Incontinence After Prostatectomy Surgery
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Another update regarding the super high PSA number.
I received a shot of Lupron on August 25th ( hormone ) and started my Erleeda ( Chemo )on September 9th. My PSA has dropped from 165 to just 1.31 in that short period of time. Still have to get to 0, but I certainly am going in the right direction. Don't know how long I'll be on these drugs but I go back for another shot of Lupron in late December.
Side effects are minimal, mostly fatigue and very mild hot flashes, but I could be wrong. I've been tired for a long time and don't really know what hot flashes are supposed to feel like so who knows. But it's not making any big difference in my day to day activities.
I received a shot of Lupron on August 25th ( hormone ) and started my Erleeda ( Chemo )on September 9th. My PSA has dropped from 165 to just 1.31 in that short period of time. Still have to get to 0, but I certainly am going in the right direction. Don't know how long I'll be on these drugs but I go back for another shot of Lupron in late December.
Side effects are minimal, mostly fatigue and very mild hot flashes, but I could be wrong. I've been tired for a long time and don't really know what hot flashes are supposed to feel like so who knows. But it's not making any big difference in my day to day activities.
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Bgharvey,
That is great news! I will give you an update from my previous post from a month ago. I had a CAT scan on Thursday, Oct. 8th which marks six months of immunotherpay. The medical oncologist said the radiology report was "fantastic". The swelling of the two affected lymph nodes had gone down from 1.8 cm to 0.8 cm. No mention in the report of cancer in the bladder. So, all was good. Plus my PSA reading was undetectable for the fifth straight month.
In retrospect, the decrease in cancer shows that the immunotherapy (Opdivo) is working. Before the CAT scan, I did not know if the Lupron itself was suppressing the cancer enough to zero out the PSA. So, now I know that both drugs are working well together and the cancer is being both suppressed and thankfully reduced.
I also tire more easily now, but I think I am still recovering from my unsuccessful chemo drug. Plus I was inactive for a few months due to passing blood, wearing a catheter, etc. I am 70 years old so it takes a while to get back in shape. I also experience the hot flashes but it's not a big deal to me compared to what I have been through. Take care and keep us informed.
That is great news! I will give you an update from my previous post from a month ago. I had a CAT scan on Thursday, Oct. 8th which marks six months of immunotherpay. The medical oncologist said the radiology report was "fantastic". The swelling of the two affected lymph nodes had gone down from 1.8 cm to 0.8 cm. No mention in the report of cancer in the bladder. So, all was good. Plus my PSA reading was undetectable for the fifth straight month.
In retrospect, the decrease in cancer shows that the immunotherapy (Opdivo) is working. Before the CAT scan, I did not know if the Lupron itself was suppressing the cancer enough to zero out the PSA. So, now I know that both drugs are working well together and the cancer is being both suppressed and thankfully reduced.
I also tire more easily now, but I think I am still recovering from my unsuccessful chemo drug. Plus I was inactive for a few months due to passing blood, wearing a catheter, etc. I am 70 years old so it takes a while to get back in shape. I also experience the hot flashes but it's not a big deal to me compared to what I have been through. Take care and keep us informed.
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@Holden8285
Glad you're doing well. I don't go back to my oncologist until December but if my PSA is dropping this fast hopefully the cancer is shrinking as well. I do see my urologist in a little over a month so I'm guessing he can fill me in as well.
I am fortunate to not have the passing of blood and catheter for more than a week, but it's been a longer process than I was expecting. The oncologist told me he was going to treat this as chronic during the first visit so that tells me that it may not be curable, but treatable. I've read a lot about people receiving ongoing treatment without a complete cure, but I'd rather know it was gone completely.
I'm probably going to participate in Genetics Testing so I can see if my brothers or my son may have to worry about this as well.
Keep fighting and stay well.
Glad you're doing well. I don't go back to my oncologist until December but if my PSA is dropping this fast hopefully the cancer is shrinking as well. I do see my urologist in a little over a month so I'm guessing he can fill me in as well.
I am fortunate to not have the passing of blood and catheter for more than a week, but it's been a longer process than I was expecting. The oncologist told me he was going to treat this as chronic during the first visit so that tells me that it may not be curable, but treatable. I've read a lot about people receiving ongoing treatment without a complete cure, but I'd rather know it was gone completely.
I'm probably going to participate in Genetics Testing so I can see if my brothers or my son may have to worry about this as well.
Keep fighting and stay well.
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Please share more information about the genetics testing. My brother died From Prostate cancer, my wife’s dad had it and I had it.Have urged my son who is in his 40’s to have regular testing, but perhaps we should all pursue genetic testing. His wife’s father also had prostate surgery, so my grandson, I would imagine is at risk
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@Wetdrymee2
I received my Genetics Report and they did NOT find any particular gene known to cause prostate cancer, but they did find something else unexpectedly. A gene called SDHA, c.2T>C ( p.Met1? ), what ever the hell that means, has a mutation called Hereditary Paraganglioma-Pheochromocytoma Syndrome. That's basically two separate issues.
From what I can understand Paraganglioma is a tumor that can be found in the head or neck, as well as chest, abdomen, and pelvis. The Pheochromocytoma is a type of tumor that develops in the adrenal gland. Both are apparently low risk of developing into cancer, estimated at 10%. But lucky me, I have them both.
So again, nothing was found to be related to my Prostate Cancer that is hereditary, but I have a whole new set of issues which means more specialists and testing. One thing I should mention is that Medicare pays for the counciling and the test itself, so if you're on Medicare you might want to go throught it anyway. I'm only on Part A too.
I received my Genetics Report and they did NOT find any particular gene known to cause prostate cancer, but they did find something else unexpectedly. A gene called SDHA, c.2T>C ( p.Met1? ), what ever the hell that means, has a mutation called Hereditary Paraganglioma-Pheochromocytoma Syndrome. That's basically two separate issues.
From what I can understand Paraganglioma is a tumor that can be found in the head or neck, as well as chest, abdomen, and pelvis. The Pheochromocytoma is a type of tumor that develops in the adrenal gland. Both are apparently low risk of developing into cancer, estimated at 10%. But lucky me, I have them both.
So again, nothing was found to be related to my Prostate Cancer that is hereditary, but I have a whole new set of issues which means more specialists and testing. One thing I should mention is that Medicare pays for the counciling and the test itself, so if you're on Medicare you might want to go throught it anyway. I'm only on Part A too.
Archives1
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I forgot to mention too that with my hormone therapy and chemo, my PSA is down to .51. But so far they are telling mean this is incurable but treatable, and my urologist says to think of it like treating blood pressure. But the side effects fatigue, hot flashes, concentration problems, and testicle shrinkage. Not to mention these drugs are extremely expensive, the injection costs about $17,000 per shot ( every four months ) and the Chemo meds cost over $10,000/mo, based on the insurance claims I review online. I'm lucky I have good insurance right now but at some point I have to think the insurance company will tire of pay out those prices. My co-pay has been $0.00 with my plan.
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Hi
I’m 62 and was diagnosed with cancer earlier this year and had an open radical prostatectomy on October19th and the catheter removed two and a half weeks later.
I was expecting some incontinence as that was discussed as a side effect, and had read enough to know that this was an expectation, but was not prepared for total incontinence, except when lying down or sitting, which has continued now for almost 3 months post op.
Have been doing the Kegel exercises every day and walking every day. I think that I am experiencing a slight improvement in the mornings over the last week as the first pad will last 4 hours instead of 2 but past midday its full-on leakage. So total pad usage of 6 a day
I do find that I do not leak when sitting or sleeping other than stress incontinence if I forget to tighten the pelvic floor. But if I tighten and stand up, I don’t leak but as soon as I relax its a flood. Toilets are not always close enough at work.
I am due back to the Urologist at the end of Jan to find out hopefully what is going on. I have had a zero PSA result back so am very grateful for that, but this incontinence is very trying! I was getting quite depressed about it as it didn’t seemed to fit in with what was published, there is always mention of stress and or urge incontinence, I do have stress incontinence as expected but have never got an urge to go just a warm feeling as it leaks out, this never seems to get a mention in articles, though having just joined this forum I am reading about similar experiences which in some way is comforting as you begin to feel that your on your own, and the so called professionals I see just say that my condition is disappointing!(Yeah tell me about it!) Since there must be people out there with similar experiences, I would love to hear that it gets better, and if it doesn’t what then?
Thank you for reading,
A very damp Kiwi
I’m 62 and was diagnosed with cancer earlier this year and had an open radical prostatectomy on October19th and the catheter removed two and a half weeks later.
I was expecting some incontinence as that was discussed as a side effect, and had read enough to know that this was an expectation, but was not prepared for total incontinence, except when lying down or sitting, which has continued now for almost 3 months post op.
Have been doing the Kegel exercises every day and walking every day. I think that I am experiencing a slight improvement in the mornings over the last week as the first pad will last 4 hours instead of 2 but past midday its full-on leakage. So total pad usage of 6 a day
I do find that I do not leak when sitting or sleeping other than stress incontinence if I forget to tighten the pelvic floor. But if I tighten and stand up, I don’t leak but as soon as I relax its a flood. Toilets are not always close enough at work.
I am due back to the Urologist at the end of Jan to find out hopefully what is going on. I have had a zero PSA result back so am very grateful for that, but this incontinence is very trying! I was getting quite depressed about it as it didn’t seemed to fit in with what was published, there is always mention of stress and or urge incontinence, I do have stress incontinence as expected but have never got an urge to go just a warm feeling as it leaks out, this never seems to get a mention in articles, though having just joined this forum I am reading about similar experiences which in some way is comforting as you begin to feel that your on your own, and the so called professionals I see just say that my condition is disappointing!(Yeah tell me about it!) Since there must be people out there with similar experiences, I would love to hear that it gets better, and if it doesn’t what then?
Thank you for reading,
A very damp Kiwi
Archives1
Staff member
Firstly, congratulations on your PSA results.
We all had the surgery to get rid of the cancer so call that a big success.
I’m 2 1/2 months post op and having all the same issues as yourself.
Less pads than you ....but I think that is someone subjective based on fluid intake and activity.
What I’ve learned from the Forum and my own research is that recovery is different for all of us based on many factors.
Prior history, surgery results , age, health, etc.
Like you I am impatient to see even some minor improvement.
My surgeon told me I’m being too unrealistic and that it could take 5-6 months to get where I would like to be.
But again, we are all different and that was his projection for me.
Other than the prostate cancer I am a relatively healthy 69 year old male who is still physically active and not overweight.
I walk daily and hike at least twice a week.
But none of it seems to be making a difference at this point.
So I’m trying to be more patient and what helps me mentally is knowing that there are medical options if all else fails.
I will not remain in diapers and use pads for the rest of my life without exhausting all remedies.
Bottom line. You are not alone! Hang in there.
We all had the surgery to get rid of the cancer so call that a big success.
I’m 2 1/2 months post op and having all the same issues as yourself.
Less pads than you ....but I think that is someone subjective based on fluid intake and activity.
What I’ve learned from the Forum and my own research is that recovery is different for all of us based on many factors.
Prior history, surgery results , age, health, etc.
Like you I am impatient to see even some minor improvement.
My surgeon told me I’m being too unrealistic and that it could take 5-6 months to get where I would like to be.
But again, we are all different and that was his projection for me.
Other than the prostate cancer I am a relatively healthy 69 year old male who is still physically active and not overweight.
I walk daily and hike at least twice a week.
But none of it seems to be making a difference at this point.
So I’m trying to be more patient and what helps me mentally is knowing that there are medical options if all else fails.
I will not remain in diapers and use pads for the rest of my life without exhausting all remedies.
Bottom line. You are not alone! Hang in there.
Archives1
Staff member
I had laparoscopic total prostectomy a little over a year now. Still have stress incontinence when lifting things (naturally) but also getting up from sitting and twisting and turning throughout the day. Now obviously amount of leakage is related to amount and kind of liquids one drinks throuhout the day. I am a big coffee and water drinker so there is that.
My question, when one says "I use 4 pads a day" for instance; is that leaving and wearing pads wet for many hours until pad is wet beyond ability to soak up any leakage.????
I admit I am very OCD about not having damp/wet pads so i change often and almost at every opportunity. I would say over a 24 hour period I go thru an average of 8 pads from slightly soiled to somewhat soiled to very soiled. Whikle sleeping I wear DEPENDS just in case and wake up dry.
So.....do i have a problem??
My doctor advises to wait until 2 years post surgery to addressmy concerns and not much help with incontience counseling. His attitude, I saved your life, what more do you expect from me???
Anyone on this forum have surgery for stress incontinenece?
Or, take meds for stress incontinenece.
Appreciate this forum...for unlike other cancers ( Breast Cancer for instance) . Prostate cancer suffers are basically "still in the closet"....we suffer in silence.
Thank you in advance
My question, when one says "I use 4 pads a day" for instance; is that leaving and wearing pads wet for many hours until pad is wet beyond ability to soak up any leakage.????
I admit I am very OCD about not having damp/wet pads so i change often and almost at every opportunity. I would say over a 24 hour period I go thru an average of 8 pads from slightly soiled to somewhat soiled to very soiled. Whikle sleeping I wear DEPENDS just in case and wake up dry.
So.....do i have a problem??
My doctor advises to wait until 2 years post surgery to addressmy concerns and not much help with incontience counseling. His attitude, I saved your life, what more do you expect from me???
Anyone on this forum have surgery for stress incontinenece?
Or, take meds for stress incontinenece.
Appreciate this forum...for unlike other cancers ( Breast Cancer for instance) . Prostate cancer suffers are basically "still in the closet"....we suffer in silence.
Thank you in advance
Archives1
Staff member
So I’m 7 months post radical prostatectomy. PSA levels have been perfect and feeling well with no other treatments required for now and I am thankful. But the leakage! Ugh! I think it’s getting better but not really sure, I’m using 4 pads a day but usually they’re not soaked. I don’t leak at all at night and do ok in the mornings but come the afternoon I can leak even while just sitting. I’m doing two sets to kegals 20 sec 15 times. I walk 2.5 miles 5 days a week and ride my bike at least 3 times a week for 8-10 miles at a time. Walking is worse than biking leakwise.
I started weighing my pads and the numbers are all over the place but leaking between 3oz - 7oz a day.
I’m 59 and still waiting for the day when pads are a thing of the past.
Can anyone relate and are there guys out there who took more than a year to see results/dryness?
Thanks!
I started weighing my pads and the numbers are all over the place but leaking between 3oz - 7oz a day.
I’m 59 and still waiting for the day when pads are a thing of the past.
Can anyone relate and are there guys out there who took more than a year to see results/dryness?
Thanks!
Archives1
Staff member
If you go back to when this post was originally posted, you will see all kinds of examples of how others have managed with post prostatectomy side effects. Some guys heal quickly, while others take longer. In my case, after nearly 4 yrs since my surgery I still am incontinent to the point that I wear diapers 24/7. There are days that are better where I think I have made some progress, and then I'll have a number of set backs. So, what I guess I am saying is to be positive. Improvements can happen in the long term. If not, having to adjust to the adjustments needed to carry on with your life can be done. In my case, with bladder control problems prior to my surgery the need to wear diapers was already a part of the equation. I am 73 yrs. old, and have had to adjust to numerous obstacles along the way. Although not an easy acceptance, needing to wear a different type of underwear is no big deal. Good luck in your recovery.
Archives1
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It is a year since my surgery. Everyone is different. Hang I. There and do t give up. My recovery was inchworm slow, but I now am mostly dry during the day and wear a thin pad at night. Mostly the pads are dry or might have a tablespoon of urine in it. Coughing, lifting or running sometimes puts stress on it and I’ll leak a bit more.
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@julianth Welcome to the forum. I am glad to hear that you have been reading previous posts.
My prostatectomy was Sept 24, 2020 (today is Jan 14, 2021). I am almost 56.
I have not been dry one night since my prostate removal surgery.
I too have the constant dribble while standing or walking. I too am having an emotional rollercoaster of recovery.
Patience and time - time being 2 to 52 weeks or more. I have gleaned from people's posts that 12, 16, 20, 26 weeks have been key points.
I stated pelvic floor physical therapy on Tuesday Jan 12, 2021. It seems that I was doing my kegels wrong.
My prostatectomy was Sept 24, 2020 (today is Jan 14, 2021). I am almost 56.
I have not been dry one night since my prostate removal surgery.
I too have the constant dribble while standing or walking. I too am having an emotional rollercoaster of recovery.
Patience and time - time being 2 to 52 weeks or more. I have gleaned from people's posts that 12, 16, 20, 26 weeks have been key points.
I stated pelvic floor physical therapy on Tuesday Jan 12, 2021. It seems that I was doing my kegels wrong.
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thudson1965
I would love to hear what they have you doing differently for the kegel excercises.
Every time I do them I am wondering if they are a waste of time?
So many posts are from men saying they are doing them but it’s still taking a long time to see progress.
Does working on other core muscles help?
Planks, Pilates, etc.
I’m hoping the walking and hiking helps as well.
Keep us posted please.
I would love to hear what they have you doing differently for the kegel excercises.
Every time I do them I am wondering if they are a waste of time?
So many posts are from men saying they are doing them but it’s still taking a long time to see progress.
Does working on other core muscles help?
Planks, Pilates, etc.
I’m hoping the walking and hiking helps as well.
Keep us posted please.
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Staff member
@Dwb They are having me work on my anus. Squeezing it. They have a small plug (covered by a condemn) that measures the squeeze and duration. Next the use a tens unit plug to electrically stimulate the pelvic floor. I was squeezing more the base of the penis instead of the anus. My physical therapist reduced me to 3 session of 10 cycles of 5 seconds hold and 5 seconds relax. I have been using a gloved finger to help me tell that I am squeezing and to keep from releasing too soon.
I has my second session on Tuesday January 19, 2021, I had a small increase. The first session was longer because of the intake of asking what and how I was doing and what was or was not happening. The follow up sessions are 30 minutes with my pants and pullup removed (I am using the Lunderg Penile Clamp otherwise I would be dripping all of the time) with me draped in paper sheets.
Check with your urologist before doing most exercises especially during weeks 6 to 13. Slow walking seems to be okay for weeks 2 to 6. I started back walking at week 2 for 15 minutes for half a mile. Over the next several weeks I increased time and distance then speed. There were several days that my lower abdomen reminded me that I had major surgery by hurting.
Exercise helps, but kegels are needed but not too many or for too long.
I has my second session on Tuesday January 19, 2021, I had a small increase. The first session was longer because of the intake of asking what and how I was doing and what was or was not happening. The follow up sessions are 30 minutes with my pants and pullup removed (I am using the Lunderg Penile Clamp otherwise I would be dripping all of the time) with me draped in paper sheets.
Check with your urologist before doing most exercises especially during weeks 6 to 13. Slow walking seems to be okay for weeks 2 to 6. I started back walking at week 2 for 15 minutes for half a mile. Over the next several weeks I increased time and distance then speed. There were several days that my lower abdomen reminded me that I had major surgery by hurting.
Exercise helps, but kegels are needed but not too many or for too long.
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@MrCatman Welcome to the group.
I searched for Chemo using the search magnifying glass to upper left of the feed.
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After reviewing the below results, you may want to start a new post with a title like "Chemo and Prostate Surgery (Prostatectomy)".
I searched for Chemo using the search magnifying glass to upper left of the feed.
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