Just Starting The Journey

Hello T

Half the forum will be along in a moment to explain options and pro's and con's to you but I'll kick off by saying that if you're going to have PCa, Gleason 6 is what you want to see as it leaves MANY treatment options open to you and the ability to trade off against the probability of side-effects, quality of life etc. Be VERY optimistic, the curative rates at G6 are way up into the 90% range at 10-15 years and beyond; you don't have to give up everything to achieve that either.

I know one thing that they are all going to say "get a second opinion on your slides from Dr Epstein at Hopkins or Bostwick Labs". For a $200-300 it's a no-brainer, these guys are the world experts (blindly assuming you're in US of course).

Post Edited (Paul65) : 10/22/2015 7:17:45 AM (GMT-6)

Tee, you're in a great place for treatment, Emory has one of the top programs in the US. At G6, if confirmed, you've got great options, pretty much everything out there has 'cure' attached. Or, you could go for Active Surveillance, and there will be those along to tell you all about how that works.

On another note (and you may have seen this yourself)...

You have many options ahead of you, ranging from AS to RT and Surgery with a good few in-between. One thing that I have concluded from reading a gazillion posts here is that it helps to be introspective for a while and ask yourself "what kind of person am I?" and "what do I really value?". I say this because the arguments on AS go back and forth and ultimately seem to boil down to 'waiting to avoid side effects suits some people very well, while waiting on cancer drives others nuts'. While the Radiotherapy vs. surgery debate seems to boil down to salvage options and "I can cope with this inside me (still) or not".

Then there are all the nuances in between and pro's and con's of all the approaches to consider of course... but it seems to me, reflecting honestly upon your own mind/personality going in might help you 'filter'. Island Time appears to have been on this self awareness journey and his pain and bravery have been palpable.

Don't mean to ramble or be pious ... mine is just a 'view from the bar'... I have yet to tread the path behind you and the brave souls here.

Oh and I for one wish Tall Allen was my dad :)

Paul

Tee,

I can only reiterate that all options, other than focal ablation, are open to you. Your biopsy results (if confirmed), PSA, and "6mm nodule" (which would put you in stage T2a) all put you in the "low risk" category. Some AS programs would take you, some wouldn't. The nice thing about your diagnosis is that it gives you breathing room, and plenty of time to investigate. I hope you will take all the time you need to make the decision, including some time off to let the shock of it dissipate somewhat. If it takes you a year, you should probably get a couple of PSAs and a follow-up biopsy before continuing.

There is not one objectively "best" decision, only a best decision for you at the time you make it. Paul65's advice is excellent (although I am now worried that he may have Oedipal urges ;-) )

- Allen

Thanks everyone! I met with my URO for three hours yesterday. He has diagnosed T1c as the stage of the cancer and places me in the low risk category. He told me if I wanted to try AS, he would work with me but he did not recommend it. His reasoning was that he was concerned about the "volume" of cancer in my core samples (6 out of 13 ranging from 5% to 75%). Also, that my prostate was somewhat larger (47.5cc). We discussed the pros and cons of radiation versus surgery. At this point, my next step is to meet with a radiologist and a robotic surgeon to get their perspective - hopefully leading me to make a choice.

Now, here's a question that will probably be a hot topic (I'm sure it's been discussed already) - of those Forum members who submitted their slides to Epstein and/or Bostwick, how many actually changed their choice of treatment based upon the second opinion on the slides??

In other words, in looking at my Gleason score (3 + 3 =6) - I doubt Epstein or Bostwick would downgrade any of the cores to less than Gleason 6. I feel the only thing they might do is either agree with the pathology given by local pathologist or possibly upgrade a few to a Gleason 7. Either way, in my particular situation, the choice seems to fall between AS and treatment - if I choose treatment, the second opinion of wether or not a few cores are upgraded to 7 by Epstein/Bostwick seems to be a moot point.

OK, I'm sure I'm not looking at something right........

Well, everyone's advice on sending the slides in for a second opinion is exactly right!!! Listen to this horror story........

If you look back a couple of posts you'll see the results of my biopsy given by the path lab at Wellstar Kennestone Hospital in Marietta, GA - considered a Cancer Center of Excellence. I took everyone's advice and sent the slides to Bostwick for a second opinion. I really was not expecting to see much difference. Well, shame on me!!!!! Most slides came back upgrading the amount of cancer in the six of twelve that were postive by 10 or 20 percent. But the clincher is the #6 biopsy where local lab said 5% cancer with Gleason score of 6 (3 + 3). Bostwick's opinion on that sample was that it was 90% cancer and a Gleason 7 (4 + 3)! Not only that, but that all of the 90% is made up of 4's........

I immediately called my URO and raised hell - how could they be that far off??? He called me back next day and said he had thrown it back in the lab of the director of the lab but that he felt reasonably sure it was a "transcription error" on part of admin at the lab. So far no one has verified that, but I have meeting with oncologist and robotic surgeon on Friday morning and hope to get some answers.

So, if you're reading this and wondering if it's worth sending slides for second opinion, the only thing I can say is "You bet your ass!". AS is off the table now and I would not have known that had I not got a second opinion on the slides. I still plan on making a formal complaint to "someone" at the hospital - this should not have happened. My percentages in Partin table have changed dramatically as a result of Bostwick's readings.

Will be making a decision very soon on which way to go.

Reading PCa slides is very difficult. That is why men on this board universally say to send to Epstein and Bostwick. They are the demonstrated best at this as you have learned. Sounds like the uro is doing a little professional courtesy covering knowing they should have been sent to the experts at the outset.

Regarding Tall Allen's advice to get several opinions from the different practitioners, I wholeheartedly concur. My uro required that of me and altogether I saw three uro-surgeons, two radiation oncologists (one for permanent seeds and one for HDR) and one medical oncologist. Coming out of these meetings provided me with excellent choices and made the treatment decision easy.

You have a dx that gives you the time to research effectively before deciding. I too am in Atlanta and would be happy to assist and provide referrals.

I have to second, third and fourth the advice to take a mentary breath and look at the various RadioTherapy options Tee. Consider each, the treatment pathway and the side effect profile.

It is a simple truism that many Urologists are disposed toward recommending Surgery and Radiation Oncologists toward recommending RT. Neither is necessarily right nor wrong in their recommendation; the pro's and con's are for you to understand, judge and base your opinion upon.

Do it for your prostate and all those years of service it gave you; you owe him that

Post Edited (Paul65) : 11/5/2015 12:37:18 PM (GMT-7)

So sorry to hear about your upgrade. For what it means, I had the same thing happen--from G8 to G9. But you had a different degree of change in your case. Man oh man!

So, AS is off the table now, but lots you can do. I echo the recommendations above--find the best people you can in the various different treatment options and learn as much as you can. Surgery and several types of radiation can all cure you. The key is talking to someone that specializes in each, which will require a bit of work on your part but we can help with that.

Sorry you got the kick in the head, but you can still do fine and that's the important thing. Good luck to you and let us know how we can help.

Well, Tee, now you're on to the next phase: get ready. Walk and exercise as much as you can. Eat a healthy diet. An occasional quart of ice cream or a few adult beverages are OK--even recommended. Have as much sex as you and your partner can manage. If you read "my story" linked in my sig file, somewhere in there is a shopping list of things I and others found useful.

We'll be here for you on the other side.

To your last anxiety about pathologists? It is my understanding that sectioning the whole gland is a lot less challenging than doing biopsy slides. First of all, instead of a dozen samples, they have hundreds.