nerve sparing surgery 8 yrs later?

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jbmischief
New Member


Date Joined Jan 2010
Total Posts : 6
   Posted 1/21/2010 10:41 AM (GMT -6)   
depressed here lately.


My prostatectomy was in 02. Life has changed significantly. I am resolved that not all changes are due to the surgery. I suppose some changes come with all 55 year old men. I was 47 at the time of surgery.
It has lately made me a little depressed though? I could sure use some input from others having suffered the same? at or near this place in my recovery. Is the rest of my life considered RECOVERY?
Please reply to JB..... @ JBMischief@aol.com
I start to share my feelings among my peers and realize they don't have a clue what it is to live without your prostate and the changes it has caused.
In an effort of decorum and not wishing to be vulgar I refrain from physical details at this time. Is it vulgar to share the affects of such surgery so many years later in an effort to find some understanding? Help me out here, I am waffling?
But!! I don't mind sharing the most intimate details of sexual encounters if it would reveal some answers? Anyone please jump in here, I need to hear I am not the only frustrated prostatectomy survivor, glad to be alive and depressed because of the degree of physical function?
I'm a little confused socially, physically, and to be honest, the sexual frustration is sort of getting me down.... anyone else at this post prostatectomy stage with answers or suggestions?
This island is getting smaller here....
JB>

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 1/21/2010 10:52 AM (GMT -6)   
JB, Welcome to HW, sorry you have to be here, but glad you came. Your experiences as a 8 year survivor is very valuable to us, and we welcome any and all info you wish to provide. Nothing appears to be too vulgar or against decorum, although we do prefer that terms of a sexual nature be said without the slang that is used to describe them. If you have read here much, you will see that our discussions and topics are wide ranging and not many people hold back in sharing even the most intimate details of their Journey with others.

I would suggest you remove your email address from the body of your post, to prevent spam scavangers from harvesting it. You can add the same to the profile section of the control panel, just click the control panel button upper left then the update profile and enter your email address and fill out your signature with a concise details of your Journey thus far. Then anyone wishing to contact you can just click the button. Or even consider setting up your own Healing Well email address, for further privacy and security.

As to recovery, most consider your recovery over when you are cancer free at 5 years, after that I suppose a better description of your situation is to call it your Journey, not your recovery.

I am sure lots of guys will come around shortly and you will find that they are willing to talk about and answer your questions and concerns. In the meantime, know that you are not alone, and that this is the place for you if you are needing peer information and heart to heart sharing of difficulties. We/They love to gab, so prepare yourself.... tongue
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP 110gms.- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
24 mts: PSA's: .04 each test since surgery, ED Continues-Bimix .3ml PRN or Trimix .15ml PRN


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4110
   Posted 1/21/2010 11:41 AM (GMT -6)   
JB, welcome. I have sent you an e-mail. Feel free to contact me. Sounds like your batteling a tough time. Some of us have been there others have not. Many times we make fun of our situation to get a bit of a lift for the situation. Hang in there guy. You can let people know what you are thinking without fear in this location. If you read some of the post you will see where many of us have asked for advise.

Do hang with us and keep us posted.

Jeff T
Cajun Country
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.
15 months out injections Caveject (success)


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 1/21/2010 11:42 AM (GMT -6)   
Welcome JB, we are a very open group, and a very caring and supportive group. You can talk about anything you want here, we just clean it up when speaking about the intimate parts, there are ways around that. We also encourage those that need to vent, to vent. For those that are depressed, we will do our best to cheer you up.

Please keep us posted, and feel free to say what you are really feeling and thinking.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incontinence:  1 Month     ED:  Non issue at any point post surgery
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12
Latest: 7/9 met 2 rad. oncl, 7/9 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 out 38 days, 9/9 - met 3rd rad. oncl., mapped  9/9, 10/1 - 3rd corr. surgery - SP cath/hard dialation, 10/5 - 11/27 IMRT SRT 39 sess/72 gys ,cath #8 33 days, Cath #9 35 days, 12/7 - Cath #10 43 days, 1/10 - Corrective Surgery #4, and Caths #11 and #12 in at the same time


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 1/21/2010 12:23 PM (GMT -6)   
JB,
 
Depression can be as bad as PC in some ways.  Hopefully we can help you with some of the things that are depressing you, but obviously we won't be able to give you back everything you had prior to surgery.
 
Obviously as an 8 year survivior you do have some things to be thankful for.  I am sure if you made a list, you could probably find more things to be happy about than to be depressed about.  You may also need to consider finding a good counselor in your area who can help you through this time.  Medication is another option as well.
 
Some urologists don't do a good job of helping us with the ED side of the equation.  You may have to find a doctor who does.  If you wan't sex, there are ways to get it done in almost every case.  That you will see here on HW.
 
Good luck and stay around here and let us help you.
 
Goodlife
 
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10


60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2229
   Posted 1/21/2010 12:56 PM (GMT -6)   
Welcome JB. This is a supportive group and it is easier to talk about this with others who have gone thru it, but it's that way with a lot of things. Depression tells us something is going on that requires attention and for men it is often difficult to reach out for help. Hope you find help here but please consider talking to your Dr or with a therapist as well.
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
Margin slightly involved
2 pads per day, 1 depends but getting better,
8/5 1 depend at night only, now none
 started ED tx 7/17, slow go
Post op dx of neuropathy
3 months psa.01, 6 month psa.4, 6 1/2 month psa.5
Starting IMRT on 1/18/10
Great family and friends
Michael


jbmischief
New Member


Date Joined Jan 2010
Total Posts : 6
   Posted 1/23/2010 12:10 AM (GMT -6)   
Thank you,
Thank you ,All of you.
Feb 2010 will be eight years post nerve sparing surgery. I had a wonderful Dr. He remains wonderful.
I have watched others who were diagnosed over the pass eight years choose other cure courses. Some of those made the wrong choice and are in and out of experimental VOO DOO cure treatments with little more than hope and positive attitudes. That helps, but does not mean it will keep you alive. I know I made the right decision to have the surgery. My Grandfather, and Father both died of PC. I wanted it out of me at first diagnosis at age 47. I know I made the right choice even with the physical changes to follow.
I do though, have some bitter feelings about my LIFE after surgery. Life being the key word here. For LIFE I am most grateful.
Just frustrated. Robotic surgery was experimental and was not an option when my time came. I am scarred from navel to penis base. Then on top of that weight gain has widened the off center scar and just left me unsightly. LIFE. Remember LIFE is better. These are petty issues, I know. But after eight years of submissive cure attitude, I feel I can express them so as not to alarm the next person that reaches this point. I do not offer to help anyone get through this. I am unqualified and ill equipped to offer help. I offer example, good, bad or indifferent of man missing his prostate gland eight years later. I regret not tasting my own semen before it was no longer an option. Is that weird? I regret being asked: Did you get off? I get a little frustrated with all the kind passive approaches that sooth with out answers. Anger? sure a little but not out of hand or quickly ignitable. Bitter? sure I miss that good OL get on get off macho energy that did not require a timed injection leading up to sex. I miss just doing it with out preparation. By the time all the knickers are off you feel like explaining.
And when you do explain you get mercy handicap feeling.
Is this too much for this group? Am I connecting to anyone without a prostate here? Spare me the method psychology. I get the clinical aspects and soft speak. I am no slouch in the education department. I am talking EIGHT years later here. I need some raw humanity sharing about body parts lost here. Am I in the right group? Or am I scaring and alarming all those heading my same direction? I do wish to antagonize until some raw experience is shared. Jump on in, if you please. Let's hear someone that is mad too about losing this intimate male body part?
JB

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3734
   Posted 1/23/2010 1:36 AM (GMT -6)   
Hey jbmischief,
Welcome to Healing well. You found a great bunch of guys and no doubt your situation will resonate with more than a few so check your mailbox periodically.

I saw your topic and wanted to learn from a vet. Today is my 6 month anniversary so I am just a "noobie". I'm still wearing pee pads and figure I'll be dry by 2013. I have not had an erection in 6 months and one day, and so far, have not had any success with any method. The Trimix today was a disaster that really put me down. I had such high hopes it was going to be the solution that when I crashed, I was depressed and feeling sorry for myself for about an hour. Then I had to pick up the car from the garage, get my business cards printed for my meeting next week, bring wood in for the stove, stain the dresser drawer, answer email, eat a fish fry with a glass of traminette by Torre Ridge. Life moves on and so must I.
I'm not mad, just sad. But, neither of those emotions will bring the walnut back.
I lived and worked in Japan for almost half of my career and learned a lot about different ways of thinking and emotions. There is a Japanese expression: "Shikata ga nai". Roughly it means "It can't be helped." or "There's nothing you can do about it." But the hidden meaning is: "You can only play the cards you're dealt, so just do it." I figure this is the hand I've got.
I'm lucky to be married and don't have to look for a partner and have to explain my situation to someone new. On the other hand,being married means my PCa affects my wife's life as well. It is my job to minimize the effect on her. If I am down and constantly complaining about pee pads, or my limp body parts, her life becomes miserable, too. That can poison our 34 year marriage and I will not let that happen.
At 6 months I can't know what it will be at 8 years. I hope by then I'll be dry, and will be able to have an occasional romp in the sack. I also hope my sons will be married, employed, productive and self sufficient. I hope my 401k will be out of the toilet. But however life turns out, I'll deal with whatever I'm dealt. I have to - Shikatta ga nai.

Stick around a bit and read some of the posts, signatures and replies here. That really helped me. I realize my hand could be better. But it could also be a lot worse. Sometimes even a pair of 4s wins the pot.
I wish you the best.
Jeff
DX Age 56. First routine PSA test on April 8th: 17.8. Start 2 weeks of Cipro to rule out protatitis.
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.
Extraprostatic extension present; Perineural invasion: present, extensive.
No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 12/11 5 months, Still no activity, zip. Using pump daily since 11/11. No effect with 20 mg of Cialis or 100 mg of Viagra. Shots next? See Uro 1/20/10
Incontinence - 8/20 4 full pads per day
.. 9/7 3-4 full pads per day (Try cutting down on fluids. Bad idea. I know.)
11/14 4 months: Still 3 pads per day. 420ml/day, 91 um leak.
12/11 5 months: Still 3 pads per day. 400-450ml/day
1/11/10 6 months: Still 3 pads but leak is now 320 ml (5 day avg.)
Post Surgery PSA - 9/3 6 weeks - 0.05; 10/13 3 months - 0.04 undetectable.


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3734
   Posted 1/23/2010 1:43 AM (GMT -6)   
Just a side note. You can put your email address in your profile rather than in your post. If you want privacy make up an address at yahoo or gmail just for this.
Also a signature with your info really helps people understand your situation better.
People here truly want to help.
Jeff

lb6869
New Member


Date Joined Jan 2010
Total Posts : 2
   Posted 1/23/2010 6:16 AM (GMT -6)   
Hi  New member myself.  I can relate to this post about the depression.   I had nerve sparing surgery in Jan 05. My 5 yr anniversary is days away. I have never had an erection since. Two and 1/2 yrs after surgery my wife left me for another guy who functioned normally. So I can sure relate to the depression described in this post. Sure I am alive and so far the psa tests have been good BUT, the quality of life went right down the toilet. I too deal with depression of not having a normal sex life. Without warning the black clouds appear and sometimes its days until I feel better. I have pretty much given up on meeting women. Why would they want me ? Someone with a limp penis. I haven't had sex since 2004 and everyday I think about how I miss it and the fact that I will never have it again. By the way I am 57 yrs old. People tell me I should be glad to be alive  and I agree but its tough to explain the loss I feel. Thanks for letting me vent....... 

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3734
   Posted 1/23/2010 8:23 AM (GMT -6)   
Hi lb6869,
Welcome to HealingWell. As I mentioned to jbmischief, you found a great site and a group willing to help any way they can. You'll find that you are not the only one who feels the way you do. Browse a bit.

Oh man. To say the least, 2007 was not your best year. They say that the four biggest life stressors are: divorce, major illness, death of loved one, loss of job. You've been through a lot, and most importantly, survived. That is really important. You have some knowledge about how to do that - something you can teach to the other guys who have suffered similarly. How did you make the "black clouds" go away?
I might be able to answer your question: "Why would [women] want me?" In my office there was a woman our age who lost her husband to leukemia ~25 years ago. She said she wanted a man who could be: a companion, soul mate, partner. Someone to cook for, someone to share laundry, someone who would fix things around the house. Someone to sleep with and warm under the covers. She said she'd be perfectly fine without sex and was saddened that she could not find a man who did not consider it very important. I can't believe she is the only one out there. Most single guys overlook the obvious demographic - women our own age. They are out there. Actually, there are more women than men. Don't give up. Clearly you are an intelligent guy who can bring a lot to the table. If you have an income stream, don't do drugs, exercise periodically, and bathe regularly, you are right at the top of the desirability pack. Sorry, odds are pretty good you won't find a 24 year old, ex playboy bunny, now physicist with an identical twin. But you will find gold out there.
Stay healthy,
Jeff
DX Age 56. First routine PSA test on April 8th: 17.8. Start 2 weeks of Cipro to rule out protatitis.
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.
Extraprostatic extension present; Perineural invasion: present, extensive.
No Malignancy in Seminal Vesicle, vasa deferentia, lymph nodes 0/13
Prostate mass 56 grams. Pathologic Stage: pT3aN0MX
Post Surgery Status:
Potency - 12/11 5 months, Still no activity, zip. Using pump daily since 11/11. No effect with 20 mg of Cialis or 100 mg of Viagra. Shots next? See Uro 1/20/10
Incontinence - 8/20 4 full pads per day
.. 9/7 3-4 full pads per day (Try cutting down on fluids. Bad idea. I know.)
11/14 4 months: Still 3 pads per day. 420ml/day, 91 um leak.
12/11 5 months: Still 3 pads per day. 400-450ml/day
1/11/10 6 months: Still 3 pads but leak is now 320 ml (5 day avg.)
Post Surgery PSA - 9/3 6 weeks - 0.05; 10/13 3 months - 0.04 undetectable.


jbmischief
New Member


Date Joined Jan 2010
Total Posts : 6
   Posted 1/23/2010 8:59 AM (GMT -6)   
Hey.
Thanks for the replies. Maybe what I need is to think about someone else just starting this journey instead of focussing on my own frustrations after eight years.

Jeff, Keep trying the trimix. At first it is most painful. I felt at first injections, like I was injecting wet cement. It hurt so bad.. My Doc explained it back in 02 that those nerves had been sleeping, and gradually we would wake them back up with continued injections. (After 8 years. I inject smaller amounts just to plump up to feel more masculine occasionally without intending to have sex)
The trial and re trial injections for me was like therapy that re trains your nerves to re connect for an erection. For me, one day it just happened without the associated pain, and I realized I was enjoying my stiff member back. Now it was not stiff enough to share, mind you grinning. But enough to have a private internal climax.
I will never forget the first internal orgasm after surgery without the trimix.. Mind you, It was just a limp slapping affair, but I describe it over and over as " being a prepubescent 12 year old discovering that "no ejaculation" feeling for the first time"
My penis stiffens on its own now long enough for ********** climax, but not hard enough or long enough for intercourse without trimix assistance.

Thank you for the reply. AS you say: Shikatta ga nai.
And I have for the most part. There are just weak periods when all this walnut trauma needs an outlet such as this forum.

I have much more to share if your journey needs "no bull" answers. And I assure you, I am refined in social finesse, manners and decorum in most matters of life.
But I am at this stage of my prostate "journey" just over all the soft pedal recovery rituals based on professional health directives and accumulative committee conclusions. I would rather share true experience and outcome even if my delivery appears a little bawdy to get my point across. I would rather hear the same from others making the same steps to adapt to our new life without ejaculation. This is only one aspect, I admit. But my penis is affecting the rest of my life.
JB

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2229
   Posted 1/23/2010 9:43 AM (GMT -6)   
JB,
Thanks for your post and I think you do want to vent. Have not heard you say anything about a supportive family or children or grandchildren. So your post helps me, in that I dont want to be where you are 8 years from now. So will try other options for ED but also focus on what brings me joy in my life, and there is a plenty.
Thanks
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
Margin slightly involved
2 pads per day, 1 depends but getting better,
8/5 1 depend at night only, now none
 started ED tx 7/17, slow go
Post op dx of neuropathy
3 months psa.01, 6 month psa.4, 6 1/2 month psa.5
Starting IMRT on 1/18/10
Great family and friends
Michael


lb6869
New Member


Date Joined Jan 2010
Total Posts : 2
   Posted 1/23/2010 1:17 PM (GMT -6)   
Jeff,, Thanks  for the reply.  There is a little more to my story. I also retired in 2007 from a civil serivice job  as a 911 dispatcher with the Sheriff Dept. I had worked for 32 yrs doing that job. I had been married  for 34 yrs and I worked alot of overtime especially in the last ten yrs of my career. The more you make the larger your retirement is....  Well with   NYS retirement if you become divorced after a long term marriage your ex-spouse is entitled to 1/2 your retirement.  So  after the divorce I lost 1/2 my retirement and now at age 57 I was forced to go out and start working again 40 hrs a week to try and make up what I lose every month in retirement payment.    I appreciate your comments. Its been a tough row to hoe here alot of the time  financially and also when I get overly depressed about my shortcomings physically.I guess I just take it one day at a time  one week at a time but I have to admit that I miss the contact of a female very much. Its  hard to explain  how I feel sometimes..  Being married for as long as I was, It is tough to get back out there and meet new people  but I feel its even tougher  for me  with my condition. Its very easy to feel sorry for ones self and yes  I do  sometimes and I know there are alot of ppl and I have known a few myself that had their life cut short unexpectedly,, (accident, illness,etc)  and I should be grateful  for what I do have  and I try to be but I am only human too and sometimes you slip back to those old feelings again.  Thanks again  

Mavica
Regular Member


Date Joined Jun 2008
Total Posts : 407
   Posted 1/23/2010 1:24 PM (GMT -6)   
The most disappointment/anger/frustration I read on this forum almost exclusively originates with dissatisfation with the guy's sexlife.  Forget that the cancer has been removed or is in remission - it's the sex that so many guys are fixated with.  I think such people have their priorities of life out of balance.  One missing component to care I think there is:  psychological counseling.  I sense that many guys will benefit from professional counseling and it's an area probably ignored by the primary care physicians and urologists/surgeons.  If sex is the only thing we have going for us in life - or think that - then we're doomed.  Best wishes for continued healthy life.


Age:  60 (58 at diagnosis - June, 2008)

April '08 PSA 4.8 ("free PSA" 7.9), up from 3.5 year prior

June '08 had biopsy, 2 days later told results positive but in less than 1% of sample

Gleason's 3+3=6

Developed sepsis 2 days post-biopsy, seriously ill in hospital for 3 days

Dr. recommended robotic removal using da Vinci

Surgery 9/10/08

Northwestern Memorial Hospital, Chicago, IL

Dr. Robert Nadler, Urologist/Surgeon

Post-op Gleason's:  3+3, Tertiary 4

Margins:  Free

Bladder & Urethral:  Free

Seminal vesicles:  Not involved

Lymphatic/Vascular Invasion:  Not involved

Tumor:  T2c; Location:  Bilateral; Volume:  20%

Catheter:  Removed 12-days after surgery

Incontinent:  Yes (1/2 light pads per day)

Combination of Cialis and MUSE (alprostadil) three times weekly started 9-27-08

Returned to work 9-29-08 (18-19 days post-op)

PSA test result, post-op, 10/08: 0.0; 12/08: 0.0; 4/09: 0.0; 9/09: 0.0

 


Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3734
   Posted 1/23/2010 1:50 PM (GMT -6)   
LB,
That's what we're here for. Just for the record, losing the walnut was bad, getting the divorce - that was bad. But losing 1/2 of the 401k and retirement, now that really hurts! I am sorry for your loss - I'll shed a tear for you. The next round of drinks is on me. Not too far from the toilet please.

Hey LB and JB,
I don't know if you guys have ever heard of Yoga Bear.
Check out this discussion:
http://www.healingwell.com/community/default.aspx?f=35&m=1590428

"On the psa-rising.com site: Received from Halle Tecco, founder of YOGA BEAR, a non profit offering free yoga classes for cancer survivors:

Hello, my name is Halle and I’m the Executive Director of Yoga Bear, a non-profit that provides free yoga to cancer survivors across the US, through 125 partner yoga studios. Most of our participants are female, and we’re trying to get more men involved! Since prostate cancer is so common for men, we wanted to reach out to your organization. Could you please let your community know that we offer free passes to yoga studios for survivors interested in trying yoga?
Thank you,
http://www.yogabear.org/ "

Both of you guys can probably use the exercise and the women in the class are trying to stay in shape and increase flexibility. You'd be outnumbered many to 1. The women already know you either shoot blanks or have a bent gun barrel so that big ice breaker is done. If you carry a Leatherman tool on your belt they'll think you're handy.
I don't know if the program is still on or if they have one in your area, but if I were single, I'd be checking it out.

Um, Sorry Dear, I'm just kidding! I absolutely have no interest in looking at tight spandex on splayed legs doing the doggie position. I'm just writing this to a couple of guys I know on the HW site. Honest!
Jeff

Post Edited (Worried Guy) : 1/23/2010 12:54:49 PM (GMT-7)


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 1/23/2010 5:18 PM (GMT -6)   
JB,

I hope you feel better after getting that off your chest. Yes we can handle it. Must admit I have not heard many guys put it quite so bluntly. The semen thing is a little weird. Lord knows you must have had ample opportunity before now, so now why is it bugging you? Just because you can't?

I guess the question is, what good does it do you to be pissed off, bitter, etc. All it results in is making you even more bitter and angry. It's a spiral.

One thing you won't get here is a lot of sympathy. You are yelling at a group of guys in the same boat. There are men on this site that would give their right leg to have 8 more years of life. Some of these guys may not get 1 or 2 more years.

Jeff put it about as good as I have heard. Play the cards you are dealt. Go meet people. If they can't handle it , move on. If you can't handle it, figure out why.

Bitterness and anger are the pits. Life is too short to waste our time feeding those emotions. Depression is another bird, that we can't necessarily control on our own. Find professional help if you need it, but you 've got to get on with life.

Good luck. Guys here will help you all they can, but we are dealing with our problems as well. Don't have time to feel sorry for others, or be bitter and angry.

Goodlife
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks .
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)
6 Month PSA <.01
1 pad a day, no progress on ED.  Trimix injection
No pads, 1/1/10


Dirtmover
Regular Member


Date Joined Apr 2008
Total Posts : 158
   Posted 1/24/2010 2:05 AM (GMT -6)   
HELLO THERE 6869 , KEEP YOUR CHIN UP  BUDDY THERE ARE ALOT OF GOOD WOMEN OUT THERE , I WILL HAVE TO WORK THE REST OF MY LIFE , AND AM NOT DISSAPPOINTED , SURE  NONE OF US WANT TO , BUT GIVEN EVERYTHING WITH THE ECONOMY , IM LUCKY TO WORK 6 TO 10 DAYS A MONTH , AS FOR THE CANCER / WOMEN THING , I MET MY WIFE ONLINE , NO KIDDING AT MATCH.COM , WE GOT ALONG GREAT , THEN 6 MONTHS INTO IT ALL , I HAVE CANCER , I NEVER WOULD HAVE GOTTEN TESTED  EXCEPT MY  GIRLFRIEND (NOW WIFE ) INSISTED CUZ HER DAD  HAD PCA , A YEAR PRIOR, I OWNED MY OWN BUSS. SHE WORKED IN THE CORPORATE ARENA , I HAD NO INSURANCE , SHE DID . WE MARRIED , AND SHES STILL HERE,IN SPITE OF MY LIFE CHANGING JOURNEY, WHICH I MIGHT AD SHE NEVER MADE JUST MY JOURNEY, HER INSURANCE PAID IT ALL , AND WHILE I CERTAINLY WOULDNT HAVE CHOSEN THIS PATH, I DID OK ,, THAT WOMAN WHO FELL ASLEEP ON THE COUCH TONIGHT 5 FT AWAY SAVED MY LIFE,  IM SHARING THIS TO LET YOU KNOW , YOU MAY NOT FEEL ITS EVER GONNA BE THE SAME , AND IT PROBABLY WONT , IN SOME CASES IT GETS BETTER AND IM A FIRM BELEIVER IN NEVER GIVE UP , LOOK AT MY SIGNITURE , THIS ALL HAPPENED EARLY FOR ME , I WILL NEVER HAVE WHAT WE CONSIDER NORMAL SEX AGAIN BUT LIFE IS GOOD AND YOU WILL DO WELL MY FREIND , I PROMISE, ,,,,,,,,DIRT
Diagnosed November 2007   (43 years old )
PSA 3.9 / Gleason 6 / TC1 6 cores 1 shows 25%
Sugery scheduled 5/29/08 - City of Hope - Dr. Mark Kawachi
 "First show of the day"
 and now for the new ive been waiting for
 FINAL PATH REPORT:gleason upgraded to 3+4 T2c bilateral disease,tumor involvment 5%
extra prostatic extention:absent
seminal vesical invasion :absent
pathological staging:pTNM pT2 ORGAN CONFINED
margins free of carcinoma
usable erections ;6-6-08 with little blue pill
continence; 1 pad a day, dry at night
continence a non issue at 10weeks
 1 year p.s.a. undetectable


jbmischief
New Member


Date Joined Jan 2010
Total Posts : 6
   Posted 1/24/2010 6:03 AM (GMT -6)   
Okay, Okay,
I am beginning to feel I have chosen the wrong site to share my cancer recovery and cancer journey concerns.
The site says. HEALINGWELL.com
The title to me suggest a place to share healing rewards and setbacks. Or so I would be led to believe?

I entered this site suggesting one personal emotional need about a temporary depression mixed with some temporary bitterness, and anger associated with the loss of masculine body functions, on an eight year journey towards wellness.
My personal hope and personal need was that perhaps someone else had experienced the same rather shallow depression after surviving Radical Prostate Surgery to cure Prostate Cancer. Just maybe I was not the only PC survivor feeling this particular way at this particular stage after this particular surgery?

Only to get a reply about a machine programmed to cure 2000 illness's?
The machine has a name and a cost of 2500 US DOLLARS?

Forget my minor depression that I sought some like cure comfort from. I am appalled at such cheap commercialism allowed in a place where sick people are seeking cure comforts and support.

IS there a forum monitor to protect desperate suffering people from such pitiful last resort hustle?

JB

Dragonslayer
New Member


Date Joined Jan 2010
Total Posts : 8
   Posted 1/24/2010 6:41 AM (GMT -6)   
As one person said, not all will be the same as at once was. I am going through the same thing, (56) just remarried to a wonderful woman two years ago and then surgery on nov 19, 2010.  The depression is tough but I also had hormone levels checked and found testosterone on bottom at 248. Lower limit 280. This causes a lot of effects. Check out threads on low testosterone. Not easy dealing with ED. Hope is all we have, keep your chin up and do like me, never give up. I think the ED part is the hardest thing for men to swallow if everything worked great before PC. Using the pump is not the same but at least it makes things workable. I try to laugh and go on with my partner.

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3734
   Posted 1/24/2010 9:26 AM (GMT -6)   
Hey JB,

The moderators delete blatantly commercial posts. Users can help by flagging the message with the yellow diamond in the upper right. The mods are human and need food and sleep occasionally. That poster has already been deleted on other sites and may be gone shortly.
In the meantime, we as readers keep our own internal filters going by accepting the posts we agree with and ignoring the others.
Adding a signature and an email address to your profile will help guys talk to you. Some may not want to admit to the issue in public. This is the "Internet" after all.
I can honestly say HW helped me a lot. I wrote my first post in the middle of the night in tears. The next morning I was in tears again from the outpouring and concern shown by total strangers with signatures much worse than I.

You are further down the road than anyone I know here. I think many of us would like to learn from you. When did you get dry? How/if you ever got wood? What did you try? Did your T levels change? Does PSa trend over time?

To any question you'll also find a range of responses that are all over the map - just like my pee stream in the morning. Some guys are serious, some are curmudgeons; some are religious, some are not; some are technical and just deal with the facts, while others are purely emotional; and some are nut cases. (You guys know who you are.)
They are all so different but the same in one way: they all really care and are trying to help.

Jeff <--- One of the nut cases.

(I see that the post you mentioned has been edited already.)

Post Edited (Worried Guy) : 1/24/2010 7:34:12 AM (GMT-7)


MaxBuck
Regular Member


Date Joined Jan 2010
Total Posts : 75
   Posted 1/24/2010 9:28 AM (GMT -6)   
JB: I caught something in one of your posts above that I hope you don't mind my addressing - your comment about the long scar whose appearance has worsened with your weight gain.

Weight gain is likely to blame for more than just the scar's appearance. Psychological well-being and fitness are closely aligned. In my own case, my dear wife urged me (strongly) to lose weight, in the several months leading up to surgery. I had gone from weighing about 140 when we were married in 1979 to 205 in mid-2009 (I'm 5-11). And she was right - I needed to improve my fitness, greatly!

Began walking, outdoors and on the treadmill, pretty religiously (5x/week). Outdoor walks typically an hour, treadmill 1/2-hour but at a rapid pace (15 minute miles). Also moderated diet, focusing on low-glycemic-index foods and less of them. Have lost 25 pounds since August 2009, and feel great. Look to lose maybe 20 more pounds, but slowly, so as to help keep them off.

Feeling better about yourself involves some level of self-discipline. You'll find (I believe) that small victories in the weight battle will lead to larger victories in the battle against depression - your self-esteem will grow by leaps and bounds. Plus, you'll live a richer (and longer) life. Moving more and eating less are the keys, and I am sure you're up to it. Best wishes!
Dx at age 56: Oct 09; PSA 5.8, followed up by 9.9 two weeks later (reproducibility of test - ?)
Biopsy ind cancer in 8/12 cores: Gleason 8 (4+4)
open radical retropubic prostatectomy Dec 4 09
Post-op pathology: 56 g weight, cancer in 21%, Gleason 7 (4+3, tert 5); margins clear, no lymph node involvement (0/9), perineural invasion present, T2c N0Mx (but showed clear from distant metastasis in pre-op bone scan and CT scan)
Continence data: 1 "panty liner"/day, with minor leakage when I get up from long seated position
ED pretty complete: some erection possible but current non-functional


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 1/24/2010 9:37 AM (GMT -6)   
jbmischief, possible spammer noted, action taken. Sorry, we can't always be here watching, (even if it seems so to some)lol Emails to us Mods can speeed the process of seing and taking action with possible spammers.

I understand your concern but are you forgetting the 13 replies you have received before this probable spammer dirtied the room?
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP 110gms.- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
24 mts: PSA's: .04 each test since surgery, ED Continues-Bimix .3ml PRN or Trimix .15ml PRN

Post Edited (James C.) : 1/24/2010 7:40:29 AM (GMT-7)


60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2229
   Posted 1/24/2010 10:09 AM (GMT -6)   
jb,
I think the people here are very supportive and do care. it just seems to me that youu have boxed yourself in and only want to hear what you already deem to be the truth, as you see it. Goodlife made some great points as your posts suggest a lot of bitterness and that will eat you up worse than cancer. It is also difficult to draw someone into your life when you have that level of anger and bitterness. Now you might not see it, but it comes acros in your words and in your posts. My hope for you is that  you can see what is underneath all of that anger, but you appear closed minded to self  discovery and to the feeback from others. Take care and hope that you find happiness in your lifetime my friend.
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed
Robotic surgery 5/09 Atlanta, Ga
Catheter out after 10 days
Gleason upgraded to 3+5, volume less than 10%
Margin slightly involved
2 pads per day, 1 depends but getting better,
8/5 1 depend at night only, now none
 started ED tx 7/17, slow go
Post op dx of neuropathy
3 months psa.01, 6 month psa.4, 6 1/2 month psa.5
Starting IMRT on 1/18/10
Great family and friends
Michael


jbmischief
New Member


Date Joined Jan 2010
Total Posts : 6
   Posted 1/24/2010 12:00 PM (GMT -6)   
Yes, MaxBuck
Your weight observations about me are right on. You have defined in definite terms one so noted source of my temporary depression. TEMPORARY being the keyword here. I don't have it under control, but am on the daily long walks across the near by county fairgrounds. I take my walks there because there are lots of livestock barns to pee in... As one without a prostate knows, when you gotta go, YOU GOTTA GO. I can jump in a stall at emergency pee times.
I have much to offer others who have come out alive after RP. I am a tough ol bird as my peers imply. Of peers, I have many. I have been there on my dime to drive or fly with others to their chosen PC cures even when I judged they had made questionable and experimental cure paths that I thought were wrong. I have sat for hours next to rows of brown recliners with IV bags hanging over them. Some were in those chairs as needed, others were not. I was smug in my attendance and assistance to them, KNOWING that my previous RP saved my life without ever letting them know I doubted their cure path. I was at times a weak sheep offering submissive attendance and condolence rather than guidance.
The radioactive seeds let my friend Bernie shrivel at age 59 and die asking at last resort for RP, but it was too late. I was alive to carry his coffin. One other aquaintance during my eight year RP cure and journey has passed as a result of making poor cure choices. I was only remotely familiar with him through local cancer support group. But IF? JUST what if I had insisted they seek other doctors? Other professional opinions that would have got the source of the problem out of them. What if they had a few more years because I took a stand instead of a docile go-along with what I knew to be poor choices attitude. That respect for ones personal choices did little to keep them alive.
Then I have to reckon that we are all at different degrees of cancer. Some PC is already out of the walnut and spreading when discovered. (By referring to it as the WALNUT for me robs the prostate of its power to kill). Some that had to have salvage RP's after discovering their previous choices had not cured them are worse off but alive. Others died anyway.
I am aware, For a recent brief time, that I self appoint myself with the privilege to acknowledge a little self pity, anger, and depression. These temporary human emotional conditions I am *****ing about are at least issues of a LIVE person. ME!
I am feeling a little Survival GUILT. I in all other aspects moved on with my life.
And morbid to say, But when and if those on the same journey to cure at the same time as I are gone?? When my PC cancer aquaintance's either die or get cured, I will no longer have anything in common with the cure system? As one was so quick to point out. "Cure is only five years." Ya THINK? Lets put all answers in neat little boxes. We can stand in a long line with our butts hanging out of hospital gowns like a colorful Federico Fellini Film.
Life will still not be as I deem normal, nor should it be. I don't even in a fool's world expect it so.
I am tired of the little numbers, dates, and time since last test that we fill this journey with. It is so impersonal. I prefer the facts of spirit.
I was tired of standing strong. I succumbed letting myself feel weak and temporarily depressed from eight years of fighting for myself then others. It just depressed me to the point of shouting out to a wellness site little known to me. Shouting out to an UNKNOWN bunch of guys going through the same thing, that might get a little hint. Maybe a hint, that I did not intend but would still validate my observations. Maybe a hint of action rather than fairy tale wishing and hoping that neither destroy's nor constructs. Maybe my shouting out in personal trauma will drag someone out of the go-along mentality. IF just one corrects bad cure choices and takes charge of his cure for real and not abstract pamphlet cures as I have in hindsight watched others do it will all be for naught. Maybe just one will say. I FEEL THE SAME WAY!! Maybe some one suffering will see that addressing my minute little depression and anger was not the point at all of my post. Maybe by directing my weakness to the unknown suffering winds would reveal or suggest strengths to fight with during their own cure and journey.
Maybe the depression has made me way too theatrical in my delivery. IT is what it is. Maybe I let it all pile up inside too long before lashing out to be judged by unknowns. Just know the facts. Just don't follow along because someone is wearing a lab coat. WAKE UP! take the hospital gown off, smell the coffee.
I am in looking back bothered by those that might have made it as I did?
Whew.. do I feel better.....g
JB
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