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Posted 6/1/2010 8:58 PM (GMT 0)

Well.... didn't know if I should continue my old thread so that the people that responded could find me. Hopefully you all will because I will need to bounce off you guys now more than ever!

 

June 01, 2010.... Just came back from my URO with my biopsy results.

1 out of 12 cores positive @ 25 %  Gleason 3+4=7.  Doc felt nothing two weeks ago during the DRE and the ultrasound showed nothing.  The only thing I had to go on was my PSA and then, the PCA3 which came in @ 39.  Doctor asked me today who originally pushed me to get tested. I told him about my family history and that the last PSA of 2.75 didn't sit well with me.

He looked me straight in the face today after I told him that and said “You’ve just saved your life."  Although my Gleason is a 7, he said it's very slow growing. Had I waited another 5 years and just fluffed it off, we would be looking at a totally different outcome.  Funny enough, I wasn't nearly as stressed out as I was when I had to go for the biopsy, but it hit me once I walked out into the parking lot!  I'm going in for Da Vinci in 5 weeks.... would have been sooner, but I still need to heal from the biopsy.  I am also scheduled for a CT and Bone scan this Friday of which he assured me would more than likely be negative.  He told me that he would be using the newest version of the robot.  I am definitely having my moments as the day goes on. My head is in a fog and I’m sure as the date approaches I’ll be full blown out of my mind!

 

I'll keep you guys posted as the days progress....

THANKS TO ALL FOR BEING THERE FOR ME

Posted 6/1/2010 9:19 PM (GMT 0)
With low psa and caught early, you have a very high likelihood of a cure. Soon enough this should all be just a (bad) memory. Many experts would say, with your stats, the CT and bone scan is a waste of time/money/unnecessary radiation. It is not uncommon, but is real "defensive medicine." (Now if the doc did a QCT scan -- a bone density test -- that would be very sensible -- but sadly the overwhelming majority of urologists would never think to recommend that, so patient does not get it unless patient insists on it).
Posted 6/1/2010 9:19 PM (GMT 0)
Your doctor is quite the drama queen. It's doubtful that if you had waited 5 years that there would be such an outcome. It's possible but not that likely. With only a single core and a psa of 2,75 I wouldn't be surprised to see your gleason possibly be down graded to a gleason 6 by another pathologist. Even at 7 that's way better than 8+.

Do not schedule any kind of treatment while your head is in the fog. There's no reason to panic and go under the knife in 5 weeks. Your PCa is no where as bad as you or your dramatic uro says it is. So educate yourself on all options and possible side effects first. There are no do overs after all and in many cases the side effects are worse than the "cures" I'd get a second opinion too for your doctor appears not only too anxious and dramatic to my seasoned ears but in way too much of a hurry. BTW how many radical surgeries has he performed with this new DaVinci? You DO have plenty of time to weigh your options. Don't let anyone push you into anything just days after a dx.
Posted 6/1/2010 9:42 PM (GMT 0)

VAM,

You have a very small amount of cells in your prostate which have gone through a natural progression and finally evolved to the next stage which they call "prostate cancer."  You just walked in the door with your biopsy results and you are already scheduled for a prostatectomy in 5-weeks??  Please don't take this wrong, but I would encourage you to take a step back...your doctor absolutely seems like he is rushing you.  Please consider these bullets:

  • A very commonly followed practice is to note which laboratory performed your pathology report; if it wasn't a lab which specializes in reading prostate samples, then please consider the small additional expense of getting a second opinion at Bostwick Labs (or some similar facility with prostate expertise).  Here is Bostwick's easy-to-use link:  https://www.bostwicklaboratories.com/global/services/laboratory-services/second-opinions.aspx
  • The American Urological Association (AUA) specifically does not recommend CT or bone scans for men with your case characteristics (they do recommend them for men with PSA > 20ng/mL or for Gleason score>7).  Why is your doctor going against his Association's best practices?
  • There is statistically significant differences (documented in published medical journal studies) in outcomes between more experienced and less experienced surgeons; most widely studied is the "learning curve" associated with the DaVinci method.  If you end up going this route, I would strongly urge you to find the most experienced surgeon that you can find.  Many men travel minor or even major distances to find the "best."

best wishes...

Posted 6/1/2010 10:57 PM (GMT 0)
My doc told me that he wouldn't perform surgery until I healed for 8 weeks. I was a 7 at biopsy also, 4 of 8 cores positive at 30%.
Posted 6/1/2010 11:01 PM (GMT 0)
I agree with Realziggy completely here in his answer to you. You need to slow this process down, definitely need to get at least another opinion. Five weeks isnt good healing time between the biopsy and the surgery, very surprised anyone would be pushing you that soon. If you have surgery too soon, it can cause complications

David in SC
Posted 6/2/2010 1:42 AM (GMT 0)
Vam

We are here to support you and to offer opinions, some of which might not be exactly what you want to hear. But at the end of the day you are the person who makes the call. best to you and keep us posted.

Michael

Posted 6/2/2010 2:11 AM (GMT 0)
I know you are happy and excited about the nature of uour PCA, maybe not happy but relieved that if you have it it is curable, which it definitly is. I agree with the above comments. We are not hear to knock peoples uros, but a second opinion, ie, biopsy slides,with your stats, treatment options. I had surgery, and, arguably it is the most comprehensive treatment, with the caveat of ED and incontinence. If it was me, Id look at watchful waiting, which u probably wont do, but look real hard at proton therapy and brachytherapy, the side effects can be less. Again I like surgery if its warrented, but I fear some buyers remorse if u jump so quick.I jumped quick, 8wks post biop, but I ended up with a significant up grade with teriary 5, which sealed, the already done deal.
Posted 6/2/2010 2:14 AM (GMT 0)
I appreciate all the comments and opinions, please keep them coming. I do agree that 5 weeks maybe too soon and I will push that back on my URO. In the meantime I will get a second opinion on the biopsy. From what I have seen here.... there have been others with a Gleason 6, a PSA less than mine, who have gone through surgery.... I do know that even when the second opinion comes in and all is said and done,,,, I still have this %$@! thing growing inside me, no matter how slow.. and as much as I'd like to wait, I want it gone!
Posted 6/2/2010 2:38 AM (GMT 0)
I had multiple opinions, and finally went DaVinci - yes, the surgeon required me to wait 8 weeks after biopsy as a MINIMUM. It was actually one or two more due to hospital scheduling.

Honestly, I would have done seeds without any hesitation at your numbers. The actual surgery and (at least for me) certain ED at too young an age were serious downsides of DaVinci. My numbers were too far along for anything but surgery, in the opinion of everyone but the radiation oncologists, but they promised much lower success rates.

I am back in for followup IGRT (another cost of finding it late).

Not being a doctor, you just get my experienced opinion.
Posted 6/2/2010 2:45 AM (GMT 0)
Vam,

I had the same feeling of just wanting the cancer out .... I think that hapens to some of us. 

Having said this, I agree with the advice given by others .... you can afford the time to get a second opinion and research other options. Besides brachy, there are other new radation options like cyper knife, proton and photon therapy, that some of the guys on this forum are going to use.  You might want to look for these posts ...

Best wishes on what ever treatment option you choose.  I am glad you caught your PC early.

Posted 6/2/2010 2:52 AM (GMT 0)
Vam,

Your response is so typical. I think every one of us said or thought the same thing at some point after diagnosis.

That being said, don't jump at the first log floating by. Take some time here. You really have months not weeks to decide what your best course of action is.

I am here to tell you incontinence and ED are real side effects. Mu URO's did not really get me to understand those words. Yeh, yeh , I thought, I'll be fine. I am not saying surgery isn't a great option for a younger man, and that you will be ok. Just make sure you understand what the side effects of all the treatments can be. Find the one that best suits your biopsy results with the least amount of side effects.

I would recommend a visit to a major cancer center and get an absolute second opinion from a team that has the experience and reputation. Places like Mayo, Johns Hopkins, Cleveland Clinic, etc.

I think when it is all said and done, you won't be sorry. This is a big step. You have a lot of years left to live. Make sure you take the time to make a decsion that is best for you, for your family, and your future.

Good luck. I am pleased to hear you say that you are listening to the advice being given here. It may not always be wrapped pretty, but it comes from experience and from guys who care. But as was said, it is your decsion ultimately.
Posted 6/2/2010 2:53 AM (GMT 0)
Vam,
How many da vinci surgeries has your uro done? You need to know if he has done hundreds, perhaps over 700 to even consider having him operate on you. My story is very similar to yours. My uro was all set to schedule da vinci surgery. Fortunately, my lovely wife had the nerve to ask him how many he had done. He said he had done 20 last year and 20 this year. I knew then I had to leave him. You would be wise to follow the suggestions of the guys here who have gone down this road you, unfortunately, find yourself on. Slow down, take a breath, say some prayers, and start to study and research your options. If you decide da vinci surgery is your choice, then find a surgeon who has done at least 700. Good luck and please keep us informed while on your journey.
Posted 6/2/2010 3:08 AM (GMT 0)
First Uro that I talked to recommended DiVinci surgery. When I asked he told me that he had done 15 "total" and expected it to take 4-6 hours. I was out of there in no time. Guy that I went with had done more than 400.
Posted 6/2/2010 3:09 AM (GMT 0)

Red Nighthawk said...
Vam,
How many da vinci surgeries has your uro done?

Thanks for the reply RED... he's done over 500... he is also the co-chief of Urology Oncology and did his residency and training @ Sloan Kettering in NY

Posted 6/2/2010 3:33 AM (GMT 0)
Vam

I'm not a Doctor and I do not have anywhere near the knowledge that these member have but if your sold on the surgery, you should be able to get a another dia. in six weeks. Granted, most of these doctors have a little used car salesman in them, just type in PC. into I-tube and watch these guys hawking there wares, at 3-4 thousand a shot, so would I. This does'nt make the bad doctors, just rich.

  Your numbers look good and as I understand it you will be 8 wk. out from biopsy. Make sure your surgent is experienced and keep posting, the members will talk you though it. I had absolutely no patients and in the end went for the first available surgery opening and so far so good. At the end of the day it' always your call and the fog, does go away.

        Tim

  .

Posted 6/2/2010 5:43 AM (GMT 0)
VAM
(Sorry I've forgotten your family history, but, from the way you mention it and its relevance, I'm assuming a dad or uncle etc has died from PCa, and done so relatively young)

Yes I think you need to take time to work out what you want to do and what you need to do, though in my own case I know that I was able to concentrate on things 100% for two weeks or so and make my mind up. That said I was still operated on 14 weeks after the biopsy, and it was made clear that it would be possible to alter my wishes right up till the last minute.

I think it might help all guys if one choice regarding PCa was taken out of our hands and that there was some kind of protocol introduced that no prostatecomies/surgery could be performed until a minimum of say ten weeks had elapsed since biopsy. (That way you would get an automatic 8 to 9 weeks to think etc to help make sure you were making the right decision.)

As for your stats, well my own stats show what the problem with biopsies can be. Two positive cores of twelve and a Gleason of 6, which put me very close to borderline, but I opted for surgery and then the post op pathology turns up what the biopsy needles couldn't reach, namely cancer mostly on the far side and in the baldder neck, close up against the underside of the bladder and in the seminal vesicles. And an upgrade to 3+4. (So I really would have been in a mess 5 years on if I'd not found what I did in 2009.)
I guess many guys will be hedging there bets and choosing surgery on ther basis of the worry about what might be going on inside them that the biopsy didn't or can't show. I actually said something to the uro alomng the lines that I'd rather have surgery a year to soon than a week too late!

Continue the thinking stage, and get as many answers as is possible. And work out how to balance what you do regarding the questions none of us can answer about the unknown factors. (The "known unknowns")

Alfred
Posted 6/2/2010 1:08 PM (GMT 0)
Hi Vam,

One important note about second opinions-Jonathan Epstein (world famous pathologist from John Hopkins) says many pathologists overdiagnose prostate cancer and about 1.5% of their patients each year are found to have been misdiagnosed.  My husband's surgeon won't even operate without a second biopsy opinion.  You've been diagnosed with cancer, but you'll want to make double sure before you commit to any treatment.  Like the other posters advised, I would slow down and read up on the subject-particularly Dr. Strum and Dr. Walsh.  I would also really check up on your surgeon-he's operating in an area where you want someone with experience-your outcome will be determined by his expertise. 

Renee

Posted 6/2/2010 1:21 PM (GMT 0)
Hi V

Hope your head has cleared up a bit today.  As others have said, take time to read and learn and then time to contemplate.  You may find that you change your mind several times and then come back to your original thought.  Or you may go in a completley different direction.  Only you can decide what is right for you - my advice is just to be as educated and clear headed as you can when you make that decision. 

Ray

Posted 6/2/2010 5:57 PM (GMT 0)

Sorry I missed the Sloan Kettering name.

Sounds like you are already at a major cancer center.  That is good news.

I still recommend getting a second opinion.

Posted 6/2/2010 7:46 PM (GMT 0)
Vam--
Are you in NY? My father was Gleason 6 and a low PSA as well. He opted for seeds 10 years ago and has maintained a 0 PSA since then and does not have issues that surgery may cause. First reaction is to "get it out" but quality of life may be very different with seeds (or other tx mentioned above) than surgery. I would definitely get a second and even third opinion. We met with several doctors for both my dad and bf. I wish you the best!!
Posted 6/2/2010 7:53 PM (GMT 0)

Hope and Prayer said...
Vam--
Are you in NY? My father was Gleason 6 and a low PSA as well. He opted for seeds 10 years ago and has maintained a 0 PSA since then and does not have issues that surgery may cause. First reaction is to "get it out" but quality of life may be very different with seeds (or other tx mentioned above) than surgery. I would definitely get a second and even third opinion. We met with several doctors for both my dad and bf. I wish you the best!!

In Northern NJ.... I read about seeds and did some research....at my age, if there is any reoccurance down the road, my options would be limited. Thank you very much for the reply and i wish the best for both your dad and boyfriend!

Posted 6/2/2010 9:36 PM (GMT 0)
Vam,
You are getting good advice here from patients that have been throught it all. Please get a 2nd opinion and review all options before making a decision, and get a 2nd opinion on your biopsies slides from Botwitch.
JohnT
Posted 6/3/2010 3:45 PM (GMT 0)
I could understand that! Once you radiate, you cannot have surgery or most doctors will not do it. For BF, we went to Sloan and Mt. Sinai. Decided on surgery at Mt. Sinai and treatment at Sloan. We met with Dr. Samadi at Mt. Sinai, Dr. Eastham at Sloan regarding surgery and Dr. Zelefsky at Sloan for radiation. We also met with Dr. McKiernan at Columbia for further opinion. I hope this helps.
Posted 6/3/2010 7:53 PM (GMT 0)
A lot of good recommendations in this thread. I agonized over the decision on what treatment only for a week after my two consultations were concluded. I decided to go with the da Vinci 8 weeks and one day after my biopsy. Most of my decision was based on fact and logic but just wanting to get that cancerous prostate out of my body as soon as possible was a factor too.

What made my decision a little easier was I got three personal recommendations on which robotic surgeon to use-and that carried a lot of weight. Two recommendations were from friends (who had prostatectomies) and the third recommendation was from my diagnosing Uro who only did open (for 20+ years). All recommended the same surgeon and that is who I picked.

I guess my point is that if you decide on robotic, maybe there is a local support group in your area where you can go and get personal recommendations for surgeons in your area and hear about others PCa journey. There might be a robotic surgeon in your area (other than your current Uro) who is generally regarded as the go to guy, with the most experience and the best results
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