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Unfortunately, time to quit lurking and get on the bus

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Posted 11/20/2006 12:02 AM (GMT -6)
Hello all,

Looks like my period of indeterminate biopsy results has closed and my lurking days are done.  Luckily the word microscopic appears.  Unfortunately so does prostatic adenocarcinoma and Gleason 3+3.  I see the uro. on Nov. 29 to go over the results.  Being impatient, I picked up the path report myself.  The slides were sent out for a second opinion and confirmed.  2 cores positive, probably 24 taken.  At age 56 and expecting/hoping to live another 15 years or more, hanging around watching and waiting doesn't sound like a realistic option.  PSA had never been above .8, had a biopsy (indeterminate) in July because of an abnormal DRE and Oct. 4 PSA was 2.6.  Anybody experience a three fold increase in PSA 2 and 1/2 months after a biopsy ?  The repeat biopsy after that found the offending cells.  I'm in the Virginia suburbs of D.C.  I know that Glen (Spinbiscuit) went to G.W. and I'm familiar with Johns Hopkins in Baltimore.  MKat - where did Jeff have the open surgery (I believe you're in So. MD, I lived in St. Charles 30 years ago)?  And Bluebird, I know I'll hear from you.  But it doesn't feel like a bus.  More like a MACK TRUCK (or given the subject matter - PETERBILT).  I know no one wants to be here but I'm glad those of you that have gone before are here to help those of us worrying over what's to come.

Boo

Posted 11/20/2006 7:21 AM (GMT -6)

Hi Boo,

Sorry to have to welcome you to the club, but it sounds as though you caught this early.

You are correct that Glen had DaVinci surgery at GW.  He and I had the same surgeon, Dr. Jason Engel (DC Urology).  I went to Dr. Engel because my urologist strongly recommended robotically-assisted laproscopic and I felt that was the right choice after my own research.  Dr. Engel was recommended as one of the most experienced in the mid-Atlantic.  The other one metioned was Dr. David Lee in Phily.

Johns Hopkins of course has a great medical reputation but was not recommended to me because they do not do DaVinci, only open surgery.  In fairness, there are a number of members here who believe open is a better alternative.  I am just not one of them.

Sorry that I can't respond to your question in regards to PSA.  Mine went up in the last year and a half prior to surgery, but it was 3.7 up to 6.1. (Now it is zero after surgery two months ago).

Rick

Posted 11/20/2006 8:04 AM (GMT -6)
Hi there Boo and welcome to the club no one wanted to join but considering the circumstances are glad to have found.

Our MACK truck only felt a tad smaller because Bob's older brother had gone through the very same thing exactly one year prior so we KNEW cancer was a possibility and even likely. With their father having fought prostate cancer as well the doctor refers to the three boys as genetically doomed!

We originally were referred to a urologist that only talked open surgery (of course that was all he did) and brother insisted we seek second opinion and have the robotic laproscopic method. We did just that and the very same doctor performed Bob's procedure as his brother.

You are right to want this done asap so you can get on with the healing and getting on with the rest of your life part of the journey.

Good luck to our new friend and please stay with us and keep us posted. We are here for you!

;o) Linda & Bob
Posted 11/20/2006 8:38 AM (GMT -6)
Boo,

A very unfortunate welcome to the PCa club. You are ahead of the game as you have already been doing research and gathering information. All of us that have been there know that feeling of the floor coming up to hit you when being told you have PCa. And yes, the truck analogy fits the feeling. The good about this is that you have caught it very early and it is totally curable. You obviously already know about the Da Vinci procedure and needing to get with an experienced surgeon. I had my Da Vinci almost three weeks ago and could not have been more pleased. I had never been in a hospital until then and was emotionally down the two to three days prior to the surgery. When I came to in recovery I was so relieved because I had no pain I became pumped up and ready to get on with the healing. Then getting the post op path report showing the cancer was confined to the prostate brought tears to my eyes. You know, if I had gone the radiation route I would never have had that release of dread that came with that path report. You sound like you got it all together. Now is the time to start getting yourself in good shape. I know my results were greatly impacted by the physical exercise I did for the three months prior to surgery. Good luck and let us know how we can help.

Tamu
Posted 11/20/2006 7:46 PM (GMT -6)
Yeah, time to quit lurking and participate. I did the same and the results are wonderful. Best bunch of people I have never met. I still have some difficulty expressing myself, but I'm doing better. You will, too.

Regards,

Bill
Posted 11/20/2006 7:52 PM (GMT -6)
Hi Lurker….Boo   Now why in the world would you think you’d hear from me…       Chirp~Chirp~Chirp…   Boo ~ we’ve had you in our prayers…. since 10-10 when you came out of “lurking” to share your information… on Sara’s Thread…   I talked with you then ~ briefly…. and I have hoped and prayed we would not have to formally welcome you…    Well now….. I guess a nice Warm Welcome is due ………..   You ~ are definitely in the right place and you’ve really got your ducks in a row by the sounds of it.   Now about that BUS!!!!!     It’s been called…..a H ammer, a Semi with 3 tractors, and now a Peterbilt J    I guess you could say it’s all of the above at one time.   Truly!!      Our careers were in education….   (Buddy’s career: science teacher / multi-media computer teacher / guidance counselor) and (Lee’s career: elementary payroll/accounting/data manager/secretary).  Therefore ~   bus was appropriate …   I have a ½” x ½” model of a yellow school bus and so when we were talking after our doctor called with the results of the biopsy…. We were in a state of *&^%$#@   and when the timing was right…. I went and got my little bus and told Buddy that it feels like a BIG Bus but it’s only a little mini bus ~ and we will get up from the hit!!!    And so will you my friend.  Mind you I think those Peterbilts might leave a little more thread on the body :)   At 56 you’ll definitely fight for quite a few more years of quality living……… by having surgery!   We will continue to be with you as you take another step in your journey…know our hands will always be there for you!   You have already helped others with your 3 postings…. So please continue to update us on your journey.   Keeping you close in thoughts and prayers...  In Friendship ~ Lee & Buddy
Posted 11/20/2006 10:27 PM (GMT -6)

BooMan, welcome aboard! This is a wonderful forum to be involved in. It sure helped me when I got hit with the truck "peterbuilt" very good "peterbuilt" indeed. I said mine was like a big hammer in the chest. I'm 57 PSA 4.3 gleason was a 6 moved to 7 after surgery 5 of 12 cores cancer, cancer confined to the prostate. I had the Davinci 10/12/06 and at this point I am 99.9% continent no pads, no leaks, even when I sneeze. Sexual feelings are coming back and I am extremely confident it will be alright in time. If you aren't excercising now, get started walking and start to kegel everytime you think about it. Looks like you have a very good selection of very qualified doctors close to where you are. This is a road nobody wants to go down, but it is a road that has been traveled by many before us. You will do fine and we are here with you, knowing exactly what you are feeling. Try to keep your thoughts as positive as possible, the anticipation and the catheter are the worst part of it all. Like many said to me, "this will all be over before you know it," and they were so right. Best of everything to you and keep posting.

Posted 11/21/2006 6:23 AM (GMT -6)
Welcome Boo!
I've only been here a short time but this special place has helped me so much already! I am so gratful as when I was hit by the PC train, I didn't just get run over, I have been dragged by it for the past 3 1/2 years. With help from people like the ones on this site, I've been able to get out from under the train, get up and dust myself off and now am on my way to healing my body and mind! As it has been said many times " this is the club no one ever wanted to join." If you have to be here it's good you got on board early. Good luck my friend! Please feel free to ask ANYTHING!!!! AS you may have noticed, We are not prudes here!
Sincerly,
Pete
Posted 11/21/2006 6:50 AM (GMT -6)
Boo,

Jeff had surgery with Dr. John Lynch at Georgetown University Hospital. If it had been me, I would have looked around at other options (like laproscopic) but as soon as Dr. Lynch told Jeff that he had PC and surgery 4 years ago, Jeff immediately related with him and made his decision. you will have more than 15 years left so get ready to live a long time. try and enjoy Thanksgiving, discuss your options next week and then make your decision. you have time to research everything, including different doctors. wow, you wouldn't recognize So Md now. it is a big concrete town with some farms still in the outer ridges. the Amish people still ride their buggies on the side of the road, too. take care, kat
Posted 11/21/2006 5:01 PM (GMT -6)

BooMan:  Sounds like you caught your problem very early.  Gleason 3 + 3 is on the low side, which is good. 

I also was a Gleason 3 + 3.  Decided to go for the best opportunity for a cure....surgery.  I live down South, but decided to search the country for the most experienced, highest credentialed urological surgeon out there.  I checked my insurance network to see what facilities/doctors on my short list were in network.  I knew about the laproscopic/robotic/open procedures, but had an oncolgist/friend who specializes in prostate research advise me to pick the surgeon, not the procedure.  You see, most of the "experts" out there do one type or the other, not both.  I followed my oncologist/friend's advice. I considered only the top guys and accepted what they do best.  I ended up selecting Alan Partin at Hopkins, not far from where you live.  If you've read my earlier posts, I think you know I had an excellent result (<0.1 PSA three months post surgery; pad free after four weeks; running five miles seven weeks post surgery).  Partin trained under the best ever, Patrick Walsh. 

While Partin does the open procedure, there are others at Hopkins who do perform the DaVinci contrary to what Rick54 reported.  I know this because I spent 48 hours in the hospital and talked to guys who had the robotic.

You live in an area with many good, experienced urological surgeons.  Make sure you pick one of the experts.  I foresee a complete, swift recovery in the future!  You're on the right track.

Posted 11/21/2006 9:13 PM (GMT -6)

Thanks everyone for the comforting words.  Looks like you remember well the panic and distress.  Having read your other posts I know that this will pass but it sure is a wild ride now.  Does anyone (like maybe Swimom) have an idea what a path report indicating "nuclear grade II" means?  I googled it but couldn't understand the hits I got.  Does "microscopic" pretty much mean you won't get a percentage of core involvement (like 3+3 - 40%) ?  Yeah, I know, I ask a lot of questions.  You ought to see the list I already have for the doctor next week.

Boo

Posted 11/21/2006 9:23 PM (GMT -6)

Hello Boo,

Yes we do seem to have much in common.  I wish it was restricted to the family and aviation stuff, but it isn't.  This is an unhappy experience for all of us and I have spent hours online looking for information and this is the best human place I have found.

Do you work Patomac Approach?  I fly a G-IV.

I have spent untold hours learning about various curative options.  At present I favor IGRT (Image Guided Radiation Therapy).  This opinion may change tomorrow.  I am very surgery averse.  Like some other guys here, I have never had a surgery, or been a patient in a hospital.  I have contacted an HIFU clinical trial place to see about that.  It seems that I may be a candidate.  Do I want to do that?  No, but I don't want to do anything else, either.

My uro has recommended surgery.  He is, of course, a surgeon.  Had the same performed on himself ten years ago.  The choice of what to do seems mostly based on our emotions.  My uro just wanted it OUT of him and I have read much of the same on this site from several of the guys.  I am more concerned about side effects and the misery and risks of surgery.  (Side effects come with all choices, I know.)

The essential problem is that there is no really good choice.  No matter what you choose, there are negatives associated with it.  It blows. 

Please keep me informed about your thinking.  We need this info.

The numbers regarding our prostate stuff and our marriages are incredible.  I hope that one day that we are interested only in our families. 

Keep Your Mach Up,

Bill

Posted 11/21/2006 9:32 PM (GMT -6)

Hey Boo, I'm wound way too tight.  Didn't even say Happy Thanksgiving to you and yours. 

Happy Thanksgiving and the joy of family.

Regards,

Bill

Posted 11/21/2006 10:01 PM (GMT -6)
Bill,

Curtis had never been in the hospital and didn't even like to go to visit someone there, but he wanted that awful stuff out of him bad enough that he immediately decided to have the surgery.  Of course it helped when we found that surgery isn't an option after radition, but it is the other way around if needed in the future.

Just something to think about.

Like Bluebird says...whatever you decide will be the right choice...for you.

Have a wondeful Thanksgiving and try to enjoy the day and forget your worries for a little while.

Posted 11/22/2006 3:29 PM (GMT -6)
Welcome to the club my friend, i myself have had 3 biopsies over the last 18 - 24months apparently my psa was always around 2.1 ( been monitered since i was 40 now 48 due to father having PC) then it jumped to 3.1, thats when the roller coaster started 2nd psa 2.8, 3rd psa 3.4, 4th 3.8, then 1st biopsy 12 samples taken, all clear next psa 2.8, 6th psa 3.7, 2nd biopsy 16 samples taken something suspicious found but told it was benign ( alarm bells starting ) 3rd biopsy took another 12 samples, called me back ( new what was coming ) Gleason 3+3 PC, due to my age they are obidged to offer me treatment within 31 days of me requesting it, they gave me loads of options like yourself and like you i didnt fancy hanging around and waiting so ive opted for laproscopic surgery, ive always said to myself if anything like this happened i would get it out of me asap, operation on 8 December, not looking forward to it but the sooner its gone the sooner we can get on with our lives.
Sorry to go on but i hope its helped you, just like our new friends are going to help us get over our little problem.
Keep in touch mate, hope all goes well for you.
All the best.
Mike ( London Uk )
Posted 11/28/2006 1:51 PM (GMT -6)

Hey BooMan!  Where are you and how are you?  I think you're talking turkey with your doc tomorrow and mine is Thursday.  Let us know what you decide on and etc.  Ok?

I really do know how to spell Potomac.

Regards,

Bill

Posted 4/21/2007 7:08 PM (GMT -6)
Hi ~ Boo,   After hearing in Chat Room….you have a biopsy scheduled in May 8th…. I brought this info over from a previous thread you started…   As your time permits will you give us an update on how you’re doing?   In Friendship ~ Lee & Buddy       12-15-2006   Quote from this thread   Question for Swimom Swimom, If you don't mind my asking, I'd like to know what happened after your husband got the "atypical" biopsy diagnosis and you spoke to Dr. Epstein about it.  Was another biopsy required?  My 2nd biopsy came back with a malignant diagnosis so I sent it to Johns Hopkins for confirmation.  Focus of atypical glands was what they reported and recommended another biopsy.  Dr. Epstein was out of town but I can talk with Dr. Partin about it at an appointment I have next week. I'm not quite certain what to make of these differing biopsy opinions or even what questions to ask.  Maybe some of us just have to be pincushions for a while.  Thanks. Boo     12-15-2006   Quote from this thread   Question for Swimom Hi Boo, No additional biopsy. Epstein also found one tiny focus of 3+3 to go with the 3 atypical foci. U of M and Epstein were identical in their biopsy readings. At 48, and with a location in the mid base and apex, waiting would only insure one thing....an ulcer! Treatment was necessary whether it be now or later. The tumor burden = 16% of the gland at final pathology. That isn't so tiny a cancer. 16% of a 42 gm prostate isn't big but it isn't small. Imagine what it would have been in a 25-30 gm prostate? Probably positive margins at the apex...yikes! Paul made the right decision. Age and location were definately major players. Swim   12-15-2006 Quote from this thread   Question for Swimom Swim, Thanks for the quick reply. None of the foci on my JHU report were positive so I guess I'll wait till Tuesday to see what happens next. Oddly enough I scheduled the appointment originally to get a second opinion about what looked like certain surgery. Back on the merry-go-round. Boo  
Posted 4/21/2007 9:31 PM (GMT -6)
Boo

I met you in chat the other night and I'm sorry to hear about the biopsy. If you want to read threads that show panic and fear read mine. Our stats are close and other than the leaking problem I've come out of the Da vinci surgery in great shape. I won't repeat everything others have said but I will say if you need someone to vent with or any advice just let me know I like everyone else here are there for you

Alex
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