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TracyMarie
New Member


Date Joined Jan 2009
Total Posts : 3
   Posted 1/7/2009 12:53 AM (GMT -6)   
First of all I would like to say thank you for this site ... reading the posts have brought both tears and encouragement.  My amazing husband had a radical prostatectomy January 25th, 2008.
 
I have felt very alone for the past year, and I know that this is really not about me, I am so very greatful that surgery went well and I have my husband, and in many ways it has brought into sharp focus how precious life is, and then there is an other side of me that is so angry at all that this horrible disease has taken from us - and I feel bad for being angry.  There seems to be a complete lack of understanding out there about prostate cancer... friends who I have reached out to, seem to be under the impression that if you are going to get cancer, then prostate cancer is a "good" type to get - no big deal.  I get so angry when people tell me that "more men die with it then of it"
 
I live in a fairly small town in Canada - I am 38 years old, and my husband and I have two very young children, there is not much of a support network here for this...
 
Just wondering if there is anyone here going through a simular situation?
Is the anger normal?
Husband dx September 2007
Radical Prostatectomy January 25th, 2008


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 1/7/2009 1:19 AM (GMT -6)   
Hi TracyMarie,
It is quite normal. When I hear that this disease is the good one, however, I turn the other cheek and tel them about what it takes away from us. I have no shame or embarassment about it either. A simple reminder that this week alone 550 men will die from this disease in the US alone. That many survivors are flipped upside down and their lives never return to pretreatment health. And I ask is that a good thing? But my goal isn't to show them up, but rather educate them about the disease. There is no good cancer.

Welcome to the finest site on the web for caring and compassionate support. The members here are wonderful. And let this place remind you that you are not alone at all. If you get a chance, update us in your signature lines about your husband's age, his surgical stage, and anything else you feel pertinant. The group will be able to help. And try to turn that anger into positive actions. In your post, I see two very young reasons why you should.

Peace,

Tony
Age 46 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007 @ The City of Hope
Post-Op Pathology: Gleason 4+3=7, positive margins, Extra Prostatic Extension (EPE)
Bilateral seminal vesicle invasion (SVI); Stage pT3b, N0, Mx
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (September 17 '08): <0.1 ~ Undetectable!
 
You can visit my Journey at:
 
STAY POSITIVE!
 
 


Sam Benton
Regular Member


Date Joined Dec 2008
Total Posts : 35
   Posted 1/7/2009 3:54 AM (GMT -6)   
Hi,
I have heard the "best kind ofcancer to have" theory over and over and it feels like it mimimizes what we are going through. I find that many people don't know what to say so they grap the "best kind of cancer to have" statement trying to be supportive. It's O.K. to get angry, I think it's a healthy way to deal with it, because your right, it has taken away some quality of our lives. I had my surgery on Nov 3rd, 2008 so I am new to this site but I can tell you it has provided me with support and answers.

Sam

Gleason 3+3=6
DaVinci on Nov 3, 2008
Prostate & Lymph node removal
Organ contained
First PSA .04
Still have some leakage issues
Still have ED

Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 1/7/2009 7:25 AM (GMT -6)   
With only 7 chapters in Canada, the chances of your being within range of one are kind of small, but you might call the number shown on the page to see if there are others, not listed:

http://www.ustoo.org/chapter_nearyou.asp

-Les
1/2005 Dx PSA 26.5 Gleason 7 (4+3) @Age 61
1/2005 Start Casodex and Zoladex
PSA drops to <0.01
7/2005-8/2005 5 weeks of IMRT and then HDR brachy
1/2007 Rad Oncologist orders CT scan of pelvis
because of complaints of pain in both thighs
MRI confirms pain not caused by cancer BUT
1/2007 CT scan of pelvis picks up a nodule at bottom of left lung
5/2007 CT scan of lungs shows 1/2007 nodule has grown and
there are numerous nodules on both lungs.
6/2007 Thoracic surgeon removes wedge of left lung for biopsy
6/2007 Path report says 95% chance of metastatic PCa, but she's
never seen cells like this before.
8/2007 2nd opinion at M.D. Anderson in Houston.
They confirm: mutated PCa, very rare, but seen there 2 or
3 times. Recommendation: have CT scans every 6 weeks
and watch for change. At that point start chemo and will
survive for 22 - 24 months thereafter.
PSA still undetectable, but get Lupron shot to bring T down from 27
2/2008 Trip to Houston – PSA now 0.5 and nodules larger. Lupron shot.
6/2008 Trip to Houston - Finally got results from doc. A number of lung nodules have grown, but, more important to him, is the fact that the malignant lesion on my pelvis seems to have flared up and he wants me to start chemo. He said I could wait a few months, but I told him I want to start now. He to get me signed up for a clinical trial in nearby NY.
9/2008 Interim bone and CT scans show progress vs. scans done before beginning trial. I'm cautiously optimistic. Next scans 10/30/08.
10/2008Bone and CT scans continue to show improvement. Med onc attributes mostly to Taxotere/Prednisone while I believe majority of progress attributable to investigational drug, Sprycel.
12/2008 Latest scans show no change. Bah Humbug!


LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 1/7/2009 7:59 AM (GMT -6)   
Welcome Tracy to this forum...I think that everyone here has and is going through exactly what you are feeling. As Tony said...put that anger towards the healing side of this disease. It has taken much of what was a normal part of your life and absolutely turned it upside down. You now have a New normal for a life style...and it is one that isn't easily accepted...afterall you didn't ask for it or wanted it. Find those things in life that are positive and you have two of them right there with you. One thing for sure...this forum will give you and yours hope and encouragement, I know that it has for our family.

Take care.
Les
 
Age 58 at Diagnosis
Oct 2006 - PSA 2.6 - DRE Normal
May 2008 - PSA 4.6 - DRE Normal / TRUS normal-Gland 38 cc
July 2008 - Biopsy 4 of 12 Positive 5 - 30% Involved Bilateral (Perineural Invasion present at base)
Gleason (3+3) 6  Stage T1C
August 23 - Bone Scan - Hips, Spine and ribs marked uptake - X-Ray showed clear -Hooray
Sept 9 2nd DRE - questionable - TRUS...shadow in base - Gland now 41 cc
Robotic Surgery Sept 18, 2008
Pathology October 1,2008
Gleason 7 (4+3) Staged pT2c NO MX
Gland 50 cc
Seminal Vesicles and Lymph Nodes clear
Positive Margins Right Posterior Lobe
4 tumors in prostate - largest being 6 cm 
PSA Oct 08 <.05


Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 1/7/2009 8:09 AM (GMT -6)   
And keep in mind, Tracy, that I was the first "Les" here.

-Les
1/2005 Dx PSA 26.5 Gleason 7 (4+3) @Age 61
1/2005 Start Casodex and Zoladex
PSA drops to <0.01
7/2005-8/2005 5 weeks of IMRT and then HDR brachy
1/2007 Rad Oncologist orders CT scan of pelvis
because of complaints of pain in both thighs
MRI confirms pain not caused by cancer BUT
1/2007 CT scan of pelvis picks up a nodule at bottom of left lung
5/2007 CT scan of lungs shows 1/2007 nodule has grown and
there are numerous nodules on both lungs.
6/2007 Thoracic surgeon removes wedge of left lung for biopsy
6/2007 Path report says 95% chance of metastatic PCa, but she's
never seen cells like this before.
8/2007 2nd opinion at M.D. Anderson in Houston.
They confirm: mutated PCa, very rare, but seen there 2 or
3 times. Recommendation: have CT scans every 6 weeks
and watch for change. At that point start chemo and will
survive for 22 - 24 months thereafter.
PSA still undetectable, but get Lupron shot to bring T down from 27
2/2008 Trip to Houston – PSA now 0.5 and nodules larger. Lupron shot.
6/2008 Trip to Houston - Finally got results from doc. A number of lung nodules have grown, but, more important to him, is the fact that the malignant lesion on my pelvis seems to have flared up and he wants me to start chemo. He said I could wait a few months, but I told him I want to start now. He to get me signed up for a clinical trial in nearby NY.
9/2008 Interim bone and CT scans show progress vs. scans done before beginning trial. I'm cautiously optimistic. Next scans 10/30/08.
10/2008Bone and CT scans continue to show improvement. Med onc attributes mostly to Taxotere/Prednisone while I believe majority of progress attributable to investigational drug, Sprycel.
12/2008 Latest scans show no change. Bah Humbug!


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25364
   Posted 1/7/2009 8:30 AM (GMT -6)   
Hello and welcome, Tracymarie:
You are most welcomed here. If you want sincere and quality support, this is the best on the net. The feelings you expressed are most normal, and the men here suffering from PC directly and their wives and families, go through the same processes of emotions. I hope you find real comfort here. Feel free to say your opinions, your theories, your anger, vent if you need too, nothing you could say would suprise this group here, because one way or the other, one person or the other, has felt what you are feeling, but we are tied together with a root cause of Prostate Cancer and it's far reaching affects and side affects. I always have a good laugh at the term "Good Cancer". This is my 4th bout with cancer since age 45, as for me, there's been nothing good about any of them. My current bout with PC has had one silver lining, it made my wife and I look at our lives, our children, grandchildren in a whole new light, and helped us decided whas was really important in life. When you are faced fighting PC, a whole lot of other things in life really aren't that important anymore. I hope you stay and get a lot out this place, it is truly the best.

David in SC
Age 56, 56 at DX
PSA 7/7 5.8, 7/8 12.3, 9/8 14.9, 10/8 16.4
3rd Biopsy 9-2008 Positive 7 of 7 cores positive, ranging from 40 - 90%, G 4+3 & 3+4
Open RP surgery  November 14, 2008 at St. Francis Hospital, Greenville, SC, Dr. Ronald Smith - Surgeon, Non-nerve sparing, 4 days in hospital, staples removed 11/24/8, Catheter out on 12/15/8 on day 32.  Day 33, urine stopped flowing, new catheter put in 12/16/08, Catheter out 12/29/08.  After 7 hours, complete stoppage again, emergency room put in Catheter #3 early evening of day 45, still 12/29/08. 1/5/9 - Cath #3 out, dr. did cycloscope, saw potential blockage, put in Catheter #4, further tests/treatments 1/9/8.
Post-surgery Pathlogy Report:
Gleason 3+4=7, pT2c pN0 pMx, Prostate 42 grams, tumor 20% cancer
Contained in capsular, neg. margins apex, bladder neck, right lobe, neg. in seminal vessels and lymph nodes.
First PSA Post Surgery  Scheduled now for 2/9/9
 
 


Todd1963
Veteran Member


Date Joined Oct 2008
Total Posts : 3208
   Posted 1/7/2009 9:22 AM (GMT -6)   
Good morning tracy marie
I hope you are able to find a little comfort and peace here. I use to be like most other persons. Nieve. When my grandfather got Pca I said no big deal its only Pca. Whodathunkit. Me 42 years old with stage 4 Pca. You will find that the people here are more than willing to help you and your husband any way they can. God bless you and your husband. Todd
dx:06/03/06
Age at dx: 42 age now 45
Treated for sciatic nerve pain 6 months prior to dx.
Heavy amount of blood in urine Unable to urinate 
Lung x-ray for pnumonia revealed multiple lesions in each lung
P.S.A. at time of dx. 3216.14
Began lupron and casodex
Cat scan showed large mass in the pelvic area affecting the bladder multiple nodules in both lungs and lymph node envolvement.
Bone scan revealed possible bone involvment in the pelvic area
Biopsy 12 of 12 cores positive gleason 3+4=7
P.S.A.s since lupron 2946, 1274, 532, 5.01 1.23, .09
Begining jan 08 psa .o9, .25, .44, .86, .73, 1.34, 1.49. Doubling time is a little over 3 months
Cat Scan 12/12/08 Prostate normal size and shape. No tumors detected. Left lung clear of all nodules right lung showing only benign scar tissue. Lymph nodes normal
Bone Scan 12/24/08. Clean!!!


JustJulie
Regular Member


Date Joined Mar 2006
Total Posts : 355
   Posted 1/7/2009 10:30 AM (GMT -6)   
Tracy Marie:
 
What town are you in?  We're in a fairly small Canadian town too but these boards have been a God send for me - I've garnered a ton of support from people here and I hope you are able to reap the same rewards I have.
 
It seems that there is not much support on the Canadian side of the border but it is out there if you look for it - it may not necessarily be a prostate cancer support group but a general cancer support group that may help to walk you through the emotions - and there are there are TONS of them - fear, anger, pity - we've all been through them but we're all still here supporting each other.  This group is a unique, eclectic group of individuals; all respectful of each others opinions and feelings so I certainly hope you feel comfortable here - I would be lost without these wonderful people - you are not alone.
 
JustJulie
Husband diagnosed in December 2005
PSA of 3.74
Gleason 6
Brachytherapy (91 stranded seeds) April 2006
PSA of 0.39 - November 2008 - whoo hooo!
 


carver
Regular Member


Date Joined Jan 2009
Total Posts : 27
   Posted 1/7/2009 10:48 AM (GMT -6)   
It has been 13 years since my RP. Recurrent at 0.5. Living, enjoying, and appreciating each day as it comes and not dwelling on the PC, is the way we got through the past 13 years. Yes we would worry just prior to each PSA test but the rest of the time we would not give in the the PC beast by thinking about it! We try to live life as normal as possible. Unfortunately another PC beast showed up! PC (pancreatic cancer) in my wife 6 months ago!  We still appreciate and enjoy each day as it comes - we are not giving in to the extremely nasty PC beast either!

Dave7
Regular Member


Date Joined Jul 2006
Total Posts : 201
   Posted 1/7/2009 2:45 PM (GMT -6)   
Hi TracyMarie,
 
As I'm sure you know from reading here, the experiences of the guys post-surgery is a bit vast.
 
Based upon what you say in your post, it sounds like your husband is experiencing some of the negative side effects of surgery.  If you would be willing to share some specifics about your husbands current status, I know the members here would be glad to give you some specific input that may be helpful.
 
I don't know that I have ever been angry about having this thing.  Disbelief was certainly there as I never had any symptoms of anything.  But again, the experiences are so varied, I may have avoided anger as the disbelief carried me through surgery and then things gradually returned to a new normal post-surgery. 
 
Dave
Age:54
PSA 5/22/06: 5.6
DaVinci surgery: 9/14/06
Gleason: 3+3
Organ confined, clean margins.
Both nerve bundles spared.


divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 1/7/2009 5:35 PM (GMT -6)   
Dearest Tracy, I have a daughter your age, and you should not have to be dealing with this, but you ARE.....And you found this site which shows us that you are strong and in charge of your life. I believe that in marriage two people are like a team of horses....We both pull, but when one is a little tired, the other makes up for it....That is what you are doing now. You have two little children that want a happy cheerful mom, and a husband that NEEDS that....You can do it.....You go girl!! Come back and tell us how you are doing..... xxxDi
Husband Pete
dx Jan 2001 gleason 4 + 3 PSA 16.5
Seed implant and conformal radiation and Lupron from Jan 2001 to Jan2002
2005 Dec PSA began to rise from .5 to 8 within 6 months
Salvage surgery at MSK 9/06 Dr. Eastham
Fistula operation 2/07 MSK Dr. Wong
Many cystoscopies and ER visits with strictures
Catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/08
AUS Operation at MSK Sept 8 2008 Dr. Sandhu
Activated Oct 28th Dr. Sandhu..MSK
Some difficulty with AUS arising Nov 10 2008
Meeting with Dr. Sandhu to discuss AUS problems and new PSA test Dec 11, 2008
PSA .6 12/08
Waiting to see if AUS gets better results
Complete hip replacement surgery coming up Jan 9, 2009


curious 2
New Member


Date Joined Jan 2009
Total Posts : 1
   Posted 1/7/2009 5:44 PM (GMT -6)   

Hi, everyone,

 

New to this site and would really appreciate feedback on prostate cancer.

Here is the facts.

My father is 75 years old, he was diagnozed with pre- & canerous cells of the prostate 3 years prior.

received radiation therapy for 6 months as well as the hormone estrogen.

Progress was made, clear for 3 years.?? and changed provinces.

Annual checks were not done.

Prostate is now Grossly inflammed and the Biopsy has been done.

Symptoms:

Extreme gaurding of the lower abdomin, back pain, No fever, excessive urges to void.

Frequent urination and prolonged.

Persuaded him to go to Emergency and scan his lower abdomin as well as run the blood tests.
In which they ran the most  basic tests.
 
What other tests shoud he be looking to get done?
He currentlly can not void on his own and wears bag to release the urine.
 
Tests are pending on the Biopspy.? Should this not be done A.S.A.P. with his current history?
 
Could you please inform me of what I can do to help him and what other tests should be run to help him through this challenge.
 
I would like to be able to escalate the proper leve of care needed to stablize this situation.
 
Greatly appreciated.
 
Curious 2

livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 1/7/2009 7:15 PM (GMT -6)   
Tracy welcome to HW. You said in your post that this isn't about you well I say it is about you. You my friend are reaching out and guess what? We are reaching back. I to get a little put off by folks that think this is the good cancer. For me and for you I can't seem to find much good other than the blessings of meeting fine people here on HW. I think the more you interact with us and realize how much we love and care about our people hopefully the anger will subside.
I am not the smartest when it comes to cancer advice, but I can sure help with spiritual or emotional support. Write me anytime if you feel the need to talk.

peace and love
Dale
My PSA at diagnosis was 16.3
age 46 (current)
My gleason score from prostate was 4+5=9 and from the lymph nodes was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11
PSA July 24th, 2008 is 0.04
PSA Dec 16th, 2008 is .06
Testosterone keeps rising, the current number is 156, up from 57 in May
cancer in 4 of 6 cores
92%
80%
37%
28%
 


Ralph Alfalfa
Regular Member


Date Joined Nov 2008
Total Posts : 469
   Posted 1/7/2009 7:42 PM (GMT -6)   
Hi, Tracy.
Well, as you've read, this is the best place on the net for information as so many of us, have, and are, going through the rigors of this terrible malady. There are many well-informed folks here that can give you all the answers and support you need. Angry? You betcha. Going to roll over and take it? No way. This fight is one of the toughest you and your husband will go through. But it is winnable. Qestions? Ask away and we will do all we can to help.
Bob
 AGE:57
 Dx: October,27(the day after my birthday)
 Psa 14.5
 Gleason:(4+3) 7 T1c
 Bone scan:Negative
 Cat scan: Negative
 Biopsy: 4 of 12 positive, left side, pre-cancerous on the right.
 Confined to prostate.
 DaVinci scheduled for Jan. 19, 2009.Dr. Scott Montgomery, KC Urology,
Shawnee Mission Med. Center. Kansas


TracyMarie
New Member


Date Joined Jan 2009
Total Posts : 3
   Posted 1/8/2009 1:02 AM (GMT -6)   

I really am at a loss for words....

I don't know how to express how much the responses to my post mean to me.... thank-you all from the bottom of my heart!  I don't remember the last time I have cried and smiled so much at the same time!  Your words of encouragement and complete understanding mean more to me than I can ever express ....  I completely understand why you all say that this is the best place on the net .... it has been more than I ever expected.  I have been searching the internet for over a year now... and came upon a link to this site on Facebook.

When my husband was first diagnosed I think we both went into shock and disbelief ... my husband went for regular yearly checkups... his psa was always low, always on the low side of normal.... he had no symptoms at all....our family doctor found his cancer during  his rectal exam ... psa completely normal, but the doctor could feel something.  Went for a biopsy - cancer confirmed.  Gleason grade 3+4 with some perineural invasion.  We then spent countless nights researching and reading anything and everything we could get our hands on.  For us the decision was open surgery. (I then began feeding him stewed tomatoes and green tea day and night :-) )  Life then was consumed with waiting for surgery... then it was consumed with taking care of him after surgery.  It is difficult learning to live life not from test to test, but rather day to day.  The reality of what this disease takes away did not hit us until he was back on his feet again... there is nothing "good" about this desease...

Thank-you again, with all my heart ... for your replies and support!  You have reached out and touched my life, a stranger, in such a possitive way!

 


Husband dx September 2007
Radical Prostatectomy January 25th, 2008


yankee girl
Regular Member


Date Joined Nov 2008
Total Posts : 125
   Posted 1/8/2009 9:46 AM (GMT -6)   
Hi TracyMarie,

As you can see by the responses to your topic, this is a great source of encouragment and information.

My husband and I have developed such an intense, intimate wonderful closeness since his surgery 2 1/2 years ago. We didn't feel angry when diagnosed, it was more disbelief and shock during the entire process of diagnosis, treatment and recovery.

Life goes on, you know?

If you have any questions, I'm sure anyone here will be more than happy to help. There are many wives/girlfriends/female family members here if you would like a viewpoint from our side.

Take care.
Natalie
fibro, PTSD, anxiety, severe nerve damage/several surgeries on wrist, TMJ, depression, mitral valve prolapse


divo
Veteran Member


Date Joined Jul 2008
Total Posts : 637
   Posted 1/9/2009 6:17 PM (GMT -6)   
Yes, Tracey ,
there are lots of women that post here...Women that love their husbands or fathers... Women do need to become more proactive in prostate cancer...that will make it much more active on the the radar screen..... Men need to hear how other women feel about their husband's prostate cancer journey.....it can make things easier to talk about to their own wives...If they know that women also understand what their men are going through, it can only help. We are all in this life together. . You are a brave young woman and you will overcome all odds....Diane
Husband Pete
dx Jan 2001 gleason 4 + 3 PSA 16.5
Seed implant and conformal radiation and Lupron from Jan 2001 to Jan2002
2005 Dec PSA began to rise from .5 to 8 within 6 months
Salvage surgery at MSK 9/06 Dr. Eastham
Fistula operation 2/07 MSK Dr. Wong
Many cystoscopies and ER visits with strictures
Catheter for one year....Catheter taken out Sept 07..
Total Incontinence since then....
PSA .52 3/08
AUS Operation at MSK Sept 8 2008 Dr. Sandhu
Activated Oct 28th Dr. Sandhu..MSK
Some difficulty with AUS arising Nov 10 2008
Meeting with Dr. Sandhu to discuss AUS problems and new PSA test Dec 11, 2008
PSA .6 12/08
Waiting to see if AUS gets better results
Complete hip replacement surgery coming up Jan 9, 2009


livinadream
Veteran Member


Date Joined Apr 2008
Total Posts : 1382
   Posted 1/9/2009 7:00 PM (GMT -6)   
Reading threads like this one make you know that being a part of HW is a wonderful thing. I was thinking this morning about the song "Surely the Presence of the Lord is in this Place" and I know for a fact the Lord is with us.

peace and grace
Dale
My PSA at diagnosis was 16.3
age 46 (current)
My gleason score from prostate was 4+5=9 and from the lymph nodes was 4+4=8
I had 44 IMRT's
Casodex
Currently on Lupron
I go to The Cancer Treatment Center of America
Married with two kids
latest PSA 5-27-08 0.11
PSA July 24th, 2008 is 0.04
PSA Dec 16th, 2008 is .06
Testosterone keeps rising, the current number is 156, up from 57 in May
cancer in 4 of 6 cores
92%
80%
37%
28%
 

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