005.  "How about it Mr. Jim was the question?"  Ironic right.  "Ya considering what your getting ready to do to me WHY NOT. Schedule it."
 
So Fate steps in again.
 
They roll me in to the Operating room wide awake and leave me off to the side while they quickly get things ready.  In 3-5 minutes the surgeon steps over to the gerney and starts to roll me over to the well lite area of the room.  I ask them both to pause for a moment and think about what they were getting ready to do to me on what day they were doing it.  They both smiled big and I asked them to be on their "A" game and do the best they could.  I believe they did just that.
 
Surgery starts around 3;30 PM done at 5:30 PM back in my room and awake by 9 PM one hurt'en puppy.  Wife asks if she can go home and smiles.  I'm hurt but alive and she can rest now.  Discharged around 5 PM the next day and home to the couch with two new bags, large and small.  I think 250 ml and 1000 ml. A daily traveler and an over night bag.  Next day I'm up and in the car for a brief talk with neighbors on the next block.
 
Man my butt hurts.  How be I get you one of those cheap donut floaties for pools at the Dollar Store.  Ya, lets try that.  Man I'm in heaven with this thing, thanks.
 
That second night I get up to drain my big bag and walk into the bathroom around 2 AM and suddenly I get a sharp pain in my bladder and a little blood pushes out the tip of my penis past the rubber tube and makes a mess on the tile floor.  Probably a teaspoon full but it looked like more and scared us both.  I call the Dr. who answers quickly and asks if it stopped.  "YES."  "Sounds like a bladder spasm.  We don't know why that happens but we think the bladder get mad because we cut it.  Most times they only happen once but if you continue to bleed call us right away and we will meet you in ER immediately.  Oh, and by the way, I'm real glad to hear you are drinking enough to fill the big bag at night.  You need to keep up your intake to flush the bladder and start the healing process move forward as quick as possible."
 
"Your rectum will take a while longer to wake up and that can be a mess when its time, so just use the bath tub as toilet paper.  Yes 5-6 times a day in the tub with antibiotic cream on the tip of your penis and rub it in real well.  Can't hurt, might help.  Either way it feels good to be clean.  Infection is our mutual enemy."
 
The following day I have company.  My granddaughter and her DOG.  The danged DOG bit my floaty and pisssss it goes down.  I almost cried.  As soon as she left I started to speak and my wife says "Yes, I know and I will be right back."
 
After a few days I find draining the bag is painful inside my body.   Hummm, but if I lift the bag so it is almost the same elevation as my bladder it drains slower but less painful.  I can live with less pain.
 
Appetite is coming back and 15 Days later I'm in to the Urologist office to get the catheter out. Back to a patient room after "weigh in" and here comes a cute "new to me" nurse. "Good morning sir, I'm here to remove your tube, jump up on the table please and open your gown for me." She inserts a syringe tip into that small second tube on the hose, withdraws the sterile water and pulls it out in 3 seconds. No pain, no drama and no name and walks out of the room after having me take a leak and handing me a pad, "The Dr. will be here in a moment."
 
Who was that masked bandit?
 
Later as we leave I see the same nurse in the hall. I walk over and introduce myself. "You look familiar Sir, where have we met." It was at that moment I was again reminded that cancer peels away the layers we use to protect our personal selves. It reintroduces a healthy measure of "humility" back into our lives.
 
In the car my wife says "Way were you hitting on that cute nurse?" "Because she hit on me first was my answer?" Well if looks could kill, I guess you know where I would be by now but I dodged another bullit and here I thought cancer was my only enemy.
 
It's been over 5 years and the events stick fresh in my mind as part a road I never chose to take. Yours will be different but no less important to you.
 
I wish you well on your journey and try to notice the flowers along the path your life will take now. You are changed forever but still worthwhile and so is your life.
 
Cancer changes us all and it is always scary.
 
I will talk more about other effects to us soon but one the biggest differences in me now is that I cry more easily.
 
Jim


Presented to GP on 3 Aug. 2004 with elevated PSA of 13.8.
Referred to Urologist.  Biopsy and bone scan in Oct 04.
Pathology report in Nov 04.
Initial Results are T2cNoMo andricarcinoma of prostate gland.
Had a RRP on 14 Feb 2005.  Boy talk about irony look at that date again.
Dr. called 3 days after surgery.  I want you both in my office tomorrow morning, we must talk now.
"I wish to appologize because I misdiagnosed your condition.
Biopsy of your organ says Staging is T3bNoMo.  Please accept my apology."
At that moment I fell in love with my Dr. and have never changed my mind.
Followup radiation of the prostate bed started early June 05 and ran 42 sessions.
All PSA checkups since have been less then .01. 2 yrs every 90 days.  My remaining yrs. every 6 months.

Post Edited (maltratado45) : 6/30/2010 7:55:57 PM (GMT-6)


LuvMyDAD
Regular Member


Date Joined Dec 2009
Total Posts : 315
   Posted 6/30/2010 8:00 PM (GMT -6)   
Hi Maltrado,
I am very happy to hear that you have been getting zeros for the past two years, thats great news! My father is affected by prostate cancer and trust me it changes all of us.
I wanted to ask you, did you have a PSA taken before you began radiation? Also, I saw that you had zeros for the past two years but your RP and radiation was in '05, did your psa take a while to come down? What accounts for those three years?
Thanks so much and thank you for sharing your story with us.
Lynne
 
Father diagnosed Nov. 9, 2009
Open radical prostatectomy Dec. 21, 2009, post op pathology report T3a, Gleason 7
5 week post op psa .55
Combination therapy, hormone and IMRT. 40 sessions 72gy.
Hoping and praying for a cured dad.


geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 6/30/2010 8:07 PM (GMT -6)   
Wow, thank you. There are a lot of stories out there and every one that appears here is a help to more people that you can imagine!
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3+4=7
CAT scan, Bone scan 1/09 both negative.

Robotic surgery 03/03/09 Catheter Out 03/08/09
Pathology: Lymph nodes & Seminal vesicles negative
Margins positive, Capsular penetration extensive Gleason 4+3=7
6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.
10 weeks: no pad at night -- slight leakage day/1 pad.
3 mo. PSA 0.0 - now light pads
6 mo. PSA 0.00 -- 1 light pad/day
9 mo. PSA 0.00 -- 1 light pad/day ED remains
12 mo. PSA 0.00 -- still one light pad and ED


maltratado45
Regular Member


Date Joined Jun 2010
Total Posts : 84
   Posted 6/30/2010 8:14 PM (GMT -6)   
Maybe I was not clear. I have had zero's since 12 weeks after surgery and then started radiation. Just Monday of last week was a check up date for me. While we were together the Urologist said, "Jim before today's appointment I went back to square one and read your whole file. There is no reason to expect that you would be here in good health over 5 yrs after you presented in 2004. Oh, I didn't mean that Jim." "Oh, yes you did Sir, but it is OK because I am the one living now because of your work. It's OK to be wrong that way Doc."
Presented to GP on 3 Aug. 2004 with elevated PSA of 13.8.
Referred to Urologist.  Biopsy and bone scan in Oct 04.
Pathology report in Nov 04.
Initial Results are T2cNoMo andricarcinoma of prostate gland.
Had a RRP on 14 Feb 2005.  Boy talk about irony look at that date again.
Dr. called 3 days after surgery.  I want you both in my office tomorrow morning, we must talk now.
"I wish to appologize because I misdiagnosed your condition.
Biopsy of your organ says Staging is T3bNoMo.  Please accept my apology."
At that moment I fell in love with my Dr. and have never changed my mind.
Followup radiation of the prostate bed started early June 05 and ran 42 sessions.
All PSA checkups since have been less then .01. 2 yrs every 90 days.  My remaining yrs. every 6 months.


maltratado45
Regular Member


Date Joined Jun 2010
Total Posts : 84
   Posted 6/30/2010 8:25 PM (GMT -6)   
Let me add a short story about kegels, carpenters, cancer and Urologist's. Just before surgery I go for a final presurgery appointment and get enema's, a few antibiotic pills and while we are together I ask "Hey, Doc, can you tell what kind of shape my kegels are in and then give me an opinion about the speed of my bowel control recovery?"

"Sure, bend over and bear down on my fingers. My goodness Jim I hope my muscles are in as good a shape when I'm 60. What did you say you did for a living?"

"Carpenter Sir."

"Well your work has given you an edge over most people and I think you will have little control trouble."

He was right and back to normal in a few weeks.
Presented to GP on 3 Aug. 2004 with elevated PSA of 13.8.
Referred to Urologist.  Biopsy and bone scan in Oct 04.
Pathology report in Nov 04.
Initial Results are T2cNoMo andricarcinoma of prostate gland.
Had a RRP on 14 Feb 2005.  Boy talk about irony look at that date again.
Dr. called 3 days after surgery.  I want you both in my office tomorrow morning, we must talk now.
"I wish to appologize because I misdiagnosed your condition.
Biopsy of your organ says Staging is T3bNoMo.  Please accept my apology."
At that moment I fell in love with my Dr. and have never changed my mind.
Followup radiation of the prostate bed started early June 05 and ran 42 sessions.
All PSA checkups since have been less then .01. 2 yrs every 90 days.  My remaining yrs. every 6 months.


maltratado45
Regular Member


Date Joined Jun 2010
Total Posts : 84
   Posted 6/30/2010 8:47 PM (GMT -6)   
Hello LuvMyDAD,

I read the story about your Father. Are you still with him and how is he doing?
Presented to GP on 3 Aug. 2004 with elevated PSA of 13.8.
Referred to Urologist. Biopsy and bone scan in Oct 04.

Pathology report in Nov 04.

Initial Results are T2cNoMo andricarcinoma of prostate gland.

Had a RRP on 14 Feb 2005. Boy talk about irony look at that date again.

Dr. called 3 days after surgery. I want you both in my office tomorrow morning, we must talk now.

"I wish to appologize because I misdiagnosed your condition.

Biopsy of your organ says Staging is T3bNoMo. Please accept my apology."

At that moment I fell in love with my Dr. and have never changed my mind.

Followup radiation of the prostate bed started early June 05 and ran 42 sessions.

All PSA checkups since 12 weeks after surgery have been less then <.01> Or below the scale. I was checked for 2 yrs every 90 days. I will be checked the rest of the years of my life every 6 months.


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 6/30/2010 9:49 PM (GMT -6)   
Jim, a wonderful story, thanks for sharing. I'll look forward to seeing more of your posts now that you've found us.

Sheldon AKA Sleepless
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
From "knock out" to wake up in recovery less than two hours.  Actual surgery 70 minutes
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
 
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
 
First post op PSA Sept 09  less than 0.02
PSA on Oct 23 test again less than 0.02
PSA on Jan 8 less than 0.02
PSA on April 9 less than 0.02 
 
  


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 7/1/2010 6:56 AM (GMT -6)   
Wonderful story, thanks, and welcome to the forum.
James C. Age 63
Gonna Make Myself A Better Man www.youtube.com/watch?v=a6cX61oNsRQ&feature=channel
4/07: PSA 7.6, Recheck after 4 weeks Cipro-6.7
7/07 Biopsy: 3 of 16 PCa, 5% invloved, left lobe, GS3+3=6
9/07: Nerve Sparing open RRP, 110gms, Path Report- Stg. pT2c, 110 gms., margins clear
3 Years: PSA's .04 each test since surgery, ED continues: Bimix- .3ml PRN, Trimix- .15ml PRN


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 7/1/2010 8:16 AM (GMT -6)   
Welcome aboard, a great read, love the detail, that can really help a new comer understand a journey like yours
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12  same time, 2/8-Cath #11 out - 21 days, 3/2- Cath #12 out - 41 days, 3/2- Corr Surgery #5, 3/6 Cath #13 out - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, 5/24 put in Cath #17


maltratado45
Regular Member


Date Joined Jun 2010
Total Posts : 84
   Posted 7/1/2010 9:46 AM (GMT -6)   
So I begin healing.  I wean myself off the small pads after a couple of weeks.  Dripples stop unless I turn too quick or take steps too fast.  You know when we start wearing pads we think everybody in the world knows.  We are embarrased to admit the truth that we need them at all.  Nobody knows people unless you tell them.  You might run out of a conversation at unexpected times but its OK.  Infection is your number one enemy.  Keep you parts scrupulusly clean and dry.
 
Use creams and baby your skin.  It feels good and please allow and encourage her to help you.  Reach back into the pickle barrel of sexual posssiblities and find out what makes you feel good now.  Please be aware that somethings might change but that is OK.  I mean who would have thought that we would even consider that type of sexual adventure with our mates before CANCER.  Some surprises might await along with some disppointments but that is OK.   It is your life now after CANCER.  You have a right and obligation to find what works now.  Finding that will greatly improve the quality of your life and taking that journey gives you both more reasons to become reinterested in the other.
Cancer is not something we do alone very well, so reachout and ask for help.  It will help keep you grounded and moving forward.
 
So about 10 weeks after surgery I have my first PSA checkup.  Less then 0.01 which means a below the radar reading.  At that time my Urologist says he has consulted with the same Radiation Oncologist he sent his Mother to for Breast Cancer and has already discussed my case with him.  Will I take his recommendation?  "Yes Sir."  "Here, your appointment is on this card and good luck Jim."  (See, this is one of many little personal actions never invited but welcome on my Cancer road.)
 
The fact that he had detailed conversation about me with a new Dr. is noteworthy.  My Cancer journey has had many surprise twists and turns.  A number of people reached out to help.  At the time they reached out I was very scared but learning.  I also was a little selfish but I learned not to be so as time past and I was still alive.
 
I go meet this new Radiation Dr. and ask lots of questions and take notes.  See, I'm learning.  I am a little slow but I am learning.  Well apparently few patients take that much interest in their treatment but this Dr. takes an hour with me and shows me the 3 D digital software in color he with use to form the lead sheilds to the shape the beam hitting me from each 90 degree angle.  My body will be in the middle and they will hit me from every 1/4 circle.  The exact area he wants to hit has an odd shape so different filters were required for each of the 4 shots.  The success of his treatment of me depends on the accuracy of this targeting plan.  The tissue dies at the spot the beams cross inside my body.  The other tissue tolerates the passage but potentially protests radiation also.  The delicate dance between what is needed to kill any remaining Cancer and what  my body can tolerate is his job.  I got tatooed for targeting purposes and started 42 treatments delivered 5 days a week till complete.  After a week I had mild diarea but half an imodium fixed that. 
 
I had an important thing occur one treatment morning.  I was the second, at 8:15, appointment.  The operator had been on vacation but a scheduling mix up occured about his return and somebody did not show up to operate the machine on time.  A desparate call went out but still after that person arrived it takes about 30 minutes to warm up the machine and check the output and targeting accuracy before we can proceed.  That gave me time to read the paper and have a cup of coffee and maybe a donut.  The waiting room started to filled up.  I had never seen that many Cancer patients together at one time.
 
I returned from the donut with coffee and a glass of water just as a new arrival sat in the chair next to mine.  "Where did you get that water Sir?"  "Here, you take this one, I can get more easily and if you want more speak up I will be happy to get it.  It's in that center hall by the way." and he looked away.  Most people looked away including me.  I did not want to dwell on their misfortune or pain.  Furtive glances at many Cancer patients is a rude awakening.
 
One would think I gave him gold and he smiled and these thoughts passed through my mind.  Before me sits a group of people all of which have Cancer.  Most I would never notice in a crowd as being any different from the rest.  A few appear close to death but not many.  Most have far bigger problems then me.  I am still working and in love.  My life is whole and worth living fully.  I better do that.
 
We had made some progress on the physical side of our lives before radiation.  We decided to include all options and see what worked now.  Well radiation set me back months.  We found ways to tell the other how much we loved.  Climaxes were present for both but full intercourse was a ways in the future.  I was clean, had soft skin and smelled good but no penetration.  We used all the samples and bought a few more but about a 1 1/2 years goes by with little change.
 
A birthday pool party for a Grandson gets us all together, 20-30 people.  My daughter in law is of Cuban heritege. She was sisters.  One of those sisters is a knockout and she has a new bikini.  Waterpolo in the pool and I'm sitting in the cabana with ice tea watching that bikini.  My goodness it starts.  It grows, it bulges. it protrudes and felt wonderful but embarrasing.  I mean "HELLO BUDDY, WELCOME BACK.  WHERE HAVE YOU BEEN SO LONG"  I quickly grabbed a towel and went to the bathroom.  It went down just as quick as it came up and before I could do anything about it too, darned.
 
After we drove away hours later, my wife says "Was that what I think it was?" "YES."  "Lets go invite him back, I want to see him again."
 
During those next months he accepted our invitations once in a while and showed up.  Each appearance was a surprise because we could never quite figure out how to phrase the invitation.
 
It was also during that time some of the pressure or selfishness began to ease and I lightened up.  I was alive after all.  I decided to thank those who had helped me.
 
I sat down and wrote personal letters to each of my care givers including my wife.  In those letters I expressed my appreciation for some of the things they did for me.  I delivered each letter during normal checkup appointments and made the person sit down while I stood.  You know they make you sit down for a reason.  I made them sit for the same reason and read each their letter and then signed thru the tears running down my cheeks.  The reactions were precious.
 
My Urologist gave me a hug.  My Radiation Oncologist cried.  My personal GP (remember from above?) say's.  "You know Jim, I gave you the same advice I gave my Dad.  Here you sit 2 years later healthy.  I just buried my Father a couple of weeks ago."  "Do You mean?"  "Yes, he did not take my advice.  He went to some hack on the easy coast and got butchered.  They missed removing the cancer completely and botched the bladder connection.  He died with no bowel control, 2 bags and painfully slow.  To say I appreciate your letter is an understatement.  I will treasure it for the rest off my life and Thank You."
 
So gang we arrive at the end of this chapter in My Cancer Story.  There are a few things I wish to bring your attention.  open your heart and your mind and allow others to walk in.  Accept their help and thank them.  Find that part of you that allows you to be nutured in the most basic part of your heart.  Find the humility of a child again.  Admit you need help and then step back and allow it to happen.  You can not help but benefit no matter the outcome from your Cancer.
 
My path has been aided by many and I have benefitted by getting to know them as they worked on me.
 
I am the same as I was? NO.  Am I OK? YES.  Is this life I have worth living? YES.
 
Kind Regards Jim


Age 60 when presented to GP on 3 Aug. 2004 with elevated PSA of 13.8.
Referred to Urologist. Biopsy and bone scan in Oct 04.
Pathology report in Nov 04.  Initial Results are T2cNoMo carcinoma of prostate gland.
Had a RRP on 14 Feb 2005. Boy talk about irony look at that date again.
Dr. called 3 days after surgery. I want you both in my office tomorrow morning, we must talk now.
"I wish to apologize because I misdiagnosed your condition.
Biopsy of your organ says Staging is T3bNoMo. Please accept my apology."
At that moment I fell in love with my Dr. and have never changed my mind.
Followup radiation of the prostate bed started early June 05 and ran 42 sessions.
All PSA checkups to date, 5 1/2 yrs, are undetectable.

Post Edited (maltratado45) : 7/5/2010 1:47:07 PM (GMT-6)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 7/1/2010 10:09 AM (GMT -6)   
So in your story, why did you have radiation so soon after surgery? Yes, your pathology was upgraded, but you don't seem to indicate any kind of recurrance going on, based on post surgery PSA scores. Was there anything else darning in your pathology report that you didn't post here. Just trying to make sense of such a heavy dose of post surgery radiation without recurrance being verified. Great story though.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery, no problem post SRT
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, next one:  July
Latest:  7/9 cath #6 - 41 days, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, mapped  9/9, 10/1 - 3rd corr. surgery - SP cath, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, Cath #10 43 days, 1/19 - Corr Surgery #4,  Caths #11 and #12 ,Cath #11 - 21 days,  Cath #12 - 41 days, 3/2- Corr Surgery #5, Cath #13 - 4 days, Cath #14- 27 days, Cath #15 - 26 days, Cath #16 - 31 days, 5/24 put in Cath #17


bsjoplin
Regular Member


Date Joined Feb 2010
Total Posts : 308
   Posted 7/1/2010 10:53 AM (GMT -6)   
wow, wonderful story
thanks for sharing
bob
 

Age@dx: 55

5/05             PSA test 1.8  --12/19/07  PSA test 3.7  --7/25/08    PSA test: 4.7

8/26/08        1st Prostate Biopsy: 3 samples out of 6 have irregular cells

11/25/08      PSA test: 6.5

12/11/08      2nd Prostate Biopsy :  of 12 samples, 3 are cancer, and all other 9 are irregular.  original NJ lab sent samples to Johns Hopkins for special reading.  Gleason 3+3=6.  now:read book, and think about options: radiation, surgery, etc

1/22/09        Radical Retropubic Prostatectomy.  main issue was use of BOTH pre-donated units of blood during surgery, and then required 2 additional units in recovery, before going to room

1/25/09        Released from hospital. No drive, no lift >5 lb

1/28/09        Pathology results from removed tissue:  Cancer was seen on 10% of gland, lymph nodes & SV were benign, nothing seen outside of the prostate.  One area of cancer extended right up to edge, but not beyond.  Gleason was re-typed as 3+4=7, staged T2c

2/13/09        PSA=0.1

3/6/09          6week appt, start back to work Monday, 3/9.  script for Cialis

6/8/09          PSA=0.1

10/9/09        PSA=0.1

2/10/10        PSA=0.3 discussed possibility of radiotherapy and/or hormone.

4/7/10          PSA= 0.4  Recurrence of the cancer is probable. Referred me to RO

5/4/10                   First RT.  RO is recommending 37 treatments x 1.8Gy=66.6 Gy

6/25/10       Final RT. ended up w/ 36 treatments, 64.8 Gy


maltratado45
Regular Member


Date Joined Jun 2010
Total Posts : 84
   Posted 7/1/2010 10:56 AM (GMT -6)   
NO. Not that I am aware of. It was completely on the recommendation of my Urologist that I followed his advice. He also said he had sent his Mother to the same man for Breast Cancer treatment.

There might be something I missed in the actual pathology report but I would not recognize that.
Presented to GP on 3 Aug. 2004 with elevated PSA of 13.8.
Referred to Urologist. Biopsy and bone scan in Oct 04.
Pathology report in Nov 04.
Initial Results are T2cNoMo andricarcinoma of prostate gland.
Had a RRP on 14 Feb 2005. Boy talk about irony look at that date again.
Dr. called 3 days after surgery. I want you both in my office tomorrow morning, we must talk now.
"I wish to appologize because I misdiagnosed your condition.
Biopsy of your organ says Staging is T3bNoMo. Please accept my apology."
At that moment I fell in love with my Dr. and have never changed my mind.
Followup radiation of the prostate bed started early June 05 and ran 42 sessions.
All PSA checkups since 12 weeks after surgery have been less then <.01> Or below the scale. I was checked for 2 yrs every 90 days. I will be checked the rest of the years of my life every 6 months.


maltratado45
Regular Member


Date Joined Jun 2010
Total Posts : 84
   Posted 7/1/2010 1:44 PM (GMT -6)   
Purgatory.  
 
I pulled out the pathology report given after surgery.  Left Base, Left Mid and Left Apex all Benign.
 
Right Base Primary Grade 4 Secondary Grade 3 of 5  Involving 25% of submitted tissue (Gleason score 7 of 10) No Perineural Invasion.
 
Right Mid Primary Grade 4 Secondary Grade 3 of 5  Involving 50% of submitted tissue (Gleason score 7 of 10) No Perineural Invasion.
 
Right Apex Primary Grade 4 Secondary Grade 3 of 5  Involving 75% of submitted tissue (Gleason score 7 of 10) No Perineural Invasion.
 
Jim

Presented to GP on 3 Aug. 2004 with elevated PSA of 13.8.
Referred to Urologist. Biopsy and bone scan in Oct 04.
Pathology report in Nov 04.
Initial Results are T2cNoMo andricarcinoma of prostate gland.
Had a RRP on 14 Feb 2005. Boy talk about irony look at that date again.
Dr. called 3 days after surgery. I want you both in my office tomorrow morning, we must talk now.
"I wish to appologize because I misdiagnosed your condition.
Biopsy of your organ says Staging is T3bNoMo. Please accept my apology."
At that moment I fell in love with my Dr. and have never changed my mind.
Followup radiation of the prostate bed started early June 05 and ran 42 sessions.
All PSA checkups since 12 weeks after surgery have been less then <.01> Or below the scale. I was checked for 2 yrs every 90 days. I will be checked the rest of the years of my life every 6 months.


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 7/3/2010 9:42 AM (GMT -6)   

tongue    Dear Mr. Jim,

 

Thank you for taking the time to share your journey with all of us.  It truly is a road we never even thought about being on… but there we were and here we are.

 

HealingWell  has been a huge part of “Our Journey”… and to this day we continue to stay close in thoughts and prayers.  It’s interesting how the stepping-stones move us in new directions but we always find that special little stone waiting for us ~ 

the  HealingWell  stone.

 

And it just so happens…

…that little stone was waiting for me yesterday when I signed on. 

I found ol' friends.... IdahoSurvivor and creed_three threads.  Then I saw postings from Greenacres, Dutch, Tony, James C, Magaboo, Beachbum,…. and the warmth from past sharing surrounded me. 

 

Lurkers and members ~ each thread, each posting, each journey ~ helps us take that step forward knowing there are "Helping Hands" here to guide us. 

 

My eyes have happy tears ~ after reading your journey….. and a warm heart!

Thank you for caring enough to share.

HUGS from 


 *bluebird  ~ Lee, Buddy, & Murphy from North Carolina

Link to our personal journey…>>>     Our Journey ~ Sharing is Caring 

April 3, 2006  Radical Retropubic Prostatectomy

4 Years ~ 8th PSA April 2010 ~  less than 0.1 NON-DETECTABLE

 


English Alf
Veteran Member


Date Joined Oct 2009
Total Posts : 2215
   Posted 7/3/2010 2:01 PM (GMT -6)   
A great post Jim. Thanks for sharing.

And always good to get a sense of proportion from people much further along the road.

I'm guessing the 3 part of the T3b was the reason they did the RT straight away.

Alfred
Age at Dx 48 No Family history of Prostate Cancer
Married 25 years, and I cannot thank my wife enough for her support.
April 2009: PSA 8.6 DRE: negative. Tumour in 2 out of 12 cores. Gleason 3+3.
RALP (nerve-sparing) at AVL-NKI Hospital Amsterdam on 29th July 2009. Stay 1 night.
Partial erections on while catheter still in. Catheter out on 6th Aug 2009.
Dry at night after catheter came out
Post-op Gleason 3+4. Tumour mainly in left near neck of bladder.
Left Seminal Vesicle invaded, (=T3b!)
no perineraul invasion, no vascular invasion. clear margins,
Erection 100% on 15th Aug 2009, but lots of leaking of urine
Stopped wearing pads on 21st Sept 2009
Pre-op style intercourse on 24th Oct 2009 !! No use of tablets, jabs, VED etc. but...
Nov 17th 2009 PSA = 0.1
Can still get erections okay, and almost no leaking of urine, but since December 2009 I don't have orgasms, instead I just have intense pain in place where prostate used to be.
Mar 17th 2010 PSA = 0.4!!! referred to radiation therapist
April 13th 2010 CT scan.
April 28th 2010 Started Radiation Therapy (66Gy - 33 sessions)
June 11th 2010 finished RT - main side effect tiredness, but also the occasional small leak


maltratado45
Regular Member


Date Joined Jun 2010
Total Posts : 84
   Posted 7/3/2010 4:14 PM (GMT -6)   
Exactly right. The day my Dr. delivered my adjusted diagnosis as I said I went mostly deaf. I remember little of what he said after the words "T3bNoMo Cancer." The one idea that stuck in my brain was that he liked a new fight and he hated losing. He asked me if I wanted to fight aggressively for my life. I told him yes.

During this after surgery admission and the missed biopsy accuracy his apology, in person, was humble, heartfelt and deeply moving to us both. Like I said and now reinforced by my story, I have never regretted including him on my treatment team.

Of course you must know that there are lots of ways to treat and win at Prostate Cancer. It just depends on the people doing the treatment. There is one more big point we all must try to learn. Each patient carries some responsibility for his own health. Early while I was with my Urologist, I made him a promise that all agreements made in his presence were binding on both parties. Further I stated, if I ever wanted to break any agreement I would tell him to his face.

Jim


Age 60 when presented to GP on 3 Aug. 2004 with elevated PSA of 13.8.
Referred to Urologist. Biopsy and bone scan in Oct 04.
Pathology report in Nov 04.  Initial Results are T2cNoMo carcinoma of prostate gland.
Had a RRP on 14 Feb 2005. Boy talk about irony look at that date again.
Dr. called 3 days after surgery. I want you both in my office tomorrow morning, we must talk now.
"I wish to apologize because I misdiagnosed your condition.
Biopsy of your organ says Staging is T3bNoMo. Please accept my apology."
At that moment I fell in love with my Dr. and have never changed my mind.
Followup radiation of the prostate bed started early June 05 and ran 42 sessions.
All PSA checkups to date, 5 1/2 yrs, are undetectable.

Post Edited (maltratado45) : 7/4/2010 2:16:21 AM (GMT-6)


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 7/3/2010 4:34 PM (GMT -6)   
Well Jim if any of the woman thought men aren't showing their vunerability, sensitive side or willing to talk that much about the ills, treatments, and thoughts....you cured them of that stereotype on men (LOL) ;-) Took some courage to write that much and share it all, but hey this forum is like Dr. Freud, the couch is worse than one on Frasier's T.V. show (his dads couch with duct tape on it). Healing-Well must be a cyber tucked and rolled corinthian leather sectional couch with pop out leg extentions and beer holders (lol) and we have qualified and unqualified psycho-therapists herein and male and female, I presume I am psycho and unqualified (LOL)...but will listen and maybe thrown in some German to appear authentic.

Enjoy!
Youth is wasted on the Young-(W.C. Fields)


maltratado45
Regular Member


Date Joined Jun 2010
Total Posts : 84
   Posted 7/3/2010 7:27 PM (GMT -6)   
This is Chapter 3



Maybe I should have called this thread Sex, Drugs and Rock & Roll. Now that I have your attention lets continue.



I have waited to write this Chapter although it starts soon after radiation ended and continues to this day.

Maybe Cancer, Love and Erections would be the better title. I think the fact that I left this for last tells you something about me. This is the area of my story most difficult to write about because it is so personal.  Before starting this Chapter I went back to the beginning of this bulletin board (2006 I think) and started reading towards today. I wanted to get a feel for the flavor of the the topics and study the hit counts a little. I also wanted to abide by the principles of decency requested. I sure hope I do that.

I would say that sex and intimacy are of major importance to both sexes and of any personal persuasion. Once I went and did a little background reading I formed the following opinion.

How we handle sex is of major importance and great interest to others. You know why I say that? Simple. Most of the locked topics are about Sex in some way or another. I'm guessing the Moderators locked the topic so we would move on to a different subject.

Anyway here goes.

I had a rude awakening during the catheter removal. My wife got jealous when I introduced myself to a cute nurse as we were leaving, remember. Well, that should have been my signal of what the future held but stupid me, I missed it. I go plodding home with a BIG piss pad on when I knew I didn't need that thing and only wore it to humor that nurse. We walk in the door at home and I go to the bathroom to check and dispose of that thing. Boy, am I glad it was there. You see that stuff that runs out is the same temperature as us. I never felt is coming out.

She asked what size I thought I might like. Well, heck lady I've never been shopping for pads. How do I know. Just go get me what you think I need and make it a small box so we can switch cheap. So I started potty training again.

The muscles that control the flow are buried deep. The tissues that were operated on are also buried deep. Some tissue was removed. So I have to retrain the muscles that control both ends and they are pushing on less tissue, hummm. My Dr. said use the bathtub as toilet paper. Stay scrupulously clean to avoid infection. He went on to say damaged tissues are wet and heal slow so be patient with yourself.

He gave me a lifting limit and certain walking and exercise instructions, a couple of packs of ED medications, and antibiotic regimen for 5 more days and a bill for his services, WOW. Thank goodness for insurance, eh.

I moved onto the couch and started this next phase of my recovery. Getting back to "normal."

I realized I did not know what "normal" was any more. I have never had so much time to think before. Days run into weeks. People would visit but don't stay long. We'd go for rides, her driving all the time for a month. My life has never been like that, dependent. I ran 5-6 days a week and made a decent living for us. We have 6 kids so I sat down and wrote letters to each. Then one day I'm sitting at the computer and I start to think about sex. I wonder.

Well that first roam around the Net led to more roams. Eventually a few more weeks pass and I got really randy and she's asleep and if I just move my hand down to about here it feels real good. That routine happened for a while with no more reaction from my body then mild excitement and slight filling out but definitely not an erection. I wonder if it's time to put some of those pills in the mix. I'll try that tomorrow night, yea, after she is asleep.

So I plan carefully so she won't know. I carry her all over town so she will be tired and sleep soundly. It's dark and I take a Cialis around 11 PM. I play for a couple of hours and go to bed not satisfied and alone. We get a couple of months from surgery and my radiation starts in late May after I was healed inside. Anything I accomplished during those few months went away and I went back to square one by the time treatments stopped. Also during that time I lost my brother and my best friend to cancer both out of town.

I sometimes wondered how much more I could carry for a while. I was real scared when I buried them. Am I next? Will my wife love me now?

We get through that and come back home and I start roaming again late at night on the Net. One of those nights I look up at door of the extra bedroom where we keep the computer and I see her and she is crying. She sits down and says "Please understand I am not sad that you are doing that. I am sad you are doing that without me. Cancer is not yours alone, it affects me and us. I have been walking around on tippy toes trying to helpful, supportive and allow you time to heal. That type of walking stops now."

"In our lives we have done many things together. Most with the help and support of the other. That is what couples do they help and support. Do you think you are the only one with sexual needs that should be satisfied by this marriage? People have many senses like sight, sound, taste and touch. We left some of those options long ago. Now your hurt and I want to help. I will help bring some of those variables back into our lives if you allow me too. If you do not I have some other decisions to make. So for right now go back to what you were doing but I want this selfishness to stop."

" I will not allow you to turn into a selfish old man while you are with me. I want to get old together with you. There is a big difference."

So we started what I would call "real recovery." We talked first and then took action. We bathed, we rubbed, we oiled, we watched, we listened and we tasted and we loved again in new ways. I took pills and we pumped to condition tissues for our future use if they ever decided to swell up again. As I told you before, I knew that thing would work if we did some things but I was afraid of taking those first steps and started alone. That was a BIG mistake, mine, all mine and I'm sorry.

I almost threw our future away, she helped me bring it back. I am soon 66 and she is 71. Some of these things that have happened may be age related, some of the things are cancer related. We can not tell the difference, we are to close.

Comments on any part of this story are always Welcome.

And Psssst lean over so you can hear me, "She still loves me and we have found our new normal." None of us wanted cancer and we are all changed by it. Our task as patients, lovers. fathers and friends is to find our individual new normal. Cancer will force the issue right up into your face and drag you kicking and screaming into the rest your life.

Kind Regards Jim


Age 60 when presented to GP on 3 Aug. 2004 with elevated PSA of 13.8.
Referred to Urologist. Biopsy and bone scan in Oct 04.
Pathology report in Nov 04.  Initial Results are T2cNoMo carcinoma of prostate gland.
Had a RRP on 14 Feb 2005. Boy talk about irony look at that date again.
Dr. called 3 days after surgery. I want you both in my office tomorrow morning, we must talk now.
"I wish to apologize because I misdiagnosed your condition.
Biopsy of your organ says Staging is T3bNoMo. Please accept my apology."
At that moment I fell in love with my Dr. and have never changed my mind.
Followup radiation of the prostate bed started early June 05 and ran 42 sessions.
All PSA checkups to date, 5 1/2 yrs, are undetectable.

Post Edited (maltratado45) : 7/4/2010 10:51:43 AM (GMT-6)


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 7/4/2010 9:37 AM (GMT -6)   

  tongue A WARM HUG for your wife!!!!!

She’s once special lady!  yeah  

and you are wonderful for sharing so completely.

 

In friendship ~ Lee 


maltratado45
Regular Member


Date Joined Jun 2010
Total Posts : 84
   Posted 7/4/2010 10:54 AM (GMT -6)   
Thank you Bluebird from both of us.  wink
 
 Jim 
Age 60 when presented to GP on 3 Aug. 2004 with elevated PSA of 13.8.
Referred to Urologist. Biopsy and bone scan in Oct 04.
Pathology report in Nov 04.  Initial Results are T2cNoMo carcinoma of prostate gland.
Had a RRP on 14 Feb 2005. Boy talk about irony look at that date again.
Dr. called 3 days after surgery. I want you both in my office tomorrow morning, we must talk now.
"I wish to apologize because I misdiagnosed your condition.
Biopsy of your organ says Staging is T3bNoMo. Please accept my apology."
At that moment I fell in love with my Dr. and have never changed my mind.
Followup radiation of the prostate bed started early June 05 and ran 42 sessions.
All PSA checkups to date, 5 1/2 yrs, are undetectable.


Roy123
New Member


Date Joined Jul 2010
Total Posts : 10
   Posted 7/4/2010 7:51 PM (GMT -6)   
Thank-you very much for saying it...........like I believe it's really going to be.  (I'm just diagnosed).  You have a tremendous writing style.  Thanks again.
Darryl

badcard
New Member


Date Joined Jun 2010
Total Posts : 11
   Posted 7/4/2010 10:34 PM (GMT -6)   
Jim I also thank you for your insight. I have my 6week Dr visit and first PSA coming up Tuesday July 6. I have my questions ready. This is the first forum I have ever been on and am still trying to assimilate all the terms and abbreviations for PCa. The forum is for me a double edge sword that provides me with info I need to know about a concern I really wish I did not have, and at the same time gives me "too much info" and probably causes me some unnecessary paranoia as I read of others men's experiences.

...anyone else feel this way?

pk5
Regular Member


Date Joined Jun 2010
Total Posts : 20
   Posted 7/4/2010 11:33 PM (GMT -6)   
If the world had more people like you and your wife what a wonderful place it would be.
 
pk5

Age 60
PSA before surgery 6.3
Biopsy show Gleason 9, Staged T2c
Da Vinci 8 Dec 09
From biopsy report:
Tumor does not extend to apical margin.
Evidence of capsular penetration.
Tumor does not extend to circumferential margins.
Tumor infiltration into the base of the Lt.
Seminal Vesicle.
Bladder neck margin confirm this to be free of tumor.
Eight lymph nodes submitted showing only
reactive changes.
Gleason 9 confirmed, but stage upgraded to T3b.
First PSA 6 weeks after surgery 0.16
Second PSA 10 weeks after surgery 0.21
Radiation started 16 March and finished 12 May.
First PSA after radiation 0.21
 


maltratado45
Regular Member


Date Joined Jun 2010
Total Posts : 84
   Posted 7/5/2010 12:24 AM (GMT -6)   
Of course your welcome jahfreak.  I am glad to hear my story helped in some way open your eyes to the fact that you are not alone.
 
First, I am going to try to help you simplify as you harvest new information from the Net and deal with information overload.
 
No matter which browser you are using, dig into the HELP file for that browser and learn how to set up, name and organized folders and subfolders for that browser.  All have different instructions and procedures.  Learn those steps.  That way as you harvest and prune personal resources you can keep them organized better.  I personally have over 1100 places organized and saved.  I've been doing this stuff for a while but you will improve and besides you need something to do as you heal.  I mean most of us early in that process are so scared we can't sleep anyway, might as well learn more about this devil that came stomping into our lives, CANCER.
 
Next Cancer Abbreviations are located on this site at:   http://www.healingwell.com/community/default.aspx?f=35  Once you get there you can copy and paste and if you have any trouble with that.  Let us know and we will deal with it then.
 
That is a page that you passed on the way in to read my story.  It is located at the top of the first page that loads after you push the Prostate Cancer button.  At the top of that page you will find 3 buttons which are important and that all members should read.
 
Now to the dreaded first 6 week check up.  Your feelings are normal.  It does not surprise me that you posted so late at night, that's normal also.  This cancer thing will keep you up.  It is serious stuff.  There is another name for anxiety and I think it is fear.  If you read my whole story you know I just finished my 5 1/2 year PSA test and consult this month.  I am now going to be checked twice a year because my Dr. is less fearful for me and my long term prognosis is less in doubt then it was right after surgery.  Now those appointments are a little easier but still cheesy if you know what I mean.
 
Next, other resources.  I got a lot of help from the following site: http://www.yananow.net/Links.html
 
That site is owned and operated by Terry Herbert who lives in Melbourne, Australia.  It is organized and presented differently.  Give it a look, you may find it helpful.
 
We wish you well on your journey and safe passage.
 
Jim
 

 
 
 


Age 60 when presented to GP on 3 Aug. 2004 with elevated PSA of 13.8.
Referred to Urologist. Biopsy and bone scan in Oct 04.
Pathology report in Nov 04.  Initial Results are T2cNoMo carcinoma of prostate gland.
Had a RRP on 14 Feb 2005. Boy talk about irony look at that date again.
Dr. called 3 days after surgery. I want you both in my office tomorrow morning, we must talk now.
"I wish to apologize because I misdiagnosed your condition.
Biopsy of your organ says Staging is T3bNoMo. Please accept my apology."
At that moment I fell in love with my Dr. and have never changed my mind.
Followup radiation of the prostate bed started early June 05 and ran 42 sessions.
All PSA checkups to date, 5 1/2 yrs, are undetectable.

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