HealingWell
Search Close Search

1588 journey starts

HealingWell Forum
>
Diseases & Conditions
>
Prostate Cancer
>
1588 journey starts  
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/4/2007 12:21 AM (GMT -6)
After first PSA came back at 17.2 and week later pathology indicating PC in 80% and 30% of cores I am now al over the map with fear and anger.
Recommended surgeon has done 50 DaVinci's and I am scheduled for 2/28. Reading Dr. Torrey's and Dr. Scardino's books, helpful but another first is posting online--humility seeks company and reading these threads helps. Not alot of high PSA's, I was praying for an infection not PC, still in denial about the results--can I wake up now?
Age 47 excellent health
First PSA test ever 12/06 was 17.2
Biopsy - Gleason 3+4=7 involving all core biopsies 80% on right and 30% left
Scheduled for DaVinci 2/28/07 near NYC

Posted 2/4/2007 12:38 AM (GMT -6)
Hi 1588,

Sorry you have to be here but this is a very good forum for support and informtation as you have found.

Its good that you have made your decision about which procedure to use. That is a big step in the process. Now don't look back. Get yourself into as good physical condition as possible. Become an active part of the team that is going to bring you back to health. Be their cheerleader and biggest fan. Keep reading these posts and looking for all the support and help that we have to offer.

You will get lots of hits in the next few hours and days. Plaese stay with us and we are with you all the way.

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.  Next PSA on 4/4/07.
 
 "Patience is a virtue - especially when dealing with the effects of PCa."

Posted 2/4/2007 12:30 PM (GMT 0)
Hi There 1588,

You are doing your homework and have made a decision and chosen a surgeon. Those were some of the big steps on your journey. The fear and stress is something that we all have dealt with and there is nothing anyone on this forum can do to help a whole lot with that. One of the things that I did to help both the stress and the preparation for surgery was to just get outside and walk. I worked up to 4 to 5 miles a day split between a morning and afternoon walk. Of course it was late summer/early fall when I did this while you are in a colder climate in winter. You have chosen the Da Vinci which will allow you a faster recovery and less blood loss. Dealing with the catheter will be your biggest nemesis post surgery. Your PSA is high but you are also relatively young so all-in-all everything may work out good for you. Others will chime in here today and all will welcome you to the club. Stay with us through your journey.

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

Posted 2/4/2007 10:37 AM (GMT -6)
Thanks Tamu and biker90---I guess good news that bone scan was negative but I had a second urologist compute a nanogram (?) and score tells me the chances the cancer is also outside the prostate is 50%, I'd rather go to Vegas. Just did a mile on the eliptical and was intimate with wife earlier-she is 10 years older and says she won't miss it--I'd rather go to Vegas 50/50 Colts/Bears just visual valium for me right now-glad I don't drink, Friend of Bill W.'s for a few 24's.
Age 47 excellent health
First PSA test ever 12/06 was 17.2
Biopsy - Gleason 3+4=7 involving all core biopsies 80% on right and 30% left
Scheduled for DaVinci 2/28/07 near NYC

Posted 2/4/2007 11:02 AM (GMT -6)
Don't make yourself crazy over this. I was diagnosed at age 61 with PSA of 26.5 and Gleason 7 (4+3). I chose external beam and then HDR brachy and now at age 63 my PSA is undetectable. And, believe me, my wife and I went thru all the anger and frustration you're going thru. I got 5 "second opinions" before finally deciding. Making the decision is the hardest part, and you've already dealt with that. Try to to relax as best you can.

-Gordy
Posted 2/4/2007 11:50 AM (GMT -6)

1588ap  &  Family,

  

                   A   “Special”  Warm Welcome  to  You!

 

I 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 their journey with you! 

 

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 listed in our Signature below…

Our thoughts and prayers will be with you as you continue your search for answers…

 

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 for New Members... Hope this helps you! :) Updated 02-05-2007

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

June 29th ~ PSA Less than 0.1 Non-detectable

Post Edited (bluebird) : 2/6/2007 11:47:27 AM (GMT-7)

Posted 2/4/2007 12:06 PM (GMT -6)

Hi 1588ap,

 

Yes ~ you can wake up and know that you have a whole new family of friends here to walk with you on Your Journey!!!

 

                                    Our Hands are Reaching Out to You!!!

                                                                              Special words borrowed from daveed/forum member

 

We can truly sit here and tell you….. We know exactly what you are going through!!  And believe it or not ~ with us telling you this and you reading about it…It will help you realize that You Are Not Alone!!!

 

 

KNOWLEDGE IS POWER... and POWER conquers fear

 

Pull every positive that you can into your scenario.  It will help you more than you realize!  Get the surgery over with and then see your pathology report and deal with that information at that time…. Rather than going in with the 50% attitude now. 

 

You are further along than most at this stage of the journey!  We made a very quick decision on the treatment we wanted… and would do it again in a split second…  I hope you will take time to read “Our Journey” listed below in our signature.  We chose RRP but a lot of the information can be brought into other areas of your recover/healing. 

 

We are all here for you!  Keep talking with us… it will really help!

Start exercising and remember to add Kegels & Stairs…. This is so important for continence recovery…. 

 

Keeping you close in thoughts and prayers.

In Friendship ~ Lee & Buddy

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

June 29th ~ PSA Less than 0.1 Non-detectable

Posted 2/4/2007 3:55 PM (GMT -6)
Hi 1588

Sorry to have you join the group but good to see you have made a decision. Move a head with conviction and with a positive attuide finding all the good reasons to be thankful and hopefully good news will follow. It is not an easy journey and they will be ups and downs in even what I will call good cases. I was 48 when diagnosed and felt lucky to have it found now giving me a better chance, 2 or 3 years from now it could have been much worse. I had the DeVinci done this past January 9th and so far so good and I a wait my first post surgery PSA test on March 12th for one more validation that things are on the right track. Even I who have had pretty good results all around have had up and down days and it challenges you to the best to stay up. I have prepared myself for this next date that if the results are not what we are hoping for then I must ready to make the next decision, but I am optimistic that I will not need to make this next step. However if it happens I can still beat the next challenge with the next treatment. With surgery I have more insight as to how bad and far it had spread. My doctor was reassuring in the fact if he felt it had progressed far beyond the prostate he would not even recomend doing this surgery and recomend different treatments. I know it's hard but have faith in you and your doctors decison and you will be back on our feet shortly. While I was in good shape I made sure to hit the treadmill and log more miles and begin the kegel excersies prior to surgery. To this I believe this has helped with the dreaded side effects as they have not been a major issue with me to date, althrough I am just 26 days post op. But I am scheduled to begin trying a limited work schedule tomorrow. Stay strong and we will all be there for you.

norskie
norskie
Age 49, PSA 6.22 on 9-26-06
Biopsy 11-01-06, 2 of 13 cores 10% cancer, 2 other cores abnormal Up-dated 20% prostate cancerous
Gleason score 3+3=6 After Pathology report 3+4=7 some agressive 5 cells found
De Vincie surgery 01-09-07 UW Madison
Pathology Report- cancer 100 % capsual contained 1-18-07
Catheter removed 1-18-07 suffered bladder spasms Catheter reattached 1-18-07
Catheter removed 2nd time 1-24-07 

Posted 2/5/2007 7:11 PM (GMT -6)
Hey 1588,

Like Gordy said, don't make yourself crazy over the numbers. Lots of treatments are available and I'm sure you are researching them.

I'm a friend of Bill's too. If you want to take that topic off-line, I'm at biker90@comcast.net. That gets me at home and on my mobile.

Good luck...

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.  Next PSA on 4/4/07.
 
 "Patience is a virtue - especially when dealing with the effects of PCa."

Posted 2/6/2007 9:58 AM (GMT -6)
hi 1588 - you're where a lot of us were months or even years ago. I think making the decision on which course of treatment to take was the hardest part. now you know where you're going and can take this month to get (or stay) in great shape, do those kegels, and have some sex. I know it's hard but try and relax and enjoy life. kat
Husband Jeff 56 years old diagnosed July 27, 2006
PSA 6.5, 2 positive areas in biopsy, Gleason 3+3=6
Radical Retropubic Prostatectomy August 30, 2006
pathology report - all clear - cancer gone
1st post-surgery PSA test 0.1, 2nd post-surgery PSA test 0.1
no more pads Oct 12, 2006
first "real" erection with use of pump 12/16/06

Posted 2/9/2007 4:12 PM (GMT -6)
Just returned from last MD visit before surgery--I had alot of questions like positive margains, perineural involvement (not listed on path. report) nomograms and felt like his responses were -nothing means anything until the prostate is out. He has done 50 robotics and we live an hour outside of NYC. Not sure wether to stay the course or look for new surgeon- some research says 30 robotic surgeries are enough others say 100 are needed for expertise.Another says 200 to equal the positive marins of an RRP surgeon. Good thing I have a vacation a wee before surgery on the 28th--I really don't want to go to NYC for follow up--just got pulled over for speeding fome Norwalk to Wilton, my mind is elsewhere glad I am not alone.
Age 47 excellent health
First PSA test ever 12/06 was 17.2
Biopsy - Gleason 3+4=7 involving all core biopsies 80% on right and 30% left
Scheduled for DaVinci 2/28/07 near NYC

Posted 2/9/2007 5:01 PM (GMT -6)
hi 1588,
You and I are near exact matches on the scores. My surgery is this coming Friday. da Vinci at the City of Hope in SoCal. Please watch my posts as I will be documenting this for all. But you and I are very close match and I am certain we will bond our experiences. You have some others in this thread that certainly have made me more positive. I hope they have done so for you as well.

Tony & Ruth
Age 44
4 of 8 cores 80% Left side 20% right. 3+4=7
PSA=19 in October, 13.5 in December
Bone Scan Negative
daVinci scheduled for 2/16
Posted 2/9/2007 7:10 PM (GMT -6)
Hey 1588,

Your decision to have surgery is behind you so don't look back. Get in as good physical condition as you can between now and the 28th. Look up. Be a cheerleader for the surgical team. The only thing you can bring to the OR is a positive attitude and your anethsitized (sp?) body!

Wishing you all the best and hope the cop looks the other way next time...

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.  Next PSA on 4/4/07.
 
 "Patience is a virtue - especially when dealing with the effects of PCa."

Posted 2/9/2007 11:20 PM (GMT -6)
hi 1588

if you live one hour outside of nyc, i don't understand why you didn't seek out one of the best robotic surgeons who happens to be in manhattan (i.e., dr. ash tewari). he has done at least 2000 robotic surgeries. he heads up robotic surgery at ny-presbyterian (cornell). he was one of the early pioneers in robotic surgery with dr. menon at the henry ford hospital before he was recruited by ny-presbyterian. it would probably take up to three months to schedule surgery with him. based on your stats, you are not in the earliest stage of PC. it might be a tough decision to change surgeons now. the key question is whether or not you have talked with some of the surgeons patients to find out what his track record has been with the few robotic surgeries he has performed. the key advice given to prostate cancer patients is to find the best qualified doctor for your treatment even if you have to travel away from home. good luck to you!

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 2/07.

Posted 2/10/2007 6:20 PM (GMT -6)

I agree. It is nice to support your local surgeon. But, if it is at all possible, I would seek the MOST experienced surgeon you can find, that is covered by your insurance. If Ash Tewari is a possibility I'd get right on it, starting on monday.

Do not worry about hurting the feelings of your local surgeon, or your urologist. If they are true professionals, they'll understand and be supportive. If they are not supportive and understanding they would not be on my short list for my treatment team.

Good luck on your journey.

If the local dr. with the 50 da vincis is the one, you will still probably do fine.

Markus

Age, 53
PSA 3.76, Gleason 6, T1c, scans negative
psa doubling time 35 months
Still researching and deciding treatment options.  Leaning towards da vinci robotic.

Posted 2/12/2007 7:27 PM (GMT -6)
just back from NYC-- good second opinion from a top 10 surgeon--yes he is an expert-- yes I need to consider all options-but as a good friend of mine once said-one is too many and a thousand is not enough--here I mean number of surgeries-vs-everything else-expertise yes 1300 vs 50 is big-the analogies are many-the $ no object-life no price-yet there are so many other varibles most of which revolve around getting the walnut out-positive margins yes--stats yes-goal self-contained yes-best % yes--gut feeling, priceless-
Age 47 excellent health
First PSA test ever 12/06 was 17.2
Biopsy - Gleason 3+4=7 involving all core biopsies 80% on right and 30% left
Scheduled for DaVinci 2/28/07 near NYC

Posted 2/12/2007 9:03 PM (GMT -6)
Hi again 1588!

i am glad that you consulted a top 10 surgeon in NYC which I assume is Manhattan. however, your message rambles on somewhat incoherently such that most of us will not understand the philosophy your are espousing or what decision you expect to make. i am not sure that your analogies fit in your present situation--you are talking about your life and its future after major surgery. an hour trip to Manhattan is nothing--I commuted there for many long years and enjoyed the train ride! if the best surgeons are there--go for it. you don't need your local surgeon to gain more practice by doing your surgery. i say that with "tongue in cheek" because every surgeon has to get experience, but the patients are always at a greater risk until the surgeon has a sufficient number of surgeries behind him or her. when some robotic surgeons have done 1000 to 2000 or more of them, then 50 doesn't seem like many. please cut let us know what your final decision is--the suspense is killing us! we are on your side and want your operation to be a great success. good luck!

Dave

p.s. sorry to be so tough on you!

further p.s. after writing this i saw one of your posts elsewhere indicating how burned out you are from research. i know how you feel--at thanksgiving time last year, after 2 1/2 months of iintensive research, i was totally burned out, disgusted and some what depressed. at this point, take a brief rest, think things over, and finally go with your heart as to who does your surgery. i didn't mean to get so carried away with my advice.
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.

Post Edited (pcdave) : 2/12/2007 11:30:46 PM (GMT-7)

Posted 2/12/2007 11:38 PM (GMT -6)
Hey pcdave, maybe rambling is just what he needs to do right now. Did you ever think of that....

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.  Next PSA on 4/4/07.
 
 "Patience is a virtue - especially when dealing with the effects of PCa."

Posted 2/13/2007 12:21 AM (GMT -6)
biker 90 (aka jim)

i always look up to those older than me because they have more wisdom and experience! i guess it is my younger age than yours that foolishly caused me not to consider that 1588's rambling on was good for him! thanks for calling this to my attention.

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.

Post Edited (pcdave) : 2/12/2007 11:32:36 PM (GMT-7)

Posted 2/13/2007 1:01 AM (GMT -6)

Hi ~ 1588…

 

Priceless Posting  …….. So many variables to shift through… but you will shift through it all…once the OVERLOAD is behind you…..

 

STOP….. and take a deep breath....

 

~   ~   ~   ~   ~   ~   ~   ~   ~   ~   ~   ~   ~  

Now take time to re-group

and Remember…

 

… YOU MAKE THE DECISIONS… YOU HAVE OPTIONS…

 

All different kinds of lifestyles…  different PSA scores, different treatments, different incomes, different jobs, different health issues, all different ages, and most of all… MENTAL ATTITUDES ARE DIFFERENT.

 

Take the time that you need to make your decision.  We are here to support you no matter what your decision is.

 

Keeping you extra close at this time!!! 

In Friendship ~ Lee & Buddy

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 :)

Posted 2/13/2007 9:13 AM (GMT -6)
Hey 1588, this is the place to spill your guts. We all benefit from each other.

My daughter is a Friend of Bill's, so I know that you have done some good emotional healing in the past. I expect that you will successfully negotiate this bump (big one) in the road.

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!

Posted 2/27/2007 9:13 PM (GMT -6)
thanks guys-sorry didn't respond sooner--just got back from Mexico where my attention could take a break from PCa research-which is still overwhelming, and see the billion stars, whales, Marlin, water volleyball etc.-but I'm going with my local MD--doing the pre-op routine now-with DaVinci set for tomorrow 2/28 at 1 pm -my last rambling about 1 is too many 1000 not enough is an AA reference-but somehow drinking booze and PCa are related for me-This addict doesn't want to feel pain, emotional or otherwise so I've spent some days (24 hours) trying to accept pain rather than run--I know there is not a problem out there that a drink would make better--even 1000 drinks would not be enough to drown the fear I have right now--I just can't second guess myself-I need to stay close to the program, read the third step, take suggestions from others and talk to others even though I would rather isolate and stay in my own head, an admittedly dangerous neighborhood. My big fear is the post-op biopsy, even with tough numbers I will stay positve-and learn from those of you older and wiser and same age-thanks TC
-GeorgeM
Age 47 excellent health
First PSA test ever 12/06 was 17.2
Biopsy - Gleason 3+4=7 involving all core biopsies 80% on right and 30% left
Scheduled for DaVinci 2/28/07 near NYC

Posted 2/27/2007 9:45 PM (GMT -6)
Good luck George,

We are all here waiting for you to reach the other side. Take one step at a time and concentrate only on the next indicated task. Fear distorts reality by making us think about dozens of possibilities when only one will actually happen. Facing the unknown is like diving off a high dive in the dark without knowing for sure that there is any water in the pool. You are on the threshold now. Step forward boldly with faith....

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.  Next PSA on 4/4/07.
 
 "Cancer feeds on fear - starve it to death."

Posted 2/27/2007 11:21 PM (GMT -6)
Hi Friends
I have read and reread posts that advise others to "go with the guy with lots of surgeries". While I can't totally disagree with this advice, I think it is limited and somewhat ignorant of reality.

I do not know the number of surgeries that my doctor performed before mine. I asked if he was experienced, and I had numerous local recomendations from nearby physicians and patients. I think that he has done hundreds, but not 1000's of Da Vinci procedures. But, I did feel that he and his office were very professional. If I walked into an office and felt uncomfortable, I would leave. ( I have already done that).

You do a disservice to professional surgeons who could save your life, if you walk away because they have only performed xx# or so procedures. It is not a numbers game.

I also fear that Da Vinci type surgeries could become like a high end video game. They could be (and maybe have been) performed by a very campetent "game player". I still want my medical provider to be human, and have some compassion and personel interest in me "the patient".

I know from reading here that PCa survivors have had all sorts of treatment. We must all work to make it even better for those who come after us. I admire the effort that some members of this forum put forth every day. They care about those who will be here in the future.
 
Da Vinci surgery 1/16/07
psa 11/05 (2.9)
psa 7/06 (6.7)
biopsy 10/16/06
Gleason 4+4=8
grade T2A
post op pathology- OK
age-65 going on 29
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

Posted 3/3/2007 8:19 AM (GMT -6)
Surgery complete and back home resting-------60 hours post op--bag is not as painful as I thought-slept seven hours last night, able to turn on side, walking around 5-10 minutes at a time--some stomach pain but minimal all things considered--definitely a leap of faith--all I remember is being moved onto the table--and waking in recovery-out of the hospital in 20 hours
1588
Age 47 excellent health
First PSA test ever 12/06 was 17.2
Biopsy - Gleason 3+4=7 involving all core biopsies 80% on right and 30% left
Scheduled for DaVinci 2/28/07 near NYC

✚ New Topic ✚ Reply
12

Forum Information

Currently it is Tuesday, October 23, 2018 5:27 PM (GMT -6)
There are a total of 3,014,280 posts in 330,081 threads.
View Active Topics

Who's Online

This forum has 161973 registered members. Please welcome our newest member, Lymie2028.
237 Guest(s), 11 Registered Member(s) are currently online.  Details
ewafromwarsaw, nccajun, Calduger, Kent M., PC Legacy, Carib_Lyme, Lymess, John T, Hummingbird22, ddyss, oregonhay