Good Times - wet vs. dry

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: http://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

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

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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)

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.

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Age 54   - 5'11"   205lbs

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

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Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3,9/8 14.5

Dear Best Friend:

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.

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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

 

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

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.

Danielle et al.

Julie,

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

Danielle

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.

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

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Age 62

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.

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.

---

 

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.

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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.

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

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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.

Geezr99. Boy did you ever it that nail on the head. I could not have said it better.

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Jeff T Age 57

    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

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

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 AGE:57

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