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goinlong
New Member


Date Joined Mar 2008
Total Posts : 15
   Posted 3/8/2008 7:57 AM (GMT -7)   
I just found out this past Wednesday that I have prostate cancer.  I do have my biopsy results but haven't had "the talk" yet with my doctor.  Even though I've done a lot of reading I'm still not sure how serious my situation is.  Fortunately I'm not freaking out and no one is preparing my eulogy.  I turn 52 tomorrow.  I guess I got a great birthday present in that my cancer was detected so it can be dealt with.  Here are my stats
 

52 years old

6-0 ht

185 lbs

good physical condition

 

Oct 6 2007 Blood test

- PSA 0.75

 

February 7, 2008 Physical by Dr. Rysso

- BP 120/80

- Pulse 55

- Cholesterol (total 212, tri 51, HDL 48, LDL 156

- PSA not tested

- DRE revealed possible ridge/bump on left side so suggests I get checked by a urologist

- Overall health is excellent

 

February 21, 2008 DRE by Dr. Joseph Cerny

- confirms small lump on left side of prostate

- prostate appears normal size

- recommends a biopsy

 

March 2, 2008 Biopsy by Dr. Joseph Cerny Jr., Minneapolis North Memora

- left side(left space 15%, mid 50%, apex 30%)

- right side all clear

- Gleason's 3+3=6

- Clininical T1c

- 90% organ confined

- 9% capsular penetratio

- recommends robotic assisted prostatectomy

 

March 12, 2008 1st Consultation scheduled with Dr. Cerny

 

March 18, 2008 Colonoscopy at Waconia Hospital scheduled with Dr. Tanghe

 

March 21, 2008 2nd opinion at Mayo Clinic by Dr. Lieber

 

 
 
I have a few questions to start with
 
1)  Do any of you have any experience with Dr. Cerny or Dr. Lieber?
2)  Does the 9% capsular penetration suggest that the cancer has left my prostate and entered other areas?
3)  Have any of you experienced back pain associated with prostate cancer, if so please describe it for me
4) Any suggestions on things I can do now to improve my post op recovery?  Specially the inconstinenece.
5) Anyone know if the fact that my PSA is so low (0.75 in Oct 2007) yet my Gleason is 3+3 tells me anything?

bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 3/8/2008 8:02 AM (GMT -7)   

tongue    Hi ~ Goinlong & Loved Ones ,

 

Welcome   to…   ~ HealingWell ~

 

and

 

A   Special   Warm Welcome  to  You !

 

Knowledge gives us POWER….  POWER takes away the fear.

 

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

 

 Click  on  link  below for important information that will help you ~ help us!!

 

Welcome New Members ~ to HealingWell

 

The information (link) listed above is to help you get around the forum! 

 

v       This is a journey best traveled with friends. 

Welcome ~ New Friend from all the members here... on HealingWell.com

 

v      IdahoSurvivor ~  Moderator for Prostate Cancer Forum

http://farm2.static.flickr.com/1160/1313099593_9f819e3ff8.jpg

 

v      TC-LasVegas ~  Moderator for Prostate Cancer Forum

 

v      bluebird ~  Moderator for Prostate Cancer Forum

http://i206.photobucket.com/albums/bb179/mamabluebird1955/mamabluebirdWelcome.jpg

 


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4461
   Posted 3/8/2008 8:15 AM (GMT -7)   
goinglong, welcome to the club.  Sorry you have to be here.  You ask some good questions, most of which I can't answer.  The one thing I will is to learn how to do Kegels, begin to do them religiously from now til surgery.  Combine them with as much walking as you can get done, especially including hills or stairs, along with ab crunchs or situps to help get the gut in tone while you can.  You started the right way, by coming here, and doing a lot of reading.  Take advantage of both while preparing for surgery. 

James C. 
 
Help support the forums so they can support you:  http://www.healingwell.com/donate 
 
Age 60 
4/19/07   PSA 7.6, referred to Urologist, recheck 6.7 06/05/07
7/11/07   Biopsy- 16 core samples, size of gland around 76 cc. Staging pT2c
7/17/07   Path report:  3 of 16 PCa, 5% involved, left lobe , GS 3/3:6. 
9/24/07   (Open) Retropubic Radical Prostatectomy performed 
9/26/07   Post-op Path Report: GS 3+3=6 Staging pT2c, 110gms, margins clear
10/15/07  ED- begin 25mg Viagra nightly, Fully continent
11/15/07  1st Post-surgery PSA-0.01
01/14/08  Caverject started/stopped, aching and pain , Bimix started
02/04/08  Bimix X 6 tries, .1mL, .15mL, .2mL, .3mL, .4mL, .5mL, success at .5mL
3/24/08   ED- 6 mts.-continue 50mg Viagra and pump-no change-no response


goinlong
New Member


Date Joined Mar 2008
Total Posts : 15
   Posted 3/8/2008 8:19 AM (GMT -7)   
What's a Kegel?

bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 3/8/2008 8:19 AM (GMT -7)   

tongue  Hey ~ New Friend,

This is an excellent thread.... with specific questions that will help our members reply with specific answers...  It's the weekend and sometimes it's a little slower but know we've grabbed your hand and we will all be here for you.  Your attitude is the first fight in this battle... and we appreciate you reaching out!!! 

Buddy & I invite you to read "Our Journey" listed in our signature below... and we hope that you will find something to pull into your journey to make your path a little smoother.

Stay Close and know we care.

In Friendship ~ Lee & Buddy  

 

Partial quote from goinlong.......

 

I have a few questions to start with

 

1)  Do any of you have any experience with Dr. Cerny or Dr. Lieber?

2)  Does the 9% capsular penetration suggest that the cancer has left my prostate and entered other areas?

3)  Have any of you experienced back pain associated with prostate cancer, if so please describe it for me

4) Any suggestions on things I can do now to improve my post op recovery?  Specially the inconstinenece.

5) Anyone know if the fact that my PSA is so low (0.75 in Oct 2007) yet my Gleason is 3+3 tells me anything?


mama bluebird - Lee & Buddy… from North Carolina

 

v          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

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

4th PSA 2-13-2008 (23 months) Less than 0.1 Non-Detectable :)


goinlong
New Member


Date Joined Mar 2008
Total Posts : 15
   Posted 3/8/2008 8:32 AM (GMT -7)   
Don't answer.  I made the mistake of googling Kegel Excercise Video on my work computer.  Fortunately I did find a good report from a urology institue that gave a simple explanation.

goinlong
New Member


Date Joined Mar 2008
Total Posts : 15
   Posted 3/8/2008 9:05 AM (GMT -7)   
Bluebird,  great posting of your journey.  I expect to have surgery in mid April and have a back-packing flyfishing trip planned.  I need to fianlize plans soon.  If I probably can't do what I normally do I need to start on Plan B or even C or D.  From your experience, will I be able to carry a heavy pack 4 months after surgery?  If not would I even be able to make a challenging hike without a pack?  How about ride on a horse?

Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 400
   Posted 3/8/2008 10:13 AM (GMT -7)   

goinlong:

You have come to a great forum - full of info and support.  If there is any indication that you have capsular penetration I would suggest a color doppler - this will give you the exact location and extent of your tumor.  If there is already capsular penetration I had understood that surgery was not a good option. As for riding a horse, my brother in law had surgery in Oct and still not released to ride his horses.  Good luck to you.     Dutch


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


PianoMan
Regular Member


Date Joined Feb 2007
Total Posts : 365
   Posted 3/8/2008 11:25 AM (GMT -7)   
Hi Goinlong:  Your numbers sound pretty good, all things considered.  A 3 + 3 = 6 Gleason is the most common the urologists see and does not indicate a highly aggressive cancer.  Your biopsy slides will likely be reassessed prior to surgery and then there will be yet another Gleason rating from your post-op pathology.  As far as capsular penetration, check to be sure your doctor didn't mean "capsular infiltration."  There is a difference.  Infiltration means the tumor got into the capsule, but did not penetrate through it.  I am certainly no doctor, so check and recheck and get second opinions.
 
Also, I -- and many others here -- had lower back pain around the time of diagnosis.  I don't know if it relates to PCa, or if it was just coincidental.  I was told after a post-op C-scan that I have a little arthritis in my back.  Additionally, a lot of post-treatment guys, including me, tend to get all kinds of body and back aches a week or two before our scheduled PSA tests.  I believe there's a psycholocigal aspect at work there -- at least in my case.
 
Ninety percent of your battle at this point in time is selecting a method of treatment and choosing a surgeon or radiologist and a facility you feel confident about and comfortable with.  Ask your prospective surgeon how many Davincis he has done.  You might also ask him and your urologist if there are any men who are about a year out of surgery who would be willing to talk to you.  (Sometimes veteran PCa survivors give their doctor(s) permission to pass their name and number along to new patients.) A local support group might also hook you up with someone who's been through the procedure.  USToo is a good one.  Talking to others is invaluable in helping you relax and building your confidence in getting through the treatment, healing and returning to a normal life.
Best to ya.  You'll be fine.
Tom



D.O.B - 8/9/52

PSA: First ever was 9.8 in late Oct. ‘06, two weeks later, 10.1

DRE: Negative

Biopsy results 11/22/06.  Both lobes involved.  Six out of eight cores positive - from 100 percent to 90, to 60, to 50, two 20s and two zeros.

Gleason 3+3 = 6

Da Vinci Robotic RP surgery, City of Hope, Jan 12, 2007

Post surgery pathology – Organ confined, Gleason still 6, margins clear.  Volume of tumor much less than biopsy suggested.  12 percent overall.

First post-surgery PSA -- Undetectable, 2/20/07

Second post-surgery PSA -- Undetectable, 9/11/07

Third post-surgery PSA -- Undetactable, 2/15/08

Post Edited (PianoMan) : 3/8/2008 11:33:21 AM (GMT-7)


goinlong
New Member


Date Joined Mar 2008
Total Posts : 15
   Posted 3/8/2008 11:50 AM (GMT -7)   
Thanks everyone.  I read somewhere that the prostate can enlarge such that it applies pressure on the spine and the nerves therein.  This can give the symptoms similar to a disk issue.  I was treated for what they thought was a disk issue, but CT scans didn't confirm an onvious disk issue and cortizone didn't help.  So I'm playing doctor a bit here and am wondering if my low level "disk issue" is actually due to the prostate pushing on nerves in the spine.  So I thought I would see what others have experienced.  True that most men of the age when the  prostate cancer happens coincides with an age when back problems are common.

bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 3/8/2008 1:30 PM (GMT -7)   

tongue  Hey ~ We’re thrilled to see you posting!!! and glad you visited our personal thread.

The most important thing right now is to keep your body in good shape for surgery.  And listen to Biker about Kegels.  There are some good threads for you to pull info. from that will work for you.  (2nd locked thread at top on main forum page also can be found in your Welcome Message)

 

I will be happy to share our thoughts… and you will find that everyone here has their own path to follow.  We pull from each other ~ what best fits into our personal journey…

So ~ keep reading and gain as much knowledge as you can… yeah  

 

Buddy & I feel strongly that the little sphincter muscle must be protected at all cost… meaning no more bike riding, no more horses, and whatever it takes to relieve any pressure from this area.  Yes ~ even 2 years after surgery.  We feel our continence is one very important stepping-stone in our healing/recovery path and we plan to keep it this way.  Others will share their views and they differ… but that’s what makes this forum so powerful.  The sharing of each journey is so important!!!

 

Now ~ you will hear this time and time again… You must listen to your body!!  It will tell you many things if you are receptive to listening to it.  One very good example is…. When you have the catheter (aka Mr. Hang)… if you walk too much or push yourself too much .. your body will tell you by sending a few little clots into the bag.  Also ~  a pink tinge will tell you that you’re doing too much.  Mr. Hang is a good friend if you let him do his job.  So ~ plan now to make nice!! (giggle-giggle)…

 

4 months after surgery hiking/back-packing… hmmmm you will know!!! But I would definitely have a plan B… just in case!  And I’d leave the horse riding for others!!!  Again ~ a personal opinion and choices we’ve made… cool  

 

If you take care of yourself and let your body have the right amount of healing/recovery over that 4 month period… ~ you may very well be ready for your trip.  The more time in-between will be best!

 

Hmmm… has anyone taken your PSA since October???  Our DRE is what triggered our biopsy also. 

 

smurf   re: aches and pains... hmmmm...

 

Now here’s something we have discussed with our family doctor and our urologist and they both see no correlation with prostate cancer…Hmmmmm ~  we still feel it does!!!

 

Buddy suffered from severe headaches (back left base of skull) for at least 8 months prior to his routine check-up in January 06. So bad that twice we almost went to the doctor/hospital but with a little pressure point massage… he was able to go back to sleep.  He took over-the-counter medication thinking it was sinus issues.

 

Buddy ‘s prostate was normal size.  But my personal theory is this…

 

We think the tumor was pressing on something because he has not suffered this type of headache since his surgery in April 06.  And here’s a few other “things” that we have no answer for…  His sense of smell is sharper… His taste buds have a different opinion on certain foods that he ate before surgery.  So~ we do think something was going on and hindsight makes it clear to us.  We feel strong and we feel life is good…  continuing to take one-day-at-a-time…

 

Keeping you close in thoughts and prayers as you move forward. 

Thank you for allowing us to walk with you! 

 http://i206.photobucket.com/albums/bb179/mamabluebird1955/mamabluebirdWelcome.jpg

In Friendship ~ Lee & Buddy


PianoMan
Regular Member


Date Joined Feb 2007
Total Posts : 365
   Posted 3/9/2008 5:13 PM (GMT -7)   
I agree Bluebird -- Since surgery my sense of smell has been much keener -- almost to the point of being annoying at times. I smell certain odors I have never smelled before, while no one else in my family can smell them. And my wife has always had a phenomenal sense of smell.
Also, certain foods taste different than they did before surgery. Prior to my surgery, I had all kinds of weird aches in my hips, thighs, lower back and sometimes my arms. For the most part, all are gone now.
Go figure...

D.O.B - 8/9/52

PSA: First ever was 9.8 in late Oct. ‘06, two weeks later, 10.1

DRE: Negative

Biopsy results 11/22/06.  Both lobes involved.  Six out of eight cores positive - from 100 percent to 90, to 60, to 50, two 20s and two zeros.

Gleason 3+3 = 6

Da Vinci Robotic RP surgery, City of Hope, Jan 12, 2007

Post surgery pathology – Organ confined, Gleason still 6, margins clear.  Volume of tumor much less than biopsy suggested.  12 percent overall.

First post-surgery PSA -- Undetectable, 2/20/07

Second post-surgery PSA -- Undetectable, 9/11/07

Third post-surgery PSA -- Undetactable, 2/15/08


CPA
Veteran Member


Date Joined Feb 2008
Total Posts : 655
   Posted 3/9/2008 5:59 PM (GMT -7)   

Greetings, Goinlong.  Welcome to the board and to a fine group of people who will do everything they can to support you and provide good information.  I started doing the kegels when I was diagnosed in late December and did them through the time of my surgery on February 4.  I have had very little incontinence - basically wore pads for a couple of days and realized  I wasn't spotting so threw them away.  For me, the best way to figure out a kegel was to stop my urine in mid stream and do that 4 or 5 times as I urinated.  Then I also did the same kind of action several times a day when I was not urinating.  Since my surgery, I haven' done kegels other than stopping my stream once each time I urinate. 

I was told not to ride a bicycle or a horse for at least 6 months.  I also had some back pains that have basically gone away since my surgery.  They did an x-ray when I had my physical in December and it came back negative.  My psa was relatively low - 3.2 but it had doubled in a year.  My primary care doctor felt a lump as she did the dre as a part of my physical and referred me to a urologist. 

Sorry you have to be hear but you are in good company.  David


Age 55
Diagnosed Dec 2007 during annual routine physical
PSA doubled from previous year from 1.5 to 3.2
12 biopsies - 2 positive with 2 marginal
Gleason 3 + 3 = 6
RRP 4 Feb 08
Both nerves spared
Good pathology - no margins - all encapsulated - Gleason 4 + 3 = 7
Catheter out Feb 13 - wore pad for couple of days - pad free Feb 16
Great wife and family who take very good care of me


Tim G
Veteran Member


Date Joined Jul 2006
Total Posts : 2249
   Posted 3/9/2008 9:41 PM (GMT -7)   
Welcome to the forum, Goinlong. You will find some wonderful folks here who are supportive and informative. Take care and hang in there...Tim
Age 59  PSA velocity quadrupled in 1 yr (0.6 to 2.6) 
1 of 12 biopsies positive (5%) 
Open surgery June 2006 
Cancer confined to one small area Gleason 5 
PSA's undetectable
 


jrponalameda
Regular Member


Date Joined Dec 2007
Total Posts : 56
   Posted 3/10/2008 10:59 AM (GMT -7)   

Welcome to the forum!

You've already gotten some great advice and feedback... I wanted to mention that I'm in the Twin Cities and would be glad to give feedback on my doctors and care.

I don't have experience with Dr. Cerny. My DaVinci was performed at the U of M Fairview hospital, by Dr. Zapzalka of Park Nicollet clinics. He has a lot of experience with the procedure, and it went well in my case. Dr. Uke, also of Park Nicollet, did my biopsy. Dr. Uke probably would have been my surgeon if I'd opted for open, but referred me to Dr. Zapzalka for the DaVinci.

As to your questions about hiking and backpacking... I'm about 4 months out right now. I've been lifting heavier stuff again for the last few weeks (such as bags of dog food etc, maybe 50 lbs). I'm not sure about carrying a heavy pack for a prolonged period though. I would think that hiking without the pack would be fine. I think I could manage horseback riding although I haven't tried it since my surgery (had a real nice ride near Steamboat Springs just before my surgery though). If I were to try riding right now I'd probably wear a pad as a precaution, even though I haven't needed them for normal activities for a few weeks.

EDIT: After reading some of the previous comments about horseback riding more carefully, I can see as it might not be a great idea... I would certainly check with my doctor...

Good luck, and let me know if you want any more info on my doctors or anything else...


Diagnosed Sep 2007 Age 54 Gleason 6 (3+3)
DaVinci Surgery 11/8/07 University of Minnesota
2/22/08 PSA Undetectable

Post Edited (jrponalameda) : 3/10/2008 12:07:10 PM (GMT-6)


Frank1205
Regular Member


Date Joined Feb 2008
Total Posts : 308
   Posted 3/10/2008 12:10 PM (GMT -7)   
Welcome to the forum!

I am scheduled for Davinci March 27th at University of Chicago. I was suprised to hear about the forums discussion on back pain. This is what lead me to my biopsy which I insisted on after pulling my hair out about my back and other pains . Back, thigh,pelvic,hips and knees. Much worse on long drives or sits. Chiropractic early relief and then nothing. Funny after diagnosis my pain is for some unknown reason better. All five of the doctors I have seen insist it has nothing to do with the prostate cancer.

Welcome and good luck.

Frank
Diagnosed 01-08-08
Age 53
2004 PSA 8 biopsy negative
2008 PSA 6 biopsy positive 1 in 3
Gleason 3+3 = 6
Bone Scan negative
Wet CT negative
T1C
Robotic Scheduled March 27th, 2008
University of Chicago
Dr. Arieh Shalhav

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