Twelve Weeks after Da Vinci Prostatectomy

Posted on May 23, 2011 by admin

Well, it has been twelve weeks now since the Da Vinci Prostatectomy.  Talk about a night and day difference between 4, 8 and 12 weeks.  That should be expected.

If you are going through this, 12 weeks will certainly be a big step.  4 weeks was good, 8 weeks was better and 12 weeks is even better.

The big scar that was still hurting nearly three weeks ago has stabilized.  It is still uncomfortable if I lean against a counter or something else against it, and it still painful when I do.  It has been pretty stable, but I imagine over the next few months it will improve. I think it is just because it is in the spot right above the belly button compared to the rest that it is still painful.

My advice is to keep doing the Kegel exercises it will help most people eventually, but it is like exercising your biceps, you have to keep it up to keep your biceps strong.  It is awfully tempting to just stop when continence is nearly all there, but the last few percent means, keep doing the Kegels – and they say it is like other exercise, keeping it up, keeps up your strength there.

I still have another 7+ weeks until I go back to Mayo for follow-ups, but given that I did a blood check myself with the ultra-sensitive PSA, I am hopeful that they will be positive on the prognosis front too.

It will be 3 months since the Da Vince prostate surgery in just a bit less than a week – 12 weeks/3 months, pretty close, but hopefully even that extra few days will make a difference.

Some of the surgeons will say 8 weeks is a good milestone, but after talking to others who have actually been through it, they say 12 to 18 months to fully recover.  It is worse when the PAs say, “oh, 8 weeks”.  I spoke with a Doctor over the weekend and he said to give yourself a year to feel nearly 100%.  Sure, by 8 weeks and 12 weeks you feel much better than at any time before and you may feel 80%-90% of they way you did, but almost universally men have said they tire easier and that full healing takes a lot more time than 8-12 weeks from Da Vinci prostatectomy.  I can only imagine that the “open prostatectomy” takes even more time to recover given the additional trauma to the body.

The big things for me at 12 weeks are:

1. Pathology – as said, was good as was my own ultra-sensitive PSA.  It is a relief, but not enough.  Mayo says it takes 9-12 months after a prostate cancer diagnosis (or other cancer no doubt) to mentally adjust to the new reality.  It is a large adjustment to go through.  When ads come on the radio for cancer treatments, I have to change the station because I don’t want to be constantly reminded since there is nothing else one can do.  The oncology department indicated that a large portion of the adjustment for anything like that is neither quick nor simple and those who say otherwise are misinformed.

2. ED after Da Vinci prostatectomy isn’t perfect, but is acceptable so far with the Viagra regularly in order to help healing.  Going from never having taken it, to taking it now on their direction is an adjustment.  Healing takes time is the continual mantra.

3. Continence is 98% (difficult to quantify), but you still get the occasional drip upon occasion which is again just a time thing – supposedly.  It is usually so-called “stress incontinence” when the bladder is full and you cough/sneeze/run or something.  Thankfully it is not major like some people experience. It is still an issue and something that isn’t really a topic of conversation among friends.

4. Tiredness for me is still an issue 12 weeks after the Da Vinci robotic prostate surgery.  It is probably the biggest one for me at 12 weeks.  By evening I’m usually pretty tired.  I have been working out in the morning, working during the day, but by the end of the day, it still takes a lot out of you.  Like #3, it is more of a frustration factor where you go from it not being an issue to needing a nap at 5pm or something similar.  The tiredness is just another reminder and consequently is frustrating to deal with.

Every week has been an improvement.  There are the frequent reminders of how things have changed though.  Stupid things like the radio ads I mentioned before.  Tiredness.  Frustration. Talking to people who have been through it describe it at first as a constant blaring radio which by 5 or 6 years has been reduced to just some background level.

 

Posted in Da Vinci, Prostate cancer surgery, Prostate Cancer surgery recovery | 1 Comment

Da Vinci Robot Prostatectomy scars

Posted on May 5, 2011 by admin

One thing I do notice is that the middle scar (above the belly button on me) which is the largest is the only one that hurts.  The rest are smaller, but the middle one if I lean against the counter which is right at that level, it is painful.  Just healing I know, but it is amazing that I can push quite hard on the others without any pain, but the middle one is still tender.  I suppose it is due to the fact that is it larger and its position.

 

Posted in Prostate cancer surgery, Prostate Cancer surgery recovery, Radical Prostatectomy | Leave a comment

Nine Weeks after Da Vinci Robotic Prostate surgery

Posted on May 2, 2011 by admin

Well, it has been nine (9) weeks after Da Vinci Robotic prostate surgery.  There isn’t much new this week as compared to eight weeks, but I did write a little about something odd that I noticed after surgery – a change in tastes of food after surgery.  Kind of a strange thing.

Anyway, physically I do notice that each week improves in terms of not being as tired.  It is a slow process, but definitely on an upward trend.  No pain, although they said to avoid biking for quite a while, and I haven’t stretched a lot, but doing well pain-wise.

I’ll talk about mentally going through it at some point.  That should be applicable to anyone with a cancer diagnosis.

 

Posted in Prostate Cancer surgery recovery, Radical Prostatectomy | Leave a comment

Tastes Change after Surgery?

Posted on May 2, 2011 by admin

One thing I have noticed is my food tastes changed since surgery.  I used to enjoy peanut butter and jelly sandwiches for lunch fairly often, many, many days.  Since surgery, the thought of a PB&J sandwich just turns my stomach.  One brand of peanut butter tastes good, but most do not.  And the combination of jelly, peanut butter, and bread just makes me sick.  I mentioned it to a friend of mine and she had different surgery (obviously) but she noticed also that some of her tastes in food changed too.

Kind of a strange thing to have your taste in food change after prostate surgery.  (And it is too bad too because I used to really like PB&Js!)

Anyway else notice this after surgery?

What was the cause?  The surgery itself?  Prostatectomy?  The PCa?  Some combination?  I’m going to ask and see if the Doctors have any ideas.

 

Posted in Changed tastes, Prostate Cancer surgery recovery, Radical Prostatectomy | 1 Comment

PSA anxiety

Posted on April 25, 2011 by admin

One subject that often comes up in the discussion for PSA testing and after Da Vinci surgery (or any other treatment) is so-called “PSA Anxiety.”  PSA anxiety refers the anxiety related to waiting for PSA results after surgery or after having an elevated PSA test and then the stress while waiting until further tests confirm BPA or prostatitis or anything else.

Some professional organizations have advocated avoiding PSA test for men due to PSA anxiety.  Let’s weigh the options:  possible cancer that can be caught and treated versus anxiety.

Seems like an easy decision.

Posted in Prostate and PSA, Radical Prostatectomy | Leave a comment

8 Weeks after Da Vinci Robotic Prostate surgery

Posted on April 25, 2011 by admin

Not much to report in the last week.  I still tire easier than pre-surgery, but each week brings improvement and it varies day by day.  Mayo said not to donate blood for 1-2 years (!) because it can take 12-24 months for complete healing.  Wow.  Everything is definitely getting better each day and week.  Continence is doing essentially 99% – I am quite happy with it so far.  Even stress incontinence is extremely rare.  Likewise with the recommended Viagra rehab to prevent ED, that is going well too.  Quite happy with those results too so far.  It has been 100 mg Viagra per day to increase highly oxygenated blood flow.  They did say that 50 mg every other day can be used also.  Based on the studies I saw they were 50 mg or 100 mg every day, but perhaps Mayo has other information showing every other day is as effective.  My Mayo doctor did say that taking them daily was fine too and wouldn’t hurt, and could help.

Apparently you can still have some internal clots shedding even 7 to 8 weeks after Da Vinci surgery.  I hadn’t had any in a while, but had two that I saw last week, maybe 4mm to 5mm in size.

One thing I did remember and think about last week was that if you have any burning while urinating after the catheter comes out, it gradually decreased for me over a few weeks and now it is usually un-noticable.  The burning is usually due to the healing where they re-stitched everything back together internally which can take 6-8 or more weeks to heal.  It will heal though.  I had assumed that was the cause back at week 1-4 after Da Vinci Prostate surgery, but it does heal gradually.  It is easy to become impatient.  Shoot, I was getting impatient when in reality I had absolutely no reason to be so given the relative speed of recovery.  If you or a loved one are going through this, remember to attempt to avoid impatience – I had trouble not getting frustrated and impatient at times, but if you can, just remember that each week will be better and better.

All in all, the Da Vinci surgery is no walk in the park, but certainly after just a few hours short of 8 weeks from Da Vinci surgery I am feeling quite well.  Everyone will react differently, depending on health, age etc. though, so whatever your recovery path is, just remember that healing takes time.

Ideally no one would have to go through this, but alas some of us do.

Posted in Prostate cancer surgery, Prostate Cancer surgery recovery, Radical Prostatectomy | Leave a comment

Seven weeks after Da Vinci Robot surgery

Posted on April 18, 2011 by admin

As I have said before, everyone is different, some people will be ahead of this, some behind.  I’ve read where people have no problem with continence, and others where people have terrible times.  I think based on what Mayo says I’m ahead of the curve, but it is still just a matter of dealing with the day to day issues which are no fun.

It has been seven weeks [it will be seven plus one day before I post since I want to re-read it in the morning] but the good news is sleeping through the night, roughly 11 to 6 without having to get up to use the restroom.  At first it had been every hour or two which over the past 5 weeks had tapered off to 1 or 2 times per night from around weeks 5-6.  But during roughly the last week it has been consistently no need to get up throughout the night.  That is a big positive since I think it means sleeping better and continued healing.  Always remind yourself, time will help.

This weekend and Monday were a few “down” days.  I think I over-did it working out, doing yard work, and on Friday night staying out too late (1 AM) with friends.  It seemed like a good idea at the time given how good I’d been feeling to stay out just a little longer, but in retrospect I should have taken it easier.  Between the three, I didn’t fell very good all weekend, particularly Sunday and then a little better on Monday.  [Tuesday morning, feeling pretty good now, but a little hazy on the weekend and Monday].

I think that the recovery is like other types – in general an upward trend, but with some days better than others.  You get to the point where you are feeling good for 4-5 days, and then you have a few where you feel less good, and by comparison it feels even worse.  I took some of the Xanax this weekend from the prescription I have and that helped some, but it definitely makes it easy to be “fuzzy” on events.  That is the only thing I don’t like about it, it makes it easy to forget, and easier to over do things because you aren’t thinking as clearly as normal.  However, when you are worried or stressed, the tradeoff is worth it. I hadn’t taken it much at all since the pathology results – just a few times during the middle of the night when I woke up and couldn’t go back to sleep.  Maybe once or twice a week for about 4-5 weeks.

Sunday morning I felt good, and so went and worked out and stretched.  I think I was over doing it significantly there too because after not feeling well Saturday, Sunday really early morning seemed like a gift.  When I got home I did some yard work and planting, all before about 8AM. Of course, it resulted in pain later which I hadn’t felt for weeks.  That was disconcerting mentally and quite uncomfortable which resulted in Sunday being a lost day because I had to take some medicine for it.  So, I’m taking the stretching, lifting and cardio slower when I decide to work out this week. [Tuesday morning, as above, seems back like I was last week and Friday morning, so I think it was just a Saturday, Sunday, Monday pushing-too-hard, and taking medicine thing.  Hopefully I won't need anything at all this week.]

The Doctors in oncology and surgery (and the GP) at Mayo all said similar things – with large events like prostate cancer and surgery it generally takes the mind 9-12 months to accept and adjust to the “new reality” so it is common to have times of worry and times of normalcy.  Their advice is to keep doing the diaphragm breathing, take something like Lexapro if needed etc.  Xanax if needed, although to avoid it if possible.  The mental and physical adjustments are both important to healing and they believe in helping with both.

So, another week down, on the path to recovery.

Posted in Prostate Cancer Stress, Prostate Cancer surgery recovery, Prostate treatments, Radical Prostatectomy | Leave a comment

Ultrasensitive PSA tests and prediction of prostate cancer surgery success

Posted on April 12, 2011 by admin

Now, back to the ultrasensitive PSA and not wanting to wait 3 more months.  I’ve done a lot of reading – more than a dozen books, a lot of studies, and been to a conference – on prostate cancer.  All since January 2011.  For me, knowledge is power, or at least the illusion of control.  Illusion being the operative word, perhaps.

Either way, I’m not one to sit back and wait, I like to be proactive.  This article on ultrasensitive PSAs (at NYUMC.org) is about a study using ultrasensitive PSA to predict the risk of early biochemical relapse – which means that it could be returning.  In short, the lower the ultrasensitive PSA at the nadir (lowest point) after radical prostatectomy, the better.  Now the patients in this study were from the time period January 1997 to December 2000 so treatments are BETTER now and detection is better.  Relapse statistics should be lower across all the groups now, but the relative numbers will likely still hold so I wanted to know the ultrasensistive PSA numbers and to track them.

That said, the results from that study say: “At a mean followup of 3.1 years 54 of 545 men (9.9%) [remember this was from 1997-2000 so this percentage would likely be lower now] experienced biochemical relapse with a mean time to relapse of 25.2 months [PSAs were rising above a certain level]. Relapse rates in men with a PSA nadir of less than 0.01 (423 [men in that group]), 0.01 (75), 0.02 (19) and 0.04 or greater ng/ml (28) were 4%, 12%, 16% and 89%, respectively. Men with a nadir of less than 0.01 ng/ml had a significantly lower relapse rate than men with a nadir of 0.01 (p 0.01), 0.02 (p 0.025) or 0.04 or greater ng/ml (p 0.01).”  In other words, the lower the lowest point of the PSA, the lower the chance of biochemical relapse.  So, it seems important to know the value.  And for me, I’d rather know sooner versus later.

So, I’d done some reading about following the PSA post-surgery and many Doctors recommend doing so somewhere around 3 months after surgery.  Given the half-life of PSA in the body is between 2.5 and 3.5 days, I realized that at about 5 and a half weeks, I would have had at least around 10 “half-lives” pass if the half-life in my body was 3.5 days.  If it had been in the 2.5 day range, the number of “half-lives” that had passed would have been higher, around 15.  So at 5.5 weeks, the PSA should be at most 1/2048th of the maximum value on the day of the surgery.  Pre-surgery it had been 3.3 which would have put it at 3.3/2048 which would have put it at 0.001.  Of course, if the prostate had been squeezed like a lemon in a juicer or for some reason had released excess PSA during surgery, it could have been higher.  But even IF the PSA had been 33.3 because of all the surgical trauma, it should have been down to at least 0.01 based on the low value of PSA half-lives.

Not being one to wait and wait, particularly until July, I went to LabsMD.com (there are other similar sites) and did a search for PSA and ordered the ultrasensitive PSA.  I picked one of the close LabCorp offices and went over and had them take the blood.  The next morning by 9:45AM east coast time I had the results and they showed “<0.01″ which is the lowest value you can have on the LabCorp tests.  Another good result and big relief.  Stress from PSA values is what they call PSA anxiety, and everyone can see why.

By the way, I had ordered a PSA test (free PSA and regular PSA) from them after I got the first elevated test back in December because Mayo did not track the free PSA.  The regular PSA had tracked the Mayo number and the free PSA had shown a higher probability of PCa.

This was a great relief and I didn’t have to wait until July.  The test was a few dollars under $90, but was well worth it for the peace of mind and, most importantly, it will allow me to track it whenever I want.  The thing I had to remember was that having the test 5.5 weeks after surgery could have been a bit soon so, if it had been at all elevated, there would have been a reason.  From what I’ve read they usually wait at least 6-8 weeks after surgery and often 12.

For me, being proactive and doing it earlier than they were doing gives another data point and luckily peace of mind.  It also gives a long-term data trail so that over years or decades you can have a lot of information instead of just something like “less than 0.1″.

By the way, I considered doing one the day after I got home from the hospital in order to see what the number was just days after surgery and see what it should be coming down from.  I couldn’t work up the energy to do so at the time, so did not do so.  Now, I wish I had just for the knowledge.

[Update:

Here are a few links dealing with the ultra-sensitive PSA test and why it is important after having treatment:

http://www.prostatecancertopics.com/topic001.pdf

http://www.prostate-cancer.org/education/preclin/McDermed_Using_PSA_Intelligently2.html

]

Posted in Prostate and PSA, Prostate Cancer surgery recovery, Radical Prostatectomy | 4 Comments

Six weeks after prostatectomy

Posted on April 11, 2011 by admin

I believe that your number one priority for choosing the appropriate options for prostate cancer treatment is to maximize your life.  Beat the cancer.  No one dies of ED, scars, or incontinence.  People can die from prostate cancer.  Yes, ED, incontinence, or scars may be an issue, particularly incontinence or ED, but at least you’ll be around to get treatment for them.

I’m now 6 weeks after the Da Vince radical prostatectomy and I’ll give an update.  Mayo isn’t going to follow-up until July.  So, I have roughly another 3 months until they follow up.  Normally they say they want to see you 3 months post-surgery, but either they miscounted or are doing something else here.  [See the next post for a bit about not waiting for 4 months. I had started to include it here, but ran out of time so wanted to post this alone.]

Mayo had said to avoid lifting anything more than eight pounds for 6 weeks and do walking as exercise.  So I was allowed to begin lifting and doing a more strenuous workout again after 6 weeks.  I cheated and lifted weights and worked out a day early on Sunday and am quite sore today, but am extremely pleased about being sore.  I don’t think Mayo would mind since I was feeling pretty good beforehand and did ease myself into the weights.  Between weights and the elliptical trainer, it was a good workout and a nice stress relief.  For me, the workout was a welcome thing.

Sneezing, coughing or other “stress incontinence” events are about the main issue now, which I am really pleased with.  Confidence is not back yet, but it is improving and the Kegel exercises are helping I presume.  It could just be time healing, but between Kegels and time, I am improving whatever the cause.  The important point for incontinence is to get back to not worrying about laughing to hard or sneezing at the wrong time which just takes time to recover.  For me, the ED was 3rd on the list.

The ED recovery is going pretty well.  With Viagra 100 mg everything is good.  Without, maybe 60-65% which is still quite good according to Mayo.  There is an article from 2008 in the New York Times that deals with some of the issues – whatever your case is, don’t give up, even 24-36 MONTHS later you are still healing.  As the article says, “the definition [in the studies] is misleading” so don’t stress.  Don’t worry how you compare to anyone else in the studies or in the statistics.  You’ll be on your own schedule, sometimes ahead of the numbers, sometimes behind.  DO TALK to your doctor if you have concerns.  And do get a second opinion if you want.  My Doctor at Mayo after spending an hour discussing the options and explaining why they thought surgery was right (he is a surgeon) said he’d be happy to send me over to Radiology then to talk with them and see what they said.  He was 100% confident in my case they’d say the same thing.  I had done a fair amount of reading prior to that and knew it was the right thing for me, but I can’t imagine any Doctor not supporting a second opinion – and this goes for ED or incontinence or any other issue.  I think 99.99999% of Doctors will do their best, but be an advocate for you (or get your spouse, girlfriend, family member etc to do so).

Anyway, as far as my 6 week update goes, I’m is slightly less than 5 weeks after catheter removal and exactly 6 weeks after surgery.  Given the reports, I’m fine with everything so far.  Obviously everyone wants to be completely 100% in everything with 72 hours of surgery, but it doesn’t happen.  Time works wonders and no matter how long it has been, don’t give up hope on any of it.  Talk to someone or your Doctor if needed.

I’m putting the ultrasensitive PSA test information in a different post since I’m out of time right now and I’ll update this line to link to it when I finish, hopefully in the next day or two.

Posted in Prostate and PSA, Prostate Cancer surgery recovery, Prostate treatments, Radical Prostatectomy | Leave a comment

Five weeks after Da Vinci Radical Prostatectomy

Posted on April 4, 2011 by admin

Well, it is five weeks after Da Vinci Radical Prostatectomy.  They did bilateral nerve sparing, clear margins etc.  Just a quick update on the 5 week after surgery mark.  The next milestone will be the PSA recheck, sometime in the next 5-7 weeks.  ”Undetectable” is the goal.  Everything else is secondary.  Anyway, the update so far:

1. Still get tired easier than before, usually afternoon and earlier in the evening I’m tired.  They said this was common since it is major surgery and takes time to get back 100%.  I did manage to plant some plants this weekend – all under 10 pounds.  Plus put some fertilizer around some plants.  The doctors really do mean it when they say “don’t lift anything more than 10 pounds for the first 6 weeks” and then to easy back into it thereafter.  Sitting on hard surfaces is the main remaining discomfort.  Not really pain, just not comfortable.  I am sure if I went and did sit-ups or lifted heavy weights I would be in pain.  Likewise, I think that sitting too long will result in some abdominal swelling and discomfort.  I did sit up for about 2 hours straight Saturday night and could feel some starting.  Walking or standing helps it immediately.

2. Looking forward to a week from today when it is six weeks since the Da Vinci Radical Prostateectomy and can begin working out again.  Although they said to work your way into it, not just jump back in to full weights.  Either way, it will be a nice thing to be doing!

3. Continence has been going pretty well with only minor issues since the catheter was removed.  The big issue seems to me to be more of one of confidence.  Usually when I’m vertical and sitting are good.  Ditto lying down on the couch.  The main issues in weeks two through 4 were changing from lying down to standing with some dripping occurring.  Sometimes from sitting to standing too.  It still occurs even at 5 weeks upon occasion.

Ditto for coughing, laughing or sneezing.  The coughing, laughing, sneezing are tapering off and the main issue is the occasional time of not waking up at night plus the occasional change of position.  So, not 100%, but definitely on the road to recovery.  Each week has been getting better and the need to use the restroom as often.  At first it was every 30 minutes, but now I can go 3-4 hours if needed, of course if I drink 5 or 6 glasses water, that changes the equation.  Now 2 hours isn’t uncommon.  The first two weeks though, it was 20-30 minutes having to go with that increasing gradually even while drinking a lot of fluids.  Apparently this is normal too due to the trauma, potential scarring, and the catheter giving the bladder a break from any stretching for 7-8 days.  Not to mention the stitching of everything back together there.

The main issue for me has been while sleeping.  Three times in nearly four weeks I haven’t awakened in time.  The protection has worked at night.  I don’t know if that is typical or what, but will ask next time I go in.  Hopefully it will have resolved by then.  I know it is better than absolutely no control, and doesn’t happen often, so if you are having the issue, you are not alone.  Hopefully it will resolve quickly.  Definitely improving.

4. Kegel exercises are important.  Standing and lying down are the easiest for me.  Sitting has been the most difficult for some reason. It just seems harder to isolate when sitting.  Perhaps because in both the vertical and horizontal position the muscles are in the same relative to each other whereas sitting they are not.  What I’ve done is stand, tighten, and then sit in order to help.  Anyone else see that?

5. E.D. hasn’t been much of an issue.  100mg Viagra makes things pretty much (80%) as they were pre-surgery and has done so since shortly after the catheter came out.  Without the Viagra, it is around 60% there.

6. I stopped the Lexapro a bit over a week ago after about 5 weeks taking it.  My stress level dropped significantly after getting the pathology results back nearly 4 weeks ago and so I didn’t think I needed it.  Right now, I think I’m doing fine without the Lexapro.  If needed, I’ll start taking it again, but hopefully the PSA levels will be fine and so I won’t need to do so.

All in all, I am pleased with the progress so far.  It is not an easy thing to go through, but it does not have to be the end of the world.  As I said other times, the most important thing is good pathology and surgical results – orders of magnitude more important than anything else.  Then continence, then ED, finally bringing up the back is scarring.  So far though, the results have been satisfactory, and we hope they continue to be.

So, get your PSA checked at 30 and at least every 5 years until 40, then as often as your doctor will do it, probably annually unless they need to do so more frequently.

Posted in Da Vinci, Prostate Cancer surgery recovery, Radical Prostatectomy | 3 Comments