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Just diagnosed with PC, Going to Dr. tomorrow to discuss

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Posted 8/29/2013 7:58 PM (GMT 0)
54 yrs. old.  I just found out yesterday that 4 of 12 were positive.  All on one side.  My PSA has been at 13 last two (2 months apart) tests.  No symptoms.  Dr. said my prostate looked small and nothing showing on ultrasound during biopsies.

Meeting with him tomorrow afternoon.

A list of questions would be most helpful

Regards.

Posted 8/29/2013 8:04 PM (GMT 0)
Hello Artmac,

Welcome to the forum. Sorry you need to be here but glad you found us.

That PSA is high for a guy your age. You said you got the same PSA reading twice -- was there a course of antibiotics between the two tests to see if some of that PSA was caused by an infection? When your doctor told you that you had two positive cores, did he mention a Gleason Score to go along with them? (A Gleason score is usually written as a number in the range 6-10 plus two more numbers 3-5 in parentheses that add up to the first number. My Gleason score, for instance, is GS 9(4+5). Hopefully yours will have smaller numbers because the higher the number the more annoying the cancer is to treat.)

If, as is possible, your doctor talks about surgery, be sure to get him to talk about which other forms of treatment might be appropriate for you. Urologists are generally surgeons and they have a surgeons point of view. Make sure he knows that you plan to talk to doctors from a number of specialties before you commit to a decision. Depending on what he tells you about your biopsy results you will have more or less time to make a decision, but you will always have some time, and usually you will have enough time.

Ask about getting a second opinion on your biopsy slides from a world-class organization such as Johns Hopkins or Bostwick labs. My Gleason score changed on a second opinion and that second opinion may well have dramatically affected the course of my treatment.

If you have someone who can go with you that is often a good idea. Lots of men are so stressed out during that initial consultation that the come out remembering only on word -- cancer. It's a good idea to have someone else there to take notes -- asking the right questions doesn't help much if you can't remember the answers.

Good luck. Let us know what he says.
Posted 8/29/2013 8:22 PM (GMT 0)
artmac,

Sorry about you Dx but welcome.

Do you have more detailed stats such as Clinical stage (e.g. cT1c, cT2a, cT2b), Gleason score, presence / absence of perineural invasion, etc.? Be sure to find out and get a copy of your pathology report.

If your urologist is proposing / you are considering surgery you should ask the following questions but go in with the assumption that, chances are, you can do substantially better than whoever it was who happened to diagnose you:
  • Do you do open or robotic surgery? Why?
  • How many surgeries of this type have you done total and in the last year?
  • What are your positive surgical margin (PSM) rates stratified for patients who are pathological stage pT2 and pathological stage pT3?
  • How many of your patients are pathological stage pT2?
  • What are your patients' continence rates at 3mo and 1 year and how do you define continent (1 pad or no pads)?
  • What are your patients' long-term potency rates?
  • What type of a penile rehab program you you offer?

Get an expert second opinion on the pathology from somewhere like Johns Hopkins or Bostwick labs.

Also strongly recommend that you obtain and read ASAP (preferably before your consult) a copy of Patrick Walsh's Guide to Surviving Prostate Cancer.

Good luck!
Posted 8/29/2013 8:30 PM (GMT 0)
Hi and welcome, not good that you have to join us, you will find this a great place of understanding people.
I was you back in May of this year, 53 years old, no symptoms other than a sneaking PSA, near normal DRE, that was until I had a biopsy, Gleason 9!!.
I under went RP 13/8 and I would just like to say that there is life on the other side of this.
Regarding questions; you need to know what your gleason score is, basicly how aggresive your cancer is, this will determin what course of treatment is most suitable for your case.
Educate yourself about treatments, there is no rush, no 2 cases of PC are same.
Wish you all the best
Posted 8/29/2013 8:57 PM (GMT 0)
if he is a surgeon, here are sone great questions courtesy of Gedman:

www.healingwell.com/community/default.aspx?f=35&m=2637622#m2647572

try to bring a loved one with you.
Posted 8/29/2013 9:06 PM (GMT 0)

First of all thanks everyone for the replies.  It does feel good here in a bad situation.

Peter, to answer your question about the PSA, this has been going on for a while.  I had a 11 then antibiotics and an 8.  Then had a 13 and antibiotics and another 13.  That is when he did the biopsy.

Another tidbit, my father always had high PSA's and they even did surgery on him and found nothing.  My son (24) had a PSA done for pilot's license and his was a 4 if I remember correctly.  So, I wasn't concerned about the high PSA until the biopsy of course.

David, yes he is a surgeon.  Thanks and my wife is going with me.

FYI - addl. information.  The doctor is a personal friend (I coached two of his sons in football and we have college season tickets together) so there is a level of trust but I also will have a level of distrust per all of your input.

I really appreciate the questions and suggestions to ask tomorrow when I meet with the Dr.  Please keep them coming.

Regards.

Posted 8/29/2013 9:14 PM (GMT 0)
As was mentioned the biopsy report the pathologist prepared (you should have a copy.)
As was mentioned the Gleason Score.
You want to know the size of your prostate.
Confirm that there was no nodule felt during the DRE.
Good luck.
Posted 8/29/2013 10:04 PM (GMT 0)
Welcome artmac. Wish you did not have to be here since the price of admission is prostate cancer but you will find a quality group of men with PCa and spouses, children etc who support them.

In case you did not notice it, see the very post on the table of contents that has an excellent compilation for newly diagnosed PCa

www.healingwell.com/community/default.aspx?f=35&m=2652250


To augment what Peter said about taking notes, this won't help for that immediate session but for subsequent sessions, you can purchase a USB drive that doubles as a recording device for $20 on PulseTV.com.

It does not have to be plugged in to record, simple On/Off switch but when you get home the replay quality is excellent when you plug it into your USB drive.

Having a spouse or friend there helps too with the list of prepared questions. While you and the doctor are discussing them, they will branch into a different order than what you had written down. So the partner can help at the end by reminding you of discussion items not yet covered.

Good luck and do give us more metrics so we can know how well your situation matches what we may be familiar with.

LupronJim
Posted 8/29/2013 10:10 PM (GMT 0)

artmac said...

FYI - addl. information. The doctor is a personal friend (I coached two of his sons in football and we have college season tickets together) so there is a level of trust but I also will have a level of distrust per all of your input.

If he is a friend he will understand you asking for his hard outcome metrics, getting other opinions and potentially choosing to have the surgery at a national center of excellence. If you end up traveling to have the surgery done by someone at Hopkins, Cornell, etc. who has done thousands of these and has substantially better outcome metrics than his, that's not like you slighted him to just go across town to someone else.

I didn't have a urologist when I was diagnosed and I saw two excellent local guys one of whom suggested - with no prompting from me - that I consider going to a national center of excellence if that would make me feel more comfortable with my chances. That's what I did (actually I had consults at three national COEs and chose surgery at Hopkins), but the local guy who proposed this now is and indefinitely will be my local urologist.

You get one shot at this. While virtually no one dies on the table or has serious intra-operative complications, the variability in oncological outcomes (actually getting all the cancer out) is stunning... good surgeons may leave some behind 8-10% of the time in the best case scenario (pT2) when cancer is still confined to the prostate! By contrast, for the best handful of surgeons in the world this is below 2%.
Posted 8/29/2013 10:19 PM (GMT 0)
artmac,

Sorry you need to be here. Please see the links in my signature below that I highly recommend for anyone newly diagnosed with Prostate Cancer.

This forum is a great source of support and information (but not a replacement for good medical professionals). We'll help you in any way we can.

-Gedman
Posted 8/30/2013 12:21 AM (GMT 0)
Sorry to hear about your diagnosis, but you landed in a good place. There are lots of well-informed people here who are very generous with their knowledge and empathy.

You've got some very good recommendations here already. Be sure to discuss all your treatment options, including whether active surveillance is an option.

You should also be sure to get a copy of your pathology report. You'll find that there's a lot of useful information there when you learn more about this disease. In particular, you'll want to know your Gleason score and what percentage of those core samples tested positive.

You might also ask if he can refer you to a radiation doc who does brachytherapy and beam radiation so you can learn more about your treatment options.

Also, the question of how many prostatectomies he's performed is a great one. He might be the nicest guy in the world, but that's no substitute for experience. This is an area where you want someone who's very, very good.

Finally, don't let this stuff freak you out. You'll be ok. This is a very treatable disease, and you've caught it early. Hang in there and keep your sense of humor.

Good luck with your path going forward, and let us know what happens.

Jonathan
Posted 8/30/2013 1:42 PM (GMT 0)
Once again, thanks everyone. I want to say this more helpful than you know but I know all of you have been here and know how much help this is.

It is funny, everyone is advising not to "freak out" but I guess I am lucky in the fact that I am not worried at all just want it to be over with and move on with life/family. I don't know if it is a positive attitude or I am just too dumb to know what is about to happen. Your posts and today may open my eyes/mind a little to the enormity of this journey.

I will see my Dr. today and now have some great questions and more knowledge than 24 hrs. ago.

I will post my journey with all of you great people as it develops.

Regards.
Posted 8/30/2013 1:57 PM (GMT 0)
artmac, welcome aboard. you have already been given a myriad of great advice, I can't think of anything at this point to add value, but glad you found us.

on the "freaked out" aspect, not all men freak out, and not all men are "worriers". I am in that group, despite all I have been through in my demented 5 year PC journey, I am simply not a worrier by nature, not about anything in my life.

I think you will do well at this first meeting, you may miss a question or two, just the nature of it, but you can always add them to the next meeting if needed, or perhaps the doctor will be the type that will correspond with you via e-mail, as my oncologist does.

Good luck, we are here for you

david in sc
Posted 8/30/2013 5:09 PM (GMT 0)
Artmac,
All good advice given here. Be sure to get a second opinion from both a radiologist and a brachytherapist who have no relation to the doctor giving the original recommendation. Doctors get a lot of business from referrals from other doctors and are not likely to cut that business off, which will happen if he consistently gives a different recommendation on a second opinion.
Posted 8/30/2013 8:40 PM (GMT 0)
Artmac, Check back after your appointment and let us know if you have any questions. You've found a great group of people here willing to listen and help. Educate yourself my looking at the "newly Diagnosed? Read this first" link at the top of the threads. Information will keep you calm as you are now!

Mike
Posted 8/31/2013 1:37 PM (GMT 0)

Artmac, you said...
just want it to be over with and move on with life/family.

We've all been there for sure. Hope it works out for you. But it's best to move on with you life anyway. Sometimes it takes a while for it to all be over.

Let us know what your friend the surgeon told you.
Posted 8/31/2013 11:48 PM (GMT 0)
Artmac, You have wonderful friends here. Speaking as a wife who has been in the trenches with my husband, Pete, for twelve years....I can only tell you from a wife's point of view. TALK to your wife.....tell her your thoughts and it will bring you closer.. Men sometimes don't express their fears, I know Peter doesnt..but I feel so much happier and helpful to him when he does talk to me. Together you can beat this. Di
Posted 9/1/2013 1:14 PM (GMT 0)
HEY njs, that is an excellent reply. I only wish I had asked those very questions. The "Surgeon" I had was wheeling me into surgery. While I was doped up, he informed me that I was the second person he had used the Da Vinci on. Things went very badly. Gutted like a trout the next morning because he cut something he shouldn't have. No nerve sparing. He didn't get it all. That was in Aug. 2005. I'm stage 4 now. I am convinced that this guy is responsible for killing me. My family Doctor agrees with me.
artmac, get a second and 3rd opinion. Research your doctors and get the best you can. Doctors are just like every other profession, there are some excellent ones, and some very bad ones
Posted 9/1/2013 2:55 PM (GMT 0)
Ditto as to John T's advice, this is never a simple slam dunk decision and never comes with guarantees. Ask yourself when is it stupid to get a second opinion on either a life and death decision or huge quality of live event??? (never is the correct answer)

If you wish to have some fun ask the doc some questions like do you mind if I get a second opinion on my own doings (not his buddy friends system)??? How he reacts should tell you plenty about the type of person you have. Some docs go bonkers when hearing that (fyi). Ask him to run a nomogram and Partin tables on your stats, and tell you what those statistics reveal (cure rates?) This is seldom done enough and patients are usually given more of a sales approach of how easy it all is and no problems. Know thy odds up front!

Here's a question that usually is not asked: how do you decide how many lymphnodes to sample or do you sample any lympnodes during the operation??? If there is a huge stumble on answering, you may ask yourself why is that and seek your own answers. Not against any treatment, just learn all the pluses and minuses before you commit, it is a one way deal. Never Better had an experience from hell which could happen with any treatment, choose your doc wisely. Hope you realize there are still no guarantees in this. Best to your results and shopping.
Posted 9/2/2013 12:02 PM (GMT 0)
If, as is possible, your doctor talks about surgery, be sure to get him to talk about which other forms of treatment might be appropriate for you.

I strongly concur with this sentiment.
Posted 9/2/2013 3:43 PM (GMT 0)
Welcome to our world, sorry you need to be here.
I can't add much but I will second the thought that you consider all treatment options. I thought I was going to be stuck with surgery but ended up having successful radiation treatments.

Keep us updated on your progress.

Andrew
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