From Diagnosis to Treatment to Recovery

Go back and find the post about preparing you for the fact that your doc may or may not use the ultra sensitive PSA test post op for low risk cases like yours.

Ok, so is it completely crazy that I'm on pins and needles waiting on your PSA results. I'm almost as anxious to see yours as I was Bob's. We are all family here and I just can't wait!!!!~Miki~

We're here waiting for the news and supporting you from all over the globe Prato!

So, I thought i would do a wrap up update.

As I posted in another thread, I had my first PSA test this week, and it came back as undetectable, that was a relief. Next one is in 6 weeks, then every three months for 2 years. Not thrilled about that, but if I keep getting zeros, I'll be happy to deal,with it.

Whether I am continent depends on ones definition. My surgeon defines fully continent as no pads. So by his definition, at 5 1/2 weeks I am continent. But occasionally I do get a drip, with activity or stress. So on occasion , if I am going out into a so I situation, I wear a shield (Depends, so thin you barely realize you are wearing anything) for my mental well being, even though I don't really need it.

In the ED department, I am doing ok. Ive been getting erections about 80-90% since about 3 weeks after surgery. This is with daily Cialis 5 mg. I think I am very lucky in this department. In fact, in all departments.

For the newbies, remember
--Diagnosis of PC is about as far from a death sentence as a Cancer could be
--As hard as it is, try to keep your wits about you. The best way to do this is to get educated
--Explore ALL options, and chose what's best for you and your situation, then don't look back
-- in the weeks and months leading up to treatment, get into shape. Work out, lose weight, do cardio, and work on your core (especially if you are doing surgery
--If you are doing surgery, have as much sex as you possibly can before treatment. If she's not in the mood , play the Cancer card, no shame in that. And if that fails, there's always self service
---Whatever treatment you choose find the best, most experienced Dr you can find

Yes, halbert, I'm hoping to be in Rochestet. It's about a four hour drive for me, so no biggie

P-Man. So now you are starting to get boring.........No panic. No pads. No scales. No......

Seriously though P-Man. In your case boring is good. It is great to see you back down to earth at last and enjoying life as you should.

Another great report from a great guy. Keep it going bro

Hi Pratoman/Hi guys (and usually some gals).

I signed on to this site yesterday because I was intrigued about the Rochester gathering. I live in this god-forsaken (at the moment) place and was wondering what that gathering was all about. I emailed Pratoman and he was kind enough to reply immediately.

Very brief background: PCA diagnosed in March 2008 (age 70 to at that time). Married to a brilliant physician who insisted I have surgery ASAP (GS 4+4=8 at biopsy). Other docs advised against it, thinking "too late for that." Wife, trained as surgeon, but switched specialty after residency, said the only place for a tumor is out. I had to wait 30 days for the prostate to heal from the extensive biopsy (general anesthesia). On the operating table on day 31 (Strong Hospital, Dr. Jean Joseph). Upgraded GS 4+5=9. Holy crap.

Wife's insistence on a rush to the robot probably saved my life. Very aggressive cancer, but very small tumor load and totally organ contained. Spent half my life on the internet after that :), but after I was still standing and with an undetectable PSA, years later, I relaxed a bit and stopped that. My wife draws my blood every 3 months on the dot and orders a super sensitive assay from the same lab. I chart it on an Excel spread sheet and keep a very complete "prostate book" with all my records and labs.

I paid the price for age and never exercising (although in otherwise in good shape and in good health). Still have one-pad-a-day dribbles but it's no big deal. ED was much more depressing. Tried everything. Some things worked more or less (shots) but for the most part the fun is over. My much younger wife says "be happy you're alive" A strong marriage or a great partner makes all the difference.

A couple of months ago the super sensitive PSA reading climbed up a bit. Not going crazy this time but my wife is waiting for one more reading (it was 0.05) in a month or so and if it increased, dragging me to Roswell Park for a consult. I am now philosophical. Even if I have a recurrence, with a variety of options that can keep me going another decade or more. That would make it 87. A reality check says don't be hasty about any decisions.

Steve
Rochester, NY

Post Edited (StevenH) : 2/22/2015 2:29:37 PM (GMT-7)

Halbert, I started a new thread for Steve so he's not buried here.

Cheers, Doug

Pratoman - I smiled at your signature suggestion of "getting as much sex as you can" Pre-op. I did in fact--unenlightened by your later insights-- follow that advice back in March 08 when I had a week to go before surgery. My wife is incredibly serious all the time and not given to spontaneous laughter or any silliness (leaving that all up to me). But, at the time, I told her a joke about a man coming home from the doctor with horrible news. He had but 24 hours to live. His devastated wife asked what she could do? He said that he would like sex. "Of course, darling", she responded and they went at it. An hour late she asked if she could do anything for him. He indicated that he would appreciate some more sex. This went on all night. Finally, he asked if they could possibly have sex once more, when his worn out wife replied, "Jeezuz, give me a break, you don't have to get up in the morning!"

I just noticed that you went for a second opinion on post-op pathology. I was going to suggest that for consideration to Halbert but did not want to be intrusive. That's a very smart move. My wife did the same for me. Didn't change anything , but that was confirming which is the point. Considering the path report is the most important document in the saga, getting that 2nd look by a leading PCA center makes so much sense.

Hi Halbert,
I did not want to be a busybody, but then again here we are, discussing who can't get it up---who is pissing in his pants--what kind of pads work best? A true brotherhood of prostates.

Just finished dinner (we get home from the office after seven, but my wife insists on making dinner with candles, wine, cloth napkins and silver napkin rings--she's been watching Downton Abbey too much) and we discussed 2nd reads on post-op pathology. She observed that reading slides is as much art as science at times and getting a second look, especially in high GS cases (me) is prudent. She had my slides read "blind" (no names) by two pathologists here. They agreed on the GS which is fine because she was looking for confirmation; not a "discount." That said, you got a very favorable report so there is less of an incentive or need for that second opinion. I am sure you will sleep well tonight.

StevenH said...
I just noticed that you went for a second opinion on post-op pathology. I was going to suggest that for consideration to Halbert but did not want to be intrusive. That's a very smart move. My wife did the same for me. Didn't change anything , but that was confirming which is the point. Considering the path report is the most important document in the saga, getting that 2nd look by a leading PCA center makes so much sense.

Steve,,are you referring to me? I didn't get a second opinion on surgical pathology, only biopsy. I asked about it after surgery, was told that the pathologist who looked at my stuff was highly experienced specifically in Prostate cells and it wasn't really necessary. I might ask the doctor when I see him in 6 weeks (I got this from his nurse). Honestly, I'm not sure I want a second opinion. I'm afraid it will come back g8, and it won't matter, because either way, the only thing that's going to happen now is PSA monitoring.

Yes, Pratoman,

I read (or rather misread) your "footnotes" as saying you had two reading on your post-op slides.
As I may have mentioned, my wife explained how subjective reading slides can be ,and how experience is so critical. The surgeon one picks might be "the best" but the pathologist deals with all sorts of cancers through his/her day and may, or may not, be the most experienced in evaluating PCa. With that thought, some patients send their slides for a second review to a leading PCa center, such as Johns Hopkins, etc. for a second read. Clearly if one is a 3+3=6 there is less urgency (panic) to do that. But I was 4+5=9 so it was Condition Red as far as my wife was concerned--and me, of course. So she did have two "blind" (no names attached) readings. They concurred which, bad as it was, is what one would expect and respect. Nevertheless, not uncommon for readings to be upgraded or downgraded.

All of this would normally be old history for me and out of my mind, but the recent small uptick in my uPSA has our attention. If it continues to climb, per my March PSA test, Sarah is getting the slides and taking them to Roswell Park (up the Thruway from us) for yet another look. Our eventual decision making would be influenced if, by any slight chance, the GS was in question.