my husband recently diagnosed_never missed a PSA checkup

sammyswife - all I can add is that I, like Sammy, was getting my PSA checked at my annual physical for many years, then one year, at age 60, the PSA was elevated and here I am five years later. I had no family history of PCa. But there are many treatments for us now. Please stay positive. I would like to say how great it is that you are researching and helping your husband with this.

Sammyswife,

It sounds to me like you are indeed doing what is right by your husband! He is lucky to have you in his corner. Here are some of my experiences...

I know that frustration you feel about not doing more in terms of monitoring progress, but doing a lot more now really would not be towards any purpose. The Lupron will work but it takes time for the testosterone and PSA numbers to settle down. And there is not much that would change in terms of treatment from measuring more. Yes it would be comforting to have the knowledge of the PSA going down towards zero, but it will. I've only had my testosterone measured once in the 5 months since my Lupron started. It was 37 and my PSA over that time has gone from 121 to 72, to 54, to 3.8, to 1.9. I am now seeing my medical oncologist quarterly instead of monthly. It is not like they would do a booster shot or anything to speed things along; it just takes time. Frustrating, for sure.

More likely, you will find yourselves dealing with the side effects of the hormonal changes over the short run. Hot flashes are common, as are fatigue and lack of energy overall, and constipation from any pain killers you may be using to deal with bone pain. Hopefully you will find these all to be pretty minor and manageable as I have.

Like you, my urologist started the hormone therapy. I am switching it over to the medonc as he is a little more up to date on various other treatments that will be coming down the road. He has also gotten me into a drug trial comparing Casodex to TAK-700. It is not really a major potential breakthrough thing, but the study did pay for some extra baseline testing and would have supplied the new drug to me, but I got randomly assigned to the control group of Casodex. My urologist would not have been able to get me into this study. In my case, it was time-sensitive for inclusion into the study. I think there was a 4 week window or something from the administering of the first Lupron shot to having all the scans and tests done. My medonc was able to speed the process along.

Eventually, hopefully not for many years, the Lupron shots won't be as effective at holding down the beast. At that point, there are many chemo drugs that can be used and more coming in the pipeline. An oncologist should be more up to date on the current state of affairs of that drug research than your urologist would be. So for the future, it is a good idea to find an oncologist you like now while you have ample time to do your own education and search.

Hi there sammyswife...

I hate you have to be here but a sincere welcome to you both, now that you are.

Quite the hand to be dealt huh? You are no doubt painfully aware by now that the unknowns of a cancer diagnosis can leave us feeling lost and frightened. And, with good reason! We ARE lost...at first...not knowing fully where to turn, nor what our next step is to be. We feel a need to act but we've yet to receive what we feel we need in order to do so.

Rest assured sammyswife, you're not alone (even though your feelings are screaming otherwise) and that you ARE DOING what needs to be done (and in a timely fashion as well). You don't strike me as the kind to sit on your hands (even though this process requires that of us at times) when there's things to be learned and information to be gathered! This will undoubtedly serve you well in the coming weeks, months and (many) years to come.

If the spot on the bone scan does prove cancerous, I would certainly encourage you and your husband towards enlisting the help of an oncologist (whose specializes in prostate cancer).

Though not stage 4, I it was recommended to me that I consult with Dr. Oh, head of oncology, at the Mt. Sinai Hospital in Manhattan. This consult was for the purpose of helping me to come to terms with my diagnosis and served to provide me with the many options of treatments available for my situation.

I recommend him. He's familiar with all things "prostate cancer", and has been involved with the treatment of men's names you would recognize. Men who have the means to have the best treatments available. His knowledge and delivery has had a calming effect on me. He's just a very "regular" kind of man who can relate alot of information in elementary lingo. (Something I need!).

Your getting your feet under you as we speak even though it may not seem like it now. This is somewhat of a marathon, rather than a sprint. It will come...

There's also an oncologist at John's Hopkins who is handling my brother-in-law ' s stage 3 cancer with G9 found in his lymph nodes. It was found 10 months ago and he has just received his first post treatment PSA. His cancer is now undetectable (no measurable signs of cancer anywhere in his body).. His PSA was 20 pre treatment.

Sounds to me as if there may yet be more to learn from your husband's case. The jury may not yet be completely in yet. But, whatever the verdict proves to be, Sammy shouldn't be going anywhere anytime soon...regardless.

I'll get the name of the oncologist at JH. I'd call my sister now and get the name of his oncologist there but, they'd be no answer as I'm sure they're both asleep. They've been at this a year now. You'll be sleeping well again soon enough but there's just no avoiding the trauma (for lack of a better word) that you're having to endure now. But...as things become more clear it subsides.

I will post the oncologists name at JH tomorrow, even though you already have access to the best of the best right at your doorstep and most likely won't need him.

Keep coming in here with questions. Most men here know much more than I that are anxious to help you (and wiill) in anyway they can.

(Lord knows I've worn some out. But...I'm told to keep coming back nonetheless).

Ever things going to be OK. And that's more than just some sort of a platitude. It's for real.

Welcome to the club no one wants to join. You're not alone...

Dave

Post Edited (island time) : 9/17/2015 12:24:59 AM (GMT-6)

Hi

I also consulted with Dr. Morris and thanks to his advise, I am now with Moffitt Cancer Center in Tampa Florida where I live, who I am happy with vs. my Urologist who was frustrating me with missed appointments etc.

Dr. Michael Morris in NYC is one of the best in the world so you are in the best of hands with him and his team.

Take care and please let your husband know that we "got his back"

Hi sammyswife,
My husband has low PSA and imagery (but not tissue) confirmed mets to the pelvic bone. In 2006 with a PSA of 0.18 x-Ray and follow up CT found 2 1cm spots. bone scan neg. in 2011, after a slowly rising PSA (to 1.65), bone scan confirmed 3 blastic lesions, one at 2.9 cm at the same spot seen in 2006. Because there was a family history of very slow growth and the numbers were so low, we opted to go with watchful waiting (Bill had BRAC in 1999)
Since 2011, annual bone scans and PsA tests every 6 months. Numbers and size of larger have gone up and doctor urged him to start HT.
the big differentiator in his case Has been the very slow doubling rate. That may be more telling than the absolute numbers.
Btw, our doctor also discouraged a bone biopsy because of the pain.
I know your emotions and fears and my thoughts are with you
Bill'swife