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Posted 8/27/2011 4:25 AM (GMT 0)
Hello

A little background

I was diagnosed with advanced prostate cancer earlier this year in march at the age of 53  . It has spread to the spine and tests positive in the bone marrow . At the time of dianosis the pain was severe even with a 50 micro gram patch of Fentanyl that i was on for ankylosing sponditis . I am on hormone therapy and in the beginning the hot flashes were bad but now its not so bad .the Casodex did and almost instant job of reducing pain .

My first psa test was march was 1500+ and had steadily gone down to a 3.2 last month now this month came in at 6.5 , My Urologist who I thought was doing a fantastic job cannot be nailed down awnser my question of is this of great concern? i now question his expertise on prostate cancer ? He seem to have a attitiude of lets just see what it is next month .

I returned to work 3 months ago and my job is very phisical and body pain from work and the ankylosing can make it hard for me to tell were a increase in pain is coming from .

Looking for some input on what is the best type of doctor to be treating me ? Anyone have a suggestion on a Doc in the Inland Empire of Southern CA. ? Thoughts on the numbers i have ?

Thanks

Jim

 

Posted 8/27/2011 5:22 AM (GMT 0)
Hi Smokin54,

Sorry to hear of your battle with this beast that no one wants.

I am very new to all of this, as my husband was just diagnosed about 2 months ago with advanced prostate cancer. So... I probably should not be commenting at all... :)

Personally, I would be very concerned about a rising PSA. It could be one of the first signs that you are becoming hormone refractory. Perhaps the doctor wants to wait another month to see if it climbs more or settles back down some? I know PSA rising and doubling can be extremely worrisome, but I have also heard of some that rise one month then go back down.

I feel certain that one of the forum veterans will come and correct my errors, but I did want to welcome you and wish you well on your next test. I hope the pain keeps decreasing with the Casodex too!

Remember, I picked the name MsWorryWart for a reason. I worry about everything, so pay little attention to my thoughts. :)

 

Posted 8/27/2011 7:23 AM (GMT 0)
I'm not as experienced as the others on this site but it seems to me that if it's in your bones you should be seeing an oncologist instead of of urologist now. Or maybe having the two work together.
Posted 8/27/2011 10:58 AM (GMT 0)
Smokin54
So sorry you have joined our club but so happy you found us. One thing you will find here as I did you are not alone with your particular PC and there are many in here who will give some darn good advice from their own PC journeys. You said you live in Southern Calif and you should have access to several world class cancer treatment centers. I am neither a doctor nor an expert,but If it was me I would want to be referred to an oncologist who specializes in advanced PC treatment. Hopefully someone in here from your part of the country can give you some leads to find one.

MsWorryWart
I personally think your screen name is perfect as you do have a lot to worry about and your husband is blessed to have you worrying about and for him. I personally find your thoughts to be worth paying attention too. Your worrying and thoughts in dealing with your husbands disease is nothing to apologise for and is your strength in facing your futures together..So please do not make any more apologies for your name and worrying.

Terry the Water Guy
Posted 8/27/2011 12:38 PM (GMT 0)
I don't have much advice but I just want to wish you the best. One thing that I will pass on is that I've heard that even advanced prostate cancer is more treatable than many other forms of cancer and there are some men in the support group that I attended who have been on hormone therapy for about 15 years.
Posted 8/27/2011 2:11 PM (GMT 0)
Jim,

Hello and welcome. You got a serious situation on your hand for sure, you are already on a tough journey with the spread to the bone.

You should, if not already, be in the hands of an oncologist that has experience with advanced prostate cancer.

I deal with constant chronic pain and fatigue, as the results of the treatments (surgeries and radiation) related to my cancer. It's severe enough that I was able to qualify for Social Security Disability. Not what I wanted, but I have been unable to work for the past 3 years. They wouldn't approve it for prostate cancer alone, but due to the complications, I was able to get approval.

If your job is that physical, and you already have bone mets, you need to be getting some good advice from an onologist, to make sure that you are not making your situation worse.

Please keep us posted, you got a lot on your plate.

David in SC
Posted 8/27/2011 2:58 PM (GMT 0)
Jim,

Welcome to HW. As much as I hate for you to be here, there are a number of members here who should be able to help.

I would suggest you add to your thread title, perhaps "confirmed mets - s. Calif" would draw more attention. Use the pencil box in the upper right corner of your post to reopen it.

As to treatment, it does sound like you will want to find a Medical Oncologist to work with your Uro.

There are several members who discuss treatment in that area, I hope they will speak up.

Posted 8/27/2011 4:07 PM (GMT 0)
You don't want to be treated by a urologist at your advanced state.

The two best doctors in So Cal are Dr Mark Scholz, Prostate Oncologists Specialists, in Marina De Rey and Dr Bob Liebowitz, Compassionate Oncology, in Los Angeles. Both specialize in advanced PC and well worth the travel time to see either.

JohnT

Posted 8/27/2011 4:32 PM (GMT 0)
Smokin54, John T just gave you some great advice. Good luck on your journey.

Terry

Posted 8/28/2011 2:31 PM (GMT 0)
I also have prostate cancer of the bone as was diagnosed via a bone scan (thats where they inject radioactive material into your veins and you lay down and go through a imaging device)
But than the medical team (urologist, oncologist and radioligist) had me go through X-Rays and my bones (the left femur which has the most active cancer and which was raising the most concern from the medical team) were found to be 'normal' - per the X-Ray.
I'm also on the Casodex (which I did not know would reduce pain!) and Zoladex for the actual cancer and also Zometa for the bones.

smokin54 - sounds like our diagnosis is very similar (my psa was 1440, amazing I had and have no pain).

I think you need to engage more than a urologist as has been mentioned by other of our fellow club members

just my thoughts - I'm new to this by about 6 weeks now -

Bud
Posted 8/28/2011 10:19 PM (GMT 0)
Actually after reading the responses here i looked back and found that I have seen the oncologist , he origially diagnosed the prostate cancer and suggested the Urologist .
This whole thing was brought on by sever Anemia , This was found by my Rheumatoligist . I had him take me off work as each day was my energy level was diminishing quicksly .
I need to figure out how to find a doctor within my medical plan who is a oncoligist that specializes in prostate cancer ?
Posted 8/28/2011 10:28 PM (GMT 0)
Hi smokin54

Welcome to the forum and so sorry to hear of your Pca status.

I can only repeat what has already been said, as I am a newbie myself and only begining ot get myself educated on this disease. Best wishes for the future.
Posted 8/29/2011 10:00 PM (GMT 0)
Smokin54,

The last few insurance plans I've been on have websites, and some sort of "find a doc" page. Mine lets me choose my plan type, a specialty, then a distance away. Check to see if you have that - it is easiest to start with.

Next route is to call the help line on your ins. card and ask for help.

Mine does not give specialties to the level of type of cancer, but does allow specifying "medical oncologist". Then you have to start calling for more info.

I would suggest that you call any nearby major university or teaching hospitals, and ask if they have a cancer care coordinator, or a cancer outreach program. The folks who run those programs can usually tell you who the best doctors are.

 

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