Posted 7/13/2007 2:20 PM (GMT -7)
Hi   ~ Ginjer &   Loved Ones,   A    “Special”   Warm Welcome   to   You!         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!!!   Keeping you close in thoughts and prayers as you move forward in 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) We hope this link helps you!! Scroll down to the 3rd posting when you get there for some quick links.. Helpful Hints ~ & ~ Direct Links to Important Topic Threads ~ Hope this helps you!! :)  
Posted 7/13/2007 3:16 PM (GMT -7)
Hi ~ Ginjer,   Best Friends….. ...then your journey into this unknown world will be much smoother because of your relationship with your honey!!!   Traveling with friends who have been where you are right now and some are right where you are now….will make the path much smoother.    STOP ~ take a nice deep breathe …. Do it again …. Now….   Take time to understand (gain the Knowledge) that will help you both to cope with this diagnosis.   Knowledge is Power and Power truly takes away the fear.   Buddy & I invite you to visit our personal thread “Our Journey” (link in signature below)…   If one thing from our experience helps you ~ it will make our hearts happy…   It can give you 1 view of many paths that are now available to all of us.   How fortunate we are to be living in a time where we really do have options.   Thank you for reaching out to all of us.   We are here for you ~   Stay close and we will walk with you. In New Friendship ~ Lee & Buddy mama bluebird - Lee & Buddy… from North Carolina J   We invite you to visit our personal thread:   Click Here:   “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 7/13/2007 8:33 PM (GMT -7)

Ginjer,

We all know it's a shock to suddenly be in this situation.  I have to admit that since my diagnosis last November, prostate cancer has been a big thing in my mind.  However, beating it has been larger!  Officiating high school sports is a huge part of my life, and within two months after surgery, I was back at it.  (I do put in a small womens pad in during my games, just in case, but haven't really needed it, so will stop that soon.)  One of my biggest fears was the cathedar, and after I got into a routine, it was just a nuisance, which was out in 10 days.  I started Kegal exercises right after diagnosis, and am doing them now every morning.  Incontinence is not an issue!  I have a whole bunch of depends and mens pads that I really never used, that I stored in the attic to use when I get in my 80's or 90's.  I have lost some weight, that I should have done 10 years ago, and am walking an hour a day, together with my officiating.  In other words, I am feeling FINE!  I must admit, that sexual functions are not where I would like them, but my wife has stated all along, that my being here for the long run is far more important.

As far as treatment, I highly recommend the Davinci Surgery.  Even though I had a worse case than the biopsy indicated, I am happy that I know the extent now, rather than wondering and worrying about my PSA's with another treatment.  (As my surgeon said, "The best thing is that your prostate is now in a jar of formaldehide somewhere!")  I have been on Zoladex for about three weeks and will start adjuvant radiation therapy the end of August - all because of my positive margins.  I still feel great, and worked a doubleheader baseball game last night, working the plate for the nightcap which went into extra innings.  If your husband has surgery, you could find out that it's all contained, and he'll be good to go!  Keep positive thoughts, do plenty of research & reading, and things will work out.


PSA 4.7 (up from 3.2 one year ago)
Biopsy November 8, 2006
1 of 10 cores positive 5% LEFT Side
2 others questionable (small gland proliferation)
Gleason 3+3
Robotic surgery January 19, 2007
Post Surgery Pathology
     Stage T3a, Gleason 3+4, positive margins and
     capsular penetration RIGHT Side
Post Surgery PSA:  March 5:  0.01
5 month PSA, June 13, 2007:  0.08
Adjuvant therapy began June 26 with Zoladex injection
     Radiation to commence in late August
 

Posted 7/14/2007 7:31 AM (GMT -7)

Biker-Thanks for the quick responce. He only has the two options,robtic or laproscopic and after radiation. His doc does not want him opened.  AZTEC- You and your wife have a wonderful and memorable time this weekend. My husband cannot have a partial, prostate is all cancer . CEDAR-I will try to edit,i'm not very computer savy. Thanks for all the info. It sure has made me feel better . Bluebird - Thanks for the welcome. I sure will be here alot. I'LL I'll be reading your link soon.I have my granddaughter this weekend and we are off to the hot air balloon festival soon . Hawkfan-All I want is my BEST BUD here with me and our family. Grandkids and kids adore him . He is OUR ROCK...We still have not told any of our family yet. I hate to see how our kids will react and the rest of the family. We want all the facts in first. We have an appointment with a radialogist oncologist on monday. YOU ALL BROUGHT TEARS TO MY EYES AND JOY TO THIS LOST WIFE....I AM NO LONGER LOST BUT FOUND SOME WONDERFUL CARING PEOPLE .....BIG HUGS TO ALL, AS I AM A HUGGER!!!!!!                                          

Posted 7/14/2007 8:05 AM (GMT -7)

Ginjer,

You can easily Edit your signature:  When you are logged on, look for the "Control Panel" on the left side of the top of the page in one of the blue bars.  Click on it and find the signature editing access.

This paragraph is to agree with you about not telling everyone at this time:
It is difficult to calm others when you are trying to be calm yourself!
I know a lot of people casually (work & church) and am from a very large family. 
Before the surgery, I only told a half-dozen family members, a dozen church members, and 3 supervisors exactly what was going on.  Aftwerwards - with good news-, I told more of my immediate family - mostly to encourage those that might need testing - and no one else. 
I didn't and still don't feel the need to explain the male reproductive system to so many of my friends that would show genuine concern. 
Some here take a more civic minded Lance-Armstrong-Like approach and spread the gospel of testing and action.  
It's easier to tell many later as "untelling" is not an option.
There is a good chance it is all good news!
ICTHUS!

CCedar


~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*
2 Years of PSA between 4 and 5.5
Biopsy 23DEC06 
Only 5 percent cancer in one of 8 samples.
Gleeson 3+3=6
Radical Prostatectomy 16FEB07 at age 54.
1+" tumor - touching inside edge of gland.
Confined:)
***************
Texas Hill Country
FRESH Produce Department Manager
Have you had your 5 colors today?

Posted 7/14/2007 8:08 AM (GMT -7)
ginjer--welcome to the site. You will find a great number of people here who care very much and have a lot of knowledge and support.

I know it is silly to say this but slow down. What I found was that the perception of Prostate Cancer on the street is a long way from what the facts are.
For some reason when this disease is mentioned everyone gets this pale look of shock and futility. The factual statistics are very very good. Yes it is serious--but most of us not only survive but survive wonderfully and completely.
Look around the site--talk to individuals by posting on their threads and I think that you will discover that the prognosis in all areas for you husband is great. And in the process you will have a whole new family that is truly there with you.

I think that a quick look at my signature line will let you know that my cancer was very serious. I too had cancer throughout the prostate (even though the sampling came up with a few biopsies showing clean). I had an extremely high PTI. There were a lot of signs that said I was in it for a long time. Even my doctor who has performed over 700 surgeries said that he sees 15 cancers before finding one like mine. The post op pathology found cancer even worse than the biopsy.---the results as you can see---clean margins--complete use of bladder within a few weeks--and starting to address ED issues.

Of course everyone is not as fortunate as I, however, the statistics on treatment and cure rate are really good.
And from my experience, after you have made your own personal decision and choice on the type of treatment that is appropriate for you. Move ahead. I liked immediately being on this side of the hill (done with the wondering) and moving ahead with healing.

Welcome to the site. You have friends here

David
Age 50
Diagnosed 4/24/07
PSA 5.5
cancer in 8 of 12 biopsy samples
gleason score 4+4=8; up to 70% pti;
some perineural invasion
surgery performed 5/23/07
clean margins--clean lymph--clean seminal vessel--capsule not penetrated
gleason score upgraded to 9

Posted 7/14/2007 9:09 PM (GMT -7)

Ginjer:

Check the "Hugs are universal" post.  It's for you.

Dutch-ESS

Posted 7/15/2007 6:20 AM (GMT -7)
Hi ~ Ginjer,   This “Hugs”   for you !!!         Buddy & I waited until the last few days before surgery…to share with our family the diagnosis and treatment we chose.   Needless worry for something they had no control over and we were fine dealing with it together.   My work family was informed closer to the date that I would be away due to payroll issues, paying bills, etc… that needed to be completed before my time away.   Fortunately we were heading into a 3-week break from school and it did make things easier all the way around.   Now ~ we spread the word.   We don’t go into a long drawn out conversation… we simply state… "We have traveled the path of prostate cancer and we are here to share with you that if caught early…. It is curable….   Make sure your husband, sons, brothers, nephews, uncles, and grandparents…..   get tested."   They look at Buddy and see a very healthy young man at 54…    From this conversation in the pool at the YMCA with a few ladies…. We had 2 ladies approach us when we entered the pool a few weeks later…   They said they had heard from another lady about our experience and that their (husband/brother) was recently diagnosed.   Here enters a new bond of friendship ~ *mvesr   (Mika, Dale, and sister Kay) Mika & Dale have joined us here at HealingWell  and his journey along with many others are shared here for all of us to pull from...    Spreading the word is a personal decision.   And in the decision of moving forward always remember……   KNOWLEDGE     IS     POWER   ...   and   POWER conquers   fear   YOU MAKE THE DECISIONS… YOU HAVE OPTIONS… ~ and ~ Your decision will be the right decision for you!!!   Keeping you close during this time of searching for answers… Stay close and as Wittler would say…. STAY STRONG   In Friendship ~ Lee & Buddy
Posted 7/15/2007 7:12 AM (GMT -7)
Hi, Ginjer. While you're feeling frantic right now, you'll gain so much strength by just being here and surrounded by all the wonderful folks in this forum (along with a lot of experience, support, love, and hugs).

Next, this is only my opinion, but if the cancer is contained, they can still perform "nerve-sparing" surgery and you need to ask about that. That means a better chance of sex after!!!! In a different way, perhaps, and not as spontaneously at first, but please don't reach a mindset that it will never happen again.

If you can take the time, go back through some of the past threads. I promise, you'll gain knowledge and that will give you the power to face this challenge emotionally and physically.

Then, you can begin to focus on getting to the next step - and that means a cure!

We look forward to getting to know you better. You've found a great new family to help you get through this. We'll be keeping a close eye on you!
Husband age 66
PSA on 5/1/06: 4.2 (had doubled in 13 mos. and rising monthly)
DaVinci Surgery 8/2/06 - Austin, TX w/Dr. Randy F.A.G.I.N.
T2a (at biopsy)
At pathology - cancer cell leakage into fatty tissue
Post-Surgical PSA on 10/3/06 - undetectable!
Update: 11/1/06 - perhaps bladder neck involvement; 30%-50% chance of recurrence
Future: PSA tests twice-yearly for now - Next one: 4/17/07
 

Posted 7/15/2007 12:42 PM (GMT -7)

Ginjer,

Please take a step back and begin logically planning out the next steps.  You have been hit hard and there are a lot of emotions bombarding the two of you.  Information is the most important need for the two of you.  Second and even third opinions are critical sources of information.  It is frustrating dealing with a PCa diagnosis as there is no obvious treatment.  While the majority of men on this site have gone with a surgical treatment I would encourage you to look at other forms.

As to sex even if the nerves have to be removed to ensure removal of all of the cancer there are still interventions that can be done to allow you to have sex.  I presently am using penile injections and they give me an erection just like I had before the surgery and the sex that my wife and I have is just as good if not better so take heart in this information and focus now upon getting rid of the cancer.

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
Undetectable PSA on 6/25/07

Posted 7/15/2007 2:15 PM (GMT -7)

Ginjer,

There are surgeons and there are surgeons. First, your husband needs to get a second opinion on what consistutes the best procedure for him. He might choose a nerve-sparing prostatectomy, which would increase his changes of retaining his ability to function sexually but required a longer recovery time. He might even be a candidate for the implanting of radiation seeds, though, to my mind, nothing beats surgery in terms of increasing one's survival. Get on the Internet and look at what treatments are available for his stage of disease, which sounds like T1. Whatever procedure he selects, chose a specialist who has done a large number of them in a hospital that does a large number of the procedures. Having a backup team experiences in the procedure important as well.

Prostate Veteran

Posted 7/16/2007 5:10 AM (GMT -7)
Yo, Ginj.

Let me chime in with those above that "all is not lost". First off, treatments these days are excellent, from both the standpoint of cure rates AND also side effects. Second, I'll give you the same advice I was given when I first got my diagnosis--"you've basically got to take on your own education in biology, cancer and treatment options, almost like you're getting a graduate degree to the point that you feel completely confident in your choice of treatment and selection of your MD". I also went with the DaVinci and would do it again in a heartbeat if faced with the choice.

This is not a new path, it just feels like it to those of us who are walking on it. But my Dr's predictions have been almost spot-on in terms of timing of my recovery and how things would go.

Get a second (and third) opinion. Oh, and get yourselves to a prostate cancer support group. It will be a big help and source of valuable information, as the guys in the group will know the reputations of all the local doctors and specialists. And will be able to share their personal tips for getting through this.

God bless.
Age, 53
PSA 3.76, Gleason 6, T1c, scans negative
psa doubling time 35 months
Da vinci robotic surgery May 31, 2007,
Nerves spared
Clear margins, clean pathology report
Catheter out at 4 days.
Dribbling like a basketball star
At 10 days out, dry all night, most of the morning.
Walking 2-5 miles per day.
Down to about 4 pads/ day.
 

Posted 7/16/2007 7:57 AM (GMT -7)

Ginjer

As you can see there is a wealth of knowledge, and support on the message board.  All GOOD advise.

My 2 cents for whatever help I can offer.  I was DX in Marxh went out to the Cancer treatment centers of America for a second opinion.  The center is mainly a radiation treatment facility in the treatment of prostate cancer.  I was luckly to talk with a doctor who also recommended surgery.  I had the open surgery witha a very experienced surgeon, and 3 weeks out am doing terrific.  I am a big supporter of the open surgery simply because it is more of a "FEEL" procedure, but that is just my slant on this.

As was mentioned before the most important factor is a experienced, and proven surgeon, not matter what treatment you choose.  Keep positive, this is VERY curable!!!

 

All the BEST!


Broker 59


Date of Dx 3/20/07

PSA: 2.5

Gleeson: 3+4

Stage: T2

Bone Scan Clean

Date of Surgery: 6/21/07  Open RP
 
Post Opp: ALL NEGATIVE margins & L/N, S/V.
Cath out after 18 days = BIG RELIEF!!!

Posted 7/16/2007 10:36 AM (GMT -7)
Greenacres, Thanks for your reply. I asked the doc about the nerve sparing, he said no.My husband only has the two options laproscopic or the da vinci. I think he doesn't want to chance nicking the prostate and having cancer leak out.TAMU-Thanks for the advice on the injections. Husband hates needles, but if he wants to try bad enough,just maybe! PROSTATE- Doc says everything must go,no nerve sparing.Thank-you for the advice.NAIMNUT- Thank-you for your reply. Doc said no to the nerve sparing. H doesn't even want him opened up. Da Vinci or laproscopic only. Doc wants him in the operating room asap! another Doctor will be preforming his surgery,just maybe he will view some other alternative. I can always pray and hope. He will be having surgery at HENRY FORD HOSPITAL in Detroit Michigan. We have no date yet, but could maybe today.BROKER-Thanks so much for your reply also. Everyone here is so caring and sharing of the truth about prostate cancer.It needs to be told to all our fathers,sons,brothers and friends. Most of all the meaning of the psa numbers to be explained. THAT SHOULD HAVE BEEN TOLD TO MY HUSBAND WHEN HIS NUMBERS WERE 2.0 THAN 3.3. Then he missed a yearly physical last year!!! sad   GINJER
Posted 7/16/2007 10:51 AM (GMT -7)
Husband just emailed me from work. He just had gotten back from the oncologist. Doc just recommended the surgery and 5 days of radiation a week for 6-7weeks and be put on lupron,don't know if that's for ever.NOW KNOW HIS GLEASON SCORE WAS 9 NOT GOOD.
Posted 7/16/2007 10:51 AM (GMT -7)

Hello Ginjer,

I have read all the posts. The information you received is teriffic. The cancer seems to be confined. This is good news. Now you can select a treatment. I take it you have done some research and even got a second opinion. Take a minute or two to realize that you have already helped your husband in a very loving way by finding this site and reading people's advice.

All Best Wishes,

           Vet   

           

 

Posted 7/16/2007 10:53 AM (GMT -7)

Ginjer

Just my opinion but if your husband is a canidate for robotic, HE IS a canidate for open Radicial Prostatechmy. If this doctor tells you otherwise I would be looking for a NEW surgeon.  I can understand you are in a nervous, panic mode, but you, AND YOUR HUSBAND, have to muster all your strength and deal with this.  You only get one shot to make the RIGHT decision.  I spent 3 months meeting with different specialists and opted for the open procedure.  My surgeon told me I could also do robotic, but the best robotic surgeons in the Philadelphia were booked 3 months out.  Looking back I am glad I went the open way.

One concern I have is the fact that your husband was given a shot of Lupron.  The 2 robotic surgeons I spoke with would not agree to a meeting with me if I had taken Lupron.  Lupron shrinks the prostate, and surgeons want the prostate to be as big as possible for best results. I would press this Doctor of yours for ALL his results, and how many robitic operations has he preformed. 150 should me a minimum.  JUST DON'T LIKE THE SOUND OF THIS GUY!

Check out Dr. Peter Scardino's prostate book, especially the chapter on surgery. 

 


Broker 59


Date of Dx 3/20/07

PSA: 2.5

Gleeson: 3+4

Stage: T2

Bone Scan Clean

Date of Surgery: 6/21/07  Open RP
 
Post Opp: ALL NEGATIVE margins & L/N, S/V.
Cath out after 18 days = BIG RELIEF!!!

Posted 7/16/2007 11:22 AM (GMT -7)

Ginger, your husband if very fortunate that they found  his Perineural invasion upon biopsy and now the surgeon knows how to proceed.  They didn't find my PNI until final path and did the nerve sparing and therefore could have left cancer in those nerves, time will tell.  Also biopsy read by 2 labs showed (R) side only, final path showed both sides with 40% of gland involvement.

You are correct about knowing your numbers, I was checked yearly by urologist with DRE and psa.  My psa went from 1.8, 2.5, 3.5, 4.7 in consecutive years and was told everything was normal, and did not order a biopsy until it was 4.7.  Why this yearly rise did not raise his concern I do not know, as a layman I have read enough since September to educate myself about psa velosity, and now know that a biopsy should have done when it was 2.5 after climbing over 12 mos and most definately at 3.5, with a man of 54.  A surgeon I saw told me this cancer should have been taken out 2 years earlier.

If you have time you might want to get Dr. Walsh's book and also check Dr. Catalona's site concerning nerve sparing and PNI as he was one of the pioneers who perfected this procedure.  Your husband is fortunate as I am to have a caring and conerned wife.

I have read great things about the Ford clinic so it sounds like you are in good hands.  Don't forget about prayer, believe me it helps.

Ron


diagnosed sept 06
gleason 3+4=7, right lobe only
psa 4.7
RP Emory Atlanta December 2006
Path-negative margins, negative lymph nodes
negative seminal vesicles, multifocal perineural invasion, both lobes involved
40% gland involved
gleason 3+4=7
1st psa April 2007-<0.04
 6 Mos PSA <0.04

Posted 7/16/2007 12:05 PM (GMT -7)
VETERAN I-Thanks so much for the kind words. BROKER - I think the doc gave him the lupron shot because the cancer is aggressive.THANKS AGAIN FOR THE INFO. MONTEE- Thanks also for the info on the books. Yes the power of prayer is helping me alot .Could you tell me what is a PNI is, I have no clue-thanks to all..GINJER
Posted 7/16/2007 3:16 PM (GMT -7)

Ginjer:

PNI is Perineural invasion - this is the sheath that covers the nerve bundles and it means that the cancer has invaded this area which is probably why the doctor said there would be no nerve sparing surgery.  As Broker said, I too was under the impression the once a Lupron shot was given there would be a delay in treatment - my husband had proton and I'm pretty sure you have to wait several months before starting if you have been given Lupron.  Besides trying to slow down the growth of cancer Lupron is also given to decrease the size of the prostate for those men with enlarged prostates.

With your husbands PSA and high gleason it might be worth it to take all of his records to  a medical oncologist that could just bring everything together. 

Wishing you the best on your journey and since you are a hugger, (((HUGS)))) to you.  Your husband is very lucky to have you to share this journey with him.

Dutch-ESS 


Diagnosed Feb 2001  (Age 65)  Currently 72
PSA 4.8      Gleason 3+3=6      Stage   T2b
Completed Proton Therapy @ Loma Linda - Aug 2001
Have had no side effects.
6yr PSA - 0.19
 
Our responsibility now is to educate men about Pca, PSA and the importance of early detection. 
 
 

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