any advice re post RP op side effects ..incontinence

slim991 · New User Joined: 16 Apr 2008 Posts: 6 Location: bc canada

hi
I am a newbie here 62 , diagnosed 18 mos ago ...I had the davinci treatment 3 weeks ago
previous to this I had two Eligard injections ( to shrink the gland down and to stabililze the cancer while waiting for surgery ) the last one 2 and a bit months ago ...I am still having strong hot flashes

my catheter was removed after 7 days and at first the leaking urine wasn't too bad ...perhaps because I was not too active for the next week , now however I do a bit more and consequently I leak more using up to 4 pads per waking part of the day ..( this limits my activities in a serious way )
I am doing my kegels very regularly and I was told that it may take up to 6 weeks for any improvement ...however I wonder if there are any of the group here that have strategies for coping more than I ...?

this forum is of real value to all of us who have had cancer touch our lives
thanks !

sanjis · Regular Joined: 12 Oct 2007 Posts: 29

I wish I could help, but my husband is very frustrated also. His surgery was December 13th. He is only wearing 1 pad a day, but to him having to wear a pad at all is very frustrating. And believe me he gets very very frustrated at all the after affects of the surgery. He does seem to be accepting it little by little more. I keep telling him I would rather have him here with me longer.

I can tell you it takes patience and I know that is hard to have at this moment.

Hoping you heal quick.

slim991 · New User Joined: 16 Apr 2008 Posts: 6 Location: bc canada

thanks for your reply
yes frustration is the order of the day ...I am trying to accept my position with a positive attitude ...frustration is wasted energy !
( but this is easier said than done as we know )
its good your husband is using one pad ...was that higher after the surgery ? has he 'improved' ?
how are his kegels coming ?
I find if I sit around all day ...not doing much then I can get by w/ maybe 2 ...but the minute I am up and about out walking etc the pad count goes up to 4 and 5 ....its a weird feeling having so little control .
how are his other side effects ...ED ?
I am still loaded w/ the anti hormone chemicals so I have / am zero in all that area
good luck to your husband !

sanjis · Regular Joined: 12 Oct 2007 Posts: 29

He was using 2 to 3 pads to start with after surgery. A lot depends also on how much strainuous work he does. He does HVAC in a commercial building, he also helps me tend to quite a few horses. Carrying hay and 50 lb bags of feed. Some days are better than others, sometimes it is controled a lot better and then all of a sudden for no reason it lets go. He was not put on any hormone therapy. His stomach is still sore sometimes even from the DaVinci surgery. You heal quicker but it still takes awhile. But the ED is still a problem, sometimes Cialis works enough, sometimes it doesn't. Orgasm is not an issue, just the erection. Will be candid here: Still has not had a totally full erection, but enough to penetrate and get the job done. And his testicles hurt afterwards. (That will be brought up at his appointment next week).
If your like us, well he should be taking the Cialis 2 times a week, but our insurance does not cover it. 6 Pills for us was $136 and we cannot afford it. So the 6 pills and the samples of 6 pills the doctor gave us has lasted until now. A VED device was given to us at the doctors office, still fighting with insurance to cover the $500 cost of it. But they say they do not cover any type of ED even if cancer related. Blue Cross Blue Shield stinks as far as that goes. We filed a grievance and it is being reconsidered, but still doubtful.
Hope this helps some.

kzimm · Regular Joined: 16 May 2007 Posts: 14

sanjis: Patience will be your ally. I had my operation last June. I needed pads and the like regularly for the first month or so, but with time and regular kegel exercise, this became a non-issue.

Walking was a frustration for the first few months, and I still have occasional "leaks", especially when either very relaxed or when lifting vigorously without thinking ahead of time to "clamp down".

This re-learning seems to me a process not unlike a child learning to control things for the first time. It takes a concerted effort and reminder of what's needed for management without pads/absorbent undergarments, etc. Of course, as adults, we're both not used to this and expect very fast results.

I have discovered how large a role the prostate served in preventing such leaks. Although my U.doc was able to preserve the primary sphincter at the base of the bladder, I'm assuming it only did part of the job; the prostate and kegels doing the rest. Now that one barrier is gone, the fact the other two don't do the whole job is apparent to me.

I understand each case is different. Keep encouraging him and be patient.
_________________
Kzimm

johnw100

A number of men have told me that their functions returned to reasonably normal at about 6 weeks, but there are large variations depending on a variety of factors including whether one or both nerves were spared.
Any exercise and activity should be moderate.

As mentioned, low dose viagra or similar a few times a week soon after surgery can help the healing process.

Hormone side issues can be helped with nutrition, supplements, exercise and medication. Things which trigger hot flashes can be intense exercise, spicy foods, hot drinks, coffee, alcohol.

slim991 · New User Joined: 16 Apr 2008 Posts: 6 Location: bc canada

thanks for all input !
yes I agree that this whole journey will take time and patience
my stomach is painful inside if I just move around too much , any twisting bending etc ...as was said after Davinci the outside heals quickly but inside slower ...my doctor told me when he read the surgery report that the inside was stitched w/ dissolving sutures and these pull painfully until the passage of time breaks em down .
I am taking a quarter of a tab of viagra most nights , I notice nothing at all as in the area of erectile activity but I have read too that blood flow is helpful to healing .
I had one set of nerves spared so I have work ahead in this area
as for the incontinence I guess I am lucky as when sitting and especially lying down ( sleeping ) the leakage is not too much
mostly when I am moving around walking etc then I have to use the extra absorbency pads ...and not go too far as I found out last weekend .
good luck to all in the journey

sanjis · Regular Joined: 12 Oct 2007 Posts: 29

Hubby went for 3 month check up after the surgery follow up today. Good news, PSA still undetectable. He said he was happy with the way things were going and improving. He said most need a pad for the incontinence at least for 6 months and it may take up to 2 years for the ED to get better and then it is possible still not for it to ever return or return like it was. He is gradually accepting it a tad bit more. At least hubby got good new, and I am thankful. My father, well I have been going thru the last 4 weeks colon cancer, they removed most of his colon and put in a colostomy bag for life, found out last night they didn't get it all, now he is going back to have the port put back in and they are going to bombard him at the same time with chemo and radiation. Cancer is hard to deal with one let alone with 4 the past the 2 years. Lost my mom, Breast cancer, then my husbands mother had kidney cancer, she is doing ok so far and then hubby and now my father. Just hard coping with all.

slim991 · New User Joined: 16 Apr 2008 Posts: 6 Location: bc canada

thanks for the update Sanjis I really hope something turns out right for your family . cancer is pretty devastating
it is very important to stay positive amidst the carnage ...
I am glad your husband has no PSA on the test
I will have mine in July
all the best !

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