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Now I'm freaked - just got my second opinion results - now I'm a 9!

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Posted 4/6/2012 3:10 PM (GMT 0)
Ok, I was holding it together but I'm not sure I can handle this.

I had a biopsy about 2 weeks ago and the original results were 3+5 = 8 in one core out of 13 with 10% to 15% of the core involved.

I thought it was odd to have a 3+5 and wondered where the 4 was, so I sent my slides to John's Hopkins. I just got the result and they are saying I'm a 4+5=9! with 40% of one core.

To me that SIGNIFICANTLY changes things and I'm really scared now - not that I wasn't before, but at least with a 3 in there and only 10% to 15% I thought I had a shot. My scans were all negative.

I'm only 49 - I know that doesn't really matter, but this is just too much.

When I was the 8, they wanted to do surgery, now I'm really questioning that given the 9 and with 40% of the core involved.

Thoughts?
Posted 4/6/2012 3:46 PM (GMT 0)
gadget,

I don't recall your PSA. With G9 and your age, I think you need to be of an aggressive treatment mindset. Surgery can still be a good option but you need to be mentally prepared to possibly (or probably) need radiation and HT in addition to surgery. Or, you can go straight to radiation + a course of HT. I recommend you discuss with a medical or radiation oncologist before making the surgery decision.

Posted 4/6/2012 3:56 PM (GMT 0)
Thanks Southern - makes me feel a little better. I was really getting ok with the 3+5, but this 9 just blows my mind.

My PSA is only 3.56 - but I've been on propecia for about 15 years, so that would make it much lower - even if I double it, I would say it's no higher than 7.
Posted 4/6/2012 4:20 PM (GMT 0)
Gadget,

Sorry to hear the news. Please don't be overly concerned. Even Gleason 9 cases can be treated curatively, and there are many new treatments on the horizon that promise excellent results.

In a way you are lucky -- you haven't taken action based on an inaccurate report. My Gleason score was originally 7 at biopsy, but switched to 9 after surgery. I'm not sure if I would have had surgery had I known; on the other hand, if I hadn't had surgery (I didn't know about getting second opinions then), I would probably not have been treated correctly, and wouldn't have found out about Gleason 9 until metastases, if then.

You were wise, and you will benefit from your wisdom in getting aggressive treatment for your condition. Your job now is to try to find out as much as you can about the state of your cancer so you can make the best decision. Most importantly, you want to know if it is organ-confined. A color doppler ultrasound done by an expert like Dr. Fred Lee might be a good idea.

Best wishes,
Nellie
Posted 4/6/2012 5:05 PM (GMT 0)
Gadget,

Sorry about the bad news, but the change of outlook is probably more in your head than in your actual condition. Take heart in the fact that there are lots of guys walking around with G9 cancers who are doing ok. Moreover, there are lots of very exciting new developments in the treatment of advanced PCa. I suggest you hang in there, put your game face on, and make yourself as healthy as possible (physically, mentally and emotionally). You'll need to go through some stuff to deal with this, but there are very legitimate reasons to be optimistic.

I can't advise you on the best way to treat advanced PCa, but I do agree that it's worth getting two or three opinions on this. Seeing a radiation oncologist and a medical oncologist who specialize in PCa would be a good next move. I don't know where you live or where you're being treated, but you'll want the absolute best docs you can get. It makes a difference.

Good luck with your treatment, whatever you decide. Most important, try to get centered and find some peace within yourself. In my view, the most valuable commodity as you go through this will be a positive and steady attitude. All the G9s I know who are doing well seem to have that going for them. Hang in there and let us know what you decide, and let us know how you make out. As you know, there's lots of good information and support here. Don't be a stranger.

Jonathan
Posted 4/6/2012 5:39 PM (GMT 0)
Hang in there. There are people here with Gleason 9 that are doing fine. I know you are concerned. One question I have is how many samples were taken and how many came back with cancer. I had twelve samples and six came back with cancer.
Posted 4/6/2012 5:49 PM (GMT 0)
Thanks guys for the support - it's weird, it's almost like a de-sensitization system, every time I get more news about what may be going on and then the confirmation that it's an 8 and now that it's a 9, at first I feel like I'm going to explode. Then over time it just seems like part of the plan and I get sort of zen about it - let's hope I can keep that up - and I start looking at all the positives, low PSA, negative bone and CT scan, normal (in fact the doc said amazingly normal) DRE.

They took 13 cores and this was only found in one. And this was my second biopsy after my first was negative and they only found this because my Doctor did an MRI first to find out where to target - he says this is in the middle. So I'm still hoping for organ confined.
Posted 4/6/2012 6:31 PM (GMT 0)
You still have options available. Look at this fro the Mayo Clinic:

http://physicianupdate.mayoclinic.org/2011/02/03/surgery-effective-for-patients-with-aggressive-prostate-cancer/


Try and relax so you can do your homework and make the best decision for you. The guys on this site are a great resource. Dont be afraid to ask lots of questions.
Posted 4/6/2012 6:53 PM (GMT 0)
Gleason 8 is not a great score. Gleason 9 is just another number. Not so great, but still just another number.

It is not the end of the world. I am 3 years out, and still reading very low PSA numbers. Aggressive cancers need aggressive treatment. Most likely more than one type of treatment wil be needed.

Gather multiple opinions from multiple disciplines.

Good luck.
Posted 4/6/2012 7:11 PM (GMT 0)
gadget said...
Thanks guys for the support - it's weird, it's almost like a de-sensitization system, every time I get more news about what may be going on and then the confirmation that it's an 8 and now that it's a 9, at first I feel like I'm going to explode. Then over time it just seems like part of the plan and I get sort of zen about it - let's hope I can keep that up - and I start looking at all the positives, low PSA, negative bone and CT scan, normal (in fact the doc said amazingly normal) DRE."

From my experience you will find this is not just a short term zen. At first each piece of negative info is a shock, how can it not be. Once it settles in and you learn about your options you go from uninformed and scared, to informed and able to address it. Human nature. Informed helps you be more comfortable with what you are dealing with. You will never be truly "comfortable", how can you. However you can and will reach a point at which you are peace with your treatment decision.

Attack this thing aggressively and head on and you will persevier. You can do this. Hang in there and it will get better. In my short time dealing with this crappy disease, I have not read about a G9 that was touch to find in biopsy. The fact that yours is playing hide-and-seek and buried in the middle of the Prostate hopefully will play in your favor big time in that it will not have gotten out. Go kill and you'll do great.
Posted 4/6/2012 7:22 PM (GMT 0)

gadget said...
Ok, I was holding it together but I'm not sure I can handle this.

I had a biopsy about 2 weeks ago and the original results were 3+5 = 8 in one core out of 13 with 10% to 15% of the core involved.

I thought it was odd to have a 3+5 and wondered where the 4 was, so I sent my slides to John's Hopkins. I just got the result and they are saying I'm a 4+5=9! with 40% of one core.

To me that SIGNIFICANTLY changes things and I'm really scared now - not that I wasn't before, but at least with a 3 in there and only 10% to 15% I thought I had a shot. My scans were all negative.

I'm only 49 - I know that doesn't really matter, but this is just too much.

When I was the 8, they wanted to do surgery, now I'm really questioning that given the 9 and with 40% of the core involved.

Thoughts?

I'm surprised someone hasn't recommended HT to suspend any further spreading while decisions are being made?
Posted 4/6/2012 7:23 PM (GMT 0)
Gadget,
you went from 8 to 9 and feel bad about the number. I went from 10 to 9 and feel great about it.
It's all a matter of how you look at it.
Sure it scared the hell out me when I was first told that I have an aggressive form of prostate cancer. Probably Like you, I was never been sick in my life. I’m 62 years old and the youngest of 6 kids in my family. All my sibling are living and in relative good health. In fact, I’m going to attend my Dad’s 95th B/D next well during the GFMPH party in Baton Rouge. So here I am, never knew what a urologist or oncologist was until this time last year. Oh and of course Adenocarcinoma, yea that’s a good to remember.
So, why me? Sure I thought of that. But don’t feel too bad, all of us have been there. Just get out there and keep a open mind and heart. Get close to your love ones, tell them how much you love them. You will need their help and encouragement. They will be your best allies. You will get through this. I know I will.
Good luck
Bertb
Posted 4/6/2012 8:39 PM (GMT 0)
My story went differently from yours. I was42 at dx and G7 but was upgraded to G9 after surgery. It has been 6 months since surgery and am doing very well. I still find it hard to read posts here that are negative so most times I just skip them and read the more positive ones. Keep your head. Gather information. And enjoy life. I know it sounds stupid but put a new Outlook on things and look for the positive. Remember it is only a number. Only one core positive is better than 12 regardless of G score (imho). They are numbers too.
My wife keeps me grounded. I don't know what I'd do if I had to do this alone. I hope you have some support also. I might have a reoccurance, I don't know. I may think differently but I doubt it. This had changed my life.
All the best with your decision. I'll be following your posts.
Posted 4/6/2012 9:21 PM (GMT 0)
Gadget, there is lot of good advice above, so take some time to re-read it and let it sink in. As others, I also made decisions based on a lower G score. You have a better idea going in to this and that is great. I talked to 5 different Dr.s to help me choose my path and not a one of them bowed to the other. So basically, thru my own research and some help on this forum, I made my choice. It has to be your choice and really no choice is wrong. Here's from another G9 in the Zero Club.
Posted 4/7/2012 12:13 AM (GMT 0)
Gadget,

It is tough to get a downgrade but as people have said on this thread you did a smart thing in sending those slides to expert pathologists.

I think you are right, the change from 3+5 to 4+5 is significant as is the 15% of a core to 40%. Still, the good news is that the cancer is restricted to one core which indicates low volume prostate cancer.

You still have plenty of options open to you including surgery but seeing a oncologist who specializes in prostate cancer is pretty important.

My husband and I went from biopsy results with no cancer, to a reevaluation of the biopsy to be 3+3 to the post surgery score of 3+4. Each bit of news hits in the gut, but the best thing about this site is that it puts things in perspective. I hope that you find a way to make sense of this and that you find the right specialists to guide you thru this.

Regards,
An
Posted 4/7/2012 2:45 AM (GMT 0)
Gadget,

Of course its not good to get upgraded from an 8 to a 9. But what you have going for you, based on the biopsy, you only have one positive core out of 13. Don't let the significant of the Gleason number overwhelm you by itself. We have many men here with Gleason 8/9 that are actually doing very well for themselves over time. On the other hand, there are several of us with "just" a Gleason 7, that are not doing well. I was downgraded from a 4+3 to a 3+4 (which should be a good thing), and my staging was T2c vs a T3 (which should be a good thing), yet my surgery failed fast, and the subsequent Salvage Radiation failed equally fast, and right now, I am sitting with a fast rising PSA (14 in Dec). I should add, on my 3rd and final biopsy, only 7 cores were taken, and they were all positive ranging from 40 to 90% cancer.

My point, you have to weigh in all the stats. I hope you do well, and you should still have the full spectrum of primary treatment choices to choose from.

Someone above, said something about skipping the negative reports and only reading the positive ones I totally disagree with that line of thinking. With PC, a person needs to know all the angles, positive and negative, because it often runs so different from patient to patient, even if you are dealing with someone the same age and same basic specs. PC doesn't play fair, trust me.

Good luck, as you continue to digest this news, and move ahead.

David in SC
Posted 4/7/2012 2:53 PM (GMT 0)
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.
Posted 4/7/2012 3:03 PM (GMT 0)

gadget said...
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.

Listening to all your developments, I'm reminded of my own DX activities. I still question(to myself) my own results and all that I've been through. To this day I haven't really experienced any symptoms that would indicate my DX, other then the SEs from my treatments.....but then again, I'm grateful to be here today and still healthy(to some degree) and always aware of the possibilities and remain vigilant.
Posted 4/7/2012 3:10 PM (GMT 0)
No way to know if they missed something in other cores. If it were me, I'd contact Northwestern and have them send ALL the slides to Hopkins and have them advise Hopkins it was their mistake, please complete the reading on all slides. I have not heard of anyone only sending the slide they felt was positive. That pre-assumes all the rest of their reading was correct. If it was fair to assume their reading was correct then why bother with a second opinion. What a wrong assumption they made. Their mistake, they should fix it. My opinion at least, but then again I'm aggressive about this stuff.

Also keep in mind it is all subjective. My initial biopsy reading was 3+4, all cores positive, 30% and 40% involvement in the two bases, 5% in all other regions. Hopkins reading downgraded to 3+3 but said 80% left base and 50% right base. Final pathology was 3+4, 30% involvement of the whole gland (did not break out by region). So who was right? Does it matter? The point being - you know you have some aggressive G9 and have to treat for that. Whether it is G8 or G9, go after it aggressively. There likely is some G8 or G7 hanging out in some of the other regions. If you do surgery you'll get that report, if radiation you won't. If that kind of info gives you peace of mind that can influence your treatment choice. Either way, going after the G9 will get the lower grade cancer.

Hang in there. You're learning, dealing with some of the frustration of the system, yet moving through it. You'll get there.
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