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Posted 7/28/2013 12:20 PM (GMT 0)
I've already gotten so much information from reading the posts here, I need to say thanks!

My MD suggested a visit to a urologist during a checkup, even though my PSA wasn't that high, and my symptoms were pretty mild - reduced flow and occasional bladder pain. The urologist was able to feel a small lump, and did a biopsy a couple of weeks later. Out of 12 cores, one was a gleason 7, and one a gleason 9. I was caught totally off guard. I'd assumed that with light symptoms and a PSA that wasn't too high, active surveillance would be my solution.

Now I'm waiting for Da Vinci surgery, reading up on what to expect, and doing my Kegel excercises. I just wish I could get that gleason 9 out of my mind. The results were reviewed by two pathologists, so I'm assuming they're correct.

The best case would be a four hour drive for the surgery, another drive in a week or two to get the catheter out, then begin healing. I'm really concerned that it won't be so simple with that gleason 9. I guess it's wait and see.

Again, this site was great to find, and the posts have already been really helpful to read. Thanks

Posted 7/28/2013 12:53 PM (GMT 0)
Hello Harry,

Welcome to the forum and the Gleason 9 club. Sorry you need to join but glad you found us.

Since you have been reading our threads here you probably know the questions we will be asking you next: How old are you, Harry? Have you looked at options other than surgery? or in addition to surgery? Have you talked to doctors with other specialties to get a wider range of options? to a medical oncologist? stuff like that... Most men are diagnosed by urologists and urologists are surgeons. Surgery is a good option in many cases but never the only option. It's usually a good idea to have some other doctors on your dance card.

You mentioned the four hour drive for surgery; do you live out in the sticks? As another Gleason 9 I can tell you that your two-visit scenario -- one for surgery, one to get the catheter out -- seems optimistic. Usually with us Gleason 9 guys these days they like to combine treatments. The addition of a period of hormone therapy appears to increase the odds that surgery or radiation will succeed. You haven't mentioned hormones; has you doctor talked about them?

So, like I said, welcome to the forum and to the Gleason 9 club. The stupid-looking hats are on back-order but the microwave works and the popcorn is free.
Posted 7/28/2013 2:11 PM (GMT 0)
Explore all treatment options.
Posted 7/28/2013 2:35 PM (GMT 0)
To Harry R:

   My first diagnosis was close to ten years ago - so there are many more treatments available now than there were then. Do Explore them all!!!! You mentioned your MD and what seemed like a urologist for the first time. You didn't mention anything about an Oncologist!

   Explore ... and take advantage of all professionals available.

   Best wishes to you.

Posted 7/28/2013 3:36 PM (GMT 0)
Hi Harry, as another Gleason 9, I'd like to welcome you here. Not that you want to be here, but given the cards you've been dealt this is a good place to be.

The Gleason 9 diagnosis also floored me. When I was awaiting my results I sort of expected the results to come back positive. But I didn't expect them to be high risk. Nor did I even know about the different categorizations back then. (One of the things that I've learned here only recently is that higher Gleason scores produce somewhat less PSA.)

It sounds like you're on the surgery path. If you've done your homework and know that's the way you want to go, that's great and I wish you success. On the other hand, if you've only spoken to your urologist at this point, keep in mind that they are surgeons by training and they typically recommend surgery without really considering the other options. That may not be true of your urologist, but something to consider.

For G9s like us, it's also typical to use combo treatments, so I would try and get a handle on that if possible. I go to an oncologist that specializes in prostate cancer (Dr Lam here in LA) and he was the person that made me aware of all my options and how to combine approaches. His philosophy is that as a G9 I have an aggressive cancer and we want to treat it aggressively.

Despite the G9, I'm sure you'll do well. Although I still have months of HT ahead of me, in my mind I have no doubt that I'll be cured. And in the event that my positive thinking has led me astray, I know I can control this thing for many, many years. Good luck and do keep us posted!

Michael
Posted 7/28/2013 3:37 PM (GMT 0)
Hi Harry, and I'll too extend my welcome. Weekends are a little more quiet here, but over the next few days I'm sure a bunch of the guys will chime in. In your case with a G9 being a bit of a different animal other G9 guys will be able to provide you with the benefit of their experiences and knowledged gained, as our PeterDA already has.

Your 'signature' gives us some good info on you, but from the biopsy there should be more that would be helpful for you to consider: what is your PCa stage, what were the results on PNI (perineural invasion), as well as lymph nodes involvement (N category), and any presence of distant metastasis (M category)? And by the way you commented that "a PSA that wasn't too high", yet I see a 5.9 in there - which in your circumstance is indeed considered somewhat high. . .

As mentioned with a G9 you're probably looking at more than one treatment, so the PNI, N and M details are also important to weigh in on. IMHO I believe it would do you well to meet up with a medical oncologist who does not have a bias on treatment approaches, as well as specific experts in radiology to get their input for your knowledge base as well since you've already gotten input on robotic surgery. It probably wouldn't hurt to hook up with an open surgeon as well.

With a G9 and if indeed there is any level of escape from the gland itself you probably are looking at a combination of treatments, so again finding a good, experienced urologist would be paramount for me. You may also then want to "pause" and re-think the surgery route if indeed you have anything that has escaped, which would put you into the radiation world (among other modalities) = so then as has been stated out here often why go through the SE's of surgery. But again I digress and will leave that portion of this discussion up the G9 guys!

Best of luck to you as you continue down this journey - none of us out here are medical professionals, be we've got some experience and knowledge - and are here to help.
Posted 7/28/2013 4:26 PM (GMT 0)
Welcome Harry. You will get tons of info here. I wish you the best with your new journey. Keep us posted.

Don
Posted 7/28/2013 4:44 PM (GMT 0)
Hello and welcome to HW PC, Harry.

We are always sorry to take in new members, but glad that you found us and want to be part of our family here.

Sorry you are in the Gleason 9 club. The normal rule is to be treated for the highest Gleason score, regardless of how much of it was found.

Keep on asking all the questions you desire, we will do our best to answer them with our vast collective experiences. And if you ever want to vent the whole mess to get it off your chest, that comes free with your membership here. Sometimes it helps to clear your mind, and we can handle it.

Please keep us well updated with your new journey, we will be here for you each step of the way.

My best to you ahead,

David in SC
Posted 7/28/2013 4:55 PM (GMT 0)
Hi Harry, welcome to our club at HW!

If you are having surgery a 4 hour drive from your home,your surgeon may want you to stay close by until the catheter is removed. My surgeon did, just in case of any problems or issues. I didn't have any but it was good advice. I just recovered at a hotel across the street from the hospital and did my walking there. We had a kitchen in the hotel room which helped a lot.

Good luck

Bill from Florida cool
Posted 7/28/2013 6:34 PM (GMT 0)
Hi Harry -

Sorry you have a reason to join this club...but welcome - you'll find some great info and resources here.

You've already gotten some good advice, and more will be forthcoming, I'm sure. I just want to comment specifically on one point you made in your initial post - your kegel exercises.

I did my kegel exercises religiously for several months prior to my surgery on July 1st, and have had very good luck with incontinence in the first few weeks following the procedure - at 4 weeks out, I'm really very nearly fully continent. I was speaking to one of the PA's in my surgeon's office about this, and she said that they were beginning to notice that the folks who began practicing kegels before surgery - specifically those who had one or more pelvic floor rehab sessions - seemed to have better results with incontinence more quickly following surgery. Note...this is not a scientific study, but merely an anecdotal observation by a physician who deals with this every day.

That said...practicing your kegels faithfully before your surgery may be a factor in terms of regaining your continence afterwards - it certainly couldn't hurt!

I may start a thread about this - might be interesting to see if there is any correlation on this site between pre-surgery kegel exercise and continence.

Best of luck with you - and do post all of your questions and concerns - they guys and gals here are fantastic, and really helped me with my preparation for both the surgery and the recovery period. The list of things you'll need to have at home once you return from the hospital was especially helpful - you'll find it in the "Prostate Cancer resources" thread at the top of the main forum.

Warmly,

DougInLA
Posted 7/28/2013 7:24 PM (GMT 0)
Hello Harry and welcome to HW. I'm glad that you have found it helpful but really sorry you have to be here.

You have already received some great advice so I will just emphasize three things:

1. Read, read and read. I suggest Walsh, Strum and Scholz as three books that will give you a variety of perspective.

2. Seek out a medical oncologist that specializes in PCa. A G9 is serious stuff and should be handled by an expert.

3. Consider other treatments. Surgery is only one of the options. Many men with your stats have had great success with brachtherapy + IMRT as a combo treatment. Keep an open mind.

Goodl luck.

Jim
Posted 7/28/2013 9:19 PM (GMT 0)
Hi Harry,

Sorry that you need to be here, but I hope that our forum continues to help you.

I have links in my signature below that can help you.

-Gedman
Posted 7/28/2013 9:44 PM (GMT 0)
Thanks so much for your many thoughtful, informative responses. I'll be getting in touch with an oncologist, and researching and discussing hormone therapy, radiation, brachytherapy, and IMRT during the next few weeks. My initial urologist visit was in a medical center about 1 hour away, and once he had biopsy results, he called and said only that some cancer had been found, and referred me to a urologist with Penrose Hospital in Colorado Springs. My knee-jerk response is to get something this nasty out of my body as fast as possible, but I can see there's more to it than that.

And, yes - I am way out in the sticks. Close to an old mining town by the Sange De Cristo mountains. With some of the best fly-fishing, hiking, and bike riding areas I've ever seen. My unbridled optimism told me that this was the perfect retirement spot, since I would surely never have any health issues. They say that old age isn't for sissies - I think I may be getting my feet wet.

Thanks again for the time everyone takes to respond and share their insights.

Harry

 

Posted 7/28/2013 9:47 PM (GMT 0)
Us G9s absolutely need to see a medical oncologist . . . they are the top of the pops as far as cutting edge alternatives to surgery, pun intended. After over 6 years since Dx, I'm still going great without surgery. My next appt is next week so I don't know my current PSA but whatever It is I trust her opinion. This is definitely the place to come for honest, trustworthy advice.
Posted 7/28/2013 10:40 PM (GMT 0)
I'm glad you're getting some good food for thought. One other thing...if you can, try and find a medical oncologist that specializes in prostate cancer. The first oncologist I spoke with actually gave me wrong information (for example, he claimed I wasn't eligible for brachy since I had cancer on both sides of my prostate) and it was only when I got in touch with someone that treats only prostate cancer that I really had the kind of insights I needed to make a treatment decision.

That could be tough for you based on where you are (which is gorgeous country, by the way), so you might consider a phone consultation or even traveling. I highly recommend my oncologist, Dr Lam of Prostate Oncology Specialists, but there are others as well and I'm sure our community can provide other recommendations. Best of luck to you!

Michael
Posted 7/28/2013 11:09 PM (GMT 0)
Harry...oh, yeah...whom you pick for your treatment is critical. Make sure they are experienced and excellent! There are some folks here from Denver that hopefully will weigh in with some ideas.

Jim
Posted 7/29/2013 1:30 AM (GMT 0)
A lot depends on where the primary tumor is and if that is the gleason 9. My tumor was well inside capsule and totality of clusters were classified gl9 by U off W pathology dept, based on new criteria,Quote '' tho the primary cells were 3 and 4 there were a few foci of gl 5," 9% 0f 29gram organ effected.Using the updated gleason classification, started by Epstein, I believe, combined the 2 higher grade to a gleason 9. a soft gleason 9 ,my own editorialization.. I have had only 1 treatment, open surgery, <.1 till Jan13 ,due one soon, no hurry, but will do it and fully expect <.1 minor ED, continent at cath removal Everyones case is different , so think , Mcfly……think.
Posted 7/29/2013 2:52 AM (GMT 0)
Sorry you need to be here, but you found a good place to seek info. You say you have had your biopsy results reviewed by 2 pathologists, but not who they are. Generally, it's a good idea to have your slides reviewed by one of the top guys who specialize in prostate cancer. Two names are dr. Jonathan Epstein at Johns Hopkins and Dr. Bostwick at Bostwick labs. I would have that done before making any decision.

Also, read everything you can before making your choice.

Best of luck!
Posted 7/29/2013 5:16 AM (GMT 0)
Welcome to our world, so sorry you need to be here but it's a great place to be.

You do need treatment and in you're place I'd take an aggressive stand. Life won't be the same but even with your numbers you have every chance of beating this thing for a very long time.

Hang in there and keep us updated on your progress. Let us know if you have any questions. Lot of folks here with great knowledge.
Andrew
Posted 7/29/2013 6:14 AM (GMT 0)
Not good that you have to join us, good luck with the surgery and keep us posted
Posted 7/29/2013 7:53 PM (GMT 0)
Harry R,
We are all so very sorry that you had to join our "club"..I realize that your head and emotions are spinning now with your diagnosis, but your post indicates that you are willing to take any action necessary to kill the beast. I don't believe that this is your case, but if you are a Vietnam vet and haven't seen your VSO (Veterans Service Officer) please do so since benefits are available. Some vets left the service and never looked back and are not aware of the benefits.
Since you are willing to explore all options and as a minimum will have an opinion from a medical oncologist also, please remember that there is no one "right" answer. Many of our "experts" such as Yooper, Tall Allen, and John T have published threads which show the most successful treatments with the least side effects (SE's). Each individual circumstance is different so only you can make the treatment decision. As an example, when I was diagnosed the urologist "pushed" open surgery with the proviso that my nerves would not be spared. That was unacceptable to me and after reviewing my pathology (ECE and pin) and doing my homework, I decided to do it right the first time with radiation and hormones. At the time Bracky was not recommended for "high risk" cases like mine although now it is recommended as a very successful treatment. In any event, which ever treatment you select, I wish you the best.
Bill idea
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