Positive Prostate CA, Brand new member of forum

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

dreadnought
New Member


Date Joined Sep 2006
Total Posts : 18
   Posted 9/29/2006 3:40 PM (GMT -7)   
Hello group,

I have read your board with interest the past few weeks. I am a very healthy and active 52 year old. Workout 4 days week, active life, deep faith.

Routine PSA showed PSA of 12+. Tried antibotics for 2 weeks, still high, so had biopsy late August. Came back postive, Gleason 3+4=7, 4+3=7, T1c, two positive sites. Negative bone and CT scan.
Urologist recommended surgery, and said I could go to B'ham for opinion for Davinci. After many hours of talking, praying and research, had Davinci set up for Oct 23 with Dr. Urban at UAB.

Family is ok......daughters are worried and wife is supportive. Two sisters (best in the world, by the way) are most helpful!
I go back this week for pre-op test and and enhanced MRI.

Thanks for letting me vent...........some of your posts are very valuable.......We are going to buy some of the suggested items this next week.

I welcome any comments and suggestions.

spinbiscuit
Veteran Member


Date Joined Apr 2006
Total Posts : 818
   Posted 9/29/2006 4:22 PM (GMT -7)   
Hi dreadnought,

Welcome to the sight, sounds as though you pretty much have things under control. I also had the DaVinci procedure 2/23/06 at that time I was 60. You are obviously in good physical condition, and that will make a big differance in you recovery time. Also the stronger you are the less discomfort you'll have immediately after surgery. So get going on your Kegel exercises, and keep us posted when you can.

Glen

wittler
Regular Member


Date Joined May 2006
Total Posts : 104
   Posted 9/29/2006 4:50 PM (GMT -7)   
Welcome,
You've found a good place to add to your support group.
Kate
 
My Husband is 52 yrs old
* Diagnosed 7/13/06 with 11.4 PSA, Gleason 7,T2b and Negative Bone and CT scan.
 
* Had Open Radical Prostatectomy on 9/18/06
Gleason was reduced to 6, had negative nodes and negative margins. 75% of the prostate was affected.
 


aus
Regular Member


Date Joined Sep 2006
Total Posts : 211
   Posted 9/29/2006 5:23 PM (GMT -7)   
Take it easy after surgery:
a friend thought he was back to normal a week after robotic and overdid things, which set him back, so best to keep in mind that it does take time for everything to repair even if you might feel good.
 
Some doctors suggest viagra every 2nd day after surgery. Not for sexual activity, but to help the healing process.
 
 

jeb187chs
Regular Member


Date Joined Aug 2006
Total Posts : 62
   Posted 9/29/2006 5:26 PM (GMT -7)   
dreadnought,

My scenario was very similar 55, first PSA 12.1 then tried Cipro for several weeks.... PSA went to 14.5... biopsy performed 8 for 8 positive cores and 8 Gleason on several.

My wife and I looked at all the possibilities and it finally came down to finding a Dr. with a great reputation, does a lot of Prostate Cancer work, gets a lot of recommendations from patients and even other urologists. I was lucky to live in a big city and everyone I ask I came up with one or two names. I sought a second opinion from one of these "experts" and discussed his suggested stategy. When I went back to my original urologist and discussed his suggestions and mentioned the "experts" ideas he said he would suggest going ahead with the "experts" ideas and have him do the surgery, no one better to do it he said. Second opinions are a must and makes you feel more certain when you reach a decision at least that you have looked at multiple points of view. It is your body and the ultimate decision is yours, don't make one till you have ask all the questions and get answers.

I have a friend that had a similar prognosis at the same time I had mine and went with the other "expert" in the area. His doctor used Davinci where mine said his expertise is the standard minimal invasive Lap surgery. Sugeries were about a week apart and thank God both of us have done tremendously well. Even though my pathology report came back worse then his I had more advanced cancer then his, I have had no incontenence at all and he has some problems in that direction but is getting "better". I have always done strenuous work and climbed stairs several times a day, they say this helps in making continence problems less. So you should do well here too.

Moral of my story.... find an "expert" with a lot of experience doing the procedure they do best. Secondly, follow the directions of the doctor and his staff to the nth degree. Stick with them through the whole process...... and don't ever give up.

I am post op now doing well, healing, drinking my Pomegrante juice, taking my supplements, and waiting on my first post op PSA test.

Even though there was cancer cell penetration of the prostate and seminal vessicles, my lymph nodes and all my secondary tests, the bone scan, chest x-ray, cat scan and pet scans all came back clear. I feel better just knowing the cancerous prostate, seminal vessicles, and bladder neck are gone now.

In St. Louis they are doing a new Carbon-11 acetate pet scan which is supposed to show soft tissue spread of prostate cancer.... that too came back clear prior to surgery. One lymph node was questionable so it was removed during surgery but pathology came back that it was clear of cancer.

Family is everything, my sister 14 years my senior was here after surgery, she lives in Georgia now. She took care of her little brother for a week following surgery and let my wife and daughter work. The following week I was up, catherter "Foley" free, and able to basically care for myself. Three weeks out I am going back to work next Monday, and of course waiting for my PSA post op test.

A lot of the posters have not had such a smooth time of it, but I think everyone might agree that a great doctor, a supportive family, and a positive frame of mind are absolutely essential in PCa survival. I don't intend on giving up and neither should you.

As far as buying things, we bought too many cath bags, too many Depends, and too few "baggy" clothes..... it seems like forever to get the belly swelling down (3 weeks and finally starting to get better) ..... and suspenders are a must, belts won't cut it now (or should I say they do "cut" it now).

John

56pontiac
Regular Member


Date Joined Sep 2006
Total Posts : 230
   Posted 9/30/2006 6:07 AM (GMT -7)   
My friend you/we/me have found a great site to vent, and to learn from others that have gone before us. I am very thankful to have found this site. It is a very helpful informative supportive place and a wonderful addition to my family, friend, church, as source for encouragment. I intend to and hope you also will give a report as to your experience with this adventure as it progresses. Just reading other peoples experience has been a great help for me. I go in to meet DaVinci October 12. I will pray for you as I have for others I know about because of this site and I also know because of this site others I don't even know are praying for me.

wittler
Regular Member


Date Joined May 2006
Total Posts : 104
   Posted 9/30/2006 6:43 AM (GMT -7)   
Hi dreadnought,

Welcome to the group. This is a great place to vent, give advice, and receive advice. With good health (aside from PC), a loving family, your faith and drive to beat this, it sounds like you are in the best possible shape for what is ahead of you.

We will be with you all the way!
Kate
 
My Husband is 52 yrs old
* Diagnosed 7/13/06 with 11.4 PSA, Gleason 7,T2b and Negative Bone and CT scan.
 
* Had Open Radical Prostatectomy on 9/18/06
Gleason was reduced to 6, had negative nodes and negative margins. 75% of the prostate was affected.
 


dreadnought
New Member


Date Joined Sep 2006
Total Posts : 18
   Posted 10/1/2006 6:20 AM (GMT -7)   
Folks,
Bless your collective hearts for responding. I appreciate the prayers, observations and advice. I WILL be sure to take the recovery as it comes. I tend to be impatient and had already decided to "push" myself back to work soon......but I will wait to return until my body (and my wife!) tell me I am ready.

I will keep all up to date on the enhance MRI that is scheduled for this week.

Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 10/1/2006 9:05 AM (GMT -7)   
Dread,

You've chosen a well published surgeon. I've read some of his articles in the Urology Journal (I think it was). Good Luck and we wish you well. Sounds like the family from heaven is already by your side.

If I were to give any advise....begin taking selenium and lycopene everyday up to the day of surgery. There is such good support that these do indeed reduce the severity of PCa .....even in a 3 weekspre-op trial. Stay in touch so we know how you and your family are doing.

God Bless, Swim

hamala
Regular Member


Date Joined May 2006
Total Posts : 54
   Posted 10/1/2006 9:59 PM (GMT -7)   

Dreadnought,

One of the best advice I got before surgery is Kegels, Kegels, Kegels.  Start now and strengthen those muscle.  This will help with bladder control after surgery.  I was one of the lucky ones and stopped wearing pads 2 weeks after the catheter came out and I am convinced the pre exercise helped with this.  Also, keep in mind there is an emotional aspect to all of this that goes up and down so keep the communication going with your wife.  Also, on a personal note, you two enjoy yourselves as often as possible, as there will be a dry spell after surgery.  Best of luck to you.

Michael


Age:41, Lump found on routine physical. PSA:1.4, 2 of 13 cores positive, Gleason:6, DeVinci surgery on 8/8/2006


M. Kat
Veteran Member


Date Joined Jul 2006
Total Posts : 715
   Posted 10/2/2006 5:07 AM (GMT -7)   
good advice, Michael, about the communication and "enjoying" yourselves. Even though Jeff is pretty much back to "normal", he's now dealing with the emotional part of this. Communication is so important because we worry about each other, etc and assume things. Dread, it sounds like you are well on your way to getting the cancer removed and will have a quick recovery. 3 weeks will fly by! kat
Husband Jeff 56 years old
diagnosed July 27, 1006
PSA 6.5
2 positive areas in biopsy, Gleason 3+3=6
Radical Retropubic Prostatectomy August 30, 2006


JJK
Regular Member


Date Joined Oct 2006
Total Posts : 24
   Posted 10/5/2006 6:45 PM (GMT -7)   
First time here. I am going into see the doctor on Tuesday the 10th. I am seeing Dr. Bertrand Guillonneau in Sloan Kettering in NYC. Anyone have experience with him?

One more question, when do you tell your employer? I am a sales manager so I can be working from home, but what about the attitude of your employer? I don't want the sales guys that report to me to know.

What are your thoughts? Thanks...JJK

Tim G
Veteran Member


Date Joined Jul 2006
Total Posts : 2249
   Posted 10/5/2006 7:24 PM (GMT -7)   
Dreadnought--Welcome to the forum that none of us expected to join, but when we found out that we or a spouse or relative or friend had prostate cancer were glad we did. I did not discover this forum until AFTER I had surgery, and could have used the support beforehand.  Oh, well, better late than never.
 
I would recommend as much physical exercise as you can do to get thru the surgery and recovery better.   I have seen this recommended for any surgery.  I breezed thru the recovery period with relative ease thanks to a rigorous pre-surgical exercise program that included lots of abdominal and core body exercises.  I am back to my regular exercise routine now.
 
This group is very supportive and you'll find some terrific folks and good information here.
I wish you the best with your upcoming surgery and recovery.  Family support is helpful too, if you have it.  My daughter and wife were amazingly thoughtful, supportive and helped me thru the dark days by their loving support.  I am not home free, but I am in a good place now with every hope that I am cured of prostate cancer.
 
Tim
Age 57  PSA 2.5  Gleason 5   Open Radical Retropubic Prostatectomy/Bilateral Nerve-sparing  6/21/06  Cancer confined to prostate  No further treatment


shepla
Regular Member


Date Joined Sep 2006
Total Posts : 102
   Posted 10/6/2006 10:37 AM (GMT -7)   
HEY J J K Shepla aka Mike K. here going to Sloan Kettering for open RP the 12th with Dr. E astham. I Think your guy does the Laprascopic Sloan has a great Rep. They all have done a lot of RPS. My guy has done over 2,000. Age 59 PSA 3.3 2 out of 12 in Biopsy.Gleason 3+3=6. Good Luck to both of US!! Shepla

spinbiscuit
Veteran Member


Date Joined Apr 2006
Total Posts : 818
   Posted 10/6/2006 12:13 PM (GMT -7)   
Hi shepa,

I wish you good luck and a speedy recovery on the 12th.

Glen

shepla
Regular Member


Date Joined Sep 2006
Total Posts : 102
   Posted 10/9/2006 9:40 AM (GMT -7)   
Hey Spinbiscuit Thanks for the Good Wishes I need it. I hope your recovery is going well I think you were done in Feb. Thanks again the 12th is almost here! But i want to get it over with. Shepla

bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 10/9/2006 6:16 PM (GMT -7)   

Hi ~ Dreadnought,

 

Welcome Friend ~ I’m glad you found us!  And we’re definitely glad we have you here with us!!!!!  Pull from us as you continue on this path with prostate cancer.  The journey is best shared with friends who have been there and can help you onto the next stepping-stone.

 

Buddy is 52 and had a great wellness program for the past 4 years.  I truly feel this helped with his recovery / healing process.  So ~ keep up the exercise and as Spinbiscuit and Hamala  stated…. Kegel, kegel, kegel…. Get that sphincter muscle ready for surgery.

 

The main thing is “healing”…..   Giving your body the proper time to heal….

 

We will be on the countdown with you and you will feel our strength!  Please let us know your results with your MRI.

 

Keeping you close in thought and prayers,

In Friendship ~  Lee & Buddy

 

"GOD Bless You"

 

It's a little prayer "GOD Bless You"...

but it means so much each day,

It means may angels guard you

and guide you on your way. 

                             ~author unknown~

 

 


mama bluebird - Lee & Buddy 53
RRP April 3, 2006   PSA 4.6 Gleason 3+3=6 T2a   Confined to Prostate
June 29th PSA Less than 0.1 Non-detectable  :)


dreadnought
New Member


Date Joined Sep 2006
Total Posts : 18
   Posted 10/10/2006 7:00 AM (GMT -7)   
Guys,

Thanks again for the prayers and heartfelt replies. I had my pre-admission physical, bloodwork, and MRI last week. The MD said he did not find anything unexpected and we are still a go for Oct 23....and still hoping to move it up.
I will certainly keep you all informed.......wife and I are going shopping this weekend for some of the suggestions you all have made on the board.

Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 10/10/2006 8:12 AM (GMT -7)   
Dread,

Don't shop for too much! At least keep the tags on things to facilitate quick returns...unused items of course.....! I bought a small package of poise, 2 pairs of baggy carpenter style pants (my brother now wears them), a bottle of stool softeners(wasted) and a quart of white viniger. The vitimans and supplements are the norm around here. Nothing else. No fancy chairs, no fancy pillows, no big bottles of pills, nothing. The hospital provided everything he needed for cat care. We used very little of what was brought from there even. They throw away any unsused patient items once they've been at bedside typically so pocket the tape and antibiotic ointment...it's yours anyway. Good hint ...... Get a script for one of the big 3 filled and begin by taking it either as soon as the cath comes out or the day you get home from surgery. Good many Docs are now starting a patient out right out of the shoot and getting decent reults.

My husband was 48 and in good health other than having a cancerous prostate. He needed to continue feeling capable and well...which he did nicely. Every personality is different. I purchased accordingly with his personality. Kinda like treating the whole person!

Be Well, Swim

Wicket
Regular Member


Date Joined Aug 2006
Total Posts : 316
   Posted 10/10/2006 8:43 AM (GMT -7)   
Swim,
You have to remember the rest of us aren't as medically wise as you are or maybe I'm just dumb today tongue .  What does this statement mean? 
Get a script for one of the big 3 filled and begin by taking it either as soon as the cath comes out or the day you get home from surgery. Good many Docs are now starting a patient out right out of the shoot and getting decent reults.

Thanks!!
Ellen
 
 
Curtis, 63,  Diagnosed Aug 21, 2006
T1C
Gleason 3+3=6, 3+4=7
PSA 4.10
 
Bone Scan Negative!!
 
DiVinci surgery done on October 3rd, 2006
 
 


56pontiac
Regular Member


Date Joined Sep 2006
Total Posts : 230
   Posted 10/10/2006 8:53 AM (GMT -7)   
I think she means viagra, cialis, and I don't know the other one. She speak so me no understand Kimosabe.

Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 10/10/2006 11:21 AM (GMT -7)   
So Sorry Chief Pontiac (I'm from Michigan..we know who he is)

The big 3 is of course..Levitra, Cialis or Viagra. On another fourm, I've heard so many men (and ladies) say they do better with Levitra. I have to say, Paul does too.

Ellen,
More often than not these days, a man is placed on a daily dose for 30 days or he do an every other day dose of one of the PDE5 drugs as a way to protect the penile tissues. I'll get back later on this if you would like.

Gotta go...rain's a comin and we have only 5 more feet of fense to paint. 5 stinkin feet and gotta go get one more gallon...grrrrrr. Tigers play tonight and I have a class to teach. This working for a living is for tha birds. Think I'll become a politician instead....

Swim

floridarobert
New Member


Date Joined Dec 2006
Total Posts : 11
   Posted 12/26/2006 2:00 PM (GMT -7)   

What your doctor does not tell you.

 

In December 2005 I was diagnosed with prostate cancer. The urologist game me a pamphlet which spelled out the choices for treatment.   After reading the pamphlet I started to read via the Internet and found more treatment option than the pamphlet recommended.

 

In the U.S. the treatments are typically 1. watchful waiting; 2. radiation (several kinds) and 3. surgery to remove the prostate.  

 

  1. Watchful waiting capitalizes on the usual slow growing nature of prostate cancer.  If one is over age 70 or 75 one might die of something else before prostate cancer kills.  The operative word is “might” as the available information is statistcaly based. If  a high percentage of people with prostate cancer will experience slow growth of the cancer, that does not rule out the small percentage that might have cancer that is spreading to other parts of the body.  It is not easy to distinguish slow growing from fast growing cancer.  In addition men are living longer these days; waiting is risky.               

 

 

  1. Radiation either by beam or by wire of one source or another tend to kill the cancer but also carry some unwanted side effects: impotence and incontinence (fecal and/or urinary).

 

  1. Radical prostatectomy carries similar side effects as radiation.

 

After reading about the above options I was not happy with any.    I  kept reading and found hormonal treatment, freezing,  and ultrasound. Hormonal treatment and freezing (cryo surgery) which  both carry significant levels of unwanted side effects.  High intensity focused ultrasound(HIFU) appeared most promising.

 

HIFU

 

Hifu has been used in Europe and Asia more than a decade to treat benignly enlarged prostate.  More than a half dozen years ago this method has been used for treating prostate cancer. This is the least invasive treatment for prostate cancer that carries the possibility of a cure.  There is no incision and side effects appear to be less than other methods.  Since this is experimental one is engaging in a degree of risk since large numbers of patients over many years have not yet been studied. 

 

From my amateurish reading of literature on the internet, it appeared to me that HIFU offered similar survival rates to someone in my situation (T1C; psa 4.6; Gleason score of 6) with less likelihood of  such side effects as impotence, incontinence, and  fistula.  Perhaps radical prostatectomy has a slightly better cure rate.

 

 

Among HIFU machines, I chose Sonablate over Ablatherm largely because Sonablate gives the physician a live image.

 

I emailed a number of different practitioners and researchers  who use Sonablate in Italy, England, Germany, U.S.A. and Japan. Most responded quickly and were willing to answer my questions.

 

I asked each physician about price and how much experience they had.   The American physicians were the most expensive($20,000 for treatment in Dominican Republic or Mexico), followed by the English, Japanese and finally two  Italians.   Dr. Durso in Torino, Italy was willing to do the procedure for about $7800. With my love for Italy and a good price, I nearly chose him. I then learned there was an “upgrade” to the machine; when I asked him about the upgrade, he did not respond.  I finally chose Dr. Uchida who not only has the most up to date equipment, but he has more experience than any other person working with Sonablate.  For $10,000 I could employ the services of one of the most respected researchers and practitioners in the field.  

 

We arranged for the procedure and I flew to Tokyo on my spring break.  I took my wife and daughter so we could have a little tour of Tokyo, a welcome distraction.  Dr. Uchida met me in the lobby of his hospital, Tokai University Hachioji Hospital.  Hachioji is a suburb of the sprawling city of Tokyo.  I felt as though I was taking the subway to Queens from Manhattan. 

 

Dr. Uchida gave me a room in which my wife and daughter could spend the night.  He spend two hours working on me with the Sonablate from approximately 5- 7 p.m.    I felt very little except the insertion of the catheter through the abdominal wall into by bladder. That felt like someone was trying to jam a screwdriver through my belly.  The next day I was ready to leave the hospital and continue my tour of nearby parks, museums, and temples.  Unfortunately the tube of the catheter prevented me from closing my pants! I was walking around Tokyo with my pants unbuttoned and my shirt tails out covering my front. 

 

The catheter was the most uncomfortable part of this experience, though I never doubted that it was a worthwhile trade off.  I complained to Dr. Uchida who gave me a more flexible tube. It was still irritating but tolerable.  Over the next 3 weeks, increasingly more urine was coming out of my penis than the plastic tube. 

 

I returned to Florida after about 10 days in Tokyo and sought a way to remove the catheter. I had made an appointment with the local urologist who had called for a biopsy.  When I showed up for my appointment to remove the catheter, he refused to see me since I had gone to another doctor.  However annoying that was I called a number of other doctors and found two urologists willing to work with me. 

 

I had my psa tested every 3 months, and it went from 4.6 biopsy, to 5.2 at time of treatment to 1.2  two months after.  Two more tests a few months later yielded 1.3.  I had a biopsy 12 months after the first and 9 months after the HIFU, and all 12 samples were benign.  Such a biopsy does not guarantee that I am cancer free, but I am in pretty good shape to face the future.  Erections have been weaker than prior to the treatment, but I can attain and maintain an erection. There is no ejaculate, but I can climax. Climaxes are slightly weaker than before. I tried the three drugs for erectile dysfunction: Cialis, Levitra, and Viagra each for daily dosage for several weeks.  Levitra worked best for me. I have no other side effects. 

 

I would be happy to talk to anyone interested in HIFU. I am not an expert but I have acquired valuable experience. 

New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, December 14, 2017 4:12 PM (GMT -7)
There are a total of 2,905,539 posts in 318,871 threads.
View Active Threads


Who's Online
This forum has 158222 registered members. Please welcome our newest member, tlee4077.
365 Guest(s), 11 Registered Member(s) are currently online.  Details
Italatin8, PeppermintTea, Dahlias, countess18, JEN02, Szabo246, momem3, MacroMan, irish4me, Vgrantn, Tena believes