Husband's Advanced Prostate Cancer

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. 

  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

Sandy - let me know what questions you have? What treatment is he on? Are you seeing a medical oncologist?

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.

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 

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

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,
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.

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


Tony

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)

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