Just diagnosed.

Hi. First off all, sorry about your news. You seem to be handling it very well. Perhaps a benefit of being a military man.

I'm not sure you're an ideal candidate with your scores as I assume you'll also need radiation. I may be way off base on this but other here with similar scores will advise. Perhaps surgery first is the prudent course, I don't know.

I ad surgery and if it's any consolation, I can tell you that I have absolutely no issues with urinary function and I have sex and get complete erections with and without meds.

Not sure where you got those numbers. It's true many experience setbacks, but even in those cases most regain ability to get an erection within a year or two at most.

If you do have surgery, what is critical is finding the best possible surgeon. In my opinion, and that of many others, the amount of surgeries a surgeon performs correlates to his skill and thus his chances of sparring the nerves needed for such things.

If you decide on surgery, do your research and find the best of the best in your area. That's what I did.

You won't lose it. But I agree with part of what your doc says, curing is should be goal #1. But again, I'm not sure surgery is the course of action for someone in your shoes. Radiation might be. Just know that with radiation often comes HT and that too impacts libido for a while and the radiation itself can also cause ED in some cases.

Good luck.

Hi Chris
Sorry to hear of your recent diagnosis, it's a real shock early on, it's overwhelming and hard to work thru it all in the beginning. I am your age and just had my prostate extracted thru a little hole above my belly button and good riddance to it I say. You will need to wait to see what next round of tests show before seeing what your options are, as far as not seeking a cure if it's put on the table, for me it was a no brainer, I have three kids, a beautiful understanding wife, a loving extended family, heaps of mates, a good job, a car I enjoy working on, a boat that I go deep sea fishing in, a lawn that looks good when I mow it, and a great big country to explore when I get the time!
So yes when I weighed up the options, it took all of two seconds after I was told I have a good chance of a cure and a possibility of side effects which can be quite successfully treated. My doctor said because of the volume of cancer and location he would not do a total nerve sparing op, he said he would save about 50% on each side if all looked good. post op that is what happened a partial nerve sparing, with clear margins and a good chance of long term cure, but who knows first rule with PC > "there are no rules" if you look up YANA you can read about a whole lot of guys and the path they chose. I wish you the very best on your journey.

Hi Chris,

Sorry to hear about you news but I am happy that you are posting here - I think you will get plenty of help.

A good start might be to read Walsh's book on prostate cancer: "A guide to surviving prostate cancer". It helped us tremendously.

Your PSA score and your Gleason Score are high but it is still important to look at all the options you have. Surgery may not be your best option - is could be a combination of seeds and radiation. Or surgery and hormone therapy. I don't know what the answer is but the book will help you ask the right questions. Fom our exprience, asking the right questions made all the difference as it helped us tremendously in speaking to doctors and making decisons.

Wish you and your wife all the best,
An

Welcome Casper319.

As a fellow G8/9 I feel your fear, that diagnosis is a scary one. I'd urge you do find a few different specialists to talk to and listen to the guys here who had high Gleasons for their experience. Nerve sparing surgery gets a lot tougher with a high Gleason/large tumor which appears to be your case with 10 of 12 positive.

I also used several books for references while researching, Meyers, Strum and Walsh were my favorites.

My wife felt as most of wives that that have posted here feel, they'd rather have the man they love with them than share a few more years of sex only to loose him. BTW sex was great even with a limp willie, turns out a man can orgasm even without being "up" and the wife has always preferred alternate methods for herself. (sorry tried to keep it non-graphic)

BTW I elected to gamble on open surgery, initially to de-bulk the tumor with a slight hope of a curative path, so far so good and things are dry and functional, albeit with a much higher chance of recurrence than the lower Gleason guys. Your much higher initial PSA and apparently larger tumor would have caused me to rethink that choice and I would urge you to find the choice that offers the best chance for you.

Best to you on your path.

Casper319 said... I read and hear that 80% of all men who have ths surgery are impotent or Erectile dysfunction. Hi Casper, and welcome.  I'm sorry to hear about your diagnosis.   I wanted to quickly address just one of your questions/comments...the one copied above.   When you are in the "drinking from the firehose" situation that is common to many newly diagnosed patients who feel overwhelmed with new information, the statistics run at you so fast they are hard to fully comprehend.  This one is a little more dynamic; meaning, it really needs another dimension of time added to fully understand the full outcome.  I'll try to "add some color", as the saying goes; in other words, more fully explain (in relatively simplified terms).   The neurovascular nerve bundles which enable an erection are wrapped around the prostate.  When the prostate is surgically removed, the doctor examines the possible spread of prostate cancer (PC) up the seminal vesicles and/or outside the prostate capsule.  If it appears that the cancer is contained in the capsule, the surgeon can usually do a "nerve-sparing" surgery and carefully dissect the nerves from the prostate and either fully or partially save them.   There are nerves on both sides, so they could be saved only on one side, or “bi-laterally.”   The individual patient’s anatomy is also a variable factor.   The disruption of the very “gentle” nerves during surgery very often causes temporary erectile dysfunction during the recovery process, although some men (small percentage) come out of the surgery with no difference functionality.   Many doctors give the caution that it might take a year or two to recover, but this is often a conservative estimate and most recover within the first year.   Some recover completely, and some recover with somewhat less capability.   Many end up using one of the Viagra-like pills to improve performance during the first year (or more), with some perhaps smaller percentage using the pills longer term.   A small percentage struggle for extended periods regaining erectile function.     So, your reference of 80% men with ED right after surgery is probably very accurate, but after a recovery period, the percentage drops for most men.  One thing is for sure, erectile performance (unassisted) after surgery is no better than it was before...you are getting to the age where many men begin to lose performance naturally due to aging.   Unfortunately, with Gleason 8’s and 9’s, you are at a higher risk for PC escaping from the capsule, which decreases the likelihood of a full bi-lateral nerve-sparing procedure.   Also, because of the high Gleasons, if you have surgery, there is also a higher likelihood (than the typical lower-risk patient) that escaped PC may have taken root in your prostate bed, in which case a follow-up prescript ion of radiation may be in your future.   I wish you the best, and encourage you to immerse yourself in the next few weeks to learn all that you can about prostate cancer so that you can directly participate in the decision-making process for treatments.   best wishes… Post Edited (Casey59) : 4/13/2011 8:12:29 AM (GMT-6)

Casper,

Welcome to the group. I must confess, you are starting out with a very serious diagnosis. But despite your numbers, there certainly is hope.

It probably will take a muti-protocal in treatments with your situation.

Often with your number, surgery might be ruled out, unless the doctor feels that removing your prostate will debulk the largest portion of your cancer.

I would not think that nerve sparing would be a credible option in your case, but possible. A wide margin surgical approach would be more the norm, because there could be a lot of danger in leaving the nerve bundles.

Another approach would be a combination of HT and Radiation as your primary treatment, bypassing surgery.

You need a good surgical opinion, a good radiation opinion, and a good medical oncologist opinion before deciding anything in my opinion.

We got guys here experienced with all options that you will face, and we will be happy to assist you and share experiences and information with you.

Good luck, as you continue your journey. We are here for you, and want you to feel at home.


david in sc

Casper, If I may ask a question, was this your first PSA test?   At age 50, you can't be retired from the Army for too long.  If you did 30 years of service, you may be freshly out of uniform.  While you were on active duty, was PSA testing done during your annual physicals?  Maybe the Army doesn't routinely test PSA until the service member reaches a certain age.  My son-in-law is just 34, but I think his annual Air Force physical includes PSA testing.  Just curious.  Perhaps, since you're now 50, this was your first PSA test?

It's frequently recommended to get a second reading of the biopsy slides from one of the nationally-renowned labs.  You wouldn't need a second biopsy, just another look at the slides from your original biopsy. 

  

Casper, welcome and best wishes for a long satisfying life.

Our stats are not much different, though I am a few years older. You have treatment options, but must understand that we are in the "advanced" category and must hit it hard usually on multiple fronts. Many surgeons will shy away from your stats because they will expect positive margins which will then require radiation therapy. Thus why risk the side effects of surgery and radiation? That was my case. My urologist and oncologist both agreed that surgery was not the best course for me, Instead I went with two forms of radiation (external beam IMRT and internal HDR brachytherapy) and hormone therapy or ADT3. So far so good and very little effect on my life at this point.

My advise to you is three-fold. First, research and read everything you can. The people on this board will give you great sources. In addition to Walsh's book, my favorite read was "Beating Prostate Cancer with Diet and Hormone Therapy" by Snuffy Meyers, a very noted oncologist that has fought his own advanced prostate cancer for some 10 years now.

Second, seek a medical oncologist that knows their way around prostate cancer, preferrably a specialist. Most urologists are oriented to surgery and most radiation onciologists ara oriented towards radiation. The medical oncologist does neither, but manages the chemical aspects like hormone therapy and chemo therapy. You need an oncologist on the team now.

I was fortunate to have an urologist that was oriented to me and participates in all my care. He advised against surgery because of my stats. He guided me through the HDR with a rad-onc, who together, have treated over 1,000 people with the HDR method. I also have a great med-onc that covers the big picture and is thinking ahead as to what to prepare for. He is glad I did not have surgery as he is certain it would not have been curative in my situation. In otherwords, I have a very effective team that collaberate to prescribe the best treatment for me.

Third, please understand that this is serious business, particularly with the apparently high numbers you (like me) present. Don't take this lightly, but don't freak out either. Survival statictics are better for PCa than almost any other cancer with 5 year rate at nearly 100% and 10 year rates above 85%. But with high stats and a young age, you will need the very best of doctors that have treated other men at your stage.

Best wishes and let us know how to help.

Hi Chris, there is nothing i could add to the advice you are getting, it is excellent. I would point out to pay special attention to the posts by John T JNF and
Fairwind. They get to the point I think we all picked up in your post. I say this with respect. Chris with your stats at your age, Im not sure you realize, that you have a very dangerous cancer going on there. When your doc says you may have to lose your prostate, that is the understatement of the decade. I doubt surgery wiil be recommended, and if it is it will be for debulking the cancer and radiation will do this also. If by chance you get a surgeon who will, no way will your nerves be spared. PCA is some time referred, by those with less aggressive cancer, as a bump in the road, a play on words , indicating the bump felt on the finger wave, being a military man you know that teminology, and they are imo right. Chris the cards you have been dealt here are not in that category. I dont think I,m over stating the case here. Having said that, you have much options to keep you alive a long, long time. and break thrus are happening every day, these are not just encouaging words, these are facts grab on to them.

Wow. I really didnt expect this kind of response. I thank all of you for your comments and many of them really hit home. I just found out I had cancer 4 days ago and I just completed my bone scan today. My next Appt. is on the 20th with my uroligist. I'm glad I came here because theres nothing better than hearing it from the horses mouth and most you all have been there, done that. I havent...and either have most the doctors who treat us.

I have to be truthful....It really hasnt sunk in that I have cancer yet. I guess because Im not in any kind of pain or anything. I have a little problem urinating, but thats it.

I can tell by some of the well written comments here that you all are very intelligent and very knowledgeable in this area. I have learned many things in just a few minutes spent here on this forum....from keeping journals, to researching different doctors and really wondering if my urologist is correct in thinking I need my prostate removed. He did say this before I had a CT or bone scan so maybe he will think differently.

I'm sorry I didnt respond to each post...they were all great advice and I appreciate the time you have all spent to fill me in on whats to come. Me being the one finger typer I am it took me 20 minutes to do just this one. LOL.

I am going to take your advice and do plenty of research...I also realize the most important thing is to live longer...sex or not so I guess I was being somewhat of a drama queen there.

To the poster who asked the question about PSA test. It was my first one at age 50. It was part of my 50 year physical the Clinic on base wanted me to do. I dont believe its required to do it any earlier if you come up OK on the digit rrectal exam which I had at age 35 and 40 and they were OK. My first one was 94 and the PA told me it could be a false positive so he gave me another one and it was the sams so he called a urologist and he told him to give me 2 weeks of antibiotics and recheck. My 3rd was an 84. I dont think they require a PSA in the Military until you are 50. But both my sons are in the Army and I will advise them to do both the DRE and PSA test at 40 or earlier since they are now high risk. My father had bladder cancer but my urologist said that didnt matter. He didnt get it until he was 77 anyway.

Once again, Thank you all...very good advice and I will give you any updates when I get them... Now its time to get drunk! LOL

Just an update. went to see my Urologist on 20 April and he told me the bone  scan was negative and CT scans were good.  No spread to any lymph nodes but he said there were blurry spots on the seminole vesicles he wasnt sure about.  hes still recomending surgery but he also told me he was leaving the State and relocating and informing all his patients. he referred me to a Dr Joseph at the University of Rochester. They have a large Urology center there and this guy I guess has done over 4000 robotic surjuries and he says hes one of the best.

He also said there was a small spot on the bladder he wasnt sure about and the new Urologist may want to go in and check it out.  Hopefully my insurance will cover this guy and he will be calling me back soon. We have limited urologists in the area here in Watertown, NY and they dont seem to want to stay long. We do have 2 cancer treatment centers and 3 urologists left in watertown so I may see them for follow up after the surjery.  Rochester is just too far away for me...5 hour drive.  Thats OK for the surjery I guess, but not too good for follow up appointments. I still dont have a clinical stage yet and when I asked my doctor he seemed clueless. He kept telling me CT scans are not very accurate and that I have a 50% chance of cancer spreading around my prostate but they wont know until they go in for surgery.  Does this seem right....cant they do a more thorough exam like an MRI? Im glad hes leaving by the end of the month because quite frankly, I think the guys a quack.

 

Hi Chris, ive read through all the threads above and probably much like the other guys was waiting to hear the results from your bone scans and also your clinical stageing.VERY PLEASED !!! that your showing no bone mets or lymph node envolvement.You will have alot of desicions to make about the treatment you choose.It looks like surgery is an option that you can take to remove the prostate.I was diagnosed last year age 44 pc but it had already spread to my bones and nodes so surgery just wasnt an option.Im being treated with the hormone blockers so my once active sex life is now almost zero ! Frustrating to start with Chris but you DO GET USED TO IT.......My opinion is SAVE YOUR LIFE FIRST !
Yana is a great place to compare your situation as you can track other men with similar stats.
THE VERY BEST OF LUCK..