Husband's Advanced Prostate Cancer

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belindafeathers
Regular Member


Date Joined Aug 2006
Total Posts : 21
   Posted 1/11/2008 12:22 PM (GMT -7)   
I am new to this site because this is the first time I have been able to find it.  This is the story:  I had breast cancer in 2006/2007 finished treatments.  A month later my husband was diagnosed with advanced prostate cancer.  I am still not over the affects of my situation and we have this to deal with.  He had no symptoms.  It has spread to his lymph nodes and bones and he has pain in his groin area and rib area.  I was fortunate enough to find someone to "talk" to when I had the breast cancer, now I would like to find someone to discuss my husband's situation with.  If there is someone out there who either has a husband in this situation or is in this situation himself, please respond.  I don't even know what questions to ask the doctor and my husband is not a very talkative person.  By the way, he is young, 54, and the doctor said he probably had a tumor 15 to 20 years--PSA was 45.  I look for anyone who can help me through this.  I realize men just don't talk and if there is either a male or a wife of someone going through this, please, please respond. 
Sandy


bluebird
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Date Joined May 2006
Total Posts : 2542
   Posted 1/11/2008 1:22 PM (GMT -7)   

Hi ~ Sandy ,

 

Welcome   to…   ~ HealingWell ~

 

and

 

A   Special   Warm Welcome  to  You !

 

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The information (link) listed above is to help you get around the forum! 

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bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 1/11/2008 1:30 PM (GMT -7)   

  tongue Hi Sandy,

 

You have truly come to the right place.  We welcome you with open arms…  The strength you will find here ~ will definitely help you and your loved ones through the “rough” times…  Being able to talk, write, vent, share….  This is one of the greatest gifts this forum allows us.

 

Please ~ continue to post and continue reaching out as we all hold you close.  It truly is important to stay close and pull from all of us ~ the extra strength that we send to you in warm thoughts and prayers.

 

You will find many threads with personal journeys and personal links to their journeys also.  Please take time to click on the link above in your Welcome ~ to help you get started!

 

We are keeping you tucked close to our hearts as you find the stepping-stones to be slippery….at this time.... Let all of us help to shore up the stones… in the personal way we each have of sharing.

 

In 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 :)


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8122
   Posted 1/11/2008 1:33 PM (GMT -7)   
Sandy,
You came to the right place. You will find wives and daughters here to share what you are feeling. You will also find people with advanced prostate cancer. There are many here who have travelled this road and have done well. I am one of them with advanced PCa. You may also notice that this site has a breast cancer forum as well. I cannot express the support and encouragement that I found here so you will have to see it for your self. Welcome to Healingwell. I am very sorry you have to be here. I am a religous man, and will extend prayers to you and your husband. And dang, I have seen enough cancer this last year too. The biggest thing that you have to do is STAY POSITIVE! It's my mantra and the last line of my signature so that whenever I post it is expressed for all to see. God Bless you and your husband. Stay close and you will see the friends here be there when you need them.

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.
 
Visit my journey at:
 
STAY POSITIVE!


FLHW(David E)
Regular Member


Date Joined Nov 2007
Total Posts : 201
   Posted 1/11/2008 1:56 PM (GMT -7)   
Sandy - let me know what questions you have? What treatment is he on? Are you seeing a medical oncologist?
Dx'd 2/18/05
PSA 219, bone mets, lymph node involvement
Gleason Score: 7
Current (12-31-07)
PSA: 30
Lupron, Keto_Hydrocortizone, Avodart

Personal Blog:
prostatecancerat42.blogspot.com


belindafeathers
Regular Member


Date Joined Aug 2006
Total Posts : 21
   Posted 1/11/2008 2:27 PM (GMT -7)   
Thank you all for your support.  When I had the breast cancer I did go on the website and found someone who was going through the exact same thing as me.  It really did help.  The problem here is that I don't even know what I need to know about prostate cancer!  My husband's PSA has dropped to 1.0 at this time.  He is on Casodex every day and Lupron every three months.  He gets that Zebeda(?) once a month.  The problem is that the oncologist said his pain should go away and it still hasn't.  Does it take awhile?  Sometimes he cannot even walk for a long period of time because he gets sick to his stomach.  I have no clue what to ask the doctor because the doctor said all of these symptoms should go away.  Will they?  He also takes MSCoton (?) and Vicodin for pain.  His personality has also changed.  I am just frustrated.  It was easier when I was going through treatment (but I knew there would be an end to my treatments). I am really at a loss.   S. 

Sandy


FLHW(David E)
Regular Member


Date Joined Nov 2007
Total Posts : 201
   Posted 1/11/2008 2:40 PM (GMT -7)   
His personality change could be from the pain killers. Oxycoton is pretty strong and very addictive. I looked back through your posts but could not find out when this all started? My pain went away within a few days.
He might have to consider some radiation treatments to deal with specific pain.
Dx'd 2/18/05
PSA 219, bone mets, lymph node involvement
Gleason Score: 7
Current (12-31-07)
PSA: 30
Lupron, Keto_Hydrocortizone, Avodart

Personal Blog:
prostatecancerat42.blogspot.com


Missyj
Regular Member


Date Joined Sep 2007
Total Posts : 87
   Posted 1/12/2008 6:26 AM (GMT -7)   

Hi Sandy

I am sorry you are going through so much at the moment, it seems terribly unfair that you have been 'hit' twice like that.

My husband is in a similar situation as yours, he also had bone mets and soft tissue involvement at diagnosis. I am not 100% sure but as I understood it, a PSA of the value your husband now has should mean that the bone tumours have shrunk.

You mentioned some medicine that I haven't heard of (I am in the UK so it might come under a different name over here) are any of them for strengthening the bones? Is it possible he might have suffered a small fracture before starting treatment? Maybe the doctors would do a bone scan to see what is going on

Whatever, you need to get to see someone pretty soon. The radiation suggestion is a good one, we have been told it really does help with specific areas of pain

Wishing you both all the best

Julia


Age - 59
Dianosed - July 07
Gleason 8 (4+4)
PSA - 17
Bone Scan - August 07 revealed mets to spine, neck, rib, shoulder and pelvis
MRI - August 07 revealed seminal vesicle involvement
Treatment - Zolodex started on August 10th
First PSA test November 7th - 2.3
 


DesertGal
Regular Member


Date Joined Dec 2007
Total Posts : 65
   Posted 1/12/2008 10:32 AM (GMT -7)   

Hi Sandy,

I was so touched by your posting, I'm sorry that you and your husband have so much on your plate right now. It's good you found this forum because I know you will find comfort and support with this group as we and many others have and continue to do so.  There is strength in numbers and I'm certain there are others here that can totally relate to your husbands situation.  So you've come to the right place to not only gain knowledge but support, prayers and hugs.  All important ingredients, and to know that you are not alone!

Marie 


Husband 55 years old
No symptoms
PSA taken on routine health exam
06/18/07  PSA 9.2
07/14/07  Put on antibiotics for a month
09/18/07  PSA 8.77
09/18/07  PSA % Free  9.61
10/17/07  Biopsy =  Gleason 3 + 4  (7)
10/17/07  Biopsy 40% Right Side less than 5% Left Side
12/31/07  D Day!  Davinci Surgery Day - Jon Huntsman Cancer Institute
12/31/07  Left side nerves spared, Right side partial, right nodes taken
01/03/08  Home from the hospital! Let the healing begin!
01/11/08  Cath removed, post-op gleason 3 + 3 = 6, nodes clear
              margins - capsular invasion but no penetration.


Gordy
Veteran Member


Date Joined Jun 2005
Total Posts : 528
   Posted 1/12/2008 11:23 AM (GMT -7)   
Sandy-

First thing to do is, if you don't already have one or more, get a book or books on PCa. Those by Scardino or Walsh or Stephen Strum are particularly good. Strum is great for explaining ADT, which is the therapy your husband is on with the Casodex and Lupron. They stop the body from producing testosterone which is what feeds the tumors. One of the side effects, and there are many, is osteoporosis. I believe what you called "Zebeda" is actually Zometa which is a heavy duty bone strengthener to help prevent the osteoporosis and also will help against the bone mets.

Read, read, read books and make Google your best friend. And ask questions here and of the docs.

And try to keep a stiff upper lip (whatever that means).

-Les
1/2005 Dx PSA 26.5 Gleason 7 (4+3) @Age 61
1/2005 Start Casodex and Zoladex
PSA drops to <0.01 AND REMAINS THERE TO THIS DAY
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.
7/2007 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


myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 1/12/2008 1:23 PM (GMT -7)   
Hi Sandy and Welcome,
You've received great advice from Les - it seems overwhelming but the research does help. You'll learn the terminology and be better able to understand what's going on with your husband. I'm "the wife" and I certainly understand what you're going through, there are many of us here. My husband doesn't post but I started out by telling him about this site and the more I told him the more interested he became. Now he asks what's going on at Healing Well and it's been tremendously helpful to us both.

FLHW asked if your husband is seeing a medical oncologist and has radiation been suggested for the bone pain...? The more we know the better able someone could answer your questions or direct you somewhere for answers.

You & your husband have been through so much and we'd like to help, even if it's just to listen. Please continue to post here, Belinda.

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


net
New Member


Date Joined Sep 2007
Total Posts : 16
   Posted 1/13/2008 4:32 PM (GMT -7)   

Dear Sandy,

You are definitely in the right  place here where you will get more information and support than you could imagine.  I am fairly new here, my husand Brice has advanced Pca and post lung cancer this past year and a friend at church advised me of the forum and these people have it 'together'. 

Please know that we are praying for you and your husband and my best advice to you would be if are not happy with your urologist/ get a second opinion.  Get copies of every test result, make folders by specialty and take to every visit, in hopes that any treatment will not have to be delayed while waiting on test results that have already been performed.  Take someone else with you to the doctor visits that can help you remember what has been said (I was so numb at our 'discovery' visit, didn't remember anything the dr. said, except, it is too late for surgery and we will try every other treatment available and start it today.

The next visit to onocologist, I took our son and best friend, just in case the news got  'better'.

try to make a list of questions before you go to the doctor and by all means.....ask the "Pros' here as they have been there, done that and "KNOW" what we are going through.

God Bless you both,

Faith


Faith
Husband - Brice
dx 8/29/07 Gleason 4+5=9 up to 90% of core bx (8)
tumor has unusual immunophenotype & features suggestive of
ductal (enodmetrioid) differentiation (???) per path report
Stage IV adenocarcinoma
urethral polyp
PSA 2.5 (never elevated)
Started Lupron & Casodex
Flomax 0.4 twice daily
2nd bone scan 10-15-07 Slight increased uptake is 5th & 6th rib not shown on 5/07 scan
rec. CXR which revealed "no apparent" CA
12/5/07 Bracytherapy & repeat cysto
IMRT sched for Feb 08 - 5 weeks daily
Dx with lung Ca 2/14/07/ Carcinoid tumor/ upper left lobe removed 3/25/07
Jax., FL
 


belindafeathers
Regular Member


Date Joined Aug 2006
Total Posts : 21
   Posted 1/14/2008 11:53 AM (GMT -7)   
Thank you all so very much - I knew what to ask when I was diagnosed with the ca, but with my husband, I didn't even know where to begin.  I have no idea what the Gleason is, so I will ask that next time I go.  I do know about the PSA and my husband's was 45 in April 2007.  He has been on the Lupron (every 3 months) and Casodex and Zemeta (thank you for the sp).  His PSA has fallen to under 1.  He had a biopsy on a lymph node in his neck and also on the prostate.  Other than that, there was no surgery.  (Too late I guess.)  He has had all tests done and showed PCa in lymph nodes and bones, no organs involved yet.  He had no symptoms either except that he fell one day and the pain in his leg would not go away.  That is how it was found.  He is very quiet about things, and I am not even very sure how he feels.  I have asked if he is depressed, and he says no, but I do wonder.  I have to ask him all the time if he hurts.  He has trouble standing for any length of time as his stomach hurts.  Also, he has had trouble walking for any length of time.  He has to sit and rest.  It seems that most of you (or husband's) don't have this pain.  That is what I am questioning.  The oncologist said it should go away--but when?  This has been since April 2007 and he still has the pain.  I am thinking maybe we should look into radiation, but I hate to start that too soon.  Won't it make his resistant and more sensitive to the radiation if he has to have it later on? 
Thanks again for the wonderful advice from all of you.  I do need this, even if my husband thinks he doesn't.  Sandy
Sandy


myman
Veteran Member


Date Joined Feb 2007
Total Posts : 1219
   Posted 1/14/2008 8:29 PM (GMT -7)   
Sandy,
The gleason score is how a biopsy is graded. If your husband had a biopsy these numbers would be on the report. My husbands Gleason score was 4+3=7. The 4 indicates a higher grade cancer was predominant. A Gleason score of 3+4=7 would be better.

As far as the radiation is concerned - spot radiation can be used quite effectively to alleviate bone pain. Ask your doctor about this when you go or call his office with a list of questions. No reason to wait until an appointment.

Another idea to help you get familiar with things is Bluebirds post titled: Prostate Cancer Resources and Direct Links to Sites, Videos, Books, etc. to help with your research!
It's the second from the top on the first page for the pc forum - there are so many resources listed there for you to look through.

It's good you're here - you'll get support and we're all pretty good at offering advice! :-)

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


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8122
   Posted 1/14/2008 9:18 PM (GMT -7)   
Sandy,
I am bumping my videos thread to the top. In there are descriptions on basic terminology, treatment options, and testimonials. it doesn't take too much time to run through them but they can be very informative.

http://www.healingwell.com/community/default.aspx?f=35&m=962505&p=1


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.
 
Visit my journey at:
 
STAY POSITIVE!


belindafeathers
Regular Member


Date Joined Aug 2006
Total Posts : 21
   Posted 1/15/2008 11:57 AM (GMT -7)   
Thank you, thank you, Tony and Susan, you have made me feel as if I am not alone in this. Isn't it funny how you feel you are the only one in this situation when there are so many living with this awful disease that you would never know. My husband goes to the doctor on Friday and hopefully I will be able to meet up with him at the doctor's office (I also have a doctor appointment in another hospital). I feel we are in good hands, though. He is going to Hillman Cancer in Pittsburgh. His doctor has been very receptive to all questions (but like I said, I didn't know what to ask) and he is a teaching and research doctor also, specializing in PCa. Hillman is a part of the UPMC (University of Pittsburgh Medical Center). I just hope that this IS the best around here! I will post results I find out then. Again, thank you and God Bless all of you living with this. ..
Sandy


lifeline
Regular Member


Date Joined Aug 2007
Total Posts : 67
   Posted 1/16/2008 11:59 AM (GMT -7)   
Hi Sandy: My husband's situation is similar to yours. He was diagnosed in May/05 with advanced p.c. His initial psa was 900, but his Gleason Score was 10, not good.  Following a bone scan it showed spread to most of his hips, lower back, spine, some of his ribs and shoulders. One lymph node near his stomach was involved.  He had been having pain in his lower back for quite awhile and unfortunately we had to fight to get and mri done. This is how we found out.  He started on Lupron and between the beginnig and now has been switched to Ketoconozole and Hydrocortisone. When that stopped working was put Cyproterone Acetate. Stopped working and was put back on Casodex 150mg.  Now on Avodart and off Casodex. He has had several radiation treatments for pain in his bones and is also on Zometa every 3 weeks for strenghening the bones. His mood has also changed a lot. He wouldn't talk about it for a long time and even now he has never really said much about it except to tell me about the pain and most of the time only if I keep pushing. He has hit depression which he denies and I still think he's in. I'm pushing him to try a mild antidepressant. I have push my husband to try different things and am still battling this. Read everything you can about pc. Take a book with you to your appointments with questions written down and keep a journal of each visit and different things you notice at home with your husband. I do most of the talking when we see our oncologist since my husband forgets some things due to his meds. Don't be shy to ask questions of your doctors and if you don't agree with something speak up. I bought a book called A Reason for Hope by Michael S. Barry. He is a chaplain who works with cancer patients in treatment centres. This book is amazing and fills you with hope and helps you try to take control of cancer rather than cancer taking control of you. My husband and I have reread this several times I think you will find it helpful. Our battle has been up and down and full of different emotional times. At this time things aren't all that good but you have to keep fighting. Don't be shy to post here whenever you need to ask questions or just talk and release your emotions. You need that. There is so much more i could add to our journey but if you want you can e-mail me with any questions you have since our situation is similar. (Edit) click on..> lifeline
Yes, it's a scary journey, but remember, you are not alone. Let all of us help you and be your shoulder to cry or lean on, or your hand to hold.  This kind and caring group of people has helped me so much. Without them I wouldn't get through this. You WILL BE OKAY and make it through this.
lifeline or kathy
 

(Edit e-mail) Click on link and Refresh…once page is opened.

  **** E-Mail Addresses for Members Only (Masking for Security)

Post Edited By Moderator (bluebird) : 1/23/2008 1:44:25 PM (GMT-7)


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 1/23/2008 1:49 PM (GMT -7)   

Dear Sandy ~

     Thinking of you and your loved one...

            ~ and just wanted to let you know…

              As time permits... please let us know how y'all are doing.

                      Keeping you close in thoughts and prayers…

                               Hugs from Lee & Buddy


pcdave
Regular Member


Date Joined Oct 2006
Total Posts : 444
   Posted 1/24/2008 9:58 PM (GMT -7)   
Dearest Sandy

It is a blessing that you found this forum. The members above have given you so much great advice and words of comfort that you probably could not readily find elsewhere at this time. My heartfelt feelings go out to you and your husband. Your husband is so blessed to have a wonderful devoted wife like you trying to help in any way possible. I hope and pray that he will make progress in the treatment challenges he is facing. I was going to suggest that your husband get a 2nd opinion, but you seem to indcate that you are satisfied that he is in good hands with his present medical care. However, don't leave any stones unturned--in situations like your husband's, it is important to get more than one opinion. As is the case with many types of cancer, clinical trials for new (hopefully promising) drugs are often offered by various prostate cancer treatment centers. As someone else mentioned, you and your husband should consider consulting with a medical oncologist specializing in prostate cancer, if you have not already done so (i don't know what type of doctor is presently treating your husband--perhaps a urologist?). Medical oncologists who specialize in prostate cancer are often involved with and knowledgeable about clinical drug trials. Also, you mention the possiblity of radiation. If the cancer has spread beyond the prostate causing pain, radiation is often administered to help relieve the pain. You should at least discuss all of these matters with your husband's current doctor and then decide if you should seek additional medical advice and help elsewhere if he does not effectively address these issues (e.g., referral to a medical oncologist and radiation oncologist unless he can justify otherwise). My thoughts and prayers are with both of you. God Bless!

Dave


-69 years young!
-29 core biopsy 9/27/06 at age 68
-PSA 7.1, Stage T1c, Gleason 7 (3+4) [less than 20% in one area], Gleason 6 [less than 5% in two other areas], Negative DRE, bone scan and Endorectal MRI. 
-Completed 39 Proton radiation treatments 2/22/07-4/18/07.   
-PSA History: 7.1 pre-treatment; post treatment: 2.1 (3 mo.), 2.4 (6 mo.), 1.7 (9 mo). Radiation oncologist said the 3-mo. drop of 70% exceeded expectations and the slight 6-mo. movement upwards is not a
cause for concern.
-The following is a link to My Journey With Prostate Cancer -- Proton RadiationTherapy.  
 
 

Post Edited (pcdave) : 1/24/2008 10:04:44 PM (GMT-7)

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