Eleven months after Da Vinci prostatectomy

Posted on January 24, 2012 by admin

I had my 11 month follow-up with the Doctor at Mayo today (January 24, 2012).  Here is a bit about it, it was actually quite a short visit with them.  I didn’t have a lot of questions, and there wasn’t (fortunately) a lot to go over.

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.

 

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PSA after surgery and anxiety

Posted on January 18, 2012 by admin

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.

Posted in Cancer stress and sleep, Prostate and PSA | Leave a comment

Watchful waiting, the PSA and prostate cancer

Posted on July 14, 2011 by admin

These are my thoughts on watchful waiting and so are from the perspective of the 30s-40s (and maybe 50s and 60s) age range.

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.

 

 

Posted in Needle biopsy, Prostate and PSA, Prostate cancer support, Prostate cancer surgery | Leave a comment

First check-up after Da Vinci Prostatectomy

Posted on July 12, 2011 by admin

Well, it was a little over 4 months ago that I had the Da Vinci surgery and today was the meeting with the Doctors for the first follow-up.  Saw three different Doctors and the consensus was that everything looked fine and I was doing well above the average (of course I am younger than the average so that helps a lot).

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.

 

 

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4 Months after Da Vinci Prostatectomy and PSA test

Posted on July 11, 2011 by admin

Well, we’re 4.25 months after Da Vinci Prostatectomy and tomorrow is the follow-up appointment.  I had the blood work done last Thursday (July 7) and by the time I got to the computer some had shown up on-line.  By lunchtime (after an 8:30am appointment) Mayo had the results on-line.  It appears that Mayo Clinic only does the standard PSA test not the ultra-sensitive given the ranges as being “<0.10 ng/mL”.  I am going to ask about that tomorrow.

 

 

Posted in Da Vinci, Prostate and PSA, Prostate Cancer surgery recovery | Leave a comment

16 weeks after Da Vinci Prostate surgery, PSA, the Cancer Radio

Posted on June 22, 2011 by admin

Well, it has been 16 weeks and two days since the Da Vinci Surgery and I haven’t updated on here in 3 or so weeks.  I’m now just a little over 2 weeks away from the blood check and less than 3 weeks away from the follow-up appointment after the PSA recheck.

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.

 

 

Posted in Da Vinci, Prostate Cancer Stress, Prostate Cancer surgery recovery | Leave a comment

SSRIs like LexaPro, etc and ED

Posted on May 29, 2011 by admin

One thing to note.  The doctors may give you lexapro or other ssri drugs for anxiety, stress etc from the mental trauma and physical trauma. Or maybe even Xanax.  Most of the SSRIs can have ED as a side effect, so beware if you are taking them, it may be playing a role in recovery there after the prostatectomy.  Xanax also notes that as a side-effect. For many, it definitely can impact ED and so beware of that before stressing too much.  And it may take 1-3 weeks (or longer?) after stopping either for it to stop impacting you on the ED front.

 

Posted in Prostate Cancer and ED, Prostate Cancer surgery recovery | Leave a comment

A blue haze in vision after Viagra

Posted on May 29, 2011 by admin

I’ve been taking Viagra pretty much daily (or every other day) per protocol (Doc Guide, UCI.edu, CancerPages)  the last roughly 2.5 months. Usually I would take it 45-60 minutes after eating.  Tonight for the first time instead of taking after dinner, I took it about 30 minutes before dinner since it was late.  After eating, I could feel the flush but also noticed a blue haze to my vision.  Most noticeable when looking from dark areas to light.

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.

Posted in Prostate Cancer surgery recovery, Prostate Surgery and Viagra | Leave a comment

Three months after Da Vinci Prostatectomy

Posted on May 28, 2011 by admin

Today has been three months since the Da Vinci Prostatectomy – about 12 weeks and 5 days.  Recovery is pretty good, essentially as it was at the 12 weeks after Da Vinci surgery point.  But I wanted to write something because three months after Da Vinci seemed like a big milestone.  Many Doctors will check the PSA right now although Mayo is waiting about 5 more weeks.  Many men will have either continence and ED evaluated at 12 weeks after Da Vinci surgery.

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.

 

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

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