Hello everyone - I'm new to the board

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Missyj
Regular Member


Date Joined Sep 2007
Total Posts : 87
   Posted 9/9/2007 8:23 AM (GMT -7)   
Hello to you all
 
I just signed up today after reading many of the supportive and warm comments made by members
 
My husband, aged 59, was recently diagnosed with prostate cancer. He had a gleason score of 8, PSA of 17 and, after a bone scan and mri, been told he has the cancer metastasised (SP?) to spine, neck, ribs, pelvis and buttock. Also to seminal vesicle (I had never even heard of this before his diagnosis!)
 
We are really in shock as he had no symptoms prior to an acute urinary retention episode, and remains asymptomatic now still. We have 16 and 18 year old girls who are really fearful for their dad :(
 
He has been given hormone treatment which I guess is pretty standard. We wont know if this is effective until he has a psa test in November.
 
I wondered how other people cope with this terrible waiting game. I don't know but I think the first psa test is really crucial for determining how successful the hormone therapy will be?
 
Anyway, I'm so pleased to have found this friendly looking board as it is difficult to talk to people who don't know much about prostate cancer. I know people are trying to help but if we've heard one person say "Oh, prostate cancer, it's nothing" we've heard a dozen!
 
Sorry for the long intro
 
Julia
 

Mike A
Regular Member


Date Joined Feb 2007
Total Posts : 213
   Posted 9/9/2007 9:05 AM (GMT -7)   
Hi Julia, and I'm so sorry to have to welcome you here. People do mean well, but those "it's nothing" comments are based on ignorance. As you now know PC is really "something." Nobody on this board has to tell you that your husband has a long road ahead of him. But is is a road full of hope, support, and medical breakthroughs, and we are seeing more and more of them each day. Your Husband's cancer is aggressive, as evidenced by the Gleason 8. How he responds to the hormone therapy will indeed be indicated the next and future PSA scores. There are many on this board, who have been in hormone therapy, and I'm sure they'll chime in with answers to any specific questions. You will be in my thoughts and prayers as are so many others on this board!
Best,
Mike
June 2005 - Age 53 PSA 4.8 at regular physical
October 2005 - After several rounds of anti-biotics, PSA 5.2 at Urlogist
November 2005 - Biopsy negative
July 2006 - PSA 5.9 at regular Physical
October 2006 - After several more rounds of anti-biotics PSA 8.1
November 2006 - Second biopsy - Positive
December 2006 - Gleason (3+4=7), Tumor T1c, CT Scan and Bone Scan Negative
January 2, 2007 Robotic Prostatectomy, University of Rochester Medical Center - Tumor confined but larger than thought, only one nerve able to be spared. Margins clear.
February 2007 - Three to four pads a day, no erection with viagara.
March 2007 - Down to two pads a day, had first intercourse with Erecaid pump and bands, otherwise still flat tire.
April 2007 - First Post-Surgical PSA 0.02 and a great relief! Down to one pad a day. Still unable to achive erection without pump.
May, 2007 - Still one pad a day, even try a smaller pad on occasion. Slight improvement on the ED.
July, 2007 - Six Month Post-op: PSA 0.04 still Non-Detectable. One small pad/day for a few drops only! No change in ED.
"If patience is a virtue, I feel like the most virtuous guy on the planet!"

Post Edited (Mike A) : 9/9/2007 10:07:56 AM (GMT-6)


IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 9/9/2007 9:16 AM (GMT -7)   
Hi Julia,
 
We are sorry to hear about your husband's diagnosis.  There are many others on this forum with much more experience than I have with the disease, who can help you with specifics.  My purpose, like Mike, is to welcome you and tell you that we will be here with our support and prayers.
 
The most important thing for you and the children right now is to have hope.  Hope can be gained by the support of the good people here, by your faith, and by gaining knowledge.  For the knowledge part, my urologist/surgeon gave me a wonderful book to read that helped me tremendously.  Many on this forum have also read Dr. Walsh's book and you can find a reference to it and other helpful books at this link: BOOKS... Recommended by Forum Members  Chapter 12 of Dr. Walsh's book entitled "Help For Advanced Prostate Cancer" may help your family.
 
Our thoughts and prayers are with you on this journey.
 
Please feel free to express your feelings and ask as many questions as you like.  We will be here.
 
All the best,
 
Barry (a.k.a. Idaho)
 
 

Da Vinci Surgery July 31, 2007… 54 on surgery day
PSA 4.3  Gleason 3+3=6  T2a  Confined to Prostate

Waiting to take that first post-op PSA

My awareness web site: http://pca-info.blogspot.com

 


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 9/9/2007 9:43 AM (GMT -7)   
Julia,

Cancer specialist "Snuffy" Meyers is among the leading hormone treatment specialists in the country. If no one has yet to discover PAACT, he does a regular article for them. I'm sorry for your husband's diagnosis and wish you and your family the very best. Waiting for that first treatment PSA is really hard.

Paul
 


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8122
   Posted 9/9/2007 10:34 AM (GMT -7)   
Hi Julia,
Sorry you have to search out a support group but you found a good one. Healingwell has some great people hanging around and they will all respond you. The hormone treatment is indeed standard. My numbers are not too far off from your husbands. I too hear people say prostate cancer is "the good one". But no cancer is less than very serious. Insensitive comments like that are merely a result of ignorance and an attempt to make us feel better. Reality has it that your husbands condition is serious. But stay positive and believe in continuing on as you and your husband normally would. PC is known as the silent killer as it usually does not have symptoms. In my case it was a simple extra test at a physical that caght my advanced disease. Otherwise nothing. Not a pleasant surprise. And my case is not "the good one". Still I am doing well and will continue on as I always have. Blessings to you and your family. Ask any question here and you will likely receive a very usable answer. Our prayers are for you, your husband, and all here at this site.

Tony


Age 45 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007
Post-Op Pathology was poor: Gleason 4+3=7, 4 positive margins, Stage pT3b (Stage III)
HT began in May, '07 with Lupron and Casodex 50mg
IMRT radiation for 38 Treatments ending August 3, '07
 
My PSA did drop out after surgery to undetectable.  It has not returned and I will continue HT until January '08.
 
My Life is supported very well by family and friends like you all.
 
STAY POSITIVE!


GreenAcres
Regular Member


Date Joined Jul 2006
Total Posts : 474
   Posted 9/9/2007 11:30 AM (GMT -7)   
Julia - everyone here understands what you're feeling. My husband and I have found so much solace and knowledge here over the past few months - those were simply things you often can't get from those who don't understand.

Please don't worry about "going on too long." You're entitled and everyone here will continue to encourage you to ask any and all questions. As you need emotional support (and there are plenty of ups and downs), we'll help with that, too.
Husband age 66
PSA on 5/1/06: 4.2 (had doubled in 13 mos. and rising monthly)
DaVinci Surgery 8/2/06 - Austin, TX w/Dr. Randy F.A.G.I.N.
T2a (at biopsy)
At pathology - cancer cell leakage into fatty tissue
Post-Surgical PSA on 10/06, 4/07 - undetectable!
Update: 11/1/06 - perhaps bladder neck involvement; 30%-50% chance of recurrence
Future: PSA tests twice-yearly for now - Next one: 10/16/07
 


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 9/9/2007 1:49 PM (GMT -7)   

Hi ~ MissyJ & Loved Ones,

A "Special" Warm Welcome to You!

This is truly a great forum!!! ~ "You" have joined! You are now part of our forum family ~ a group of wonderful individuals who are so willing to share their journey.

Thank you for joining all of us on this road to HealingWell…..

KNOWLEDGE IS POWER... and POWER conquers fear

* bluebird ~ Moderator for Prostate Cancer Forum

http://i206.photobucket.com/albums/bb179/mamabluebird1955/mamabluebirdWelcome.jpg

(Direct Link ~ just click on the title below and a new window will open!

Reminder … click on the REFRESH icon once you get there)

Prostate Cancer Resources, Helpful Hints, and Topic Thread Links http://www.healingwell.com/community/default.aspx?f=35&m=52996

(Located at the top of page 1,2,3… 65,67… on the Prostate Forum : )

Invitation to New Members… Welcome to HealingWell (Special Request) http://www.healingwell.com/community/default.aspx?f=35&m=902976


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 9/9/2007 1:57 PM (GMT -7)   

Hi ~ MissyJ,

Just a little note to say "hi"... You truly have found a "special" place!! We welcome you and look forward to walking with you on your journey. It's a journey best traveled with friends who know!!

You can write as much or as little as you need to help you!  The more we know the better we are to understand the exact location in your path... Our hands reach out and we are so thankful you holding on!!

Please plan to stay close. In New Friendship ~ Lee & Buddy


mama bluebird - Lee & Buddy… from North Carolina

 

v          We invite you to visit our personal thread:  Click Here:  “Our Journey” ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

3rd PSA 08-07-2007 Less than 0.1 Non-Detectable :)


Cedar Chopper
Regular Member


Date Joined Mar 2007
Total Posts : 432
   Posted 9/9/2007 8:16 PM (GMT -7)   
Missy Julia,

This fight will be most difficult for you and your husband and the girls.

Feel free to lean on this group of caring, informed, kind, and intelligent friends you have found here.  You can ask anything, express your thoughts and feelings, or just find someone who understands & cares. 

We have some understanding of the battle you face
   -and how disruptive this can be to your family.
Cry whenever you feel like it -  but try not to linger in despair.
Your new friends here will hold out hope and comfort for you at all times.

CCedar
ICTHUS

2 Years of PSA between 4 and 5.5  + Biopsy 23DEC06 
Only 5 percent cancer in one of 8 samples.  +  Gleeson 3+3=6
Radical Prostatectomy 16FEB07 at age 54.
1+" tumor - touching inside edge of gland.  + Confined:)
Pad Free @ 14 weeks.  Six Month PSA <.003  :)
At 6 months, ED treated with Pump Exercises & 50mg Viagra Daily
Texas Hill Country FRESH Produce Department Manager
Have you had your 5 colors today?


anniea
Regular Member


Date Joined May 2007
Total Posts : 234
   Posted 9/9/2007 8:52 PM (GMT -7)   

Hi Julia

I am so glad you found this group of caring people. I truly wish none of us had to be here but were all here for each other. This is a safe place to talk about your feelings and discuss what the docs tell you and your husband. I have found by reading other peoples post I have alot more questions to ask the doc that I would not have otherwise thought of. Here is a group of very knowledgable people who really do care. Welcome to the group and ask away. You will get answers.

Our prayers will be with you and yor family.

Rick


Rick & Diana
6-30-06  PSA 2.54
1-22-07  PSA 4.98
1-26-07  PSA 5.09
Diag: 2-14-07 Gleason 8 Stage T1c PSA 5.09
Bone Scan 3-1-07 Clear
Radical retropubic surgery 4-2-07  Post surgery Gleason 9 Stage T3a Positive margins
4-29-07 PSA 0.02
6-9-07   PSA 0.02
7-6-07   PSA 0.03
8-1-07   CT Scan & Chest X-Ray   Clean
 


kdnole
Regular Member


Date Joined Jun 2007
Total Posts : 152
   Posted 9/10/2007 6:10 AM (GMT -7)   
Missyj - The other thing that is helpful if someone on this board is answering your questions don't hesitate to ask for their phone number. Sometimes it's easier to talk over the phone. Everyone here knows cancer is cancer no matter what, and remember there are no stupid questions.
God Bless and I'll keep you in my thoughts and prayers.
Age 44
PSA 4.8
Gleason 3+3=6
T2
Da Vinci 7/31/07 @ Duke
2.5 hr. surgery, released from Duke with in 14 hrs.
Saved both nerve bundles. 
Foley out 8/10/08
Positive Pathology Report 
New Gleason 7
Left side near nerve bundle invloved
Oncology visit in the near future for radiation
Back to work 3 weeks following surgery - Sales


dutchy
Regular Member


Date Joined Jun 2007
Total Posts : 75
   Posted 9/10/2007 6:36 AM (GMT -7)   
Dear Julia, I am wishing you a lot of strength. about 2 months ago, my husband (53) and I were in the same situation you are in now. Despite an almost complete lack of symptoms, he turned out to have a PSA of 1,930 and wide spread mestases (bones and lungs). Like your husband, he was put on HT immediately (Lupron) and the side-effects are merely a nuisance. You'll be surprised how quickly you'll find that life goes on, you just have to take it one day at a time. The first PSA test will tell you whether your husband responds to hormone therapy, but most of the time people do. Take care, Dutchy

Rock50
Regular Member


Date Joined Nov 2006
Total Posts : 264
   Posted 9/10/2007 8:25 AM (GMT -7)   
Julia,

The first Doctor I seen after being Diag. examined the biopsy and factored in my gleason score of 8 and told me to prepare for the worst. I just got my one year PSA and it was .02 which is basically 0. My point is never let any news keep you down because there is always hope. I was told over and over the most important thing I could do was keep a positive attitude. While easier said than done, I did manage to stay positive most of the time and I do believe it is a very large factor in the overall treatment.

Please research as much as you feel comfortable with so you and your husband can make educated decisions along the way. Finally, now that you have found this site you have taken care of another very large factor, Support.

Take Care

Post Edited (Rock50) : 9/10/2007 9:28:12 AM (GMT-6)


jwb187
Regular Member


Date Joined Apr 2007
Total Posts : 101
   Posted 9/10/2007 8:53 AM (GMT -7)   
Dear Julia,

Again as previous posters have said, welcome to the club that nobody wants to belong to. You will find an outpouring of hope and experience on Healingwell, there are many, many posters that have been exactly where your husband is. I'm sure at this time you are going through many emotions, what do I do next, how serious is this stuff, is he going to be alright, etc, etc... These are all normal feelings and you and your better half will work your way through all of them. My advice to you is to read, read, and then read some more, learn all you can about pca and the many treatment options available today. When you get discouraged come to the board and let it out, I guarantee you that you will get many responses that will help you in your decision making process. There are many of us on this board that are taking Hormone therapy, myself included. Tell your hubby to hang in there, have a positive attitude and do a lot of praying, and you'll be alright......good luck to you both...jwb.
age: 61
PSA 4.57 - Positive DRE
Biopsy 3-19-07 - Gleason 4+4=8
Negative bone scan 3-20-07
DaVinci 4-24-07
Catheter out 5-01-07
post op pathology:
positive margin left side of prostate
left seminal vesicle involved (both removed)
No lymph node involvement
New gleason score 9
T3B....radiation consult on 5-9-07.
June 5, 2007 1st psa post surgery 0.62
June 27, 2007 second psa post surgery 0.59
June 27, 2007 started Lupron injection (24 mos)
September 6, 2007 scheduled to be marked and prepped for radiation therapy.


Missyj
Regular Member


Date Joined Sep 2007
Total Posts : 87
   Posted 9/10/2007 11:20 AM (GMT -7)   
Thank you so much to everyone who has responded with messages of hope and support. I am overwhelmed by the caring nature of you all - what a great place to have stumbled across!
 
It is great to hear of people in a similar position as my husband doing well. I have been in despair at times looking up stuff on the internet and finding out things I really didn't want to know. I think there is nothing like hearing REAL people's experiences to get a grasp of reality.
 
Yes I know the situation is not great but with a positive mental attitude I feel that we can do battle against this horrible illness, just as you all are.
 
My best wishes and prayers go out to all of you
 
Thank you again
 
Julia
 
BTW, we are based in the UK so if it looks like our posts come through in the middle of the night, it's actually daytime here :)

biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1463
   Posted 9/10/2007 11:34 AM (GMT -7)   
Hey Julia,

I'm so glad you found hope here. Isn't it great to know that we have a place to find information, hope and a place to let it all hang out.

We can do this together. Please stay with us for we need you as much as you need us...

Jim
Age 73. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Pathological stage: T2C. Gleason 3+4. Cancer confined to prostate.
PSAs from  1/3/07 - 7/18/07 0.00. 
T level on 4/2/07 - 48     On 7/16/07 - 613
Started Tri-Mix on 8/7/07.  .02 ml and 50 mg Viagra.  It works!!!
Next PSA and T tests on 10/17/07
 
"Patience is essential, attitude is everything."
 


JustJulie
Regular Member


Date Joined Mar 2006
Total Posts : 355
   Posted 9/10/2007 12:37 PM (GMT -7)   

Julia:

You have found a wonderful group of people here and with the wonders of the internet, distance no longer matters - we're all one big family.  We've all been where you are and, after getting over the initial shock, we've learned to lean on one another and share opinions and information as though we were sitting in the same room.  Take in as much as you can, research as much as you can and make informed decisions.

I've relied on the posters to this forum for alot since my husband's diagnosis and they've never let me down.  They've provided information, quelled my fears and picked me up in my darkest hour.  They truly understand and are truly determined to get you through - trust them as I have trusted them and you will not be disappointed.

My thoughts are with you and your family as you travel this road.

 

JustJulie


puget
Regular Member


Date Joined Mar 2007
Total Posts : 237
   Posted 9/10/2007 8:37 PM (GMT -7)   
Just wanted to add my welcome. Sometimes the darkest time is when you feel so alone and so out of control. Knowledge truly is power, especially when you're facing this da*ned disease. The great thing about this forum is you can ask anytning and somebody will have useful information, even if it's just a tidbit to get you started in learning what you need to know. Stay with us and hang in there. You and your husband can beat this thing -- or at least keep in under control. Have faith.
Puget
60 years old
Dx March 2007
Pre-Surgery Gleason 3+3 = 6
Clinical Stage: T1c
Biopsy: 1 in 10 positive
Da Vinci: June 7, 2007 
Post-Surgery Gleason 3+3 = 6
   Clear at margins
First Post-PSA Sept 07


nscott
New Member


Date Joined Sep 2007
Total Posts : 9
   Posted 9/11/2007 5:53 AM (GMT -7)   
Hi Missy, I wanted to add my welcome also before I head off to my last consult before deciding what to do with my PC. All the other posts are right on; please each of you keep a positive outlook ... being upbeat, they have proven, is very beneficial to any treatment. I also recommend Dr. Walsh's book. I bought it yesterday and found it an easy read and quite helpful. Remember, we are her for you.

nscottb
Age 60 (almost)
Pre-diabetic
Biopsy 2005 - Negative on 12 cores
Biopsy Jan 2007 - Negative on 23 of 24 cores, inconclusive on 24th core
Biospy and Dx Aug 07, 1 of 24 core samples, Stage T1c, Gleason 3+3
PSA went up and down from intial 4.5 with an enlarged prostate to 9.1 prior to last biopsy
Free PSA 26%
Still deciding on treatment at Kaiser in Northern VA
 


Rock50
Regular Member


Date Joined Nov 2006
Total Posts : 264
   Posted 9/11/2007 9:22 AM (GMT -7)   
Julia,

Hope you and your husband are doing well. I ran across this and it contains some of the best info available. I started under the Resources heading. Hope it helps. Stay positive!

Good Luck!!!!

Eric

http://urology.jhu.edu/prostate/cancer.php
Prostate Cancer, Removed by Da Vincie Robotic
in Aug. 2006 
Poorly Differentiated Adenocarcinoma involving Left and Right Lobes involving 80% of the Specimens
Gleason 4+4=8
Pathologic Stage T2C No Mx
Age at Diag. 51
1 year PSA .02


uncledan
Regular Member


Date Joined Aug 2007
Total Posts : 120
   Posted 9/11/2007 10:35 PM (GMT -7)   
Dear MissyJ, Welcome to the forum that cares. You will find more compssionate people here than anywhere you go. The one thing you can do is get the info to allow your husband and you make the decision that is right for you and him. It is easy to get down, but there are answers here to bring you up. Keep coming back and never stop asking questions. We have heard it a hundred times there are no dumb questions. As you already know there are a lot of dumb answers from the uninformed. Remember it is always darkest just before the dawn. Being hit with the results of the tests as you were, no wonder it seems dark and dreary. With a positive attitude, our prayers, and your doctors expertise you will get through this. God Bless, Uncle Dan
Age 67
No symptoms, DRE negative
10-06 PSA 5.44 01-07 PSA 6.47
CT and Bone scan negative
05-07 Biopsies, 2 of 6 positive
Gleason Score (3+4) 7 Stage T1c
08-14 Dr. Dasari - Baptist Hospital
da Vinci RAP, five hours surgery
Hospital 2 1/2 days, 8 -14 to 8 -16
Pathology report Negative margins
Cancer encapsulated,
Lymph nodes 2 R & 1 L - Negative,
R & L seminal vesicles - Negative
Gleason changed (4+3) 7 closer to 8 than 6
8-31 Use pad when out, Sleeping without pad.

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