Back pain with aggressive PC

Hi

We just got my husband's cancer diagnosis on Thursday, and it sounds really ominous.  His PSA was normal about 18 months ago, was 40 when tested about eight weeks ago, then jumped to 62 about two weeks later, stayed at 62 at a third test taken a couple of weeks after.  The biopsy results are I believe about the worst you can get -- a Gleason 9 (5+4), with cancer found in all 12 samples taken.  He's 58. 

He's having a lot of back pain -- that's how this was discovered.  He fell and had back pain that just wouldn't go away, so eventually saw his GP, where bloodwork turned up the initial scary PSA.  I know this could indicate his cancer has metastasized to the bones (we did bone and CT scans Friday, hope for results early next week), but also know that just plain prostate cancer causes back pain. 

First, does anyone know if back pain from pc vs. bone metastases feels/behaves differently?  I guess I'm looking for reasons to hope. 

And more productively, are there any pain relief options you'd recommend?  I'd love to do something to help him take his mind off his fears, but he's so uncomfortable, it's really keeping him home, worrying.

thanks in advance for any perspective you can share

 

Infohound - I too am sorry that you have to join us. I am a relatively new member to this forum and find everyone here to be of great help during this journey. Just a suggestion, but maybe you should call your doctor so he can prescribe something for your husband's back pain while you are waiting for the results. There is no reason to be in pain. I agree that he needs someone experienced in Prostate Oncology.
I know the fear you are experiencing during this difficult time and it sometimes is overwhelming. Lots of us have been there, are there and don't want to be there. Just know that there are lots of options out there. Although it may sound ominous today, thinks may change tomorrow. There are always reasons to hope.....so keep on hoping.
Zimac

Thanks everyone for your responses -- you do give me hope. Raddad especially makes a good point -- even though this terrible news we just got is almost all we can think about it, it doesn't mean everything going on is related. I'm borrowing trouble.

I'll try the massage and the find-the-right-oncologist research, and will let you know when we get some good news this week!

Infobound, My husband newly diagnosed with pc.Sounds pretty close to your husband's stats.his first symptom was back pain that would not go away.Well I guess it wasn't his first symptom but it was so bad that he knew something was wrong.He took vicodin and it helped a little.Once it was found to be pc with bone mets and he was treated with hormone therapy the pain has disappeared and he feels great except for hot flashes he is as active as ever.
I know what you are going through and it is hell,but it does get better.there are alot of days of crying,worrying and bitterness .There are also days of immense happiness .I never thought I could deal with something like cancer,but it has brought us closer together and each day is a blessing.There is light at the end of the tunnel and this website is a godsend.Just don't read too much. One day my sister called and I was having a bad day,she is a nurse and said stay off pc websites until you can handle what they say and not everyone is the same,each pc individual responds differently to treatment.If you need to cry on my shoulder just email me. Luci

Email me anytime. Just hit on my name alot of ? And it will take you to my email address.

Welcome to our little corner of h**l, sorry you have to be here, but glad you found us for some support.

My cancer was not nearly as extensive as your husband's, but I did experience unexplained pain in the back and left thigh and groin area. It felt like I was having hip problems and the muscles at all remotely connected to the the hip were unhappy. Mine clearly felt muscular, not bone. Like I was compensating for a hip injury. I saw an Orthopedist who did a full workup on my hip and said it was fine. No explanation. Then a few months later I got the PCa diagnosis due to my annual physical. Urologist told me the pain and the cancer were not associated to each other. But I heard others on the forums saying they have had similar symptoms.

I'm now 4 months post prostetectomy. Not an ounce of the back of hip pain. I am playing competitive level tennis again, aggressive cycling, etc., no problems. So was it associated to the cancer and removing the cancer has resolved the pain? We'll never know. But there certainly "could" be a link as there is no other clear explanation.

I mention this to let you know that not all things are as they appear. His back pain could be due to the cancer in his Prostate and his body's reaction to it. It may not mean there is bone metastisis. Keep a positive mindset until you have data in another direction. That positive mindset can do amazing things for both you and your husband. No matter the diagnosis, it is likely it can be aggressively fought with the right treatment.

Hang in there. The scariest part is not knowing. Soon you'll have a much better picture of what you are dealing with and will determine your best course of action. While you may or may not like the news you have, knowing what it is and going after it will feel much better than your world of unknowns today.

We wish you well. Ask lots of questions and the collective group will do all we can to give you the benfit of our experiences.

Infohound,

Let me also welcome you to Healing Well.  It is a great site for information (Info...right up your alley) or just to get support.  I agree with the previous posters...we can relate to what you guys are going throught right now...but hang in there.

One thing I realized from the start was that I didn't have the normal version of PC.  A G-9 is normally agressive.  This means you need to be just as agressive.  One thing you should learn early on is that you might need to add a good medical oncologist to your team of doctors.  A urologist is great, but their speciality is ... naturally urology.... radiation oncologists are good at delivering radiation, but a medical oncologist is there to combat PC through medicine and various therapies.  (PC is a hormonal cancer and is fed by testosterone.  Hormone therapy is used to reduce testosterone down to near 0.  There are various debates as to when to start hormone therapy, end hormone therapy, and what type...a good medical oncologist will help you with these decisions if you need to go down that route...).  

Through surgery and/or radiation, hormone therapy, and a ton of new or soon to be approved therapies there are plenty of tools to go to battle with.  There are things available today that were not available years ago.

So, allow yourself some time for the shock...then fight back. 

Please keep this site as one of your favorites and use it for any question.  Eventually, you will be an expert in all things PC and you will be able to help others that come years from now (and yes, your husband will be around for years to come).  The biggest thing that guys fear is that they think life is over once they hear those words - you've got cancer.  Life will probably be altered to some degree, but it is far from over.    Regardless what the scans show, evaluate where you are, get 2 or 3 opinions, take your time, and make good decisions moving forward.

If you ever need to email me, please feel free,

Jerry L.