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Posted 12/27/2014 7:39 AM (GMT 0)
Bone scan performed Wednesday Before Thanksgiving. Friday morning the nurse calls. Blastic activity in sternum. Dr set me up for ct scan of sternum on December 31.
I haven't personally seen the bone scan results as the Dr doesn't work on Friday s. He just called in and told the nurse to call me. I do have an appointment with him Monday at 3:20 pm.

Hip and thigh pain continues but they showed clear.

I feel dazed...and alone.

David
Posted 12/27/2014 9:21 AM (GMT 0)
Hi David, sorry about the news, but don't jump to any conclusions - (yeah, I know, who do I think I am kidding), but seriously, with your numbers, I would have thought it would be very unusual for mets to be showing up at this stage.

And of course I know you will be worrying until you see the Doc on Monday, but you know you are not alone while you are on this forum.

I'm sure some of the guys with a lot more knowledge than me will be along soon to offer some real opinions and advice.

Hang in there. We are with you.

Chas
Posted 12/27/2014 12:54 PM (GMT 0)
Island,

We're always here for you...so never feel like you're going through anything alone.

Your PSA is low, moving slowly, and you found a Gleason 6 through biopsy. Having a spot show on bone scan under these circumstances is very rare. Don't jump to conclusions....

But, let's wait until the doctor's visit and go from there. Hang in these...it is unnerving waiting for answers and a plan...but, you'll have both soon.

Jerry
Posted 12/27/2014 2:44 PM (GMT 0)
Hip and thigh pain might be from prostatitis.
What percent of cores was involved? Age?
Bone scans sometimes pick up old injuries or anomolies.
Hang in there.
Posted 12/27/2014 3:55 PM (GMT 0)
Seems very weird. Especially with only GLeason 6 found and low PSA that is rising slowly. I don't want to give you false hope island, but at the dr meeting, you should question him thoroughly, even regarding the possibility of error, either on the scan, reading f scan or switching of reports.
Sounds far fetched, but you never know, medical professionals are human, and stuff happens. Let him know, you are not in denial, but you understand that this is very unusual.
Posted 12/27/2014 4:41 PM (GMT 0)
Given everything else you have told us I would suspect that your upcoming CT scan is more likely to rule out metastases than to confirm them. Metastases are very rare with Gleason 6 cancer (if they happen at all which is uncertain) and they are also somewhat unusual with such a low PSA.

If the spots are confirmed as mets then that will probably mean that there was some higher-Gleason cancer that the biopsy missed (happens) but more likely is that the spot on your sternum will be nothing and you will be left with the awful burden of choice. If, as is likely, the CT scan is reassuring then you will have all the primary treatment options available to you and, as most of the guys here can tell you, choosing among them is murder.

If the spot does turn out to be a met then there will be fewer, and different, choices (but still lots of good ones).

You are going to be OK.

As for being alone. We are here and we've been where you are.

There is also a gathering in Baton Rouge in a couple of months. Since we've been where you are it is only fair that you should be where we are. Which will be Baton Rouge in April at Cajun Jeff's house. Mapquest says its a 650 mile drive for you. Might want to consider flying.
Posted 12/27/2014 4:52 PM (GMT 0)
Hey Robert...Sorry 'bout that. Both cores only 1-2 mm and 56 yo I just updated my profile. Thx

I couldn't agree more guys. Something, some part of the puzzle is missing. One wouldn't think that with these numbers that there would be this much disease. My mind goes to the aggressive kind that puts out low psa. None of this is known...or as was mentioned. ..likely.

Trust me prato...lol. I do plan on learning what's going on. I've know my dr for 30 years. He and I...we can talk.

It's not prostitus. I don't know if it's prostitus. I've been on different antibiotics on and off for years for this. Don't know that they ever really did that much and mu uro stated flatly..."you don't have prostitus"

I'm anxious to see the report and talk to the Dr this happens Monday afternoon. Till then...not so easy but takin it easy. :)
Posted 12/27/2014 4:56 PM (GMT 0)
It is worrying to get news like that. Like others have mentioned, I'd be very surprised to learn you have mets of any kind.

Still, it's worrying and very difficult to keep out of your mind, but try to set it aside for awhile. Do something to distract your brain - walk, movie, read, anything.

I suspect that when they finish the tests, they won't show anything worrying. What has the doc said about your pain? So many things could cause that with PC be so far down on the list.

Hang in there, and we're here if you need us.
Andrew
Posted 12/27/2014 4:57 PM (GMT 0)
Just saw your post Peter. And i am in exact agreement with the way you see things. Thanks so much man.

The gathering sounds great. Would love to meet so of you guys and am always up for getting outta town. How cool is that? Thanks man.

David
Posted 12/27/2014 4:58 PM (GMT 0)
First, let me assure you that this was probably nothing. "Blastic activity" just means bone overgrowth. This happens whenever a bone has been broken or bruised (anytime in your lifetime), or there has been an infection or arthritis. Metastases from the prostate typically spread locally first, and it is very rare for the sternum to be a first met. For low risk cases like yours, even if misdiagnosed by the first biopsy, less than 1% will have a true met. Bone scans have a notoriously high false positive rate.

This is exactly why you probably should not have gotten a bone scan, and your doctor defied the best practice guidelines of ASCO, AUA and NCCN in ordering one for you. He may have had some reason for doing so, but if so, he should have made that clear to you imho. Not only do such unnecessary tests raise costs for other patients like me, but they open a Pandora's Box of other diagnostic tests to confirm them, causing even more costs, and raising anxiety levels.

I think we, as patients, should be asking our doctors questions about every procedure they order:
- what are the risks and benefits of this procedure?
- what is the evidence that this is necessary?
- what will we potentially do differently based on the results?

I'm sorry you will now have to go through further tests to prove that it was a false positive.

- Allen
Posted 12/27/2014 5:11 PM (GMT 0)

Tall Allen said...
First, let me assure you that this was probably nothing. "Blastic activity" just means bone overgrowth. This happens whenever a bone has been broken or bruised (anytime in your lifetime), or there has been an infection or arthritis. Metastases from the prostate typically spread locally first, and it is very rare for the sternum to be a first met. For low risk cases like yours, even if misdiagnosed by the first biopsy, less than 1% will have a true met. Bone scans have a notoriously high false positive rate.

This is exactly why you probably should not have gotten a bone scan, and your doctor defied the best practice guidelines of ASCO, AUA and NCCN in ordering one for you. He may have had some reason for doing so, but if so, he should have made that clear to you imho. Not only do such unnecessary tests raise costs for other patients like me, but they open a Pandora's Box of other diagnostic tests to confirm them, causing even more costs, and raising anxiety levels.

I think we, as patients, should be asking our doctors questions about every procedure they order:
- what are the risks and benefits of this procedure?
- what is the evidence that this is necessary?
- what will we potentially do differently based on the results?

I'm sorry you will now have to go through further tests to prove that it was a false positive.

- Allen

According to walsh No scan is needed with these numbers. ...unless there is bone pain present. Yesterday I didn't hurt for half a day and I had forgotten what that feels like it was wonderful and en lighting. It also showed me just how badly I have been hurting. It started again and continues. It wasn't my dr who suggested it. He only brought it up and was quick to add they weren't really needed with these numbers. I'm the one who told him to order it. Maybe I'm just a hypochondriac. ..but the pain is getting ridiculous and no one's diagnosed it yet. It seems to fall on deaf ears. Doesn't matter. For me...i had to have it. :)
Posted 12/27/2014 5:20 PM (GMT 0)
I so value everyone's input. Thanks Allen. Trust me buddy..I'm on you side. That's the deal here...and what is so cool about this place.


David
Posted 12/27/2014 6:13 PM (GMT 0)
I feel bad about the bone pain, which must really suck. But there are so many things that cause bone pain and PC would be way, way down the list. I'm not saying that you don't have to worry about the bone pain, you certainly need to get that figured out. But I don't think you need to worry about the bone pain coming from PC.

Keep us posted as you get more info and we'll do whatever we can to help. Hang in there!
Posted 12/27/2014 6:54 PM (GMT 0)
heck....nothing wrong with getting a bone scan.....you could have had bone cancer before prostate issues although its rare. I would think a full body bone scan might also find any other deficiencies....I know it finds my severe ankle damage every time I get one. I think you made the call that made you feel comfortable. Good luck Island.
Posted 12/28/2014 12:48 AM (GMT 0)
island time:

IMO most doctors would not order a bone scan with a biopay result of Gleason 6 and a relatively low PSA number as in your case. If the Gleason 6 is representative of your entire prostate, we all would be shocked to see any prostate cancer metastitis to any bones. Easier said than done, but try to relax.

bill k. from NJ
Posted 12/28/2014 4:54 AM (GMT 0)
Dave,

Can understand the fear and frustration, especially with the hip and thigh pain.

My new VA doctor, said that the severe level of hip pain that I have, is so consistent with bone mets, that he's surprised that no scan has picked up any as of yet. One reason he's ordered all new scans of my hips and joints. Said that what wasn't picked up nearly a year ago, could possibly be showing up now.

While I have had the severe right hip pain for over 4 years now, it's moved into the left side with almost equal vengeance and severity. I actually have more trouble with the left hip/knee giving up or buckling than I do with the right side.

Hope that you get some clear answers to what ails you. I know how frustrating it is, to be feeling all this pain, and waiting for answers or scan proof of what is going on.

Good luck to you.

David
Posted 12/28/2014 11:22 PM (GMT 0)
Sheez lol. How do you guys do this. Yesterday fine. Today getting worse...stress wise. Lifted a few weights tonight helped. Now...lol...I've got my friggin phone off the hook. I just cannot talk to anyone because. ..As they say..."There's nothing left to say"

Anyway. .i just wanted to shoot a note out into no man's land ...

Appointment at 320 tomorrow. Wow...i don't know how you do it David. Thanks for the support though.

I've been on the Internet. ..big "no-no"
Posted 12/29/2014 4:30 AM (GMT 0)
Island, good luck with your appointment tomorrow, looking forward to hearing what your doc has to say.
Posted 12/29/2014 12:45 PM (GMT 0)

You said...
I've been on the Internet. ..big "no-no"

Hey, we are part of the Internet! So you are right. The Internet is a mixed bag.

Keep us in the loop about your results.
Posted 12/30/2014 2:01 AM (GMT 0)
Ok guys...

You guys were all right. (And you were to...Tall Allen...Although there's philosophical differences there that's food for fodder over a beer sometime! :) )

Bone scan last week showed "Focus of increased osteoblastic activity in mid sternum which may represent metastatic disease verses degenerative change of the sternum an nuptial joint. Consider correlation with CT."

So I had my CT today. I called the radiologists office to get their findings. The nurse came on the phone and I asked her to read the report to me. She did. Using much medical mumbo jumbo to describe a lesion on my sternum. I then asked her...Does that mean I have mets?" Her answer was "Yes".

Still 4 hrs to go before my pcp Dr's appointment. ..i told my sister and g/F of my mets. That it was confirmed to me by the radiologists office.

At my appointment. ..my pcp dr told me that the lesion is benign...we all have these types of lesions he said. This one will go away and another will pop up some where else. No mets.

Lesson learned...There is ALWAYS HOPE NO MATTER WHAT EVEN A MEDICAL EXPERT TELLS YOU.
Posted 12/30/2014 2:07 AM (GMT 0)
That's terrifix island. And not unexpected.

I don't understand though, you got an opinion on a VT scan from a radiologist that said bone mets
And an opinion from your PCP that said no mets, normal scan.

So who do you believe? And assuming they both know wha they are doing, how does this happen?
Am o missing something?
Posted 12/30/2014 2:19 AM (GMT 0)

Pratoman said...
That's terrifix island. And not unexpected.

I don't understand though, you got an opinion on a VT scan from a radiologist that said bone mets
And an opinion from your PCP that said no mets, normal scan.

So who do you believe? And assuming they both know wha they are doing, how does this happen?
Am o missing something?

The radiologist did not tell me I had mets. It was his NURSE who...according to my pcp...and who read what the RADIOLOGIST wrote...did not understand what the RADIOLOGIST diagnosed me with. That being...A small benign lesion of no consequence. 3 mm in diameter. She either did not know what her boss was saying on the report or...she answered "Yes" to a question that she did not hear correctly. She miss understood the question. One of the 2 is all I can see. She doesn't need to be giving medical diagnosis. It's not her job. But...i had no reason to believe she didn't know what she was saying when she answered my question.

Pcp...."I see this everyday. These lesions are not cancerous and we all have them"
Posted 12/30/2014 3:45 AM (GMT 0)
What did the actual radiologist say?
Posted 12/30/2014 3:52 AM (GMT 0)

Fauntleroy said...
What did the actual radiologist say?

I will get a hard copy tomorrow and post the actual language. Mine got left at the office in all the excitement.
Posted 12/30/2014 4:42 AM (GMT 0)
Got it. In the end, it's joyful news, very happy for you
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