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la2rc
New Member


Date Joined Apr 2011
Total Posts : 18
   Posted 4/26/2011 3:15 PM (GMT -6)   
My boyfriend was recently diagnosed and I would just like to try and understand how he might be feeling and what he is going through.
Some history in case it ends up being relevent somehow: our relationship is fairly new. We've been seeing each other for less than a year, although we dated when we were teenagers, but led very different and separate lives until recently. I moved in with him about 6 weeks before his surgery. Up until then I was flying in once or twice a month, so even though we've been exclusive for a year, we've only been 'together' for a short time. I feel like I'm still getting to know him and I'm a little unsure when my 'looking after him, healthwise' turns into nagging.
He came through surgery (Mayo Clinic in MN) fine, although it turned out to be a bit more involved than we originally thought. Unfortunately his nerve bundles were not able to be saved. His catheter was removed after one week. He does have some minor incontinence issues which is where most of his frustration lies. I believe it's mostly when he coughs, laughs, sneezes, that sort of thing. However, he does have some leakage at night. I try not to bug him about doing his kegels but I'm assuming that is really the only thing that will help. Can anyone tell me if things automatically get better with time, or does he really need to keep up with his exercises? He gets through the day pretty easily by wearing an athletic supporter with a pad in it. Figuring that much out has helped a lot...especially since he has a very physical job.
We just received his vacuum erection device yesterday and will be trying that out soon.
Does anyone have any advice about what bothered you as far as your significant other's involvement in your treatment? So far, he has pretty much left all research and medical 'stuff' up to me. I'm feeling a little overwhelmed and a lot under-informed...help!
michelle

Boyfriend's stats: 52 yrs old
12/29/10: PSA 14, biopsy of 8 cores showing 70-80% involvement. Perineural invasion present, extraprostatic extension is present.
Gleason 4+3
1/21/11: CT & Bone scans show no evidence of metastatic prostate cancer.
3/24/11: daVinci radical prostatectomy & bilateral pelvic lymphadenectomy w/bilateral wide resection.

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2448
   Posted 4/26/2011 3:32 PM (GMT -6)   
Michele, I would like to say welcome to HW.

But more importantly I would like to say bless you for your tremendous support for your man. The support of a loved one is one of the greatest things guys like us need and long for. There are no words to tell you how much it means to us.

The incontinence will get better for sure. The kegels are always good to keep doing. I am 19 months post surgery and I still do them. I don't require any pads by day and leaking very little. Once in a while I will wear one to bed if I have been drinking a lot of fluids. I take a sleep aid and sometimes I am so tired that I just don't wake up in time.

My wife also has cancer so our involvement in each others cancer and treatments is a given. Recently I was lucky to have gathered with 18-20 others guys from here for a weekend of brotherhood and fun. I can tell you that without exception all commented on the strength of their loved ones and their involvement in their lives. None minded and all appreciated it.

Try not to be so overwhelmed with all of this. The surgery is done and now life will adjust to living as a survivor. Changes will come with it, but then again change happens in all of our lives anyway.

You have found a great place to come for answers, discover new questions or just plain VENT, once in a while. This is a tremendously supportive and knowledgeable group.

Welcome,

Sonny
60 years old - PSA 11/07 3.0 PSA 5/09 6.4
da Vinci 9/17/09 Post Surgery Pathology: GS 4+3=7
Stage: T3a
Tumor Volume 12.5% positive margin, extra-prostatic extension
PSA .6 IMRT completed 1/15/10 35 treatments- 70Gy
2/23/10 Post IMRT PSA 1.0
3/22/10 PSA 1.5
4/19/10 PSA 1.2
5/22/10 PSA 1.3
8/9/10 Radiation for MET
9/7/10 PSA 2.2
1/5/11 PSA 3.9
3/7/11 PSA 4.2
4/10/11 PSA 3.8

Steve n Dallas
Veteran Member


Date Joined Mar 2008
Total Posts : 4849
   Posted 4/26/2011 3:47 PM (GMT -6)   
michelle - welcome to the site....Sorry you have to be here..
 
One month after surgery is a very very short period of time...And it sounds like he's doing great... Just hang tight - give him a little space but keep being YOU.

Moderator - Prostate Cancer
Age 56 - 5'11" 215lbs
Overall Heath Condition - Good
PSA - July 2007 & Jan 2008 -> 1.3
Biopsy - 03/04/08 -> Gleason 6
06/25/08 - Da Vinci robotic laparoscopy
05/14/09 - 4th Quarter PSA -> less then .01
11/20/09 - 18 Month PSA -> less then .01
05/18/10 - 24 Month PSA -> less then .01
Surgeon - Keith A. Waguespack, M.D.

tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2845
   Posted 4/26/2011 4:14 PM (GMT -6)   
Michelle and partner:
Welcome to HW - it has a wealth of information - links at the top of the page - and patient-to-patient support.

It takes time to heal up after surgery - and some men have difficulty with incontinence afterwards - mine finally started improvement after 16 weeks ( a prior posting in HW stated that week 14 is often when nerve endings start communicating again - and incontenence is reduced).

Would your boyfriend/partner feel more comfortable/normal if he had the pee pad just held in place wearing jockeyshorts / underwear instead of using a athletic cup? To me, the cup would focus on the area and problem, rather than put it aside so I could focus on getting better emotionally, physically post-op.

Wishing you both all the best.
hugs,
BRONSON
Age:55 -gay with spouse of 14 years, Steve -Peterborough, Ontario, Canada
PSA:10/06/09 3.86
Biopsy:10/16/09- 2 of 12 cancerous, 5% involvement -Gleason 7 (3+4)
Radical Prostatectomy:11/18/09
Pathology:pT3a -Gleason 7 -extraprostatic extension -perineural invasion -prostate weight -34.1 gm
PSA:04/08/10 -0.05 -Zero Club
PSA:09/23/10 -0.05 -Zero Club
PSA:03/24/11 -0.02 -Zero Club
PSA:03/24/12- TBA

142
Forum Moderator


Date Joined Jan 2010
Total Posts : 7082
   Posted 4/26/2011 4:18 PM (GMT -6)   
Michelle,
 
It took me two months to get below 7 pads a day after DaVinci surgery. I can say that progress is very unpredictable, and he may not notice it at first. I experienced shifts - things would get better, then backtrack for a while before settling at the next "improved" level.
 
I am now about 18 months out, still do kegels every day, and still have leakage (about a pad a day most days, sometimes more), but that seems to be due in part to my radiation after surgery.
 
I don't have a "significant other", so can't speak to what I might have hidden. I have to nag myself to do the kegels, get in my hour a day exercise, and do my ED therapy.
 
I'll also offer my Welcome to the club no one wants to belong to. Speak up, we try to help with our non-medical but very real experience, and we handle venting pretty well too.
DaVinci 10/2009
My adjuvant IGRT journey (2010) -
www.healingwell.com/community/default.aspx?f=35&m=1756808

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25393
   Posted 4/26/2011 5:41 PM (GMT -6)   
Welcome, Michelle, to both you and your boyfriend. I am already glad he has you standing by his side. That makes a big diffference when one deals with both cancer and major surgery. I hope you both do well in the weeks and months ahead.

Please stay regular with us and keep us posted. And ask all the questions you need.

David in SC
Age: 58, 56 dx, PSA: 7/07 5.8, 10/08 16.3
3rd Biopsy: 9/08 7 of 7 Positive, 40-90%, Gleason 4+3
open RP: 11/08, on catheters for 101 days
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Incont & ED: None
Post Surgery PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Post SRT PSA: 1/10 .12, 4/8 .04, 8/6 .06, 2/11 1.24, 4/11 3.81
Latest: 6 Corr Surgeries to Bladder Neck, SP Catheter since 10/1/9, SRT 39 Sess/72 gy ended 11/09, 21 Catheters, Ileal Conduit Surgery 9/10

la2rc
New Member


Date Joined Apr 2011
Total Posts : 18
   Posted 5/2/2011 12:15 PM (GMT -6)   
Thank you everyone! I know that I'll learn a lot here.
Boyfriend's stats: 52 yrs old
12/29/10: PSA 14, biopsy of 8 cores showing 70-80% involvement. Perineural invasion present, extraprostatic extension is present.
Gleason 4+3
1/21/11: CT & Bone scans show no evidence of metastatic prostate cancer.
3/24/11: daVinci radical prostatectomy & bilateral pelvic lymphadenectomy w/bilateral wide resection.

tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2845
   Posted 5/2/2011 1:29 PM (GMT -6)   
Michelle:
just bumped up to the top of the PCa postings - the link to the "ladies only" forum -
hugs,
BRONSON
Age:55 -gay with spouse of 14 years, Steve -Peterborough, Ontario, Canada
PSA:10/06/09 3.86
Biopsy:10/16/09- 2 of 12 cancerous, 5% involvement -Gleason 7 (3+4)
Radical Prostatectomy:11/18/09
Pathology:pT3a -Gleason 7 -extraprostatic extension -perineural invasion -prostate weight -34.1 gm
PSA:04/08/10 -0.05 -Zero Club
PSA:09/23/10 -0.05 -Zero Club
PSA:03/24/11 -0.02 -Zero Club
PSA:03/24/12- TBA

la2rc
New Member


Date Joined Apr 2011
Total Posts : 18
   Posted 5/2/2011 1:33 PM (GMT -6)   
Thank you, Bronson :)

Michelle (hoping she's still allowed to poke around in the men's section)
Boyfriend's stats: 52 yrs old
12/29/10: PSA 14, biopsy of 8 cores showing 70-80% involvement. Perineural invasion present, extraprostatic extension is present.
Gleason 4+3
1/21/11: CT & Bone scans show no evidence of metastatic prostate cancer.
3/24/11: daVinci radical prostatectomy & bilateral pelvic lymphadenectomy w/bilateral wide resection.

Architect
Regular Member


Date Joined Apr 2011
Total Posts : 43
   Posted 5/2/2011 1:45 PM (GMT -6)   
la2rc,

Welcome to the Site. I'm new here too.

I haven't yet had RALP, but have decided to go through it very soon (ASAP).

At age 36 (with a 31 year old wife) the sexual implications should be a bigger deal for us than they are. We decided early on that having more time together outweighed any sexual dysfunction probabilities.

Regarding nagging - I'm so thankful for my wife. My father was diagnosed with prostate cancer in 2009 at age 57. He passed on 3/17/11 and mostly suffered through prostate cancer that had metastasized into his bones alone. The fact that he was alone is what bothers me the most about his passing.

Therefore, find a way to GENTLY ENCOURAGE your significant other and let him know that you're always going to be there to help (ONLY IF YOU PLAN ON BEING THERE).
DX 4/26/11 (Age 36)

6/15/09 PSA 2.1
3/17/11 Lost Father to Complications of PC and Bone Cancer (Age 59)
3/30/11 PSA 2.5 & Abnormal DRE (Nodules felt) found during post-op for extracorporeal lithotripsy procedure
4/18/11 Biopsy
4/26/11 Biopsy Results = 3 of 12 Cores Positive (both lobes) with Gleason 6 (3+3)

la2rc
New Member


Date Joined Apr 2011
Total Posts : 18
   Posted 5/2/2011 2:35 PM (GMT -6)   
Architect...I'm sorry you're having to deal with this, and at such a young age. I don't know if you and your wife have had children yet, or want them, but your doctor should be talking to you about saving some sperm if that's a route you want to take. I remember my boyfriend's doctor bringing it up and feeling surprised, but that's mostly because we're both 52 and weren't thinking along those lines. Best of luck to you!!

p.s. I definitely plan on being here for him :)
Boyfriend's stats: 52 yrs old
12/29/10: PSA 14, biopsy of 8 cores showing 70-80% involvement. Perineural invasion present, extraprostatic extension is present.
Gleason 4+3
1/21/11: CT & Bone scans show no evidence of metastatic prostate cancer.
3/24/11: daVinci radical prostatectomy & bilateral pelvic lymphadenectomy w/bilateral wide resection.

DaSlink
Veteran Member


Date Joined Feb 2011
Total Posts : 713
   Posted 5/2/2011 3:00 PM (GMT -6)   
Michelle and boy friend welcome aboard. It sucks that you have to be here at all. I am 12 weeks out of surgery and 99% continent. When they first removed the catheter, I thought I would never pee like a big boy again nono I do kegels every day still. The incontinence will get better.
As far as Ed issues,well lets say I still have major issues, but I'm only 12 weeks out. All though the "poke around in the guys area" remark is intriguing devil
Please keep us posted as things resolve and proceed and fell free to ask any question or even vent if needed!
Every minute you fish or ride,adds an hour to your life!

Age 52 Dx age 53 daVinci surgery
prostate volume 32 grams
Biopsy 12 cores with 7 positive
Gleason score of 7
1st PSA 38.7 10/05/2010
2nd PSA 49.9 11/23/2010
CT neg.
BS Negative
RRP on 01/25/2011
PT3a -40% involved
margin involved-Left anterior
lymph nodes -clear
1st post op PSA-0.26-03/16/11

Architect
Regular Member


Date Joined Apr 2011
Total Posts : 43
   Posted 5/2/2011 3:40 PM (GMT -6)   
Michelle,

Thanks.

My wife and I cannot have children. We went to a reproductive specialist after trying for about a year, and our test results have ruled out a successful pregnancy.

Wow - when I think about past two years....

* Tried to have children (wanted 4) but could not.
* Had kidney stone surgery for the 9th time (8th time for this particular type).
* Lost my father.
* Diagnosed with PC.

This ^^^^ would make a great country music song.

On a serious side, I'm glad you're sticking it out with your BF. He's going to need you (even if he acts like he's tough and can handle everything on his own).

tatt2man
Veteran Member


Date Joined Jan 2010
Total Posts : 2845
   Posted 5/2/2011 3:47 PM (GMT -6)   
Michelle:
- you are more than welcome to poke around the men's section. Just because some of them are on a diet, doesn't mean they can't look at the menu.
( will have to work on further response to include ED, incontinence and HT elements)
:-)
- you will find there are other female spouse contributors, who are not only their partner's caregiver but also their voice.
-hugs,
BRONSON
Age:55 -gay with spouse of 14 years, Steve -Peterborough, Ontario, Canada
PSA:10/06/09 3.86
Biopsy:10/16/09- 2 of 12 cancerous, 5% involvement -Gleason 7 (3+4)
Radical Prostatectomy:11/18/09
Pathology:pT3a -Gleason 7 -extraprostatic extension -perineural invasion -prostate weight -34.1 gm
PSA:04/08/10 -0.05 -Zero Club
PSA:09/23/10 -0.05 -Zero Club
PSA:03/24/11 -0.02 -Zero Club
PSA:03/24/12- TBA

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3741
   Posted 5/2/2011 3:53 PM (GMT -6)   
Michelle,
My wife always left the toilet seat up when she finished. I'm not sure if it was self preservation or a sign of support but I appreciated the effort.
Little, unsaid things mean a lot.

Jeff
Age: 58, Mar 35 yrs, 56 dx, PSA: 4/09 17.8 6/09 23.2
Biopsy: 6/09 7 of 12 Pos, 20-70%, Gleason 4+3 Bone, CT Neg
DaVinci RP: 7/09, U of Roch Med Ctr
Path Rpt: Glsn 3+4, pT3aNOMx, 56g, Tumor 2.5x1.8 cm both lobes and apex
EPE present, PNI extensive, Sem Ves, Vas def clear, Lymph 0/13
Incont: 200ml/day ED: Trimix
Post Surg PSA: 10/09 .04, 4/10 .04, 7/10 <0.01, 12/10 <0.01
AdVance Sling 1/10/11 Dry

lennybob
Regular Member


Date Joined Dec 2010
Total Posts : 99
   Posted 5/2/2011 8:43 PM (GMT -6)   
Michelle,
Welcome to the forum. You have found a very good place. I can't even imagine going through this without my wife. She is quite a woman and I am blessed to have her. Stay informed and be the best you can for your boyfriend.
Good luck and God Bless,
Lynn
Age 53...51 when diagnosed.
February/09 PSA 11...GP discoverd during yearly physical...referred to Urologist
Biopsy found cancer, Gleason score of 6.
July 2009...Nerve-Sparing open radical prostatectomy.
Doing very well...only issue is ED and that is showing improvement.

Ausboy
Regular Member


Date Joined Mar 2011
Total Posts : 92
   Posted 5/3/2011 3:58 AM (GMT -6)   

Hello, Michelle and BF

you have come to the right place for help, for sure, support on this forum is exceptional. I am about 2 weeks in front of BF with similar stats, 2 weeks ago I was as frustrated as ever with the incontenence issues and my expirience was pretty minor compared to some here, I was using 1 or maybe 2 light pads a day but just couldn't stop the minor leaking even clamping pelvic floor muscles, I was worried. I was dry at  night from week 1 /still except when wine affected. Must go into deeper sleep or something had three glasses the other night and bingo first bed wet since I was 3, oop's. I have done kegels but not as often as reccomended nono I now have just a little drip every now and then even went one day (8hrs) without pad and was dry. So I guess it does get better on it's own, but maybe as you get more physical, walking, driving just being active in general you subconciously hold pelvic floor?

As far as anything my wife done bothered me, no way, yes she does nag, have you taken this, have you done that, it says you should do this, blah blah blah, but wouldn't have it anyother way. She and you are just as affected by this disease and treatment as the partner although not physically. We have been together for about 30years and I think love gets to a different level after time and I really appreciate all she has done for me thru this ordeal, but don't say it enough. So read ask questions and keep nagging it's your job.

All the very best


age 49, dx 21-01-2011 PSA 5.6
12 cores all positive >80% in some, Gleason 3+3=6, T2B
RALP 10-03-2011, post OP pathology, Gleason 4+3=7 and 1% 5+4=9
Prostate 50g, 48mmx40mmx40mm, largest tumor 48mmx34mmx24mm, extensive PIN also present, EPE left apex .2mm, perineural invasion, clear margins closest was .7mm, lymph nodes not checked.
path stage pT3A Nx Mx R0
post OP PSA ? 11/5/2011

goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2692
   Posted 5/3/2011 4:24 PM (GMT -6)   
I have shared with some of the guys that in some ways, the side effects of surgery, particularly the ED, has improved our relationship.

Most men fear that if they can't be the stud they once were, that their wife or partner would leave them, or the relationship they once had would suffer greatly.

Can't say there isn't some suffering, and it just ain't like it was, but in our relationship, my role as a lover has changed significantly. For 37 years, my primary goal was to get to a point where I achieved satisfaction, not really paying as much attention to where my spouse finished up.

Now, my goal is to make sure that my spouse is the one who is satisfied. I am secondary, and frankly, I usually need to satisfy myself, just because that is how it is now. Our relationship has grown, our love has become even deeper, and after just celebrating anniversary 39, have no doubt about the "til death" vow that we took will be when we separate.

The biggest support you can be to your friend is to assure him of your love and support, and that no matter what the outcomes, you will be there.

That's my 2 cents worth.
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,  9 month PSA < .01
1 year psa (364 days) .01
15 month PSA <.01

Susan R
Veteran Member


Date Joined Dec 2010
Total Posts : 511
   Posted 5/3/2011 6:49 PM (GMT -6)   
I suppose as one of the wives, I will put in a thought or two. I am certain that I just drove my husband nutty, but I can tell you, his answer, right now as he is talking to me....."ask to many questions" I think the best you can do it make sure to take care of yourself, sleep, eat, exercise (if you do), do something nice for yourself. Know that this disease is absolutely going to effect both of you. If you take care of you, then you are able to have the patience/love and support that he is going to need. You will also need the patience since he is bound to feel a huge range of emotions. Make sure to keep the lines of communication open, and any touch is always healing. Have you considered finding a support group in your town?

Best of luck to you
Susan (and Michael)
Husband 39 at diagnosis 12/2010.
No symptoms, PSA 18 in 10/2010
one month antibiotic then PSA 12.6 in 11/2010
biopsy end of 11/2010 Gleason 6
Da Vinci prostatectomy 2/2/2011
1-2 pads per day
nocturnal erections within a month, and able to have sex with Levitra.
1st post-op PSA less than .05

staging: pT2aNo, Gleason 6
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