Healing fairly well and trying to move forward ...

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TryingToStayCalm
Regular Member


Date Joined Aug 2010
Total Posts : 53
   Posted 9/11/2010 9:21 PM (GMT -6)   
M's Robotic surgery was 2 weeks ago. He has some leakage - more now that he is more active - but still not even saturating a pad. He wears a pad over the depends just to be sure and changes it throughout the day. He knows when he has to go and the flow is good. Not able to stop it as of yet. Kegels are a part of his day. No pain whatsoever. Some tenderness around the wounds when touched. (so he doesn't)
 
He has been wanting to be intimate these last few days. And, the "intimacy" is no problem for me as I love being close. He has shown no signs of erection at all, and doesnt seem to be bothered by it which is great, and yet I feel like there is no rush. I am for some reason inclined to believe that if he becomes too aroused it may result in an erection and potentially cause some damage? Is there such a thing as too soon? Did I hear somewhere that you should wait? When did your docs start you on treatment for the ED? Were you ready? I dont want to create a problem where there is none but could use some advice?
 
We have a long road ahead as we meet with the medical oncologist and determine the next steps as far as HT and radiation and my concern has been these very aggressive cancer cells which caused him to fill up with 70% cancer in no time at all. My head and my heart are entrenched in saving his life. I don't mind being playful along the way if it's not going to do any harm. Life is important to LIVE especially at this time.
 
Thanks in advance.
Judy
Husband DX on 6/30. Age 56. PSA b/fore surg. 7.9. Biopsy 6/12 positive 5=50%/90%, 1/10%. PNI present. Gleason 7 (3+4). Robotic RP Mt Sinai. NYC. 8/26. POST SURGERY PATH: Extensive bilateral involvement. Gleason 7 (4+3) w/ some 5 patterns. 70% of slides contain tumor. 42g. Extends beyond capsule into tissue and left seminole vesicle. Extensive Intra & Extra prostatic PNI w/tumor. Lymphs neg. pT3b

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 9/11/2010 9:33 PM (GMT -6)   
Judy, sounds like a very positive recovery path going on there with M. This is good to read. Sounds like his incontinence issues are being resolved in a timely manner. Sounds like he has a good attitudee going. Happy for both of you.

The ER part, best advice is whatever advice his doctor gave him. Some guys are too sore to even think about it for a while. Others, especially sound of our younger friends, are eager to get back into the "game".

I had catheters in me for 60 days straight, after surgery, and as I was healing, the last thing I wanted to do was to be errect with a cath in place. It happened a few times near the end, and it was a painful happening. My wife patiently waited me out as I was healing.

When my uro/surgeon met with me at the 90 mark, he was all prepared to give me his ED talk and I am assuming having me try one or more of the ED meds, but I surprised him and told him I didn't need anything. That has been the one miracle in my journey. My left nerve bundle was taking out with a wide margin, and they couldn't get a clean shot due to how my prostate bed was shaped on the right side. So they never removed the right side, but my surgeon noted it as being "damaged".

In total honesty, I never had any ED. Even with one set of nerves left, once the cath was out, I was able to perform as normal. My own surgeon is still amazed and said he couldn't give me any medical reason why I didn't have a problem. He certainly didn't try to claim the credit for it from a surgical point of view.

Unfortunately, since I had salvage radiation, and considering I have been on SP catheters for nearly a year now, sex is very painful. That part still works fine as before surgery, but pain involved discourages me from wanting to participate for my own reasons.

Your M may do very well in that area too, when his recovery is at that point.

Good luck to the both of you.

David in SC

Post Edited (Purgatory) : 9/11/2010 9:46:56 PM (GMT-6)


Fairwind
Veteran Member


Date Joined Jul 2010
Total Posts : 3892
   Posted 9/11/2010 9:40 PM (GMT -6)   
The big moment will that first PSA reading..My surgery and results are about the same as yours.. Read pages 381- 385 in Walsh's book..

That 4+3 = 7 with some 5 patterns thrown in means we have our work cut out for us and you want to be SURE radiation is the best choice at this point...Let that healing continue as long as you can..
Age 68.
PSA at age 55: 3.5, DRE negative. Advice, "Keep an eye on it".
PSA at age 58: 4.5
PSA at age 61: 5.2
PSA at age 64: 7.5, DRE "Abnormal"
PSA at age 65: 8.5, DRE " normal", biopsy, 12 core, negative...
PSA age 66 9.0 DRE "normal", 2ed biopsy, negative, BPH, Proscar
PSA at age 67 4.5 DRE "normal"
PSA at age 68 7.0 third biopsy positive, 4 out of 12, G6,7, 9
RRP performed Sept 3 2010

TryingToStayCalm
Regular Member


Date Joined Aug 2010
Total Posts : 53
   Posted 9/11/2010 9:45 PM (GMT -6)   
Thanks David. I'm sorry you have had the cath in for so long. I read your journey with each post and just cannot imagine the discomfort and frustration. I'm glad however you didnt have issues with ED but am hoping the pain goes away in time. I think M will be ok in time. We didn't have too much instruction from the doc on anything frankly. He wasn't very talkative at all. And right after M's surgery went away on a conference. His associate called M with the path results which we took to our local Uro to get the cath out and explain in more detail. He said nothing about ED as at that moment M was suffering from that horrid fever and infection.

I like M being playful. It's not intercourse he is thinking about. He is being an attentive husband and I think wanting to show me he still feels alive which is a very good thing. I guess I will just let nature take it's course and let him tell me if he has discomfort or pain. we are going to email the doc tomorrow to get some more instruction and a recommendation for an oncologist to discuss future treatment (although we have a doc in mind at Sloan). M has his nerves on both sides although they are both extensively cancer infiltrated.

Thanks!
Judy
Husband DX on 6/30. Age 56. PSA b/fore surg. 7.9. Biopsy 6/12 positive 5=50%/90%, 1/10%. PNI present. Gleason 7 (3+4). Robotic RP Mt Sinai. NYC. 8/26. POST SURGERY PATH: Extensive bilateral involvement. Gleason 7 (4+3) w/ some 5 patterns. 70% of slides contain tumor. 42g. Extends beyond capsule into tissue and left seminole vesicle. Extensive Intra & Extra prostatic PNI w/tumor. Lymphs neg. pT3b

TryingToStayCalm
Regular Member


Date Joined Aug 2010
Total Posts : 53
   Posted 9/11/2010 9:47 PM (GMT -6)   
Thanks Fair! I know those G8's and G9's puts it all in another perspective. I will dig out Walsh's book again. Promise!
Husband DX on 6/30. Age 56. PSA b/fore surg. 7.9. Biopsy 6/12 positive 5=50%/90%, 1/10%. PNI present. Gleason 7 (3+4). Robotic RP Mt Sinai. NYC. 8/26. POST SURGERY PATH: Extensive bilateral involvement. Gleason 7 (4+3) w/ some 5 patterns. 70% of slides contain tumor. 42g. Extends beyond capsule into tissue and left seminole vesicle. Extensive Intra & Extra prostatic PNI w/tumor. Lymphs neg. pT3b

BB_Fan
Veteran Member


Date Joined Jan 2010
Total Posts : 1011
   Posted 9/11/2010 10:08 PM (GMT -6)   
Sorry about your husbands pathology report. You really need to take charge now. Get a good medical oncologist and radiation oncologist. You need docs that you can count on.

NEIrish
Regular Member


Date Joined Aug 2010
Total Posts : 245
   Posted 9/11/2010 11:15 PM (GMT -6)   
Judy:  Bottom line, you have to ask your doc.  My husband's surgeon is not one of those in the majority that want the guys to start "work" on the E function by 4 wks.  At our first postop for the PSA bloodwork 6wks later we told him that he's orgasmic (sounds like your guy is as affectionate as mine):-), but without erection.  The surgeon talked about the nerves being in shock and it's no problem, function will return.  He had no protocol to offer or encourage like Dr. Mulhall at Sloan.  When asked for Viagra, he promptly wrote the script for it and wished us luck.  We're on our own, but we weren't warned about early sexual activity, just not encouraged in the least.  Strange, and as with so many things with this cancer, we're left floating in the gray zone.   

geezer99
Veteran Member


Date Joined Apr 2009
Total Posts : 990
   Posted 9/12/2010 5:13 PM (GMT -6)   
Some guys report erections while the cath is still in -- doctors don't seem to object. You and your husband are on a new track and pretty much have to find your own way. It is pretty much "if it feels good, do it" Even though I have ED I still get great enjoyment from "pleasuring" my wife. In fact, the bigger problem is that she is used to me being physically responsive and tends to wonder if she is doing something wrong. No. This is a new chapter in your sexual relationship. Draw upon you love for each other and go forward.

Aimzee
Veteran Member


Date Joined May 2010
Total Posts : 1406
   Posted 9/12/2010 6:23 PM (GMT -6)   
It's funny Judy because I just posted on our August Surgeries thread
our guys (Irish, too) are near the end of their journey except the Sex Parts,  and specific topics will be addressed with the participants elsewhere.  And here you are!
 
As with Irish's husband, ED and sexual intimacy was not discussed or encouraged.  I think, as she said, our doctors feel you're on your own.  I am sure you will be provided with additional information in the coming week or so.  M remains in our thoughts and prayers!
 
Best wishes,
Aimzee
Husband Ron, age 63
Had Progesterone shots for 6 months. January PSA was .05.
4/1/10 PSA 5.5 Prostate size = 50 cc.
On Cipro (antibiotic) for 16 days
Biopsy on 4/20/10 12 samples... Adenocarcinoma: 3 positive on right side,
one core left base (5% ` 0.5 mm) - two cores of left lateral mid
(20% ~ 2mm, 10%, 10% ~ 1mm) - No Perineural Invasion
Gleason 6 (3+3)
Bone Scan/CT Negative
The surgery has been postponed twice.
August 18, 2010 - da Vinci Prostatectomy

(I do the posting for both of us.)

TryingToStayCalm
Regular Member


Date Joined Aug 2010
Total Posts : 53
   Posted 9/12/2010 9:42 PM (GMT -6)   
It sounds to me like the consensus is not too much information from the mouths of our docs .. but I respect all who share their own experiences and trust deeply your own anecdotal records...left floating in the gray zone .. so true ..

NEIrish - I totally get it and appreciate your sharing. M is definitely orgasming without the erection. More of a tantric feeling. Time will tell of course, and as I said there is no rush.

Geezer - Thanks and we are moving forward ... nothing stays the same and of course my main concern is his staying alive .. his QOL.. and living to the fullest each and every day ...

Aimzee - just saw your post .. we are so on the same wavelength! Thanks for your continued suport ..

Thanks all .... next step is seeing the medical oncologist for some suggested protocol .. long road ahead...
Judy
Husband DX on 6/30. Age 56. PSA b/fore surg. 7.9. Biopsy 6/12 positive 5=50%/90%, 1/10%. PNI present. Gleason 7 (3+4). Robotic RP Mt Sinai. NYC. 8/26. POST SURGERY PATH: Extensive bilateral involvement. Gleason 7 (4+3) w/ some 5 patterns. 70% of slides contain tumor. 42g. Extends beyond capsule into tissue and left seminole vesicle. Extensive Intra & Extra prostatic PNI w/tumor. Lymphs neg. pT3b

ejn
Regular Member


Date Joined Jun 2010
Total Posts : 87
   Posted 9/13/2010 12:17 PM (GMT -6)   
Judy,  I asked my doc about this and he said anytime you feel like it.  Actually he put me on 5mg Cialis the day the cath came out and asked me to call him and let him know how it goes.  I have the 6 week with him on 9/28.  I think it is completely up to your recovery prgress and how you feel.
 
Ed
53

Pre OP PSA: 1/2008=5.9, 2/2010=6.0 (free=9%)

Biopsy, 4/10/2010 This was my 2nd Biopsy. The Uro put me out and took 36 samples. 3 samples positive 1%, 2%, 2% no evidence of perineural invasion. T1c

April 2010


CT Scan: Negative


DaVinci: Coming up 8/11/10, Dr David Bryan, SSM DePaul-St Louis
Post Op Path:
Gleason 3+3=6
Tumor involves left lobe only
Tumor constitutes less than 5% of gland volumne
No vascular or neural invasion detected
No capsular invasion detected
Distal urethral margin of resection free of tumor
Proximinal urethral margin of resection free of tumor
Radial margin of resection free of tumor
Seminal vesicles uninvolved by carcinoma
TM stage T2a (unilateral less than 1/2 of one side), NX, MX
ALL Margins uninvolved
Extra Porsaatic extension: Absent

TryingToStayCalm
Regular Member


Date Joined Aug 2010
Total Posts : 53
   Posted 9/13/2010 7:27 PM (GMT -6)   
Thanks Ed. And, good luck on your 6 week visit. M actually had an orgasm tonight w/out an erection. It was strange but enjoyable he said. I think any activity is good as it gets the blood going down there. Thanks!
Husband DX on 6/30. Age 56. PSA b/fore surg. 7.9. Biopsy 6/12 positive 5=50%/90%, 1/10%. PNI present. Gleason 7 (3+4). Robotic RP Mt Sinai. NYC. 8/26. POST SURGERY PATH: Extensive bilateral involvement. Gleason 7 (4+3) w/ some 5 patterns. 70% of slides contain tumor. 42g. Extends beyond capsule into tissue and left seminole vesicle. Extensive Intra & Extra prostatic PNI w/tumor. Lymphs neg. pT3b

An38
Veteran Member


Date Joined Mar 2010
Total Posts : 1152
   Posted 9/13/2010 9:03 PM (GMT -6)   
I think this is so great for M. An orgasm without an erection would be strange for sure, but its the new normal, I must tell Paul about it.

Good luck Ed with your doctor's appointment.

An
Husband's age: 52. Sydney Australia.
Family history: Mat. grandfather died of PC at 72. Mat. uncle died of PC at 60. He has hereditary PC.
PSA: Aug07 - 2.5|Feb08 - 1.7|Oct09 - 3.67 (free PSA 27%)|Feb10 - 4.03 (free PSA 31%) |Jun10 - 2.69. DRE normal.
Biopsy 28Apr10: negative for a diagnosis of PC however 3 focal ASAPs “atypical, suspicious but not diagnostic” for PC. Review of biopsy by experienced pathologist, 1/12 core: 10% 3+3 (left transitional), 1/12 core: ASAP (left apex)

Nerve sparing RP, 20Aug10 with Dr Stricker. Post-op path: 3+4. Neg margins, seminal vesicles, extraprostatic extension. Multifocal, with involvement in the peripheral, apex, fibro-muscular and transitional zones.

Aimzee
Veteran Member


Date Joined May 2010
Total Posts : 1406
   Posted 9/14/2010 1:58 AM (GMT -6)   
Judy, in this respect M has experienced something Ron hasn't yet.  This seems to be the norm?  We will still provide support as you and M need it.
 
Ed, it is possible because of Ron's other pain, that was why he didn't receive a script.  We'll be visiting the doc on 9/28 as well.  Good luck is wished for both you and  for Ron.
 
Aimzee
Husband Ron, age 63
4/1/10 PSA 5.5 Prostate size = 50 cc.
Biopsy on 4/20/10 12 samples... Adenocarcinoma: 3 positive on right side, one core left base (5% ` 0.5 mm) - two cores of left lateral mid
(20% ~ 2mm, 10%, 10% ~ 1mm) - No Perineural Invasion
Gleason 6 (3+3)
Bone Scan/CT Negative
August 18, 2010 - Da Vinci Prostatectomy
Post Op: Gleason 3+4=7
Negative surgical margins and lymph nodes
Both nerve bundles spared
Catheter - 13 days
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