New to the club from the New Orleans area.

This morning just found out I joined the club of prostate members.

Had a parametric MRI several weeks ago, every looked ok. But due to increasing PSA to 6.2 my Urologist recommended a biopsy this past week. I got the results this morning 6 out of 13 cores positive, all were Gleason 6 except one core was Gleason 7 (3+4) located at right base of prostate involving approximately 15% of the sample and he said I am staged as T2c.

Path report shows:

Left lateral base 10% cancer Gleason 6 (3+3)
Right lateral base 15% " " "

Left lateral apex 10% " " "
Right lateral apex 20% " " "

Right lateral mid 60% " " "

Right base 15% cancer Gleason (3+4)


I am 60 in excellent health and both parents lived into their 80's and 90's.
Prostate size is either 22 or 24 grams based on two ultrasound exams.

I was thinking brachtherapy, but with 6 cores spread all of the place I am not sure if that would be the best option. The urologist does post brachtherapy salvage surgeries and said they are messy and usually has very poor outcomes, and usually are dependent on catheters.

My urologist is a Fellow at M.D. Anderson, and said that he has done about 600 robotic surgeries. I like the idea of followup post surgery path report, and the option of salvage if surgery fails.

The biggest concern I have with surgery is the incontinence problem, I have heard many horror stories of being incontinent after surgery.

Nick

You will find horror stories with any treatment option.  Guys like me who have done well usually just move on with their lives.  I'm a surgery guy and while I wouldn't wish prostate cancer on my worst enemy, I have done very well so far.  I asked my surgeon if I was unusual or lucky and he stated that most men who are treated with organ confined prostate cancer do well.  You can see from my signature that my recovery is basically back to pre-surgery days.  I truly believe that the skill of the surgeon is the biggest factor in a good recovery.  I was lucky enough to have relatives in the medical field who pointed me to the best possible person.  On a side note--my surgeon had performed over 2000 robotic operations before he did mine.  I felt very confident in his expertise.  Like you I wanted to know exactly where I was at and to have options if surgery failed.  Take your time and find the path that is right for you, but don't let fear or horror stories cloud your way.

Best of luck,

Tom 

Nick, sorry to have to welcome you to the exclusive club that keeps growing everyday.

I am a surgery guy and have been very happy with my results. I had surgery for the same reasons you are considering. I may have to have radiation later if recurrence happens.

As far as incontinence, I am one of the small percentage that is not dry yet 13 months post-op. I have accepted the fact that "it is what it is" and have decided against any further surgeries to make me continent. I use 2-3 pads a day for small dribbling. My doctor asked me "Can you tolerate it?" I said yes, it is tolerable. Small price to pay to be cancer free.

Good luck and keep us posted.

Bill from Florida

Nick,

I'm sorry to hear the bad news, but rest assured that with your intermediate risk cancer you still have quite a few options to explore. The first order of business, however, is to get a second opinion on your biopsy from Bostwick, Epstein or Oppenheimer. They only read prostate cancer slides and it is a very specialized skill.

Your options include SBRT, LDR brachy (seeds) and HDR brachy (temporary). At the best facilities, the 5-year freedom from recurrence for intermediate risk are as follows:
LDR Brachy (Dr. Taira) - 97% (12 year - may include ADT)
HDR Brachy monotherapy (GammaWest) - 94%
SBRT (8 institutions) - 93%
IMRT (Memorial Sloan Kettering - 86 Gy) - 86% (8 yr)
IMRT (" - 81 Gy) - 78% (7 yr)
Prostatectomy (Johns Hopkins) - 77%
Proton (Loma Linda) - 65% (approx)

In terms of salvage if initial therapy fails, salvage anything will almost always have more side effects than initial therapy. Salvage radiation after surgery will have a worse outcome than if radiation had been done initially. Salvage surgery after radiation is messy, but there are some surgeons who specialize in that. More importantly, salvage after a rare local radiation failure is best handled with more brachytherapy or SBRT rather than salvage surgery. With both SBRT and HDR brachy, the total radiation dose received is only about 40 Gy, which leaves plenty of room to do it all a second time if need be -- more likely, they would do a biopsy and just treat any focal reoccurrence.

Surgeons almost always recommend surgery -- it's what they know. Radiation oncologists almost always recommend radiation -- it's what they know. Moreover, each sub-specialist (e.g., robotic surgery, seeds) will recommend his sub-specialty. That leaves the burden on you to find out more about the other therapies. I talked to about 6 doctors before I made my decision. Please let me know if I can answer any questions.

Hi Nick, sorry you have to be here. I would echo the comment about getting a second read on your slides from one of the top labs. It's a subjective process to reading the slides and the folks that Tall Allen mentioned are the best in the world and it's quite easy and inexpensive to do.

I don't think there's an issue with having your cores spread out if having brachy--certainly not with HDR, but I doubt it's an issue with LDR brachy either. The person that can tell you this is a brachytherapist not a urologist. (FYI, I was told incorrectly that I was not eligible for brachy since my cancer was in "both lobes." Patently, not true and a brachytherapist quickly let me know that was the case.)

Tall Allen makes an excellent point about surgery after radiation. In the event that external radiation or brachytherapy did not work, it's almost always because some of the cancer cells have moved on--not because they are still doing handstands in your prostate. At that point, surgery is rarely necessary.

Of course, I'm not a medical professional so you really need to get some additional professional opinions. If you're interested in brachytherapy talk to someone that specializes in it. Ditto for external radiation. The best resource, in my opinion, is an oncologist that specializes in prostate cancer and is, theoretically, "treatment neutral." You may indeed choose to have surgery with your urologist, but you want to get as full a picture as possible before you make a treatment decision.

All the best to you--I was in your shoes almost exactly one year ago today. This is a tough time so I wish you all the best. Please keep us posted.

Michael

Hey again Nick - I thought I should weigh in with a little more help than my post from last night - so here goes:

Others have already suggested getting a 2nd read on your biopsy slides, and I agree that should be one of your next steps. Labs such as Bostwick and Epstein are two of the best and a 2nd opinion is usually a good thing to add to your decision making tree.

Along with forums such as this where you can learn from people that have and are going through what you are, do as much internet research as you can. When I was at your point in my journey I encountered the "paralysis by analysis" syndrome as I was spending several hours a day doing all of the research and reading as much as I could - but that's o.k. as it will put you in a better place in terms of deciding YOUR choice of treatment.

There are a number of great books out there as well - Dr. Patrick Walsh's "Guide to Surviving Prostate Cancer" and Strum and Scholz' "Invasion of the Prostate Snatchers" are two that I found incredibly helpful during that part of my journey.

You will also want to talk to and if possible meet with as many of the medical experts in the different treatment approaches as you can. Telephone consultations are also a good route to take, some charge for them and some are free. When you do this, be sure to ask for their specific outcomes post treatment - % regression free, continency (and have them define what "continent" means - to you and I it means NO issues, while others may qualify that with "only one pad per day" or "only when straining") - same goes with ED. They all have these statistics and if they say they don't or are unwilling to share that would be a cause of concern for me.

At my young age and excellent health, and with no symptoms or issues - while curing the cancer was / is my top priority, at the same time preserving my quality of life ran a very close 2nd. Be aware of this by doing your research and getting these statistics from the practitioners/treatment modalities you may be considering going with. You only get one shot at this - one of the most important decisions we're likely to make in our lives.

As part of my journey to learn about the various treatment options I downloaded, purchased, and copied a number of studies and results that I would also be happy to share with you, so if you are interested shoot an e-mail my way and I'll reply right away.

We are all out here to help - my very best wishes to you in this journey.

Lapilot, Let me echo all of the above, and welcome, although sorry you have to be here. You've found the right place though, for support and information. I can't stress enough that taking the approach Tall Allen and Yooper have suggested will help you along the way. Educate yourself and talk to professionals in surgery, radiology and oncology that specialize in Prostate Cancer. You don't have to make a decision today. There should be many options on the table for you, and you want to feel that you've made the best decision you can based on what YOU want. Good luck along the way down this road, we'll be here if you need us!

Mike

LaPilot- welcome to HW- we're all sorry you had to join-- but we're very happen you found this great group

I've been fortunate so far the surgery recovery was very good. I'm nearly continent at week 7.. as a rule- i'm continent by day-- and at night I have some incontinence still.. I feel very fortunate

I've been very pleased with the path I ended up on.. Surgery first...

that said- I really do wish I had read up on all my options just like all the others are saying here, before I made the choice for surgery.. I suspect I would have taken the same route-- but now that I'm having to go do ART... I might not be second guessing some things now.

don't get me wrong-- i'm very pleased with my path and feel very fortunate ! But now I know how much is out there to read and learn !!!

Welcome to HW. Sorry you need to be here. I'll just say that the most difficult problem you have now is deciding which treatment to do. Frankly, I think you'd do fine with whatever you pick. Seeds would work and so would surgery. It's really a trade off on side effects and playing the statics numbers game.

Hang in there and keep us updated on your progress.

Andrew

Guys,

WOW, I appreciate all of the information. I have been pulling all of the recent journals from pubmed regarding prostate surgery, and brachytherapy. I just ordered 2013 edition of Winning the Battle Against Prostate Cancer by Gerald Chodak MD. Al so read Surviving Prostate Cancer without Surgery by Michael Dattoli, and The Best Option for Diagnosing & Treating Prostate Cancer by James Lewis, Jr. PH.D.

go LaPilot ! excellent !! keep reading mate ! It will help you take charge of your path !

lapilot,

If you have not already done so, have a look at the Memorial Sloan-Kettering pre-treatment nomogram based on real outcomes at MSK. With your stats it predicts 5-year and 10-year freedom from recurrence of 93% and 89% respectively after radical prostatectomy.

The preoperative Han Tables based on real outcomes at Johns Hopkins predict 5-year and 10-year freedom from recurrence of 91% and 84% respectively.

For a healthy 60 year old in the hands of a skilled surgeon, long-term incontinence is rare. In the unlikely event that you have problems that don't completely resolve with time they are typically highly amenable to surgical interventions.

Here is a good survey paper on robotic prostatectomy that discusses improvement in continence, ED and oncologic outcomes due to recent innovations: www.ncbi.nlm.nih.gov/pmc/articles/PMC3649202/pdf/ISRN.UROLOGY2013-157379.pdf

With your high-volume GS7 my biggest concern would be having the absolute best surgeon in terms of getting all the disease out. There is shocking amount of variability even among very experienced surgeons at high volume big name institutions. You will want to ask any perspective surgeon for his personal positive surgical margin (PSM) rates stratified by pathological stage. Most very good surgeons have PSM rates in the 6-8% range for the best case scenario of pathologically organ confined disease (pT2) and around 30-35% for pT3/4. By contrast the handful of best surgeons have rates of 2% or less for pT2 and 25% or less for pT3/4. Traveling for this surgery is really no big deal and you only get one shot at this.

MD Anderson has a great reputation in general but as far as I know is not a Mecca for this particular operation. From where you are located, Johns Hopkins or perhaps Dr. Ash Tewari at Cornell would be at the top of my list.

lapilot,

If you are interested in reading the books that A Yooper mentioned (or many others that I have), I'd be happy to put them on loan through Kindle or Kindle for PC. Just shoot me an email if you are interested in any of them.

Also, at minimum, make sure MD Anderson re-reads your slides.

Best of wishes in whichever decision you make.