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Old 04-06-2012, 03:28 PM   #1
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My 2nd Opinion - went from 8 to a 9 :(

Stats:
49 years old - slowly rising PSA the past few years from 1.5 in 2008 to now 3.56.
One neg biopsy last May 2011
Second biopsy in March 2012 after MRI to pinpoint suspicious areas.
G 3+5 = 8 in one core (10% - 15%) out of 13 cores - all the rest clear
Sent to John's Hopkins for second opinion -
G 4+5 = 9 in one core (40%) out of 13 - all others clear - not the direction I wanted.
Bone Scan and CT Scan both Negative.

So I got the updated G9 news this morning and about freaked. I was really hoping it would go the other way. I tried calling a couple of Oncologists and was told I'm jumping the gun, need to go through my Urologist first and if they still recommend surgery, I can meet with them after.

So does the 9 really change much? Like I said at first I freaked, but truth is I still have the 5 in there no matter how you slice it.

Looking at the positive side, it's still only one core and 40% beats 90%. My PSA is low @ 3.56 (although artificially since I've been on propecia for a long time). It doesn't appear to be outside the gland - even the MRI I had to find it noted that there wasn't any sign of it outside the prostate.

I know with a 9 I'm likely going to need follow-up if I do surgery - but I'm just hoping my odds are good and we've got it early. Man I hate this....

 
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Old 04-06-2012, 04:01 PM   #2
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Re: My 2nd Opinion - went from 8 to a 9 :(

I agree with your assessment that either way you had 5s in there. Gleason scores of 8, 9 or 10 are all classified as high risk, so it really doesn't change your options much. It's the Gleason 4s and 5s that can escape the prostate and send out micrometastases into the prostate bed. If that's what is going on, you can't see them on an MRI and surgery won't reach them. With micromets, your PSA can sometimes stay low, because there is not enough cancerous tissue to crank out a whole lot of PSA.

I don't know why an Oncologist would refuse to consult. Perhaps they assume that with a Gleason 9, it isn't likely your Urologist will recommend surgery and you will be referred to a Radiation Oncologist? Have you set up an appointment with a Radiation Oncologist?

- Allen

 
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Old 04-06-2012, 04:43 PM   #3
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Re: My 2nd Opinion - went from 8 to a 9 :(

Thanks Tall - really appreciate the feedback.

Regarding the oncologist, I really got more of the feeling that they expect me to have surgery first and would then follow up with an oncologist. In fact one office I called the nurse told me that her brother was a 9 and had surgery 2 years ago and is fine. She said I should talk to the surgeon first and then see from there.

I think I've said before, I'm seeing dr Catalona in Chicago and he even said when I was an 8 that surgery was the way to go even if I have to follow up with something else. He said there have been studies that show better prognosis even with high risk if the patient has surgery first.

I am sort of leaning that way, throwing the kitchen sink at it.

 
Old 04-06-2012, 07:57 PM   #4
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Re: My 2nd Opinion - went from 8 to a 9 :(

The prostate Cancer Research Institute recommends a combination treatment for all high risk cases. I think the mistake that most patients make is to treat low risk PC with radical treatments and treat high risk cases not aggressively enough. The result is higher side effects for patients whose cancer poses little risk and high reoccurrance rates for patients whose cancer does pose a significant risk.
Throwing everything at it is a good strategy at your age. Brachy combined with IMRT along with a course of Hormone therapy is about aggressive as you can get and still have a reasonable expection of few side effects.
JT

 
Old 04-07-2012, 08:55 AM   #5
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Re: My 2nd Opinion - went from 8 to a 9 :(

Just an update - when I requested to have my slides so I could send them to John's Hopkins, I assumed they were giving me all 13 cores/slides. Rereading the Hopkins report it shows that they only got one slide, the one that was originally found to be positive - the one that they originally said was 10% to 15% involved and only 3+5, which now turns out to be 40% involved and a 4+5.

So with such a change I'm really sort of upset that they didn't give me all 13 slides to send - what are the odds that it's really just in that one core? Since Northwestern missed the 9, do you think they may have missed cancer in the other cores? I keep staying positive thinking it's just one core, but now I have to wonder.

 
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