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whm
New Member


Date Joined Aug 2009
Total Posts : 5
   Posted 8/23/2009 5:25 PM (GMT -6)   
wow this has been a bad day.i ts been about8 months since the rp surgery had a gleason of 6. double sided nerve sparing by the most expierenced surgeon i could locate he actually teaches the procedure.no incontinance after catheter removal.tried all the pills viagra etc no help.ive gotten some partial erections nothing workable for intercourse.tried the trimix today for the second time .20 first in uroligists office seemed to work partially he was hopeful he sent me home  and told me to self inject with .30 which i did no results at all. i have 1 last chance with .40 if that doesnt work i cant go any higher safely so he says.im not hopeful i dont understand why this isnt working it works for everyone but me ive never felt so alone and isolated in my life.theres no one to talk to about this its just too personal....my wife is understanding but the look of disapointment on her face that she tries to hide is more than i can bear...i feel like my life is over at 54 i feel so useless worthless and without value i have no self esteem left.....im having terrible depression and dark gloomy thoughts i dont think id have the surgery again if i had a choice..o god why have you spared my life to live in this living hell...............

Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2458
   Posted 8/23/2009 6:25 PM (GMT -6)   
Whm,
Don't give up. What works for me is to use the VED (pump) first to get an erection. I use a ring (not too tight) to keep the erection while I inject the rimix. I use .35 dosage. Give it 10-15 minutes using some physical and visual stimulation and you should get good results. Some folks have used some ED medication 30 minutes before the trimix injection to help. I wish you luck.
Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed 2/9/09 Dr Fagin, Austin TX
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Posterior lateral lesions measuring 1.5 x 1.4 x 1.0 cm showing focal capsular penetration over a distance of 3mm.
Prostatic adenocarciroma accounts for approx. 10-20% of the hemisphere.
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx, Negative margins
seminal vesicles clean, lymph nodes: not dissected
continent after 4 months
8 weeks PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 8/23/2009 6:36 PM (GMT -6)   
whm,
It's still early in your experience. Even still, you must never give up hope. Welcome to HealingWell. The guys here really do care. You need to let your doctor know about your depression. Many guys here will help you the functioning but you need to take measures to have a healthy mindset. It is most important. If you can stay positive it is the best thing right now. My Email is enabled if you would like to talk live. Anytime is ok. Stay with us and you can see how so many men got through it. Peace to you my friend,

Tony
 Age 47 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 11, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


lewvino
Regular Member


Date Joined Jul 2009
Total Posts : 384
   Posted 8/23/2009 7:05 PM (GMT -6)   
Don't give up but talk to us about your frustations on this site. I am also 54 and just starting this journey. I get my Cath out in the morning. Hang in there.
Is their a local Prostate cancer support group near the town you live at? I started joining to one and it helps to talk here and in person to people that have been down this road before us.
 
 
Age at diagnosis 54, PSA 5.1
Father treated for Prostate Cancer in 1997 with Proton Beam - Still doing well.
My Stats
Biopsy 04/08 12 cores, 5 positive
Gleason 3 Cores at 4+3=7, 2 Cores at 3+4=7
Perineural Invasion Noted on biopsy

Robotic surgery 08/12/09 at Vanderbilt, Nashville TN. 
 
Post Surgery - Dr. Spared 100% of Nerves on the left side.
Estimated that 50 - 70% of the nerves were spared on the right side.
 
Final Path report
20% of the prostate Invovled
Tumor graded at T2C
Overall Gleason 3+4 (7)
Lymph Glands Clear
Positive Margin 1.8 cm in length Noted in Right Apex


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 8/23/2009 7:22 PM (GMT -6)   
whm, welcome to HW, you are now among friends. I understand your ED disapointment at 8 months out, but in some cases, it can take a year to 2 years. There are so many variations of what does and doesn't work among our men here. You can talk about anything here you want, no shame, no fouls. We are open minded, and our combined experiences should help you.

if you are feeling that depressed, and you do from your post, then by all mens talk to your GP about it. at least consider mild medictions for the depression while you are working on your pc related issues. it will help you feel better about yourself.

sounds like you got a good loving wife to support you through this ordeal, that's an important part of your recovery.

please stay in touch with us. With the ED issue, there are still tools in the arsenel to deal with it, and while 8 months may seem like a long time to you, you just went through a major complicated surgery. keep the faith, new brother among us.

david in sc
 Age 57, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
 Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
2009 PSA   2/9 .05, 5/9 .10, 6/9 .11, 8/9 .16
Lastest 7/13 met with Rad. Oncl, considering options, 7/20 Catheter #6 after complete blockage, 8/14 met with Rad Oncl, still talking option, 8/18 - had laser scope surgery to clear blockage, now on Catheter #7
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 


mspt98
Regular Member


Date Joined Dec 2008
Total Posts : 375
   Posted 8/23/2009 8:49 PM (GMT -6)   
Hey man, I know your pain! I'm 11 months out since my surgery and still no luck with oral meds. However, I do ok with trimix injections. Most men should get some response from these injections. Now, I've injected a few times and had no response. You have to make sure you are injecting at the 1000 or 200 positions on the side of your penis. (The books say 900 and 300 but I've found more luck at these 2 positions). Make sure and pull your penis straight out as far as it will go to get the skin out of the way. Make sure you are holding your penis straight out so that you are actually injecting at the 1000 or 200 positions. I've injected into the skin a couple of times and had no erection because I didn't get the skin out of the way.  Take the needle and just pop it in quickly and then push the needle in until it's snug against the penis. Slowly inject over 10 seconds. Then apply pressure at injection site and opposite side of penis for 5 minutes. This should keep the medicine in the penis and not flowing out the penis into the abdomen. There is a moderator here, James, who has had a lot of experience with venous issues that may cause the medicine to leak out into the abdomen before it works. Just keep coming back here until he posts. I'm certain you can get the injections to work........ wink
my age=52 when all this happened,
DRE=negative
PSA went from 1.9 to 2.85 in one year, urologist ordered biopsy,
First biopsy on 03/08, "suspicious for cancer but not diagnostic"
Second biopsy on 08/14/08, 2/12 cores positive on R side, 1 core=5% Ca, other core = 25% Ca, Gleason Score= 6 both cores,
Clinical Stage T1C
Bilateral nerve sparing Robotic Surgery on 09/11/08, pathological stage T2A at surgery
No signs of spread, organ contained,
3 0's in a row now, 10 months out
Incontinence gone in early December '08,
ED remains,  still taking daily viagra for penile rehab, uro said try oral meds and then trimix for sex only now, Peyronie's Disease a problem now


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 8/23/2009 9:04 PM (GMT -6)   
whm,

The guys above are giving you good advice.

You might even consider changing doctors, if your doctor doen't seem to be working with you. Trimix can be administered at higher doses if needed. Muse is another medication that is used for erections. I think the combo of VED, and trimix is also anither plan.

You also need to realize that your life and your value to others is not determined by your ability to get an erection. ou can make love to your wife without an erection. What she really needs is your love and attention. Most women feel like they've gotten too much erection and not enough attention over the years.

I know pretty much how you feel. I am 4 months post op, and still not having what I call satisfactory sex. But I must say, my wife and I have been more intimate than we have been in 37 years of marriage. We have rekindled that love we had when we first met. It is really a neat thing.

Stay around here, and you will find that you are not alone. There are many men who have very similar situtions to you who have figured out ways to worked around it, both mentally and physically.
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks due to anatomical issues with location of ureters with respect to bladder neck.  Try 3 tubes where no tubes are supposed to be for 2 weeks !
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)


Piano
Veteran Member


Date Joined Apr 2008
Total Posts : 847
   Posted 8/23/2009 9:54 PM (GMT -6)   
I second the advice about the constriction ring. When I started using one (really just a few rubber bands), I started getting consistently good results. I place just before the injection and leave on for three minutes while I do the initial massage. Before that, injections were very hit-and-miss, and early on, I had a disappointing string of six failures.

I have tried the pre-plumping technique Ed C advocates, (also James C elsewhere), but have found it did worse than nothing for me. Will it work for you -- who knows? I suggest try it and see what happens.

If you try the constriction, I suggest use a lower dosage of trimix at first. My theory is that it forces the trimix to hang around, and instead of bolting for the nearest exit, it stays long enough to do its magic.

I advocate patience too -- it took me about 20 injections before I discovered and mastered the tricks that work for me. Good luck -- onwards and upwards :-)
Pre-op:
Age 63 at diagnosis, now 64.
No symptoms; PSA 5.7; Gleason 4+5=9; cancer in 4 of 12 cores.
Operation:
Non-nerve sparing RRP on 7 March 2008.
Two nights in hospital; catheter out after 7 days.
Post-op:
Continent; no pads needed from the get-go.
Pathology showed organ confined and negative margins. Gleason downgraded to 4+4=8.
PSAs:
6-week : <0.05
7-month: <0.05
13-month: 0.07 (start of a trend?)
ED:
After a learning curve, Bimix injections (0.2ml) are working well. VED also works but we find it inferior to Bimix.
14 months: Occasional nocturnal erections.


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4106
   Posted 8/23/2009 10:39 PM (GMT -6)   

WHM:  I understand you post completely.  I am 10 months out and have not had successuful SEX yet.  I have tried all 3 pills and still take them for therapy.  I also use the VED every day.  Have tried MAUSE 2 times (not successful and very uncomfortable the second time)  My Dr.  does not like injections.  My next visit with him will decide if I go searching for a Dr. that is more willing to work with my ED.  I feel you pain. I get so angry at times over my loss.  I am greatful for the cancer being gone. I want the other part of my life back also.  

My e-mail is also active is you wish to talk send me a note.  I am hanging in there and I hope for imporvement. 

Let me know if you wish to talk.  As the others have said you can ask anything here.  Someone has been in your shoes before that can help you out.

 

Jeff T

 

 


Jeff T Age 57
9/08 PSA 5.4, referred to Urologist
9/08 Biopsy: GS 3/4=7
10/08 Nerve sparing open RRP- Path Report: GS 3+3=7 Stg. pT2c, margins clear
3 mts: PSA .05 undetectable
 10th month  PSA <0.01
ED- 5 mg Cialis daily, pump daily, going to try MUSE next


Radical
Veteran Member


Date Joined Mar 2009
Total Posts : 739
   Posted 8/24/2009 4:21 AM (GMT -6)   
WHM- I am also around your age  [51], I am also 8 mnths out of Surgery, I have a gleason of 7, had nerve sparing op, by a well respect surgeon in Australia.  I have been usinig meds everyday as prescribed, I have not yet tried injections.  I have tried vac pump, by did not get on with it at all.  I was becoming pretty depressed also, and I know that feeling of uselessness and the upset and disappointment on the wife face.  I too had nearly given up, but then one night last week,  my wife and I got close for our usuall tickle etc, and
'BINGO *###* yeah yeah yeah yeah , I had my first erection since surgery, it was about 90% and certainly good enough to do the job. 
We were obviously both over the moon about the event ,and now waiting for the second opportunity, which we both agreed, we would not rush.
I believe this happened because we decided some weeks ago, to stop worrying about the ED, and get on with life. 
As the saying goes, the more you chase a butterfly the more it will avoid you, but if you just stand still, it will come and land gently upon your shoulder. 
 
My suggestion to you would be just relax, forget about the ED, and just reflect on how lucky you are to be alive and to be with your loving family.
 
.................Kev  [ignor my forum name, thinking of changing it soon to maybe "STUD" lol]
Age 51yrs
DX 11/11/08
6 out of 8 cores positive 3 X 60% / 3 X 10%
PSA 4
Gleason 3+4=7
Stage T1c
Robotic Surgery 24/12/08
Upgrade Gleason 4+3=7 (60% Grade 4)
Stage T2c
Three small foci total volume <10%
Neg Margins and Nodes
Nil - Extraprostatic Extentions
Dry less than 1 week.
ED- taking Meds/ No results yet/still "NotHard"
PSA 1/09  .03
PSA 2/09  .03
PSA 5/09  .03
"Everyday in Everyway I get better"


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 8/24/2009 6:48 AM (GMT -6)   
very good post and news, kev
 Age 57, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
 Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
2009 PSA   2/9 .05, 5/9 .10, 6/9 .11, 8/9 .16
Lastest 7/13 met with Rad. Oncl, considering options, 7/20 Catheter #6 after complete blockage, 8/14 met with Rad Oncl, still talking option, 8/18 - had laser scope surgery to clear blockage, now on Catheter #7
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 


CPA
Veteran Member


Date Joined Feb 2008
Total Posts : 655
   Posted 8/24/2009 11:07 AM (GMT -6)   
Greetings, WHM.  I'm sorry you are going through this - it is very real and your pain and fear are also very real.  Nearly all of us on this board have been through many of these feelings in one form or another.  I realize that you may feel your wife is disappointed and she may be over this singular event.  However, not even knowing you or her, but knowing how my wife reacts I am confident in saying that she is very glad to have you where you are and that is surviving cancer.  She'll work with you in solving this problem just like she has been there with you in all of your treatment thus far. 
 
Like a couple of others have said in previous posts, you might want to talk to your doc about getting you some help (maybe meds, maybe talking to someone) during this time in your life. 
 
I'm glad you are here and are among friends.  My email is active as well and would be glad to hear from you if you want to talk off line.  Please hang in there and keep us posted on how things are going. David
Diagnosed Dec 2007 during annual routine physical at age 55
PSA doubled from previous year from 1.5 to 3.2
12 biopsies - 2 pos; 2 marginal
Gleason 3+3; upgraded to 4+3 post surgery
RRP 4 Feb 08; both nerves spared
Good pathology - no margins - all encapsulated
Catheter out Feb 13 - pad free Feb 16
PSA every 90 days - ZERO's everytime!
Great wife and family who take very good care of me


lifeguyd
Veteran Member


Date Joined Jul 2006
Total Posts : 677
   Posted 8/24/2009 11:10 AM (GMT -6)   

 

Sometimes it takes a while to get injections right.  Keep on trying.

http://www.phoenix5.org/sexaids/injections/injectionpers.html


PSA up to 4.7 July 2006 , nodule noted during DRE
Biopsy 10/16/06 ,stageT2A
Very Aggressive Gleason 4+4=8  right side
DaVinci Surgery  January 2007
Post op confirms gleason 4+4=8 with no extension or invasion
no long term continence problems
Post surgery PSA continues to be "undetectable"
One side nerves spared
Bi-Mix for ED 
born in 1941


smilingoldcoot
Regular Member


Date Joined Jan 2008
Total Posts : 338
   Posted 8/26/2009 10:02 PM (GMT -6)   
I know where your coming from. email me and we can get together on the phone if you wish
 
richardamallory at hotmail.com
Biopsy 1998 = Neg Bio 2000 = Neg with PIN Bio 1/10/08 Gleason 10, Stage T1C 8 of 12 samples positive all < Than 5%
Bone Scan, CTs and MRI Negative early 2008
March 2008 MD Anderson - No Surgery or Proton = No Action
Feb & Mar PET (Possilbe Lymph Node Involvement  & Prostacint Scan Negative
March 2008 U of Florida Proton Therapty Lupron & Casodek May 08 for 2 years
Completed 25 IMRT and 17 PBRT U of Florida Proton Therapy Institute 7/24/08
Latest CT June 08) showed no trace of tumor in lymph node area
7/24/2008 PSA .21, free PSA .08, Percent free PSA 38.1, testosterone 14.6
8/1/2008 2nd Lupon Shot -- 10/27/2008 PSA <.01 -- 12/9/2008 3rd Lupon Shot
12/11/08 MRI Suspicious for Metastic disease L5 & S1 -- Bone Scan 12/19/08 Indicates No Bone Mets Spinal Stenosis and Neropathy in my legs
2/06/09 PSA = < .01  -- 4/09/2009  PSA <.01 --4th Lupron shot 7/02/2009 PSA <.01 Lupron
Our Journey is on WWW.GLEASONSCORE10.COM


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 8/27/2009 2:26 PM (GMT -6)   
Hey WHM,
Welcome to the club no one wants to join. I am only 1.5 months after RRP but I'm still incontinent with virtually no improvement and have a p*nis that pulls inside my body like a new "innie" navel when the temp drops below 72. (Can't want for winter!)
I started using a vacuum device so I can squint my eyes and pretend I've got some hardware (or software).

In my case as long as I continue to cut the grass, catch bugs, kill the mice, and do the dishes my wife does not consider me worthless.

Don't give up on yourself. You've found a great bunch of really supportive guys here. Read a few posts and you will realize you are not alone. Not long after the surgery I was having a bad night and came here while she was sleeping. I read people's signatures and stories and started crying uncontrollably in private. I needed it - it was a healthy venting. I felt so much better. After that I was able to make jokes about the situation.

Just keep killing the mice, cleaning out the rain gutters and shovelling the snow. Believe me, that has more value than you can imagine.
(P.S. I'll gladly trap and ship some mice to you if you don't have any.)
Jeff
Let us know how you are doing. People here really do care.
DX Age 56. First routine PSA test on April 8th: 17.8. My GP does not believe in general PSA screening so I did not get results during my 50 year physical.
May PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, Gleason 6=3+3. Bone scan and C/T scan negative.
----------------------------------------------
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7 Tumor size: 2.5 x 1.8 cm location: both lobes and apex. No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
----------------------------------------------
One Month Status:
Potency - No data
Incontinence - 3-4 pads per day


Dave7
Regular Member


Date Joined Jul 2006
Total Posts : 202
   Posted 8/27/2009 5:46 PM (GMT -6)   
Hi whm-
I read your post and glanced at the responses.  I haven't read this thread in full so sorry if I repeat what others have said.
Sorry you're feeling down.  At 8 months I was in the same position you are.  Frustrated, depressed and negative about things getting better.
 
For me, it took 11 to 12 months to get something useable with the pill.  I tried a few injections but didn't like them.  I do think they helped a bit to jump start things.  It's odd that they aren't working on you.  Maybe try a different doctor and get a different formula.  But be careful.  If it was in fact a bad batch you tried and you now inject some good stuff, you don't want to inject too much.  Start out low and work your way up.
 
In regard to your wife, the sadness you see in her face may be a result of how you respond when things don't work.  Try not to think or care whether or not you get an erection.  Enjoy the closeness with your wife.  I actually found when I quit thinking about ED, things responded better.  Don't put pressure on yourself to perform.  Enjoy the things you are able to do.
 
I know it's terribly frustrating and depressing.  I have seen it said many times that the 12 month mark is when things started happening.  Good luck.
 
dave
Age:54
PSA 5/22/06: 5.6
DaVinci surgery: 9/14/06
Gleason: 3+3
Organ confined, clean margins.
Both nerve bundles spared.


Paul1959
Veteran Member


Date Joined Nov 2007
Total Posts : 598
   Posted 8/27/2009 7:38 PM (GMT -6)   
whm
Glad you're here. these feelings are very real and overwhelming. Good first step in posting about them. the guys on here are great. If you want to talk, email me. It's on my profile...just click on my name and you'll see the email.
keep posting. Listen to the other guys. they have a lot of wisdom. This site is phenomenal at reaching out. thanks for making the first move.
Paul
46 at Diagnosis.
Father died of Pca 4/07 at 86.
10/07 PSA 5.06 (Biopsy 11/07 1 of 12 with 8% involvment) (1mm)
Da Vinci surgery Jan 5, '08 at Mt. Sinai Hosp. NYC www.roboticoncology.com
Saved both nerve bundles.
Path Report: Stage T2cNxMx
-Gleason (3+3)6
Pad free on March 14 - (10 weeks.) Never a problem since.
ED - at one year, ED is fine with viagra.
One year PSA - undectable!

ED Website: www.FrankTalk.org - frank discussions of Erectile Dysfunction - check it out.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 8/27/2009 8:28 PM (GMT -6)   
whm, i hope you see in the four days since you posted here, that you are not alone in your feelings, good ones or bad ones. there are a lot of great people here, from all walks of life, all points of views, with a great variety of experiences and advice dealing with out prostate cancer.

you should be able to tell there is sincerity here, we are truly a brotherhood, we fight the same enemy, the monster called prostate cancer, we are at different points in our battles, some days are better than others. we share in each other's victories, and we grieve together when there's reason.

we are glad you are here, and hope some positive rays of hope start to filter into your mind and heart.

david in sc
 Age 57, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5
3rd Biopsy Sept 08: Positive 7 of 7 cores, 40-90%, Gleason 7, 4+3
Open RP surgery 11/14/8, Right nerves spared, 4 days hospital, staples out 11/24/8, 5th cath out on 1/19/9
 Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsule, one post. margin, clear lymph nodes 
2009 PSA   2/9 .05, 5/9 .10, 6/9 .11, 8/9 .16
Lastest 7/13 met with Rad. Oncl, considering options, 7/20 Catheter #6 after complete blockage, 8/14 met with Rad Oncl, 8/18 - laser scope surgery to clear blockage, now on Cath #7, 8/26 - cath removed
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 


TheoTeacher
Regular Member


Date Joined Jul 2009
Total Posts : 47
   Posted 8/27/2009 8:57 PM (GMT -6)   

WHM,  You're not alone in all this.  You are a few months ahead of me but I see my path following yours.  Many here speak of being dry a few days or a couple of weeks after surgery.  Some speak of having sexual function early on as well.  Not me!  At 7wks post surgery I leak all afternoon, if I stand up!  And sex? Nothing moving there at all and my fear is it is lost.  My wife is supportive but it is a loss.  BUT...patience is what is needed, AND modern meds.  My doc told me 12 months is not unusual for the return of sexual function.  I'm jealous of the "early returns" but we have discovered new ways to enjoy and celebrate each other!  Hang in there!


Dad dx at 72 with Pca; RP at 73; Died 11/08 at 88 from Pca met.
3 Uncles have had Pca; 2 deceased from Pca met.
Me: Age 51: Joyfully Married; father of 7!
Routine Physical 11/07 PSA 1.73 DRE normal
Routine Physical 1/09 PSA 2.77 DRE abnormal.
1st Urologist visit 2/09 DRE normal, small - PSA 6.3!
Biopsy 3/17- St. Patty's Day! 3 of 12 cores positive with 5-8% Pca
3+3 Gleason; Visit Johns Hopkins 3/26/09 and decide for surgery.
Lapro RP 6/29/09; discharged 6/30/09
Cath out 7/9/09 Gleason unchanged 3+3;
"Larger amount of cancer" than expected.
Organ confined Pca, positive margin as "artifact" of surgery.
All other tissues clear.

"We walk by faith, not by sight."


whm
New Member


Date Joined Aug 2009
Total Posts : 5
   Posted 11/10/2009 10:05 AM (GMT -6)   
:-)  hi all hope everyone is doing well. sorry im so late replying to you guys but been working thru some major mental issues with this cursed disease.when i see the scope of some peoples suffering on this forum, i feel positively guilty whining about my lack of a workable erection.my doctor told me a while back i was probably still mourning the loss of my prostate,that struck me as a funny statement and i had to laugh but  i think its so true.im having more frequent erections all the time and having more sucess with the trimix .50 seems to be the magic number for me.i actually had my first decent love making in over a year this weekend a little trouble maintaining the erection but the penis ring seems to help.At least i now can see a light  at the end of the tunnel and have some hope.You just cant live without hope right?after we finished my wife of 30 years and i both broke down and cried.i think i then realised this has been as hard on her maybe even harder.Its easy to get a little self absorbed with this diease.when i left the doctors office yesterday after him showing me some final injection techniques i had  a major boner in my pants tongue   is it ok to say that here?dont mean to be crude but it just felt so good...   Sometimes when visiting the clinic when i see some people suffering so bad who have caught the diesease in its final phases too late who are clearly terminal well your heart just goes out to those people and their families who must be suffering so much.After watching my mother die of terminal bone cancer,and supporting her thru her horrible pain,holding her hand while she died, i believe it has taught me much about what is relevant and important in this life.family is important people are important.reaching out to friends who are hurting is important....whats not important......money,possesions,material gain all not the least bit important we only think they are.what a shame it takes tragedy to make us see this and some people never learn it.I would like to take this opportunity to personally thank each and every one of you who took the time from your day to reach out to me when i was having probably the worst  most down depressing day of my life when things seemed so black and hopeless that i would never crawl out of the darkness,it means more than i can ever express. thank you :-)    my message to you folks who are in the early stages of diagnoses or surgery or treatment dont be discourged, dont let yourself get to where i was talk to someone dont isolate  yourself it doesnt help!!!!!    THERE IS H O P E THINGS WILL GET BETTER BE A LITTLE PATIENT LET IT HAPPEN.        To all of you  fighting this disease or maybe just fighting wars within your own mind i wish you all peace and god bless WHM

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2222
   Posted 11/10/2009 10:50 AM (GMT -6)   
Thanks for the update WHM. That is good news and gives all of us reason to hope. Turning a curse into a gift is an act of wisdom. Take care.
Michael
Dx with PCA 12/08 2 out of 12 cores positive
59 yo when diagnosed
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
Margins not involved
2 pads per day, 1 depends but getting better,
8/5 1 depend at night only
 started ED tx 7/17, slow go
Great family
Michael


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 11/10/2009 12:02 PM (GMT -6)   
Oh WHM,
Thank you! Thank you for letting us know that you are OK. I read and replied to your first post and then worried about you for a few weeks. (My name is "Worried Guy" after all)
I am particularly happy to hear that you finally showed improvement from 8 months to 11 months. It gives guys like me hope. I'm only 3 1/2 months past surgery with total ED and incontinence but I realize I'm still a babe in the woods. There is a good chance I will improve. You are proof of that!

In the meantime, I've got the wood pile almost all split, the rain gutters cleaned and the leaves raked and burned. I even caught two mice last night. My wife is very thankful.

Thanks for making my day,
Jeff
DX Age 56. First routine PSA test on April 8th: 17.8.
May PSA: 22.6, 3 weeks later: PSA: 23.2.
Biopsy 6/10/09: 7/12 scores positive, Gleason 6=3+3. Bone scan and C/T scan negative.
RP DaVinci -7/21/2009 @ Univ of Roch Medical Center
Left nerve gone, right partial spared.
Catheter removed - 7/31/2009 Pathology report received:
Gleason 3+4=7 Tumor size: 2.5 x 1.8 cm location: both lobes and apex. No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Extraprostatic extension present; Perineural invasion: present, extensive
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 10/31 3 months, Still no activity, nada, zip
Incontinence - 8/20 4 full pads per day
. 9/7 3-4 full pads per day (I'm going to try cutting down on fluids. Bad idea. I know.)
9/17 2 months: Still 3 pads per day.
10/31 14 weeks: Still 3 pads per day. At this rate I'll be fine in 2012.
Post Surgery PSA - 9/3 6 weeks- 0.05, 10/13 3 months- 0.04 undetectable.


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4106
   Posted 11/10/2009 2:00 PM (GMT -6)   
WHM....Thanks for the update. I just got an appointment with a new Dr. Jan 2010. I will be on to injections... I do hope that they work.

Jeff T
Jeff T Age 57

9/08 PSA 5.4, referred to Urologist
9/08 Biopsy: GS 3/4=7
10/08 Nerve sparing open RRP- Path Report: GS 3+3=7 Stg. pT2c, margins clear
3 mts: PSA .05 undetectable

10th month PSA <0.01
1year psa <0.01
ED- 5 mg Cialis daily, pump daily, going to try MUSE next. Next step injections.


Red Nighthawk
Regular Member


Date Joined Oct 2009
Total Posts : 289
   Posted 11/10/2009 5:22 PM (GMT -6)   
Whew! That was one heck of a thread to read through. Thankfully, it looks like Billy has had a great outcome. His story gives all of us whom are behind him on this road to recovery a little hope.
Age: 62
Pre-op PSA: 4.1
Gleason grade: 3+4=7, present in both lobes, at least 1.1 cm, and occupying less than 5% of prostate by volume. pT2c NX MX
No lymphatic/vascular invasion present.
Seminal vesicles and extraprostatic soft tissue free of tumor.
Inked margins are free of tumor.
High grade prostatic intraepithelial neoplasia is present
Robotic RP: Sept. 15th, 2009 1 day in hospital, cath out on 9th day
Post-op PSA: at 4 weeks --> .04 (undetectable)
One pad for the first six weeks. Two pairs of underpants now just to play it safe.
Surgery: Brigham & Women's Hospital, Boston


Ed C. (Old67)
Veteran Member


Date Joined Jan 2009
Total Posts : 2458
   Posted 11/11/2009 3:51 AM (GMT -6)   
Thanks for the update WHM. I'm glad that that you got the dosage that works for you, as I answered in your original post, I struggled at first but using the ring did help. I'm now down from 35 to 30 and will try 25 in the future. Good luck and KEEP IT UP!
Age: 67 at Dx on 12/30/08
PSA 9/05 1.15; 8/06 1.45; 12/07 2.41; 8/08 3.9; 11/08 3.5 free PSA 11%
2 cores out of 12 were positive Gleason (4+4) and (4+5)
Negative CT scan and bone scan done on 1/16
Robotic surgery performed 2/9/09 Dr Fagin, Austin TX
Pathology report:
Prostate weighed 57 grams size:5.2 x 5.0 x 4.9 cm
Posterior lateral lesions measuring 1.5 x 1.4 x 1.0 cm showing focal capsular penetration over a distance of 3mm.
Prostatic adenocarciroma accounts for approx. 10-20% of the hemisphere.
Gleason 4+4
both nerve bundles removed,
pT3a Nx Mx, Negative margins
seminal vesicles clean, lymph nodes: not dissected
continent after 4 months
8 weeks PSA test 4/7/09 result <0.1
5 months PSA test 7/9/09 result <0.1
8 months PSA test 10/9/09 result <0.1

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