Prostate Cancer Support Group

My 74 yr old hubby was diagnosed w/prostate cancer (psa of 17.5 & 12 out of 12 cores positive). Robotic surgery 12/2010. still had psa after surgery so had radiation. PSA kept rising & now bone scans show it has metastasised to bones. He'll be starting 2 different injections monthly starting 4/25. He's not in any pain & still works 3 days wk. I'm very concerned about side effects of the injections. Are they worth it, will he be able to continue working? I'm very worried about the future!!!!

Welcome, MM. Very sorry to hear about your guy. His cancer was quite advanced by the time he got to surgery. Did he have no idea what was going on or was he--like my dad, who died of PC at 78--afraid of what he'd find out?

Anyway, it sounds like he's doing pretty well considering how much treatment he's had. He must be a pretty healthy guy otherwise. What kind of injections will he get?

thanks for responding, I really need support @ this time. Yes, my hubby had an ultrasound 3 yrs before diagnosis & nothing was seen. A biopsy should have been done - psa @ that time was 5.6

We just assumed he had a "normal" high psa & he didn't get another one until symptoms. (frequent urination & ed) He'll be getting injections of Lupron & Xgeva. I really get upset when I hear that most men die with it instead of from it. I keep hearing that & can't stress it often enough that men need to be aware of their psa & take action if it keeps rising.

I don't know Xgeva, but Lupron is potent and can really help. It bought my father a couple extra years. Hopefully, for your guy it's early enough to expect more than just that.

MM, sorry I don't have anything to offer you. But did want to post that there are many like me who are keeping YOU and husband in our thoughts. Please be sure to take very good care of yourself during this time. You are doing what you need to do and using the internet.

Check local area for support groups. Can always start with hospitals.

Best to you both

thanks PM for your kind words - they mean so much

MM,

I re-read your posts. It's sounds like your husband's Doctor's missed the boat. When your husband's PSA rose to 5.6 3 years ago, it's highly likely he had prostate cancer. I have a sense you believe a biopsy at time might have prevented cancer from going into his bones.

So, in addition to your fears about the future, you are dealing with the idea this whole thing was preventable had your husband had a biopsy at that time. It is possible cancer was in his bones at that time, you have no way of knowing.

Whether it was or wasn't, it doesn't change the fact it is in his bones now. Once prostate cancer is in the bones, there is no cure, it becomes a question of fighting it, rather than curing it.

There's been a number of effective treatments for prostate cancer which has moved to the bone. I highly recommend buying Dr Walsh's book Surviving Prostate Cancer 2nd addition. There is some very useful information on the latest research on the treatment of bone cancer.

You already know that his condition is serious. If I were facing prostate cancer in my bones, I'd try to get a consult and possibly treatment at a facility that is involved in both treatment and research regarding prostate cancer. I would also consider participating in a research trial for the treatment of bone cancer.

Your anxiety about the future is well founded. Bone cancer has the potential to effect both the quality and length of your husband's life. Those are certainly issues you should address with the Doctor's who are treating your husband.

In the meantime I hope you can support each other, love each other, and make the best of all the time you have together as he fights against bone cancer.

How is your husband coping with all of this? Are you able to support one another?

Rick

Thanks Rick for the book suggestion - I'll read it. Yes, the dr missed the boat - waited until he was dong the ultrasound & then asked if he wanted a biopsy. Hubby said no & then wished he said yes, after the fact. His internist also screwed up - didn't do another psa the following yrs. I feel guilty for not being more informed re prostate cancer - I take care of hubby's appts, etc. A bone scan & MRI were done before his surgery & no cancer in bones @ that time. Then, the radiologist told him not to get a psa for 6 mo after his rose several times because the radiation was still working. We knew better & had it done & it doubled in 3 mo. Then we went to an oncologist @ Winship @ Emory in Atlanta, GA. He's done lots of research & seems very knowledgable. Af far as supporting each other...Hubby doesn't talk about it. I read & give him info & I talk to my family members & friends for support. His only statement so far re the latest development is "I wonder how many yrs I have?". That's why I sought out a support group - I'm a talker & he's not. I feel like I'm alone on this journey. We did talk about his fighting to be here for our 50th anniversary - 3 yrs fr Oct. Here's hoping & praying. MM

MM,

Sad to say lots of men are like that. We are a stubborn bunch of SOB's.

The best lesson you can have learned from this mess is that doctors are not Gods and can

make mistakes. A painful lesson, but one to profit from. Leave the past and concentrate

on the future. I hope that your husband can change and start being more active in his treatment. Even more than in first post- TAKE CARE OF YOURSELF. If you are doing most

of the "work" in dealing with this disease, cut yourself a lot of slack. Any family

around for help? Check for groups for yourself. Lots of PCa groups have wives attend,

some come alone.

Damn the torpedoes, full speed ahead!!

You go girl!!

MM,

I fear you are blaming yourself for not catching a Doctor's mistake. You can regret not knowing more than you did, I hope you don't blame yourself for not knowing what you couldn't have known.

Sadly, many men shut down emotionally when they are dealing with cancer and or their own mortality.

I don't want to sound morbid here, but if you don't have a will or you have legal or other issues that need to be dealt with now is the time to bring these things up.

It's important for you to connect with other women going through this and I don't want to underestimate the help you get here. It was a life saver for me.

You can test the waters with your husband if you have a history of talking about emotional issues. If you don't you might need to get more directive.

An example might be "Honey I know this is difficult to talk about, but I'm feeling very alone on this emotional journey fighting prostate cancer, I need to talk with you about it."

You may not get much back, but it's worth trying to open him up a little or at least enough to be willing to listen to your fears and concerns.

Keep posting. Keep asking questions, and for support from people on this forum.

Rick