New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

survivor_wannabee
Regular Member


Date Joined Apr 2007
Total Posts : 29
   Posted 4/4/2007 7:26 PM (GMT -7)   
Hello nice folks. I am a newbee into the fraternity and am going up the learning curve as many of you have done. As per my signature line, you can see my initial diagnosis. With no other information, I look like a prime candidate for surgery. All of the normal tests are either done or scheduled. I am proceeding at this point as if they will all come back normal as my urologist and another urologist I spoke to as a favor from a friend (you know the drill...its all about who you know) have said that I should have surgery within 3 months to minimize the threat of positive margin. In other words, I don't think I can wait until the final test is done.

I know I am rushing things a bit, but am truly "hastening slowly" to make sure I make the right move within the window. My predisposition as are many now adays is to do the daVinci surgery. My research has narrowed it down to two surgeons in the Philly area that are good enough to have a major backlog. Neither one of them can see me even for a consult until mid-late June. I am finding though that everyone hedges their bets and books multiple doctors so there are cancellations and I plan to call every few days to try to improve that date. I am leaning towards this procedure because my otherwise fairly youthful body (I have worked out regularly for most of my life) has a tendency to throw blood clots out of my legs (deep vein thrombosis for those in the know). Therefore a somewhat bloodless surgery has a lot of appeal. I have also either spoken to or heard from several survivors of that procedure who relate fantastic results. I am however sure that there are some horror stories as well.

My urologist is recommending the open nerve sparing alternative, which of course he is more familiar with and says that there are some horror stories with the new "sexy" method. I suspect though that from my research that the surgeon might be more key in this case than the procedure as the technology is now fairly mature, just not widespread. The other urologist said that probably 20% of all surgical procedures for prostate cancer are now done in this fashion. My current urologist will however support me if I want to go over to the dark side.

I am sort of in limbo now until the tests are complete in the middle of this month, which hopefully will qualify me as a surgical candidate, otherwise I will be back for advice. In the meantime, if anyone would like to make comment on the decision I have to make, it would be most appreciated. Its been therapeutic just writing my story to an audience that I know will not necessarily react with the typical "well that's one of the better cancers to get if you had to choose". Hello, I didn't choose and in fact don't feel lucky, but am determined to beat cancer and do so with some quality of life for the short and long term.
Age: 57
Diagnosed: 3/27/2007
PSA: 4.9
Gleason: 3 + 4
Cancer in 6 out of 12 samples
Stage: T2B


kw
Veteran Member


Date Joined Nov 2006
Total Posts : 883
   Posted 4/4/2007 7:32 PM (GMT -7)   
Sorry to welcome you to the club. You have to make the decision for you....then go for it!
Start doing your Kegals now. It will help you regain your contenance.
Check with you later....

KW
    43
    PSA 5.7 - Discovered during Annual Physical with Family Practice Dr.
    Gleason 7
    Biopsy - 3 of 12 positive (up to 75%) all on left side of prostate
    RRP on Oct. 17, 2006 - Nerves on right side saved.
    All Lab's clear.  No Cancer outside prostate
    Cathiter in for 3 weeks due to complications in healing. Removed Nov. 9, 2006
    First Post op PSA on Dec. 11, 2006  Undetectable 0.00
    Office visit on Jan. 19th due to continued excessive urine leakage.
    Feb.20th Cystoscope and 2nd Post Op PSA. Another 0.00.....:)
    Dr. said everything looks fine.  Continue to work Kegeal's. Leaking appears to have improved  after Cystoscope?!?!?!  Down to 3-4 pads per day!
    March 1st  Leaking has crept back up to 6 - 8 pads a day ??????? 
    March 8th Started Detrol LA to see if it helps with the leaking?
    March 29th Collagen injection into sphincter / bladder neck area to control excessive leaking.
    Return office visit May 2nd unless leaking starts agian.
    May 22nd Follow up and 3rd Post Op PSA
   


Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 400
   Posted 4/4/2007 7:45 PM (GMT -7)   

J:

Since you had to join this group, your positive attitude will serve you well during the next few months.  Keep us posted and take care.

Dutch 



Diagnosed Feb 2001  (Age 65)  Currently 71
PSA 4.8
Gleason 3 + 3 = 6
T2b
Completed Proton therapy @ Loma Linda - Aug 2001
5yr PSA   0.17
Have had no side effects.


biker90
Veteran Member


Date Joined Nov 2006
Total Posts : 1463
   Posted 4/4/2007 7:50 PM (GMT -7)   
Hey J,

Sounds like you have done the right stuff so far. Keep reading and researching alternatives and coming back here to report your progress. We learn from each other and give each other hope and encouragement...

Jim
Age 72. Diagnosed 11/03/06. PSA 7.05. Stage T2B Gleason 3+3.
RRP 12/7/06. Nerves and nodes okay.
Pathological stage: T2B. Gleason 3+4. Cancer confined to prostate.
PSA on 1/3/07 - 0.04. 
PSA on 4/4/07 - 0.00  Restarted T therapy.
Next PSA on 7/11/07.
 
 "Cancer feeds on fear - starve it to death."


jetguy
Veteran Member


Date Joined Sep 2006
Total Posts : 741
   Posted 4/5/2007 5:01 PM (GMT -7)   
I too, think you are doing the 'right stuff'. It's a difficult experience, but I expect that you will find your way through it. Stay here with us, please.

Regards,

Bill
Gleason 3+3=6, T1c, one core in twelve, another pre-cancerous.
62 years old and good health.  Married 37 years.  To same woman!
Began IGRT January 23, 2007. 


pcdave
Regular Member


Date Joined Oct 2006
Total Posts : 444
   Posted 4/5/2007 5:27 PM (GMT -7)   
Hey

You might want to indicate in your footnote whether or not your DRE was negative or positive. I assume positive because of your stage of cancer (i.e., T2b). I narrowed my decision down to robotic surgery or proton therapy. in my opinion, they are the best two treatments depending on stage of cancer and age. i was told that i had an equal chance of achieving a cure with any form of treatment. just make sure that you have researched each treatment option in depth including the potential side effects. also consider quality of life in any decision you make.

Almost 3 months to wait for an initial consult is a long wait unless there is a cancellation. A time span of three months from the time you first contact the doctor until treatment would be considered the ideal. It is true, however, that some of the best doctors are in top demand and you must wait. as a general rule, you should try to have treatment within six months of the time you are diagnosed. if you are willing to travel outside of philadelphia, you might consider dr. tewari at ny presbyterian hospital (cornell) in new york city, who has done over 2,000 of the robotic surgeries. some members here have had him perform their surgery. whether or not you could access him sooner than your local doctors i don't know, but it might be worth a phone call.

Dave
68, Biopsy 9/27/06, Stage T1c, PSA 7.1, Gleason 6 [less than 5% in two areas], Gleason 7 (3+4) [less than 20% in third area], negative DRE, bone scan and MRI. Starting proton radiation therapy 2/22/07.


SJC
Regular Member


Date Joined Jul 2006
Total Posts : 113
   Posted 4/5/2007 6:01 PM (GMT -7)   

Hey Survivor Wannabe:

FYI, the open procedure witht an experienced surgeon is not bloody.  Ask your prospective surgeon how many of his patients need a transfusion.  The good ones keep track of these statistics.  If your guy cannot give you an answer, he is most likely not what we call an "expert", someone who is a seasoned veteran with exemplar credentials.  I had the open procedure.  My guy's stats:  2% of his patients had transfusions.  That's low for any procedure.  My open surgery took only one hour, which meant he went in, took it out and closed.... uneventful...which is the way you want to go.

Whatever procedure you choose, make sure your surgeon is an expert. 

 


Tim's Wife
New Member


Date Joined Feb 2007
Total Posts : 15
   Posted 4/5/2007 6:49 PM (GMT -7)   
SJC, I concur. As well as little loss of blood, Tim's incision was not that large and healed quite quickly.

survivor_wannabee
Regular Member


Date Joined Apr 2007
Total Posts : 29
   Posted 4/5/2007 7:15 PM (GMT -7)   
I read through a bunch of forums and at first blush this one seemed to be the most informative. You folks are great.

Let's see, first of all SJC, my current urologist is recommending open surgery and although he does these regularly, I asked for the affiliate hospital University of Penn that has a fantastic reputation in my area for open and robotic. The guy he recommended was confirmed by a prostate cancer wellness counselor I have been seeing as well as confirming his robotic choice as well. I also have talked to several survivors that personnally had surgery done with both with excellent results. After doing a good amount of research I recalled my local urologist and he recommended I settle down until I get my other tests back to ensure that I am a surgery candidate at all. I hate waiting, but that's what I am going to do until I get closer to the last test and then start working on moving up the appointments. I appreciate your advice though as I keep hearing that the surgeon is more important than the procedure as long as the options are viable.

Dave, the DRE was positive and being that I had 6 out 12 samples positive, I certainly don't want to wait. I am hearing from 2 different urologists that I should have surgery within 3 months. My wife just came in and told me about a friend who had surgery done by the open surgery guy recommended at U of P and he never had to wear pads....hello I should be so lucky. I am starting to be a little bit more open minded about the procedure options. I have friends that have influence at the Cleveland and Mayo Clinics and am getting recommendations out of DC as well as yours in NY. I feel though that I have to get my tests results back before I put the pedal to the metal. Go for the bone scan tomorrow....blood tests on Monday, then the MRI the following Monday (only a couple of the machines in the area that do what needs to be done for prostate cancer).

Thanks to you guys as well Bill, Jim, Dutch and KW. I appreciate the support.

PS. As soon as I figure out what Kegels are, I'll start doing them.
Age: 57
Diagnosed: 3/27/2007
PSA: 4.9
Gleason: 3 + 4
Cancer in 6 out of 12 samples
Stage: T2B


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 4/5/2007 8:01 PM (GMT -7)   

Hi ~  Survivor Wannabee  &  Loved Ones,

  

     A   “Special”  Warm Welcome  to  You!   yeah  

 

We know ~ we can “all” make “Your Journey” smoother just by being here for you! 

This is truly a great forum!!! ~ You have joined!  You are now part our forum family ~ a group of wonderful individuals who are so willing to share...  It helps “all of us” ~ to help you ~ if we know where you are on your path. So ~ Please stay with us and take our hand when you need it!  Keep posting.... OKAY!!

  

KNOWLEDGE    IS    POWER  ...  and  POWER conquers  fear

 

YOU MAKE THE DECISIONS… YOU HAVE OPTIONS…

~ and ~

Your decision will be the right decision for you!!!

 

We invite you to visit our personal thread “Our Journey” in the signature line below.

Our thoughts and prayers will be with you as you continue to move forward with your decision. 

In Friendship ~ Lee & Buddy

 

“God Bless You”

It's a little prayer  ~  "God Bless You" ...but it means so much each day,

It means may angels guard you and guide you on your  way.

 

(Direct Link ~ just click on the title below and a new window will open!  

Reminder … click on the REFRESH icon once you get there)

Helpful Hints ~ & ~ Direct Links to Important Topic Threads ~ Hope this helps you!! :)


mama bluebird - Lee & Buddy… from North Carolina

Link to our personal journey…>>>     Our Journey ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy with "wide excision"

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

2nd PSA 02-06-2007 Less than 0.1 Non-Detectable :)


survivor_wannabee
Regular Member


Date Joined Apr 2007
Total Posts : 29
   Posted 4/30/2007 2:40 PM (GMT -7)   
Hello everyone. I thought it time for an update, partly for my own piece of mind and partly for those that will follow looking for what to expect. Let's see, I felt like I have done every test known to man..being stuck, prodded, irradiated, photographed from every angle etc. That's OK, I thought that was the case when I had my first deep vein thrombosis and pulmonary embolism, but unfortunately discovered that wasnt' the case.

Most of the tests were pretty routine except fo the MRI with endorectal coil. The coil stuff immediately makes one feel uncomfortable, doesn't it. This was well warranted when the specialist conducting the test starts by saying that this will be at least less uncomfortable than the biopsy I had. I replied that I guess that means that he is to administer local anaesthia and that the procedure will be over in less than 10 minutes....well not quite. No anaesthesia and what he told me was going to take 20 minutes seemed more like forever was the result.

At any rate, all of the tests indicated as best they can tell that my cancer is contained within the prostate....hurrah!. Unfortunately, the cancer being shown in 6 out of the 12 samples on one side and up against the capsule wall means that a good part of one nerve will have to go. Well, I guess one out of two is beter than none. Incontinence was my biggest fear and I was told that that should not be a problem....we'll see.

The interesting thing is that my local urologist had done a couple of RALPs while I was going through the tests and in so doing his recommendation for treatment had changed from LRP to RALP. For those of you not used to these acronyms, he now was recommending DaVinci. As he started to describe his reasoning, I told him that he had me at hello (reference movie Jerry McGuire). In other words, that's what I wanted in the first place after fairly extensive research.

He then recommended one Costas Lallas out of Thomas Jefferson University Hospital in Philly as he knew I was after a doctor with lots of experience in that procedure. THUH is rated way up there in terms of urology in US News and World report, which I admit might not be the defacto standard for best hospitals, but none the less made me feel comfortable. The two guys I had tried to schedule elsewhere couldn't even see me until June. Through my urologist's connections, I got a consult the same week and am now scheduled for surgery 5/29 several weeks before the other two recommended could even see me for an initial consult. THUH did the first robotic surgery in the Philly area. Lallas just does DaVinci and seemed a straight up guy. I doubt that anyone has used him on this forum, but if they have, would appreciate feedback.

One word of wisdom here, which may not be a big deal. Only two hospitals here use the MRI with endorectal coil, University of Penn (which my local urologist is affiliated with) and Fox Chase. My guy at Thomas Jefferson doesn't feel like it really tells him a lot and certainly doesn't change his strategy for surgery as cancer penetration outside the prostate at this stage is typcially microscopic and not detectable. I tell everyone this not because maybe you could avoid the discomfot, but because I had to wait for the biopsy to heal before undergoing the ordeal and probably could have scheduled surgery earlier. My local urologist countered by telling me that he had a patient that showed cancer of the bladder with the MRI, which way changed his treatment recommendations. The only other thing that irriated me was that the tests showed that I showed signs of degenerative arthritis at the bottom of my spine. In inquiring what I could really do about that, my oncologist...who is also my hematologist for the blood clot issue let me know basically nothing as I work out regularly and can't take aspirin as I am on blood thinners....hello why tell me, but doctor's feel obligated to do that it seems.

So now I am a month out from surgery, not having had any surgery more drastic than a tonsilectomy when I was in my early twenties...that was major trama by the way, but Demerol fixed that problem and a couple of weeks later was back to normal. So begins the waiting game. I have worked out continually for most of my life, so am stepping up my workout regimen and have read the Kegel procedures and am starting them today.

PS. I think I might just shoot the next person who tells me that they hear of all the cancers to contract, that prostate is one of the better ones to get and I haven't even had the surgery. Can anyone relate to that?
Age: 57
Diagnosed: 3/27/2007
PSA: 4.9
Gleason: 3 + 4
Cancer in 6 out of 12 samples
Stage: T2B
RALF Scheduled: 5/29/07

Post Edited (survivor_wannabee) : 4/30/2007 3:53:15 PM (GMT-6)


Izzyblizzy
Regular Member


Date Joined Oct 2006
Total Posts : 411
   Posted 4/30/2007 3:06 PM (GMT -7)   
Hi Survivor_wannabee :)

you have "RALF Scheduled" in your signature :) which makes me think of what Ken did after his robotic (ralph, puke, etc), lol!! (yes i know it is a typo ... just thought i would point it out cause someone down the line is going to wonder what is a RALF :))

Glad you made your decision and that got in earlier than you thought! And that all those tests are out of the way.

Glad you are doing your kegels and getting in shape for surgery. Keep us updated in your progress.

Tanya and (Ken .. the one who Ralph's) :)
Age: 63
Diagnosed: 10/30/06
PSA: 3.7 (up from 3.4 previous year)
Biopsy: 1/10 cancerous, 5% of one core, right apex.
Gleason: 3+3=6
Da Vinci: April 10, 2007
Path results: 1% of prostate involved. Very small tumors on both right and left apex. Negative margins. Gleason 3+4=7.


Joes411
Regular Member


Date Joined Mar 2007
Total Posts : 87
   Posted 4/30/2007 6:16 PM (GMT -7)   
Sounds like you are on the right track. Doing your homework really pays off. Keep up the good work.

I can totally relate the "good cancer" cracks. I guess folks mean well but minimizing it does not make me feel better. I may have to shoot a few myself, shoot them the bird anyway ;o)

Joe

Age: 51

PSA  Jun06  4.1  (PSA Jun05  1.2)   DRE negative

1st Biopsy Nov06 – Atypical cells but no cancer

2nd Biopsy Jan07 – 1 of 16 cores positive

Stage T1c   Gleason  3+3=6

DaVinci scheduled for mid May


survivor_wannabee
Regular Member


Date Joined Apr 2007
Total Posts : 29
   Posted 4/30/2007 6:37 PM (GMT -7)   
Tanya and Ken, I somehow wanted to twist RALP into RALF that sounds almost like that silly comedy about an alien, maybe because at times this journey seems like comedy and other times it feels like an alien experience...is that normal...my bad. Thanks for the correction.

Joe, will do. I see you are going in right before me. I suspect with your prognosis, they can save both nerves. Hope that's the case. I wish you the best of luck.
Age: 57
Diagnosed: 3/27/2007
PSA: 4.9
Gleason: 3 + 4
Cancer in 6 out of 12 samples
Stage: T2B
RALP Scheduled: 5/29/07


sween76
Regular Member


Date Joined Feb 2007
Total Posts : 60
   Posted 4/30/2007 6:59 PM (GMT -7)   
I believe that exercise is the key right now. I worked out 2-3 hours every day and it really paid off.  I lost 30 pounds which I needed to do anyway. Upper body strength ( to help move), abs, and heart were all a big help in recovery. Also did power walking. Two weeks after surgery and I have to make sure I do not do too much. Also I was very careful with my diet.  Good luck.  Ed

Age: 63
PSA 2.62, Negative DRE
Biopsy: Gleason 3,3
Stage T1c
Prostate 71 grams 
Biopsy: Cancer 5% in one of twelve modules
DaVinci April 16, 2007, Cathter Removed Day 8
Tumor Confined To Prostate,  Gleason 3,3
Surgical Margins and Seminal Vesicles Are Negative for Tumor


Tamu
Veteran Member


Date Joined Oct 2006
Total Posts : 626
   Posted 4/30/2007 7:07 PM (GMT -7)   

J,

I just hate it when I tell someone that I had prostate cancer and they then tell me that I had the good one.  As you know there is absolutely nothing good about PC and what men with it go through.  It is life changing no matter what degree of results and recovery you have from treatment.  You are being methodical in your approach which is exactly what you need to be.  Many of us with PC have had to work our way through the opinions of urologist as to treatment.  I still am surprised at the difference in the types and numbers of different post diagnosis test among urologist.  In my case I never had a post diagnosis test and my urologist said that they tell him very little.  Of course, I did not have a positive DRE which according to your stage you did. 

As to types of surgeries my urologist had done over 2,000 open types when he began doing the Da Vinci.  He has now done over 1400 Da Vinci's.  He told me that he committed to learn how to do the Da Vinci because he was not convinced that it was better then open and the only way he knew to find out was to start doing them.  He is the head of a urologic center at a major univeristy so they keep a lot of statistics.  The last time I had an appointment he told me that they were not ready to publish yet but their data comparing complication rates and results indicate that the Da Vinci does have an edge over the open but it is not a large difference.

Look forward to hearing from you as you go through your journery.

Tamu


Diagnosed 7/6/06, 1 of 10 core samples, 40%,Stage T1c, Gleason 3+3
Da Vinci on 11/01/06, Catheter out on 11/13/06
56 Years Old
Post Op Path, Gleason 3+3, Approx. 5% of prostate involved
Prostate Confined, margins clear
Undetectable PSA on 12/18/06
No more pads as of 1/13/07
Began injections in April '07


Mike A
Regular Member


Date Joined Feb 2007
Total Posts : 213
   Posted 4/30/2007 7:31 PM (GMT -7)   
S_W
Even though I knew people meant well, I wasn't crazy about the "Best one" cracks either. Then one of my dearest Cousins was diagnosed with Lymphoma, and my Brother was diagnosed with a Stage 3 Melanoma, and I realized....I do have the best one! Keep the faith! With your positive attitude, I think you can safely change your name to survivor_gonnabe!
Mike
June 2005 - Age 53 PSA 4.8 at regular physical
October 2005 - After several rounds of anti-biotics, PSA 5.2 at Urlogist
November 2005 - Biopsy negative
July 2006 - PSA 5.9 at regular Physical
October 2006 - After several more rounds of anti-biotics PSA 8.1
November 2006 - Second biopsy - Positive
December 2006 - Gleason (3+4=7), Tumor T1c, CT Scan and Bone Scan Negative
January 2007 Robotic Prostatectomy - Tumor confined but larger than thought, only one nerve able to be spared. Margins clear.
February 2007 - Three to four pads a day, no erection with viagara.
March 2007 - Down to two pads a day, had first intercourse with Erecaid pump and bands, otherwise still flat tire.
April 2007 - First Post-Surgical PSA 0.02 and a great relief! Down to one pad a day. Still unable to achive erection without pump. Patience..Patience!!!!!!

Post Edited (Mike A) : 5/2/2007 10:40:28 AM (GMT-6)


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 5/31/2007 12:53 PM (GMT -7)   

J Yea I see you've signed on!!!!  Welcome Home!!!

 

 

edited: June 4th...

 

  tongue Helping to keep J’s Journey  together  for  “Newbies”  in the future…  tongue  

 

(Direct Link ~ just click on the title below and a new window will open!  

Reminder … click on the REFRESH icon once you get there)

 

 Click here…>>>  J's Home from Surgery

 

Post Edited (bluebird) : 6/4/2007 7:15:03 AM (GMT-6)

New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, December 13, 2017 9:40 PM (GMT -7)
There are a total of 2,905,165 posts in 318,835 threads.
View Active Threads


Who's Online
This forum has 158202 registered members. Please welcome our newest member, Tweetybird1969.
310 Guest(s), 8 Registered Member(s) are currently online.  Details
oldbeek, ericleer, astroman, Girlie, Lynnwood, ByHisGrace, Tweetybird1969, sillyliquid