The first week I was very happy.  Amazingly enough at the time.  Yes, the catheter was bad, but I was just so ecstatic about having the surgery done.

The second week was good too because the catheter was out.  Most of all though because the biopsy had been good.

The third week and then for a little while was a bit down from there.  I could see the leaps and bounds improvements in healing, continence, and stamina each week although I was still getting very tired easily.

For me, after the first month or two, the reality of it was kind of settling in.  Yes, there was lots of improvement, but even for 6-9 months after surgery I was still getting tired much easier than pre-surgery.  (I will say that at 11 months now, I get tired easier only rarely, I can workout quite hard, lift weights and more – it just took time).  But the big things were healing.  Continence hadn’t been an issue unless I did sit-ups, but still (and even now at 11 months), there are times when I feel like I really have to go which never happened in the past.  ED was slowly improving, but it seems really slow when you are living it.

Before the girlfriend came into the picture, I was thinking: if you don’t have a girlfriend (or boyfriend), how would a prospective one feel about how things have changed?  It is a common thing to feel damaged.  How would a prospective date feel about it?  Fortunately there are people out there who are great and very understanding.  When you don’t have proof in front of you though, it can be very depressing because you have to wonder whether or not there are such people.

A little later, the progress has slowed a lot because you’ve improved so much.  This just makes it seem like a long road is left to go.  It is easy to get bummed about how the progress is going and the fact that things have changed quite a lot.  There was a period of a few months in the 4-7 month range when I often wondered, is this as good as it will get. It does get better now with the perspective of being at 11 months post Da Vinci Robotic surgery.  But at the time, it is a big burden to carry because you just don’t know where things are headed.

By 8 months I was feeling pretty good physically, but ED without Viagra was still an issue.  Even with a supportive girlfriend, you have the questions about healing, how things work.  One can hope to have someone who will understand and be willing to accept when things aren’t working exactly perfectly.  Someone who will be there to help through the rough times and not give up.

One thing is that you can tend to “psych yourself out” with respect to ED.  I have done so – if you have an issue with ED, it just gets me upset and tense.  Those two are the worst things that you can do if you want to have success.  I know this intellectually.  But still when things should be working well and they don’t, I get tense and frustrated.  This of course makes it into a self-fulfilling prophecy.  I wish there was a way to say, “now that I know this, I won’t do it.”  No such luck yet.  I usually try to relax and find something else to occupy my attention for a bit – a TV show or something to get the frustration buried.  Sometimes it helps, sometimes not.  If anyone has any suggestions, I’d love to hear them.

At 11 months, the main change from 8 months was that my stamina is essentially like it was a year ago right before the biopsy that started the nightmare.  Not always, but 99% of the time physically I’m good.  ED is the main issue right now for me.

There is one weird thing which I meant to ask at Mayo that I forgot about early in the week – I got on a bike we were buying for some “Make-A-Wish” kids to get it out of the store and it was very uncomfortable even for a few seconds on it!  One Doctor had Mayo had said stay off bikes for a year or two (back in the Spring of 2011) but I hadn’t talked to the Urologist/Surgeon about it and wanted to ask.  I forgot though.  I’ll try a bike before my next appointment if I remember and ask.  Anyone notice that it is uncomfortable to ride?

Of course, there is the ever-present worry about whether or not the surgery was a success.  You can never know for sure even with an “undetectable” PSA.  And so there is always that little worry.  But it is fading a little bit.

All the best everyone out there….

1. For guys in their low to mid 40s (and probably other ages, he was just speaking to me so said my age group), healing for ED can continue for 3 or more years!  I had thought it was pretty much going to level off after 18 months or so. The more blood flow the better for healing.  That means “rehab” is critical!  Doctor’s orders!   For me, with the 100mg Viagra, there are never problems.  With the 50s, they almost always work.  With the 25s, it is 50/50.  With nothing, if I’m relaxed, sometimes it has been successful – maybe a dozen times in 3-4 months, so not anything to write home about, but they did say it should keep getting better for 3 years!  Still amazed.

2. The Doctors said once you have continence, you don’t lose it, which was actually something I had wondered about – whether you should keep worrying about losing it.  Glad that is a non-issue.  It apparently can keep improving too with time, so keep up the hope and talk to your doctor if you are still having issues.

3. They said to try Cialis along with the Viagra – NOT at the same time obviously.  But wanted to see how they compare.  Wonder if there will be differences.  I’m sure there will be some.

4. One thing I am curious about is whether it makes sense to do Viagra one month, with Cialis the next.  Since they are different drugs, I wonder if varying them will help things along.  Now that I’m thinking about it, I wish I asked.  If anyone has asked, I’d love to hear it.

5. They want to recheck the PSA in 10 months – it was undetectable today.

So, all in all, positive.

Hope you are doing well out there too – I’ve just been writing this as I go along because there were so many questions I had that didn’t seem to have a patient’s perspective on the answers.  If you have more to add, comments, things that were different for you, or just questions, feel free to post.  I know that everyone is different so no doubt there will be lots of different experiences.

The big things though are: find the best doctor you can, talk to her/him, find someone in your area who you can talk to (there are support groups online or locally usually), and ask questions.

Try to get your spouse, girlfriend, boyfriend, or significant other to be supportive of the Da Vinci prostatectomy.  There will be side-effects and if they are there for you, understanding and supportive of the impact it will have, it will make things a whole lot easier.  ”Rehab” has now turned into a joke here because, hey, if the Doctors at Mayo “order” lots of “rehab” and it is a medical issue, then by all means, girlfriends, boyfriends etc should be supportive!  (Alas it appears that insurance will not pay for “rehab” if you don’t have a significant other to help you out there).

And be proactive.

All the best.

I am seeking some feedback from my results.  I had a Radical prostate removal done [Oct 2011] and had a general PSA test done 6 weeks after surgery – the PSA was .17    On [January 2012]  I had a ultra sensitive PSA test done at the same lab.  the PSA result was .20        My doctor wants to wait 3 months and do another PSA.  I think he plans on doing both the ultra sensitive and the general psa tests.  With these numbers, should I be thinking that all the cancer cells were not gotten?  Please share your thoughts, I am anxious.  - someone wrote

My reply: I am not sure where you had it done, but I just wanted to make sure I read it right since the formatting was off. It was “0.17″ mid-November 2011 and then “0.20″ on Jan 18 (today), right?

I’m not a doctor, but those seem high. The gold standard according to my Dr. at Mayo in Florida is that it should be undetectable (“< 0.01″) on the ultra-sensitive test 3 months after surgery. And it should be going down if it is still elevated at 6 weeks since they half-life is around 3-4 days.

Have you thought about getting a second opinion? When I was going through it a year ago, I ran everything by a friend who is an oncologist where I am and he told me to definitely get the ultra-sensitive test and it should be “undetectable” too. He said if it was detectable (e.g. over 0.01) to come see him or someone else because he’d want to think about something else. Fortunately my is still < 0.01, but if (let’s hope not) it ever is, I’m calling him right away.

I think in theory there could be other explanations, but I’d want to know ASAP because suppose there was something in the prostate bed (e.g. where the prostate sat) they could treat it with radiation ASAP.  Did you get the pathology report? e.g. where the margins clear? confined to the prostate etc? Gleason score? Stage? There are lots of variables – how aggressive it was etc.  If it were me, I would find an oncologist (my friend is a radiation oncologist) who has dealt with it before and I’d want them to find out why it was still detectable.

I understand why you’d be anxious, I get anxious just waiting for a PSA result. I talked to a different Dr at Mayo who is in a different department who is in his 60s and went through the surgery. He says it has been 5-6 years, but he still gets very anxious while waiting for the PSA results, so it is normal.

All the best…no doctor should discourage you from seeking a second opinion.

First, watchful waiting is where you and your Doctor will detect an elevated PSA, probably do a biopsy which shows prostate cancer and then decide to wait and keep monitoring the level of PSA until it gets to a worrisome level.  Obviously if the biopsy comes back with an aggressive report “watchful waiting” is usually out.  Much depends on your age, DRE results, and biopsy results.  If you are 95 years old, watchful waiting  probably makes sense right now since the odds are that prostate cancer won’t be the thing to get you.  If you are 35 or 45 things are different.  Ditto if you are 55 or 65.

In my and most people’s understanding, at some point all cancers are contained.  They may start as one cell, grow into 2, eventually into 100 and so on.  Prostate cancers or other kinds, are at some point contained all in a small area.  The problem comes with metastasis, that is, when they spread from the contained area to somewhere else in your body.  At that point, cancer becomes much more difficult to treat because surgeons can’t just cut the cancer out and radiation oncologists can not just aim a beam of radiation at a particular area.  The Doctors may treat you with surgery and/or radiation when there is metastasis, but will also likely treat you with chemotherapy to try and eradicate it everywhere.

The problem is that no one knows when the metastasis occurs.  It could be any time that a cancerous cell slips out and survives elsewhere.  What everyone does know is that at some point on one day the cancer is confined and a day later it is not. There is just no way to know when.  Since you have no idea when that will occur, it is gambling that it will not be soon.  Consequently if you are in good health otherwise and have at least a ten year life expectancy, I do not believe in “watchful waiting.”  The day that the cancer “slips out” could be next week or next month.  Or it could be five years.  Whenever that happens, things become much more difficult for you and your Doctors.  Since there is no way to know, it is playing the odds that it will be in years, not months.  Admittedly, the odds of metastasis are lower the earlier the detection is, but do you really want to gamble with time?

Similarly, the larger the tumor, the larger the chance that a cell could slip out and while prostate cancer is usually slower growing, every day and every increase in size gives more time and more chances for a metastasis.

In short: I chose not to play the odds and do “watchful waiting”.  Everyone has to make that decision for themselves, but I’m not a gambler when it comes to prostate cancer.  You only get one chance at this life.  Plenty of other people have made a different decision, but this is my perspective.  Whatever decision you make, make it an informed one.

Mayo (at least this doctor at Mayo here) only checks PSA every 4 months after the Da Vinci surgery, presuming you have clear margins, no vesicle involvement and the like for the first year.  Then they do every 6 months for two years and then yearly.  At least that is what they said now.  Obviously that could change in the future.

Regarding the PSA, they only use the regular sensitivity PSA instead of the ultra-sensitive because they seemed to think that they would not do anything if it hit 0.2 (hopefully never).  This is the only area where I disagree with Mayo Clinic.  According to this study (From NYUMC) and this one (PubMed) they are useful in predicting biochemical recurrence at least in the 3-5 year range, and perhaps longer.  They didn’t have the time frame to do a long study at that time.  But the sensitive tests consequently could provide “18 months” lead time for salvage therapy.

However, the Doctors that I saw at Mayo do not make treatment decisions until the PSA level is 0.2 or higher.  This is why Doctors often say “there is no clinical significance of the ultra-sensitive PSA test.”  What it means is, nothing will get done anyway until the levels are reached.  This represents a difference of opinion between some Doctors and others where some will treat the area earlier than others.  In many people’s opinion (including mine) early treatment is best because you have a better chance of knocking out recurrent prostate cancer.

What I would prefer is a third generation PSA test at Mayo to show “< 0.01″ instead of the “< 0.1″.  But since they do not do it right now, I will keep asking and order the laboratory work on my own.  The LabCorp tests have showed “< 0.01″.  I actually may print out a few research papers on it for my doctor and see if I can sway him.

They said that sometimes it seems as if “anything can cause anything” when I asked about losing the taste for PB&Js.  One said they had a guy who had a kidney blockage and they cleared it and within a month he no longer needed his reading glasses he’d been using for years.  So, the consensus was essentially, strange things can occur and no one yet knows why.

All in all, good news, but I didn’t get the sense of relief I did after the surgery when they said that it was clear of margins, no involvement etc.  Perhaps it will come in time.  Years maybe.  You hear the statistics, but it is not enough comfort yet.

p.s.  After I posted this, I remembered I wanted to say that the Doctors at Mayo said that E.D. and continence continue to improve for at least 18 months.  Mine is doing well.  Continence good except during sit-ups you get drops.  ED is pretty good, especially with Viagra.  BUT if you are reading this and at 4 months or 6 months or even 12 months do not give up!  It will still keep improving.  Try not to be discouraged – I know it is easy to be discouraged.  Those first 3-5 weeks were very discouraging because it is hard to see the light at the end of the tunnel.

Studies such as this one (from 14 years ago) (Schild SE, Buskirk SJ, Wong WW, Halyard MY, Swanson SK, Novicki DE, et al. The use of radiotherapy for patients with isolated elevation of serum prostate specific antigen following radical prostatectomy. J Urol 1996;156:1725-9.) have shown that early radiotherapy saves lives.

It must be on my mind because I had a dream (terrible nightmare really) that the PSA levels were slightly high.  Just slightly, but if you have been in a similar situation, you know that any elevated PSA level (or any marker) is a nightmare fear.  Given the test I ordered myself, I believe it is unlikely that the PSA test would be, but the subconscious fears are obviously there.  I hadn’t been thinking about it while awake since the last test I ordered myself, but apparently the subconscious has been at work.

After reading, it seems this is quite common when you get close to a PSA recheck appointment to worry.  I had a very difficult time falling asleep after that, and have been a bit anxious since then.

I am ready to go in today and get the recheck done instead of waiting, but got a bit of time to wait.

I may have described this before, but a neighbor and friend who was diagnosed with Stage 4 breast cancer about 10 days before this PCa odyssey began for me and so has been going through a similar (although much more involved) treatment include chemotherapy, upcoming radiation etc.  We were talking and described the feeling as a radio blaring in the background continuously saying “CANCER, CANCER, CANCER.”  You can tune it out for a while, but things like the continual (it seems) radio commercials advertising for hospitals for cancer treatment, the “cyber-knife” etc continually bring it back.  She and I believe that over time it will get softer and software and hopefully eventually will just be occasional background noise.  For me, it had been a little softer by the end of May, but the last few days since I got closer to the recheck the radio has been turned up again.

The advertisements on the real radio are enough that whenever they come on, I have to immediately change the station.  If there was a filter available for it, I am sure there are many patients who would buy one.

One good thing about Mayo Clinic is that my blood-work will be drawn on Thursday July 7th in the morning so in all likelihood they will have the results for the PSA etc on-line later that day.  This means that instead of having to wait and worry all weekend until the Tuesday appointments (there are two and I am not sure exactly why yet), I should be able see the results quite quickly and be informed prior to going in to the appointments on Tuesday.

So, one hopes that after this check the ‘radio’ turns down a little bit and continues to get the volume down a little every time thereafter.  My friend starts radiation tomorrow through mid-August and I believe now goes from weekly chemotherapy to chemo every three weeks until next year.  She is a trooper and a sweet, lovely person.  Her ‘radio’ is blaring loudly and I think it will continue to blare loudly until next year.

Hadn’t seen that before, but it appears that others have experienced it too.  Thought I’d mention it since it was something completely different.

The most notable change in the last 5 days is that Monday through Thursday I had a lot of energy, more than I have had at any time since the surgery.  Friday afternoon and Saturday afternoon I was tired again, but the first 4 days of the work week were much improved.  It was a good feeling.

At three months, I have to say that it has been a long road.  I’m glad I went and got my own PSA checked at around 5-6 weeks instead of waiting for them to at 16 weeks – mentally it is a good thing to know.  Recovery isn’t easy, but you get through it, it just takes time.  Even when the Doctors say 8 weeks, that just means 8 weeks until you feel some better and can function pretty well – expect at least 12 weeks to feel 95% and probably 12-18 months until you are 100% back to normal, at least according to the Doctor at Mayo who said wait to give blood until then because full recovery after surgery is not instant.

I’ll keep posting as thing progress here and hope that if you have something to add you do so in the comments!

Two interesting things after I posted this one, see Viagra and a blue haze in my vision and notes on ED and SSRIs like LexaPro and medicine like Xanax.