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Posted 5/13/2009 12:29 AM (GMT -6)
Hey Everyone,

Some of you may know me. I posted a few weeks ago about my best friend. Background info about us is in prior message thread: https://www.healingwell.com/community/default.aspx?f=35&p=1&m=1448753

Again, I'm essentially his significant other and have immersed myself in prostate cancer study since we learned he has it. Finally, only as of today, do I have all his stats:

46 years old
diagnosed April 2009
PSA 3.13
Gleason 3+3+6
Grade T1c
2 cores out of 11 positive, 5% and 3% respectively

I went with him to the urologist today for an informational follow up visit. Since I learned from *this* forum that if treated for PC my friend would lose his ejaculatory fluid, I asked the Dr. about it. He said that ALL pc treatments of ANY kind would result in this side effect. Is this absolutely true? Or is there some treatment out there that would still leave a man with a "wet" orgasm? The Dr. did not tell my friend on his prior visit about this losing his 'juice' and he's now furious and depressed, saying he won't be getting any treatment if he has to sacrifice his ejac. fluids. Of course, I'm extremely saddened by his response and hoping he'll change his mind after he gets over the surprise. From what I understand now, his stats are amazing (low) and he has a VERY good chance at "cure" if he gets treatment.

Thank you in advance for your help with this 'sticky' subject.

Best,
Danielle
Posted 5/13/2009 4:17 AM (GMT -6)
Danielle,

I'm sorry to hear of your SO's PCa. As to his concern, I have first-hand knowledge concerning Radical Retropubic Prostatectomy and one side effect is complete loss of the ability to ejaculate. Orgasms remain in a somewhat different fashion being mostly a mental thing (best I can come up with) and, hopefully, over time ED goes away, depending on the extent of the surgery and the skill of the surgeon. The prostate creates seminal fluid which is stored in the seminal vesicles until needed and both of these organs are removed during surgery. I believe this is also the case during robotic or purely laparoscopic surgery as well. From other posts on this forum, I believe similar side effects can be expected to some degree or other from the other main-line treatments but others with more knowledge will reply soon.

I understand his concern/unhappiness but he needs to know that life and sex continue even after surgery. Some adjustments may need to be made but, IMHO, life is still pretty good and far better than it could've been and I'm pretty sure my wife agrees.

Tell him to hang in there and stay active in this forum. There are a lot of really great folks here that will be happy to help.

Good luck,
Garth
Vitae:
DOB: Q4'46, HT: 5'9", WT: 180
PC:
Biopsy: 12/08
Cores: 4 of 12+ positive
PSA: <2.5
DRE: Slight enlargement, one node
Gleason: 3+3
Surgery: RRP on 1/21/09
Catheter: 15 days
Pathology:
Adenocarcinoma occupying 5% of prostatic volume (right posterior aspect)
Gleason: 3+2
No extraprostatic extensions
Perineural invasion within prostate only
No angiolymphatic invasion
No seminal vesicle invasion
Clear margins
AJCC: pT2a
Post-op PSA's
3/10/09 < 0.014 (undetectable by machine)

Posted 5/13/2009 5:00 AM (GMT -6)

He’s going through a lot and getting all sorts of bad news…BUT, you might have to smack him into reality at some point. Women will be the last thing on his mind when he gets to the advanced stages of cancer.

 

He can look into Sperm Banks incase he has a notion to still being able to father a child.

Age 54   - 5'11"   205lbs

Overall Heath Condition - Good

PSA - July 2007 & Jan 2008 -> 1.3

Biopsy - 03/04/08 -> Gleason 6 

06/25/08 - Da Vinci robotic laparoscopy

Catheter in for five weeks.

Dry after 3 months.

10/03/08 - 1st Quarter PSA -> less then .01

01/16/09 - 2nd Quarter PSA -> less then .01

Surgeon - Keith A. Waguespack, M.D.

Posted 5/13/2009 6:38 AM (GMT -6)
If he would rather die, but able to ejaculate, then I would say his priorities in life are so very wrong. I will be as blunt as that. With prostate surgery, yes, you will lose your ejaculate, you will have dry orgasms. But I can tell you first hand, its all in your mind. Once the man's brain disassociates ejaculation from the actual act and pleasure of an orgasm, then it starts to make sense. After six months,my orgasm are longer, stronger, and deeper, and will curl my toes every time, and there's no mess to clean up. Not a bad deal.

My wife would have rather had me with complete and total ED and incontinent then to lose me early to cancer. In our case, neither has happened, I had the open surgery, I am 100% dry, and I havent' experienced any ED since the final removal of my long term on catheters. I tell this to give your guy hope.

But he needs to come to terms, that though right now in theory he looks like his has a low initial dose of PC, it can grow and get out of hand so fast. If it becomes an advance case, trust me, he will not even be worrying about having sex, let alone ejaculating. I hope his mind turns around to the logic of his situation, it will make it easier for you to help him.

David in SC
Age 56, 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

Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grm, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 

First PSA Post Surgery   2/9 .05, 5/9 .10 doubled in 3 months, new test in six weeks, then possibly off for salvage radiation

 

Posted 5/13/2009 7:34 AM (GMT -6)
Dear Best Friend:

If your friend was older then, with his stats, doing nothing (watchful waiting) might be a good option.  However, at his age, that is not a good idea in my opinion.

And, your urologist is incorrect when he states that ALL PCa treatments result in total loss of ejaculate.  I suggest you look on this forum at the threads started by realziggy.  He successfully underwent targeted focal therapy, which is akin to lumpectomy for breast cancer.  In that treatment, the patient undergoes an extensive biopsy, then needles are inserted into the prostate to destroy the cancer only...not the entire prostate.  Ziggy was perfectly clear that he retained his ejaculate.

Beyond that, brachytherapy results in loss of some or all ejaculate.  I can't seem to finds stats on what percentage of patients retain some and what percent lose all.  But, my radiation oncologist told me there was a "decent chance" that I would retain some ejaculate in the long term.  6 months out I have reduced ejaculate and I can't tell the difference between before and after...but, it's still early for me and I may yet lose it all.  JustJulie on this forum has a longer term view with her hubby and she may weign in with their personal experience.  Also, this whole thing with brachytherapy may be age and case dependent, as is the situation with lots of this PCa stuff.  Somewhere along the line your friend should speak to a radiation oncologist anyway, so this question should be posed to him/her.

Good luck,

Tudpock

Age 62

Gleason 4 +3 = 7

T1C

PSA 4.2

2 of 16 cores cancerous

27cc

Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 5/1/09.

Tudpock's Brachytherapy Journey: https://www.healingwell.com/community/default.aspx?f=35&m=1305643

Post Edited (Tudpock18) : 5/13/2009 3:41:08 PM (GMT-6)

Posted 5/13/2009 10:51 AM (GMT -6)
My advice?  Back off.  Sometimes, friends can do harm even though they mean well.  Let the friend do the investigations and travel the route of discovery himself.

Age:  59 (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

 

Posted 5/13/2009 11:09 AM (GMT -6)

Danielle,

One thing that you might consider is buying your pal Dr. Patrick Walsh's book "Guide to Surviving Prostate Cancer" available at your local bookstore. If he has any sense, he must come to terms and study up on the disease, it's diagnosis, treatment and possible life effects. Buy the book and tell him that he must take some quiet time to review his situation. Walsh gives alot of info and you buddy will find his situation adequately described. Doing nothing is not an answer.

TeddyG

Background:

Age 55, two teens, very fit cyclist (avg 2000+ miles per year) and weight, diet, etc. consistent with good habits. Stressful job as attorney; very supporting wife who is helping me through every stage of this war.

Stats:

2006 PSA - 1.5

2007 PSA - 2.3

2008 PSA - 5.3 (18 mos.)

2009 Jan. 20 - Biopsy 12 samples

        Feb 3 Dx 2/12 samples positive, low volume  (5% and 7-10%)

Gleason 3+4, later downgraded by second opinion at Johns-Hopkins to 3+3, but "it's still PCa" as my Doc said.

Laproscopic surgery April 9,  University of KY Medical Center, Lexington, 3 days in hospital, catheter removal April 21.

Pathology: clear margins, no cancer in prostate: told that this is very rare and Doc has only seen it in 3 out of over 1400 cases; I rearched the concept of "vanishing cancer" and found a tumor classification of tP0 and asked Doc if it applied to me. He said that it was unlikely because if a pathologist had done a much more detailed analysis of the tissue, he would likely find more foci somewhere, and biopsy found "needle in the haystack as opposed to the tip of the iceberg"; Nevertheless, it is a blessing;

Regardless of the science, my family says "miracle."

Now working w/ post-surgery issues....

Posted 5/13/2009 12:32 PM (GMT -6)
Thanks everyone for all of the input. It's been very difficult getting him to look at any prostate cancer information. He says he just wants to let the disease progress and do nothing. I know that is no way to go - very painful. I don't know if he'll ever 'come around' on this. He's had this outlook for a month now. He says if I can find info about therapy that will preserve his fluid, he will *consider* therapy, otherwise he's gonna do nothing. I'll def. look into the targeted focal therapy and the other resources mentioned. Thanks so much.
Posted 5/13/2009 1:15 PM (GMT -6)
Danielle et al.

I know this is a sensitive subject but it really shouldn't be - once you're diagnosed with prostate cancer there are no sensitive subjects anymore so I will answer this question for you.

Brachytherapy = no ejaculate = UNTRUE - either that or my husband is a freak of nature ... does that answer your question?

Seriously, if we are afraid to discuss EVERYTHING about this disease we risk making decision on inaccurate information.  Mind you, every man is different, and time may change things but for the time being (and forgive me if I offend anyone) I still don't like sleeping on the "wet spot" LOL!

 

Husband diagnosed in December 2005

PSA of 3.74

Gleason 6

Brachytherapy (91 stranded seeds) April 2006

PSA of 0.39 - November 2008 - whoo hooo!

Posted 5/13/2009 1:24 PM (GMT -6)
Julie,

Thanks so much for jumping in here and speaking up. This is a HUGE help. I so appreciate it.

Danielle
Posted 5/13/2009 1:29 PM (GMT -6)
I've learned to overcome all forms of modesty.  Since I've had kids and my husband has prostate cancer - nothing is too secret to discuss - especially around here.  It took me awhile to get to where I am but I figure if I can't laugh about it I'm going to cry and I don't like the second option as much as the first.

Just a note to you - kudos to you for doing the investigation your significant may not be able to - my husband's a smart man but not so computer literate so he relied on (and still relies on) me to help him through the investigation part of this process and if I can't help him then it makes my life that much better.

Regards,

JustJulie

Husband diagnosed in December 2005

PSA of 3.74

Gleason 6

Brachytherapy (91 stranded seeds) April 2006

PSA of 0.39 - November 2008 - whoo hooo!

Posted 5/13/2009 2:56 PM (GMT -6)

Julie, I'm glad you weighed in on this with more extensive experience.  I knew that my fluid was still there but couldn't speak authoritatively about the long term....but you can.

Danielle, I agree that if you can get your friend to read Dr. Walsh's book it would be helpful.  I understand his denial, especially with the surgical implications.  For some men the surgical approach ("getting it out", "seeing the pathology") is all important.  For others, the short term (and possible) long term impacts of surgery are not worth it.

For brachytherapy, I encourage you to have your friend read Julie's journey and mine and the bottom of my signature.  They are both easy reads and may give him some hope concerning a less invasisve approach.  Brachytherapy's cure rates are approximately the same as surgery.  Also, re the side effects...it's generally thought that if your stuff (urinary and sexual) is working pre-procedure, it will be working afterwards.  That is certainly true for Julie's hubby and for me.  There are no guarantees with PCa, but there are options.  Hopefully, your friend will get past denial and spend some time researching and working through the possibilities.

Good luck,

Tudpock

Age 62

Gleason 4 +3 = 7

T1C

PSA 4.2

2 of 16 cores cancerous

27cc

Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 5/1/09.

Tudpock's Brachytherapy Journey: https://www.healingwell.com/community/default.aspx?f=35&m=1305643

Posted 5/13/2009 4:39 PM (GMT -6)

Danielle:

I finally found what I was look for at www.prostate-cancer.com.  Here is some info and some percentages re staying "wet" with brachytherapy:

The prostate gland and the seminal vesicles are responsible for creating the fluid that makes up semen. Consequently, most men report a decrease in their amount of ejaculation. Men are still able to experience orgasm though their ejaculation will be reduced. about 5% of patients who have undergone brachytherapy report completely dry orgasms, while about 5% of brachytherapy patients report no change in their ejaculation.

So, there is a 95% chance that there will be some ejaculate with orgasm after brachytherapy.

Hope this helps,

Tudpock

Age 62

Gleason 4 +3 = 7

T1C

PSA 4.2

2 of 16 cores cancerous

27cc

Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 5/1/09.

Tudpock's Brachytherapy Journey: https://www.healingwell.com/community/default.aspx?f=35&m=1305643

Posted 5/13/2009 7:47 PM (GMT -6)
Stay with him. You may want to change doctor's and get a second opinion. I told my doctor to get the cancer out was the first priority, getting me out of depends was second, and third was the erection issue.
 

Age 49

occupation accountant

PSA increased from 2.6 to 3.5 in one year

biopsy march 2008 - cancer present gleason 7

Robotic Surgery May 9, 2008 - houston, tx

Pathology report -gleason 8, clear margins

12 month  PSA <.04 (low as the machine will go)

continent at 10 weeks (no pads!)

ED is still an issue but getting better

Posted 5/13/2009 11:37 PM (GMT -6)
Danielle, I think it quite reasonable for your friend to undertake a period of "watchful waiting". This does not mean "do nothing" -- rather it means careful monitoring of progression (if any!), with regular PSA tests and biopsies where indicated. Also, diet may help, although opinions are divided on how effective it is.

There have been discussions here and other places about the risk of over-treatment. Any treatment your SO has will have side effects, so he is correct to be concerned about those. Uncontrolled cancer has side effects too, and he should also be concerned about those. But he may be one of the lucky ones where the cancer progresses slowly, and he ends up dying of something else.

With his numbers, there is no need to rush. Take a year or two to consider the options. There is no "right" solution. Take time to research the treatments possible to find the one that gives him the best outcomes with the least risk and side effects. Best for him! That may indeed be a "do nothing" option, but I believe it is a decision best made by examining all the options and not by burying his head in the sand.
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.

Posted 5/14/2009 2:26 PM (GMT -6)
I have to say that many of us have the same reactions as your SO although perhaps not in the same words. Won’t be able to ejaculate! Will I get any pleasure? Will it still please you? I’m afraid I won’t feel like a man any more and that means that no one will want me. Maybe it won’t even feel like I’ve had sex. Will I even be able to imagine sex? Will I look at erotic movies and hate the fact that they are doing what I can’t do?

Or perhaps slightly closer to the point.
I’m afraid. I don’t know what is going to happen to me. I don’t know if I can take this without breaking. I want control of my life back. I’m so afraid.

Fear. Everyone of us has had it, does have it, will have it. Nothing will make it go away: not operations, not radiation, not watchful waiting, not ignore it all.

There is a lesson here, but each of us must find it for ourselves
Age at diagnosis 66, PSA 5.5
Biopsy 12/08 12 cores, 8 positive
Gleason 3 + 4 = 7
CAT scan 1/09 negative, Bone scan 1/09 negative

Robotic surgery 03/03/09 Catheter Removed 03/08/09
Post surgical pathology report. Lymph nodes negative, Seminal vesicles negative
Surgical margins positive, Capsular penetration extensive Gleason 4 + 3 = 7
At 6 weeks: 1 pad/day, 1 pad/night -- mostly dry at night.

Posted 5/14/2009 3:01 PM (GMT -6)
Geezr99. Boy did you ever it that nail on the head. I could not have said it better.
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

 ED- 5 mg Cialis daily, pump daily,

Posted 5/14/2009 7:41 PM (GMT -6)

    For what it is worth tell you friend that many of us guys that are now "shooting blanks" have stronger, longer lasting orgasams without the messy clean up.  He must also be aware the there is a chance that he could battle incontinance.  But I can personally say the even that can be managed one way or another.

   Good Luck with his decision.

    KW

    43 at Dx and Surgery (RRP)

    PSA 5.7, Biopsy 3 of 12 positive (up to 75%) all on left side of prostate, Gleason 7

    RRP on Oct. 17, 2006 - Nerves on right side saved. All Lab's clear. 

    Cathiter in for 28 days due to complications in healing. Removed Nov. 9, 2006

    First Post op PSA on Dec. 11, 2006  Undetectable 0.00.

    ED workable and usable with Viagra.

    Feb. 20th, 2007 - Feb. 4th, 2008  Cystoscope, Two Collagen injections,Second Opinion Consultation for Incontinance at OU Medical Center, Bio-Feedback training, Chiropractic, Accupuncture  to try to resolve ongoing incontinance (4-6 pads a day)  All PSA's 0.00.

    Feb. 22nd, 2008 - Surgery to install the AMS AdVance Male Sling.

    March 27th, 2008 - Sling not working, Little or no improvement.

    April 18, 2008 - Collagen injection.  Back to using 4-6 full pads a day within a week.

    May 14, 2008 - Another collagen injection to try to Band-Aid the leaking for our June cruise.  Will start making conusultation appiontments for AUS after we return.

    July 14th, 2008 - AUS consultation with Dr. Morey at UT Southwestern (Dallas).

    July 30, PSA 0.00.

    Aug. 22nd, 2008 - AUS Surgery by Dr. Morey

    Oct. 6th, 2008 - AUS Activation by Dr. Morey.  Working Great, only light drips and dribbles.

    Jan, 31st, 2009 - PSA 0.00  Next test in July, 2009  

    https://www.healingwell.com/community/default.aspx?f=35&m=721171

    https://www.healingwell.com/community/default.aspx?f=35&m=978691

    https://www.healingwell.com/community/default.aspx?f=35&m=1219231=1219231

 

 

   

   

     

Posted 5/14/2009 8:19 PM (GMT -6)
HI, Danielle,

OK, listen up. It is true that if you have surgery there will be no ejaculate. But on the positive side, they are longer, better than any O I've ever had. I liken it to the female orgasm where the woman also has no ejaculate, but she seems pretty pleased, and darn near worn out afterward. For all you guys who have seen this, I think you know what I mean. If this is getting into the feminine side of myself, then bring it on. I had no idea it was going to be this way and I don't mind it a bit.

Besides, no one has to sleep in the wet spot. Truly, hope this helps.

Bob
 AGE:57

 Dx: October,27(the day after my birthday)

 Psa 14.5

 Gleason:(4+3) 7 T1c

 Bone scan:Negative

 Cat scan: Negative

 Biopsy: 4 of 12 positive, left side, pre-cancerous on the right.

 Confined to prostate.

 DaVinci Jan. 19th, No lymph node involvement, all margins clear.

 8 week PSa <0.01

 Gleason downgraded to (3+4)7

 Fully continent...ED progressing as expected.

Posted 5/15/2009 12:41 AM (GMT -6)
To all of you... ralph alfalfa, kw, corvetteman3, geezer99, Piano, JustJulie etc. etc.:

THANK YOU! I really appreciate your input. My best friend and I have a unique relationship. He's like my brother. Anyway, we rely on one another, A LOT. That's why I'm so involved in this with/for him. He doesn't have tolerance for this research and I am taking your info and passing it along to him. I do REALLY appreciate the candid answers. What you all have gone through and your insight is truly helping the next unfortunate set of people getting their diagnoses. It's invaluable. If we all just relied on what one person told us about PC we'd be sadly misinformed.

Thank you so much for your guidance. Now I'll hopefully work on his perceptions of being a "whole man", which he has been focusing on and your comments have been very helpful.

Between you all and me, as a lady, I'd have zero problem with sacrificing the wet spot on the bed.

Take care and THANK YOU!

--Danielle
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