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Old 03-23-2012, 07:50 AM   #1
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Just DX - I'm an 8! 3+5?

Ok guys, looks liKe I'm joing the club. Sorry this is short but I'm actually at sea right now. Anyhow, on my 2nd biopsy I'm an 8, a 3+5! I have never heard of it skipping, what happened to 4 and now do I have more to worry about because it jumped to a 5? It is in one core I think and 10% to 15%. So what are your thoughts, by the way I'm only 49. My PSA is 4.3 but I've been on propecia for years.

 
Old 03-23-2012, 11:56 AM   #2
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Re: Just DX - I'm an 8! 3+5?

Sorry to hear about your Dx. The good news is there seems to be very little cancer there. First thing I'd recommend is have your biopsy specimens read by a specialty lab like Bostwick or Epstein. Although the numbers are usually ±1, they don't have to be. The second number of the biopsy Gleason score is the second most prevalent grade, so there may very well be some Grade 4 cancer tissue in the core, but there is less of it than of Grade 5. If it is confirmed to be Grade 5, even if there is a small amount, you will have to treat it before it escapes that prostate gland.

Did the doctor feel anything suspicious on DRE? They might (or might not) be able to see any extracapsular extension with a 3T MRI. Because there are about even odds (based on a nomogram with your data) that the cancer has extended beyond the prostate capsule, you might want to talk to a radiation oncologist about treatment options. For a Gleason 8, many doctors recommend a short course of hormone therapy prior to external radiation and a brachytherapy boost to the prostate. Surgery may be an alternative option, but it would have to be followed up by radiation anyway if they can't get clear margins.

- Allen

 
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Old 03-23-2012, 01:26 PM   #3
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Re: Just DX - I'm an 8! 3+5?

Thanks Tall Allen. The dre was normal, in fact the dr said it was amazingly normal. This was my second biopsy, the first was all clear a year ago. This one they did after I had an MRI that showed two small suspicious areas to target, somewhere in the middle. The doctor is already recommending surgery (he's a surgeon), Dr Catalona in chicago, suposed to be top notch. The MRI didn't see anything outside or in surrounding tissue, I still have to do a bone and ct scan to confirm. The doctor's thinking is that its very small and with my age and good health, I should have it removed.

Are you thinking even though its small and mostly 3, with the 5 in there that likely won't be enough?

Thanks again for the info!

 
Old 03-23-2012, 01:28 PM   #4
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Re: Just DX - I'm an 8! 3+5?

Thanks Tall Allen. The dre was normal, in fact the dr said it was amazingly normal. This was my second biopsy, the first was all clear a year ago. This one they did after I had an MRI that showed two small suspicious areas to target, somewhere in the middle. The doctor is already recommending surgery (he's a surgeon), Dr Catalona in chicago, suposed to be top notch. The MRI didn't see anything outside or in surrounding tissue, I still have to do a bone and ct scan to confirm. The doctor's thinking is that its very small and with my age and good health, I should have it removed.

Are you thinking even though its small and mostly 3, with the 5 in there that likely won't be enough?

Thanks again for the info!

 
Old 03-23-2012, 03:33 PM   #5
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Re: Just DX - I'm an 8! 3+5?

If it were me, I'd confirm it with another lab before doing anything. It makes a very big difference in your treatment options if your Gleason score is 3+3, 3+4 or 3+5 and Gleason grades are hard to read for non-experts.

You asked:
Quote:
Are you thinking even though its small and mostly 3, with the 5 in there that likely won't be enough?
Yes, the "5" -- even a small amount of it, is very invasive. That's why your nomogram, which gives the odds of extracapsular penetration, shows it at over 50%, even for 3+5 in just one core and fairly low PSA. However, this doesn't account for the fact that that core was in the middle and the % was very low -- your actual odds may be somewhat better because of those favorable findings. You can ask your doctor to run a more detailed nomogram with your full biopsy results, or find one online and run the detailed numbers from the pathology report yourself.

Dr Catalona is a great choice for a surgeon, but as you say, he will only recommend surgery. Even 3T multiparametric MRIs are not very good at showing up small bits of cancer of only a few millimeters in size. The only way to definitively know what's in there is to remove the whole gland surgically. However, if the margins aren't clear, they will have to follow with radiation anyway. Alternatively, you can just have radiation without surgery, which is not invasive, but doesn't allow you to biopsy the whole gland.

It's a hard decision. If you go with surgery, that may be all you ever need, but there's significant odds you may need radiation too. If you go with radiation, that will be all you ever need. There are also the side effects of treatments to consider, especially urinary and sexual. I think you owe it to yourself to get a second opinion from a radiation oncologist, after you get a second lab report.

- Allen

 
Old 03-24-2012, 04:30 PM   #6
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Re: Just DX - I'm an 8! 3+5?

Hello jupaul:
I can understand your concern about your gleason score and what it may mean in terms of having prostate cancer. Allen, as always give sound advice and I would highly recommend you consider it. As you apparently know, Procepia is known to lower PSA scores and though I have not done any research on its effect, I think is safe to assume that for you, PSA is not a reliable indicator of the extent of your PSA. You may want to discuss with the doctor that prescribes the Procepia whether you should discontinue its use at this time. PSA scores, especially progression, is generally regarded as one of the better indicators of prostate cancer. I was wondering, is there any history of prostate cancer in your immediate family? Also, are you Caucasian and do you have any other health issues? Again, I concur with and would recommend that you proceed with Allen's recommendations to get a second lab report from a specialist and then consult with a radiation oncologist. At age 49, as Allen indicated to you, your greater decision regarding treatment probably will be with the incidence of side effects - incontinence and impotence, to name the two main ones. As you are apparently aware, there is a huge difference between 3+5, 4+4 & 5+3 - even though they are all Gleason 8's.

 
Old 03-25-2012, 08:40 AM   #7
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Re: Just DX - I'm an 8! 3+5?

Thanks again guys - really appreciate the input.

I'm definitely wanting to have my slides re-read - I'm very happy (if that's possible to be be in this situation) that my first number is a 3, I just really need to confirm that 5 - that seems to make the HUGE difference.

Everything I read seems to lump the 8-10 group all together as one and the odds aren't great. I hope I'm correct in assuming that 3+5 is somewhat better than 4+4 or 5+3?

I'm also encouraged that it was a small % in one core and the doctor only found it after an MRI, had he not done that I probably would have had another negative result - so I'm considering myself lucky that they found it "early".

Two other questions I have - the biopsy result says the area it was found was mid-gland - is that better or worse than other areas?

Also - I've been on Propecia for years (like over 10) - and I'm just about convinced that had something to do with giving me an 8, there is no history in my family, so it seems odd that I jump to an 8 - anyhow that's water under the bridge, but I'm wondering if I should stop taking it? Every doc so far has said my prostate it small and if I do go with surgery that seems like it would be better - if I stop taking propecia now would my prostate "plump" up making it more difficult?

I really want to chat with an oncologist too - where can I find a good recommendation for Chicago?

Thanks again - this is all so overwhelming - there just aren't enough hours in a day.

 
Old 03-25-2012, 08:43 AM   #8
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Re: Just DX - I'm an 8! 3+5?

Sorry - also meant to answer - I am Caucasian and I'm in good health, 49 yo very active - so I should tolerate surgery well.

 
Old 03-25-2012, 10:56 AM   #9
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Re: Just DX - I'm an 8! 3+5?

You wrote:
Quote:
Everything I read seems to lump the 8-10 group all together as one and the odds aren't great. I hope I'm correct in assuming that 3+5 is somewhat better than 4+4 or 5+3?
The first number is the grade of the most prevalent type in the tumor, the second is the second most prevalent grade, so you're right that 3+5 is better than 5+3. But the reason they talk about the sum or score (=8) is because that is what correlates with the aggressiveness of the cancer. A grade of "5" is as high as it goes, indicating very undifferentiated cells that can escape and live outside the capsule, so even a little bit of it is dangerous. Any score above 7 is classified as high risk, and the protocols for treating them are pretty much the same. That is why it is so important to have your biopsy read by a specialty lab -- your options and your expected outcomes can change a lot. You have several lower risk features that improve your prognosis.

Quote:
the biopsy result says the area it was found was mid-gland - is that better or worse than other areas?
Better. Extracapsular extension usually occurs from the base. Also, the farther from the edge, the better.

Quote:
but I'm wondering if I should stop taking it [Propecia]?
Finasteride, the main ingredient, has been considered for use in preventing prostate cancer and many people on hormone therapy take it. Finasteride is better at stopping the Gleason grade 3s than the Gleason 5s, which may explain why all they found was a tumor with a Gleason 5 in it. Perhaps the rest were stopped or destroyed by the finasteride you were taking. In my opinion, it is more likely that it is helping you rather than hurting you. Stopping it now would also probably increase your PSA and make it less specific to prostate cancer, but I'm sure you'll be treated before that or any prostate enlargement becomes an issue. Many people, like me, have no family history. It's natural to try to put the blame on something. In the end, I've found that s*** happens, and there are things that we can never control.

I don't know any radiation or urologic oncologists in Chicago, although there must be many good ones there. All the ones I know of seem to be in California, New York, Texas or Florida. Are you restricted to the Chicago area?

- Allen

- Allen

 
Old 03-25-2012, 11:04 AM   #10
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Re: Just DX - I'm an 8! 3+5?

Thanks Tall Allen - actually I could consider Texas - particularly if they are from the Houston area. I would think I'd be able to find something in Chicago, but I wouldn't rule out going where I need to go to get the best.

 
Old 03-25-2012, 11:23 AM   #11
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Re: Just DX - I'm an 8! 3+5?

MD Anderson in Houston is one of the top cancer centers in the world. Perhaps closer to home for you is the Mayo Clinic in Rochester, Minnesota. Lurie Cancer Center at Northwestern U. and the U. of Michigan Cancer Center are part of the National Comprehensive Cancer Network (NCCN), which maintains very high standards of excellence. There are also many doctors in private practice, like Drs. Meyers and Scholz, who are not associated with specific hospitals.
- Allen

 
Old 03-25-2012, 03:16 PM   #12
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Re: Just DX - I'm an 8! 3+5?

Hello jupaul,
I could not agree with you more - the decision making process with prostate cancer is overwhelming. I was quite frustrated with there not being a clinical way to approach the decision making process. Allen was a great help to me and he is responsible for having the Prostate Cancer Decision Tool tacked to the top of this board. I hope you will take time to read it if you haven't already.

My point about the Procepia is that (again, I haven't researched this) by taking the Procepia, you may have suppressed the actual progression of your PSA. In other words, you could have had PSA scores over the last 10 years that were in the 2-3 range because of taking Procepia while the actual PSA might be double that - 4-6, which as you can imagine would be of alarm. On the other hand, if your doctor knew or understood the affect of Procepia on PSA, then he or she could counsel accordingly.

You should also be aware that last year the FDA rejected 5-alpha reductase inhibitors (finasteride, Proscar, and dutasteride Avodart which are currently approved to treat benign prostatic hypertrophy) as a cancer fighting drug. The reason they did so primarily is because of situations similar to yours. 5-alpha reductase inhibitors can mask the existence of aggressive cancer cells.

In my own experience, after I was diagnosed with prostate cancer, my oncologist gave me a 'off label' prescription to Avodart (dutasteride) with the intent of reducing the size of my prostate and ostensibly cutting off the fuel (DHT) that prostate cancer cells feed on. When I had PSA done, the rule of thumb was to double the score, e.g. a 4 was considered an 8. I again suggest to you that the progression of PSA scores are of more value in diagnosing the aggressiveness of the cancer cells. (All of this information has been posted multiple times on this board for you to read and consider.)

As Allen suggested, stuff happens without rhyme or reason. I only asked about incidence of cancer in your family and ethnic background because statistically, there is a greater chance of cancer for someone if a family member has cancer and if you are African American. It is not a given, but it is factored in the diagnosis or likelihood of someone having cancer.

I highly recommend that you get a second opinion on the core samples. I sent my samples to Epstein at John Hopkins and he reversed my highest scores of 4+3 to 3+4. That was good but it was frustrating because the scores for each core were based on a significantly different (IMHO) percentage of cancer cells. To me it was like the core samples could be from 2 different people. Now, I've no doubt they were mine but it was disconcerting to find such a variance. I asked my urologist and he deemed it as common. In short, pathology is in some ways more an art than a science. Epstein (with all due respect) is an exceptionally good artist. Bostwick is considered another great choice.

As you go down this road, understand that the more information you can accumulate about your condition, the better prepared you are in making the best decision for you. Every doctor has a perspective based on their experience and on their chosen specialty. Those views must be considered - in context with other doctors and your study of your situation. I wish you well in your journey to making the best decision for you.

P.S. there is a wealth of information on this board - I suggest you absorb as much of it as you can.

Cheers!
Don

 
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