New to the forum and trying hard to be optimistic!

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

SeekingBliss
New Member


Date Joined Feb 2008
Total Posts : 15
   Posted 2/17/2008 8:10 PM (GMT -7)   
Greetings to you all.
 
I have been reading the posts in this forum for the last week.  I keep searching and looking at the member's stats to try to find people with similar stats as my husband so that I can assure myself he will be fine for many years.   When he originally had blood tests done in July 2007 relative to his high blood pressure, PSA was checked just for precaution.  We were alarmed to find it was 20.  Though at the time, had no idea what 20 really meant.  His PSA was approx 2.0 in February 2006.  He was quickly referred to a urologist and had a biopsy.  He originally went for the results himself as he was certain there was nothing wrong.  He did not have any symptoms.  He was delivered the devestating news of prostate cancer.  I went with him to the next appointment when he decided which option of treatment he was going to take.  They very quickly sent him for a bone scan and cat scan.  The severity was starting to sink in.
 
Fortunately, both scans were negative.  He decided on a prostatectomy and is still happy with that decision.  However, once again we received a shock.
 
When we returned last week, we were quite certain we would be told he was cured.  He is having incontinence issued and ED.  The worse news we expected was the ED was permanent and maybe surgery would be required to help with the incontinence.
 
It is almost surreal to now learn that he has to live with PC as the urologist is quite sure based on all of the results that the PC has spread beyond the local area.  We thought at worse he may need radiation and that would be inconvenient.  Now we have learned that radiation isn't even an option.  The more I read I am realizing he has what is considered advanced prostate cancer.  We found out this news last Wed and went away for four days on a trip that had already been prearranged.   We had lots of laughs and did not dwell on this diagnosis.  Tonight he seems depressed.  I told him the first night we had the news that if love and laughter would heal this disease or put it in recession, we should be well on the way.  WE are both a little weary as our positive attitudes and refusal to dwell on this challenge has so far not netted us the good news we have been looking towards.
 
I really don't think my husband has linked together the severity and I did not want to ask the urologist in front of him what is his prognosis.  What should we expect?  Is this going to be a fight?  We currently think of it as a nuisance like high blood pressure.  I am starting to think we are naive.... though I believe our thoughts are extremely powerful and have the ability to create!
 
Your thoughts or insights would be helpful.
 
SeekingBliss
Husband Diagnosed:  September 2007
His Age: 61
       PSA: 20
Tumor: T2(b)
Radical Prostatectomy:  Oct 25, 2007
Gleason Score on pathology:  4 + 3 = 7
4 mo post op - Feb 13/08 PSA:  2.0
Starting hormone therapy:  March 2008
 


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1463
   Posted 2/17/2008 8:26 PM (GMT -7)   
Hey SeekingBliss,

Welcome to the forum and sorry for you reason for being here.

You have probably already the posts of some of the guys with advanced PCa. They will be able to help you understand things and will give you hope for your husbanc's future. In the meantime, if you click on the second thread from the top of the first page, you will find references to almost everything that has been said here. Look for threads that seem to talk about your topics of interest. You will find information and hope.

Please stay with us. We can all get well together...

Jim
Age 73. Diagnosed 11/03/06. PSA 7.05. Stage T2C Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Catheter out on 12/13/06.  Dry on 12/14/06.
Pathological stage: T2C N0 MX. Gleason 3+4.
PSAs from  1/3/07 - 1/17/08 0.00. 
Next PSA test on 7/17/08
"Patience is essential, attitude is everything."
 


SeekingBliss
New Member


Date Joined Feb 2008
Total Posts : 15
   Posted 2/17/2008 9:19 PM (GMT -7)   
Just a little further information.  I should add that when he had the surgery the surgeon notes that the tumor had advanced past the prostate wall and the seminal vessel also contained the tumor.
 
The fact his PSA was around 2 only 2 years ago and climbed to 20 so quickly and all of the other facts make it appear that this tumor was aggressive!  Good thing we found it when we did.
 
SeekingBliss
Husband Diagnosed:  September 2007
His Age: 61
       PSA: 20
Tumor: T2(b)
Radical Prostatectomy:  Oct 25, 2007
Gleason Score on pathology:  4 + 3 = 7
4 mo post op - Feb 13/08 PSA:  2.0
Starting hormone therapy:  March 2008
 


anniea
Regular Member


Date Joined May 2007
Total Posts : 234
   Posted 2/17/2008 10:43 PM (GMT -7)   

Hi SeekingBliss

Sorry for the reason you have to be here, but this is one of the best supports groups there is. I am glad you found us. I am sure the rest of the group will be along shortly to welcome you.

It is important to track your husbands PSA results and any other tests he has you can ask the Doctor for a copy of each report and keep them in a note book for future reference. You may want to type in prostrate cancer nomograms on your computer. There are a few of them and that will give you a better idea of what to expect. When my hubby was 1st dx and had surgery I took words off the pathology report and typed them in with prostrate cancer and was lead to a number of sites. Tony 1 of our members also did a wonderful post this past week that gave definitions of words used with prostrate cancer.

Good Luck to both of you and I hope you stay with us to help each other thru this.

Warm Wishes

Diana 


Rick & Diana
Age 68/ 67@ Dx
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
3-6-07 Triple Spinal Fusion (due to old back injury)
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
 9-26-2007 PSA 0.07
11/1/07 PSA 0.1
11/30/07 PSA 0.12
01/31/2008 PSA 0.3


Tim G
Veteran Member


Date Joined Jul 2006
Total Posts : 2249
   Posted 2/17/2008 10:50 PM (GMT -7)   
Welcome to the forum.  I'm glad that you found us. We have folks here who represent the gamut related to prostate cancer.   I am so sorry that you have gotten such difficult news, first the PCa diagnosis and second that it appears to have spread. 
 
I would suggest that you and your husband plan a consultation with your urologist to discuss the medical facts of your particular situation.
  
There are forum members whose prostate cancer has advanced beyond the prostate who will respond to you with information and help. 
 
The good folks who post here are very supportive, compassionate and knowledgeable. I hope you will continue to participate here because it is so much more difficult to face this disease alone.
 
Take care and hang in there...Tim

Age 59  PSA velocity quadrupled in 1 yr (0.6 to 2.6) 
1 of 12 biopsies positive (5%) 
Open surgery June 2006 
Cancer confined to one small area Gleason 5 
PSA's non-detectable


Cedar Chopper
Regular Member


Date Joined Mar 2007
Total Posts : 432
   Posted 2/17/2008 10:51 PM (GMT -7)   
Seeking Bliss,

Research agrees with you about being optimistic.  Despair doesn't help. 
Your actions since getting the "20" PSA have been purposeful
    and have not suggested to me any naivete...

Do continue your research.  On this site, I would start by looking at Ms. Bluebird's summary of TC-LasVegas threads posted just today.  Tony is an articluate, informed, and conscientious member that has had a radical prostatectomy and is on hormone treatments.
(Also check the Helpful Topics at the top of the page and scroll down to the fifth post for an index on topics such as E.D., Incontinence, metestasized P.C., HT, etc.)

You might add a little more information about the post-surgery biopsy in your signature to get more relevant responses.  I don't pretend to understand all that medical jargon they print on those reports, but many members here have excellent grasps of those reports.
For example, was there any indciation of lymph node involvement?

It might also help us help you  - if you let us know what part of the world you are in and where you had the procedure done and where you are getting post-op care.  
With this type of disease, second opinions concerning treatment options are the norm.

We, your new friends here, can encourage you. 
Many PC-patient-spouses here can give you excellent counsel, too.
   Those of us here know all too well that both
           the knowns and unknowns in this disease are scary.
    Never be afraid to cry (It helps sometimes.) 
       but don't linger in despair.
You have friends here.

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
OPEN R P 16FEB07 at age 54. 1+" tumor - touching inside edge of gland.  + Confined:)
Pad Free @ 14 weeks.  Six Month PSA <.003  :)   Nine month PSA <.008
:)
At 9 months, ED treated with Pump Exercises & 100mg Viagra Daily

Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8122
   Posted 2/18/2008 12:10 AM (GMT -7)   
Hi SeekingBliss,
My experience is very similar. My PSA was as stated below around 20. My seminals were involved and my surgeon was certain in short time I would relapse but I haven't. For me I was told by my medical oncologist the same about radiation. But my research still left me uncertain and some studies are popping up that show that this might not be the case. In fact, studies I have found show that by not only radiating the prostate bed, but the remaining lymph system around the prostate drain areas, I could in fact avoid or severely delay the onset of relapse. Well I am still debating that with my medical oncologist, but my radiation oncologist and I have already completed the task. I am doing well and am on hormone therapy, your husbands likely next step. If you want, tell your husband about me. Let him know that I had a decision path just like his and that I chose to carry on. I've done virtually everything except Taxotere chemotherapy to prevent this from returning and to this point it is working well. You can read my story on my blog below. If you have any questions feel free to contact me via email. Most importantly, stay positive, and live your lives as you always would. That was great medicine for me and still is. Aside from the medicine, I stay true to Faith, Love, and a lot of Hope. God Bless you and don't be dispaired. I didn't waste any time with dispair and I am glad!

Tony


Age 45 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007
Post-Op Pathology: Gleason 4+3=7, 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
Current PSA (1/08): <0.1
I will continue HT until May '09. 
 
Visit my Journey at:
 
STAY POSITIVE!

Post Edited (TC-LasVegas) : 2/18/2008 2:37:37 AM (GMT-7)


aus
Regular Member


Date Joined Sep 2006
Total Posts : 211
   Posted 2/18/2008 5:10 AM (GMT -7)   

I have two friends who are currently doing well on hormone therapy.

One is also relatively young, he's remained active and has implemented agressive lifestyle changes since being diagnosed with advanced PC in December 2006. His PSA has gone down to about 1, and  hot spots evident on his initial bone scans have not shown up on his recent tests.

I always urge people who are interested in  hormonal therapy to read the book " Beating Prostate Cancer: Hormonal Therapy & Diet" by Dr Charles Myers, as it can make a world of difference.

Dr Myers used radiation and hormone treatment for his own agressive PC some years ago , and he's one of the few true experts on Prostate Cancer.


mozart250
Regular Member


Date Joined Jan 2007
Total Posts : 102
   Posted 2/18/2008 7:34 AM (GMT -7)   
Hi Seeking Bliss:
It does look as though Tony (TLC Las Vegas) is a pretty good comparable to you.

I question the statement that radiation is not an option since Tony had radiation also. And from all accounts Tony is doing excellently with PSA < 0.1.
52 Year Old DBA by profession; amateur pianist by passion.
 
June 2006:  PSA 4.6.  DRE prostate enlarged.  
Aug  2006:  Second opinion confirms first.  Biopsy suggested.
Sep  2006:  Biopsy results positive one lobe.  Gleason 3+3.
Nov  2006:  RPA performed at Fletcher Allen in Burlington VT.
Nov  2006:  Pathology report: Stage T3a and Gleason 3+4.
Dec  2006:  PSA 0.1
Feb, May  2007:  PSA 0.0 (under 0.1)
Aug, Nov  2007:  PSA 0.1
 
Trying my hand at blogging.


jwb187
Regular Member


Date Joined Apr 2007
Total Posts : 101
   Posted 2/18/2008 8:20 AM (GMT -7)   
Hi Seeking Bliss,

Again I'll echo others, sorry you have to be here, but since you are, read, read and read some more. There is a world of knowledge here and individual case from all ends of the spectrum. I along with Tony have an advanced case that required aggressive treatment. I'm somewhat at a loss as to why your docs told you that radiation wasn't an option....I'd like to hear more about that and why they think that. Both mine and Tony's pc were aggressive, my gleason score a 9, and had escaped the capsule and invaded the seminal vesicle. We both had ADT and IMRT radiation and are both doing well at present with undectable psa scores. Don't despair, there is hope for a cure and if not that, ways to keep the pc in abatement for many years....good luck in your journey and visit the site often....jwb.
age: 62
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.
Start IMRT therapy on September 13, 2007.
September 26,2007 psa test .08
Finished IMRT therapy October 31!!!
January 17, 2008 psa test .05...


SeekingBliss
New Member


Date Joined Feb 2008
Total Posts : 15
   Posted 2/18/2008 8:48 AM (GMT -7)   
 
Thank you all for your kind welcome.  We are in Ontario, Canada for those who were wondering.  It is very encouraging to hear of positive results.  I guess my fear is that we have been so optimistic all along and we keep getting results that we never conceived.  I know that sometimes the cancer does not respond to hormone therapy and based on our experience so far, I think I am becoming anxious that this will be his experience.  I "dip" into these moments of despair, but mostly I am very optimistic and we keep living life with lots of laughter and lots of love!  It does bring you one step closer to the words in Tim McGraw's song, "I hope you get a chance to live life like you are dying"!  Of course, we are all dying, but this experience is enough of a jolt to make it a little more real!
 
The reasoning he gave for no radiation is because his first post-surgery PSA is already 2.0.  He feels this is indicative of the fact that the cells are not just in the prostate bed and thus the hormone therapy will treat the few cells that may be left there as well as the cells that have spread.  I will go armed with more information to the next appt. to inquire further.
 
To clarify, the few nodes he checked (and he did comment that he had only done a few and was not sure why) were negative.  (This is the only world where negative is positive!)
 
Thank you for the tip on the book as I wanted to look into dietary changes also.
 
You are any amazing group of people.  Thank you for your insights.
 
SeekingBliss
Husband Diagnosed:  September 2007
His Age: 61
       PSA: 20
Tumor: T2(b)
Radical Prostatectomy:  Oct 25, 2007
Gleason Score on pathology:  4 + 3 = 7
4 mo post op - Feb 13/08 PSA:  2.0
Starting hormone therapy:  March 2008
 


myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 2/18/2008 9:47 AM (GMT -7)   

Hello SeekingBliss and Welcome,

I'm currently out of town but check in while on the road...I saw your post and knew I had to  respond.  It seems your husband & mine have very similar stats. For brevity's sake here is our story: myman - Our Prostate Cancer Odyssey - PSA UPDATE

I never thought Don wouldn't be cured and so, the shock of a PSA of 11.8 post surgery was devastating.  But, we decided to move forward and do what is necessary to live a full life.  I want to encourage you that your husband can do quite well on Hormone Therapy, too.  Don has side effects but manages and is one of the busiest people I know! 

Please ask whatever questions you need to - the group here is wonderful and you will find much support.

I wish the best for you both and hold good thoughts for you,

Susan

 

 
 

Husband Diagnosed 11/17/05 Age: 63 PSA: 7.96 No Symptoms
2/09/06: LRP - Post Pathology - Gleason 4+3 Stage T2b NO MX
3 mo. PSA: 11.8 Stage T3a
6 mo. PSA: 18.8 Stage IV Systemic w/ distant lymph node involvement
Start HT - Lupron 3 mo. shots
12/06/06: PSA 0.8
03/07/07: PSA 0.3
06/06/07: PSA 0.1
09/05/07: PSA 0.1
11/27/07: PSA 0.1


IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 2/18/2008 2:31 PM (GMT -7)   

Hi ~  SeekingBliss & Loved Ones…

 

Welcome   to…   ~ HealingWell ~

 

and

 

A   Special   Warm Welcome  to  You !

 

Knowledge gives us POWER….  POWER takes away the fear.

 

~     ~     ~     ~     ~     ~     ~     ~     ~     ~     ~     ~     ~

 

Click on the link just below for important information that will help you ~ help us!!

 

Welcome New Members ~ to HealingWell

 

The information (link) listed above is to help you get started on your journey.

It is a journey best traveled with friends.

Welcome ~ New Friend from all the members here... on HealingWell.com

 

v      bluebird ~  Moderator for Prostate Cancer Forum

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

 

v      IdahoSurvivor ~  Moderator for Prostate Cancer Forum

http://farm2.static.flickr.com/1160/1313099593_9f819e3ff8.jpg


IdahoSurvivor
Veteran Member


Date Joined Aug 2007
Total Posts : 1015
   Posted 2/18/2008 2:33 PM (GMT -7)   

Hi SeekingBliss ~

 

We’re sorry for the reason you’re with us, but so glad to have you here.

 

Please feel comfortable to share as if you’ve always been here!  You have a little history with this disease already.  As you have seen, the more information you are able to share with us, the better your new friends on HealingWell can respond to you.

 

Take heart and know that we'll do the best we can to be your friend, listen to your thoughts and ideas, and at the same time offer a little free information.

 

Finally, a very warm welcome to you!

 

We will keep you close in our thoughts and prayers.

 

All the best,

 

Barry


"Idaho" ~ Barry

 

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

1st PSA  9/11/2007   <0.04 (undetectable)

2nd PSA 12/10/2007  <0.04

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


creed_three
Veteran Member


Date Joined Jan 2007
Total Posts : 762
   Posted 2/18/2008 7:15 PM (GMT -7)   
Hi SeekingBliss,

Having love and laughter in your life is an asset to beating this condition, but be kind to yourself and if those moments get low, just go with the flow... we all need to grieve.. it is part of the healing, regardless of the situation. I can't really add much else, except to say that for quite some time I refused to see this "condition" as a journey, and thought of it more like an "experience" (similar to your BP comparison). Now I see it as very much as a journey as it will always be with us, and I still think and pray about it every day. However we are like you, still optimistic, but on the other side of treatment for now, so easier to do, than when you are in the middle of decision-making, and still retrieving exact information to inform yourselves. Write down all your questions. In time you may need to consider prognosis if it is on your mind. I only did so once, and never discussed it with my husband as too distressed. My husband prefers not to know his long term "prognosis" but your situation is different. In time, you may be able to decide how to inform yourself or the info may be just given to you as you choose the way forward. Its a hard one. Our thoughts are with you. Take care, and as my father-in-law says.. "keep your sunny side up". It will help, but be gentle on yourself at the same time.
Creed_three (Lana & CJ)
 
Husband CJ aged 50 yrs (49 years at diagnosis and surgery)
PSA (2002) 2.1.  PSA (Nov 2006) 3.5.  1 x (5%) core of 12 positive at biopsy. 11 cores negative. Open Radical Prostatectomy with nerve sparing, on Tuesday 17th April 2007 (Sydney, Australia).
Gleeson 3 + 4 = 7.  Cancer confined. Margins all clear, including bladder neck and seminal vessicles. No incontinence (thankfully).
1st PSA 0.01 (June 07) 2nd PSA 0.02 (Oct 07) undetectable.
ED post-op recovery: Returned 8 months after surgery with Levitra 20mg as needed. Next PSA March 08.


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 3/4/2008 7:57 PM (GMT -7)   
Keeping you close in thoughts and prayers as you continue to move forward…

Stay close ~ okay!!

In Friendship ~ Lee & Buddy

 

Other threads by SeekingBliss

 02-21-08 Ugh.... I find this very frustrating and scary.....

New Topic Post Reply Printable Version
Forum Information
Currently it is Sunday, December 17, 2017 12:57 AM (GMT -7)
There are a total of 2,906,380 posts in 318,949 threads.
View Active Threads


Who's Online
This forum has 158286 registered members. Please welcome our newest member, iiss99.
195 Guest(s), 2 Registered Member(s) are currently online.  Details
The Dude Abides, Girlie