Frequency of Kegel exercises and interpretation of path results

ghdeaver

I had a laparoscopic prostatectomy on August 24 due to gleason 4+3 cancer detected during prostate biopsy. Very pleased with surgery and got positive path results (neg margins, no invasion of lymph nodes or seminal vesicles). Catheter removed Sept 1 and was completely dry first night (yeah). I leak whenever I walk and use 3-4 pads per day. I have been walking as well as performing Kegel exercises. No change in continence in last few days (I know it takes time). Reading online I see a wide variation in what is recommended by the medical profession as to how many exercises should be performed daily. I have seen everything from 30/day to 300/day. I don't want to overdo it but also not under exercise. I am interested in the experience of others.

Another question I have is in reading my path results the PIN was rated high grade and the gleason 4 cancer had a "distinctive vacuolated appearance" which was apparently discussed at the daily interdepartmental QA conference. I should have asked my surgeon about this ( and still can) but wondered it anyone had encountered similar interpretations and could tell me what it means

Kongo

Vacuolated Cells
GH,

Welcome to the forum and am glad your surgery went as smoothly as it did. While I can't comment on the appropriate frequency of kegel exercises, I have read about vacuolated cells in the prostate.

As I understand it, a vacuolated cell in the prostate is one where a part of the internal cell structure contains water in a membrane sac. In prostate cancer the formation of vacuolated cells can be associated with hormonal therapy and I was wondering if you took any hormone drugs prior to your surgery. The effect of vacuolated cells can cause the pathologist to sometimes misinterpret the factors that are used to assign a Gleason score, resulting in a higher Gleason rating that is warranted. That may be the reason the condition came up at your hospital's QA discussion.

So, a couple of questions for you: Did you take any hormone therapy drugs prior to surgery and did you have a second opinion on the biopsy that led to your surgery?

In any event, I would certainly go back to your surgeon and get a detailed explanation of what this means in your particular case and if it has any bearing at all on your long term recovery and prognosis, although I suspect that it wouldn't since, after all, your prostate has been successfully removed and you seem to be recovering nicely.

Best of luck to you in your recovery.

ghdeaver

Kongo said:

Vacuolated Cells
GH,

Welcome to the forum and am glad your surgery went as smoothly as it did. While I can't comment on the appropriate frequency of kegel exercises, I have read about vacuolated cells in the prostate.

As I understand it, a vacuolated cell in the prostate is one where a part of the internal cell structure contains water in a membrane sac. In prostate cancer the formation of vacuolated cells can be associated with hormonal therapy and I was wondering if you took any hormone drugs prior to your surgery. The effect of vacuolated cells can cause the pathologist to sometimes misinterpret the factors that are used to assign a Gleason score, resulting in a higher Gleason rating that is warranted. That may be the reason the condition came up at your hospital's QA discussion.

So, a couple of questions for you: Did you take any hormone therapy drugs prior to surgery and did you have a second opinion on the biopsy that led to your surgery?

In any event, I would certainly go back to your surgeon and get a detailed explanation of what this means in your particular case and if it has any bearing at all on your long term recovery and prognosis, although I suspect that it wouldn't since, after all, your prostate has been successfully removed and you seem to be recovering nicely.

Best of luck to you in your recovery.

vacuolated cells
Thanks for the welcome. It is nice to have a place where I know others are dealing with similar issues and I can ask questions that are not considered odd. Your reply provided me some very useful information.
I did not take hormonal therapy. Interestingly my initial biopsy results were a gleason 4+3. Subsequent reassessment by Johns Hopkins was a 3+3. The path from the surgery showed more extensive cancer with one area a 3+3 and one area a 4+3. I will followup with my surgeon at my 3 month appointment and see if he can shed any light on it.

ezra99

incontinence, kegel & PIN
I also had high grade prostatic intraepithelial neoplasia(PIN). I asked about it but was told it was just another good reason I had surgery. I'd be interested if you get any other comments on it. I think it was also noted in my biopsy report but I can't remember for certain and that is one of the few reports I never requested a copy of.

As far as incontinence my best answer is "chill out". Took me 3-4 months to actually get to pads as I used full diapers. I kept reading about people having only minor problems and really got bummed out. Regaining continence is variable from person to person. I was completely dry at 6 months but sure wished someone had told me at 6 weeks to relax. Kegel's did seem to help. I usually tried to get at least 6 reps of kegels per day. Started a month prior to surgery and still do them today. I can sneeze and laugh and lift heavy things without problems now and I didn't think that would ever happen.

I don't know anything about vacuolated appearance.

mrspjd

ghdeaver said:

vacuolated cells
Thanks for the welcome. It is nice to have a place where I know others are dealing with similar issues and I can ask questions that are not considered odd. Your reply provided me some very useful information.
I did not take hormonal therapy. Interestingly my initial biopsy results were a gleason 4+3. Subsequent reassessment by Johns Hopkins was a 3+3. The path from the surgery showed more extensive cancer with one area a 3+3 and one area a 4+3. I will followup with my surgeon at my 3 month appointment and see if he can shed any light on it.

PIN or PNI?
I have not heard of PIN that you refer to...wondering if it is PNI, which would be Peri-Neural Invasion? This would be a finding that the PCa has invaded the neural membranes around the prostate, with the likelihood that the PCa may have extended outside the prostate, perhaps to the seminal vesicles, prostate bed and/or nodes. But then you indicated your margins were clear/negative, so unlikely local extension. The reality is that, unfortunately, no testing or path lab microscope can detect microscopic PCa cells. When a significant rise in PSA above nader is seen after primary tx or RP or LRP, then it may be an indication of failure/recurrence, that the PCa is active. Adjuvant or salvage treatment options would then need to be evaluated and discussed with your doctor. Would be helpful to find out exactly what PIN indicates...Hopefully, you will learn soon and perhaps share the info here.

Skid Row Tom

Timing
My Johns Hopkins surgeon told me (and my local urologist confirmed this), that after one year, "what you see is what you get". In other words, it usually takes six months, but up to a year for incontinence and ED issues to resolve. But what's happening after one year's time is what you're stuck with. Hang in there.

lew_in_marietta

ezra99 said:

incontinence, kegel & PIN
I also had high grade prostatic intraepithelial neoplasia(PIN). I asked about it but was told it was just another good reason I had surgery. I'd be interested if you get any other comments on it. I think it was also noted in my biopsy report but I can't remember for certain and that is one of the few reports I never requested a copy of.

As far as incontinence my best answer is "chill out". Took me 3-4 months to actually get to pads as I used full diapers. I kept reading about people having only minor problems and really got bummed out. Regaining continence is variable from person to person. I was completely dry at 6 months but sure wished someone had told me at 6 weeks to relax. Kegel's did seem to help. I usually tried to get at least 6 reps of kegels per day. Started a month prior to surgery and still do them today. I can sneeze and laugh and lift heavy things without problems now and I didn't think that would ever happen.

I don't know anything about vacuolated appearance.

A friend on my tennis team
A friend on my tennis team had his surgery 1 month before me (mine was July 13) and didn't have a continence issue - he played tennis for our team yesterday. I'm jealous, but my situation is improving. My catheter has been out about 8 weeks and I'm down to 1-2 pads a day, with a full Depend at night as a precaution. I've had a couple of days lately with almost no leakage and my doctor says another 6 weeks to 3 months max in pads. It sounds like you're progressing about like I was; it will come before you know it.

As for how often to kegel, my doctor says 20 reps 3-4 times a day.

ghdeaver

lew_in_marietta said:

A friend on my tennis team
A friend on my tennis team had his surgery 1 month before me (mine was July 13) and didn't have a continence issue - he played tennis for our team yesterday. I'm jealous, but my situation is improving. My catheter has been out about 8 weeks and I'm down to 1-2 pads a day, with a full Depend at night as a precaution. I've had a couple of days lately with almost no leakage and my doctor says another 6 weeks to 3 months max in pads. It sounds like you're progressing about like I was; it will come before you know it.

As for how often to kegel, my doctor says 20 reps 3-4 times a day.

Thanks for the feedback. I
Thanks for the feedback. I have been getting feedback that the 50-80 reps per day is a good number as opposed to the 30/day I thought my surgeon told me. I'm trying to be patient but, as my wife would say, the word didnt exist in my vocabulary before now. I am noticing that mornings are better than afternoons/evenings. In the morning I only leak when I walk but evening i am leaking just standing up washing the dishes. I am assuming that is related to muscle fatigue but havent seen anyone confirm that.

JR1949

Skid Row Tom said:

Timing
My Johns Hopkins surgeon told me (and my local urologist confirmed this), that after one year, "what you see is what you get". In other words, it usually takes six months, but up to a year for incontinence and ED issues to resolve. But what's happening after one year's time is what you're stuck with. Hang in there.

Maybe I Am Lucky
Maybe I am one of the lucky ones, but 18 months later my incontinence is better. I was using Depends diaper with a Poise max absorbency pad and using average of 4-6 pads per day. Now I am wearing briefs with same Poise pad and using average 3-4 pads per day. I have been doing kegels more often which seems to help. I have seen some postings on this network of men who have gone long as 2-3 years before incontinence got better or they were completely dry.

My advice is hang in there to everybody who is struggling with the dreaded incontince monster. Prostate cancer is a lot worse than coronary heart bypass as far as side effects.
I had single heart bypass and after a few months of getting over the pain and getting my strength back I felt pretty good. But this prostate cancer has left me incontinent and with erectile dysfunction. Yes, I am grateful for my quantity of life which is important to me since I was 60 when I was diagnosed with the prostate cancer.

JR

shipjim

JR1949 said:

Maybe I Am Lucky
Maybe I am one of the lucky ones, but 18 months later my incontinence is better. I was using Depends diaper with a Poise max absorbency pad and using average of 4-6 pads per day. Now I am wearing briefs with same Poise pad and using average 3-4 pads per day. I have been doing kegels more often which seems to help. I have seen some postings on this network of men who have gone long as 2-3 years before incontinence got better or they were completely dry.

My advice is hang in there to everybody who is struggling with the dreaded incontince monster. Prostate cancer is a lot worse than coronary heart bypass as far as side effects.
I had single heart bypass and after a few months of getting over the pain and getting my strength back I felt pretty good. But this prostate cancer has left me incontinent and with erectile dysfunction. Yes, I am grateful for my quantity of life which is important to me since I was 60 when I was diagnosed with the prostate cancer.

JR

Pads
After 4+ yrs, I rarely use pads, when I do strenuous excercise, golf, etc or when I drink wine, beer doesn't seem to matter go figure.

Do kegels just before you stand up helps the leakage then. Still ED, still on the green side of the grass!! jj