Recovering from RRP

yipper · New User Joined: 12 Aug 2009 Posts: 9

Had my RRP a week ago and am in recovery. I had a PSA of 5.7, stage T2a, 8 of 12 cores positive, Gleason 3+4=7.

Surgery went well, and I only have to take a tylenol every now and then for pain. Still have my catherer in, will come out early next week (hurrah!), and I'll get my pathology report (fingers crossed). After the surgery the doc said it went fine, he saved both bundles, and everything appeared as he expected.

Just about everything I've experienced lines up with what I read on this and other boards, with a couple of exceptions. One thing I hadn't read about was the excessive phlegm that built up after the surgery and the need to cough a lot to clear it. Problem is, the incisions hurt whenever I cough, so have to put a pillow or something over my stomach.

The other problem I've had is that I'm used to sleeping on my side and have a hard time sleeping on my back. After a couple of days I was able to sleep on the left side, but I still can't sleep on my right side because the biggest incision is there and the pressure hurts. I asked the doc why it hurts more on my right side, and he said that's the side where he took the prostate out. I thought it was taken out through the incision above the belly button, but guess not.

On the catherer, I've stuck with the overnight bag 24/7 for two reasons: don't have to empty it as much, and don't have to worry about bacteria getting in when I unplug one bag and plug in another. When I go outside I put the big bag in a shopping bag and it's not noticeable. Only problem I've had with the catherer, besides the inconvenience, are the strange sensations sometimes when I stand up or walk, I think it's air or fluid moving around in the tube.

Overall, this RRP has been an easier operation than either of my hernia surgeries but, of course, I have yet to deal with the incontinence or impotence issues.

Thanks to all who post on this board, and best of luck to everyone in fighting this disease.

John M · Experienced user Joined: 27 Jul 2009 Posts: 59

Sounds like you are coming along well, and having only the usual problems. Brings back some memories...I was in almost exactly the same situation, in terms of tumor and surgery a couple of months ago. The first day or two post op, the main pain was changing position in bed. I just wanted to find the best one and not move at all. In the hospital the worst thing was when a nurse's assistant stepped on the catheter...ouch!

Then the next big issue was the catheter...the strap wouldn't keep it up without a lot of tape, or safety pinning it on my pants. Then at the very end, low grade infection starting, but started antibiotics, got it pulled the next day and I was fine. I was extraordinarily lucky and didn't have the incontinence problems that almost everyone else here had, so as soon as the catheter was out, I was off and running (well, not running, but walking 5 miles a day). ED...well, slowly coming along, but a ways to go.

Overall the early postop pain is the smallest issue, the biggest issue is long term issues with !. tumor, 2. urine, 3. ED. If having an open prostatectomy rather than the robot helps even a very tiny bit in any way with 1, 2 or 3, it's worth it. Pain at the incision is temporary, and not that bad.
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John

Hawk · Senior User Joined: 22 Nov 2006 Posts: 425

"...the biggest issue is long term issues with !. tumor, 2. urine, 3. ED. If having an open prostatectomy rather than the robot helps even a very tiny bit in any way with 1, 2 or 3, it's worth it. "

My impression is that open surgery MIGHT help SLIGHTLY wit 1 in some situations.

But also that open surgery it is likely a little worse for 2 an 3
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History: PSA's 6.7 neg. biopsy - PSA 16.6 neg. biopsy - PSA's 8.2, 8.1, 8.7 - Biopsy. 4+4 Gleason 8. Lap RP Apr 2004, age 52 All neg margins, nodes, and structures. (T2a). Post RP PSA: every 6 mo. <.1 until Feb, 08 (46 mos) PSA .1 - I then got sensitive tests (all in 2008) showing:
Feb .06, May .09, Jun .10, Aug .10, Nov .15 -SRT

John M · Experienced user Joined: 27 Jul 2009 Posts: 59

And "RRP" in the original post...means robot, I misread it. This is all a matter of opinion. My surgeon, and "open" guy, says that open may be better for all three, and can quote the literature on it. There is also different literature that says robot is better for all 3. So, never mind, everyone should believe that whatever they got is the best, don't you think? Everyone is above average.
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John

srtimmons · Posted: Fri Aug 14, 2009 10:13 pm Post subject: PC Staging

yipper, I would have thought that with 8 of 12 cores positive, it would be a T2c as opposed to T2a. That is if the samples were evenly distributed across the prostate.

The way I understand the grading:

T2a - confined to less than 1/2 of one lobe
T2b - confined to more than 1/2 of one lobe
T2c - confined in both lobes
_________________
Age 58
Dx 6/15/2009; PSA 7.1; 7/12 cores positive; Gleason 6 (3+3) and 7 (3+4); PNI observed. Bone Scan and CT scan negative.
Robotic RP 7/20/2009

Path report 8/11/2009 - clean margins, negative lymph nodes, negative seminal vesicles, Gleason 3+4, Stage T2c; 15% of prostate involved; NoMx.

PSA .006 September 2009
PSA .005 November 2009
PSA .005 February 2010

yipper · New User Joined: 12 Aug 2009 Posts: 9

srtimmons, I wondered myself if I'd been staged correctly. The staging did not show up on the biopsy report, my urologist told me what it was when he went over the biopsy. Same with the Gleason grade, he just wrote it along with the stage on the biopsy report. I saw three other urologists before deciding on the treatment, two of them surgeons and one a radiologist. I gave them all copies of my biopsy report and none of them questioned the stage. In fact, I asked one of them specifically if they agreed with the staging and he said that he definitely did.

So, here's what I'm guessing FWIW. Maybe the staging a, b, or c, applies to the biggest single tumor, whether it is in one or both sides and how big it is. In my case, even though I had 8 of 12 cores positive, two of the cores are 2% and 6% and another one is 10%. The core where he felt is 25% but it may be separate from the other cores. In other words, looks like I had several different areas of tumor throughout the prostate, but in the urologist's opinion I didn't have one tumor that extended across both sides. As I said, it's just a guess, since just when I think I understand this stuff something like this comes up. I'm just glad I got the darned thing out, because as one nurse told me, my prostate really needed to come out. And the radiologist, after seeing the biopsy, didn't think I was a candidate for seeds alone.

I'm also confused on gleason grading when a large number of cores are positive. In my case I was told I was 3+4 but one urologist thought I was 3+3. Of the 8 positive cores, 6 have only 3's and two have a mix of 3's and 4's, so I can understand why they said I was 3+4. However, look at this theoretical example.

Patient 1 has only one core positive, and its's mainly 4 with some 3, so he would be a gleason 4+3. Patient 2 has three cores positive, one mainly 4 with some 3's and the other two cores only 3's. Since there are more 3's than 4's, he would be a 3+4 even though he has more cancer volume than Patient 1. Go figure.

My original urologist did say I have high volume cancer, so I guess they separate out the volume from the gleason grade. And I note in the sloan kettering calculators you do have to put in both the gleason grade and the number of positive cores.

I'm so glad this is all theoretical for me now, since whatever gleason I had is outta there! Well, this isn't ever just theoretical, since the numbers follow us in predicting recurrence, but for now I'm just focused on the cancer being out and I'm on the mend. I'll deal with future problems as they arise.

yipper · New User Joined: 12 Aug 2009 Posts: 9

Got my pathology report, and srtimmons was right. I was upgraded to 4+3=7 and pT2c. But negative margins, no extracapsular extension, and clear seminal vessicles. Lymph nodes weren't looked at, my surgeon said it wasn't necessary. Best results I could have hoped for. Urologist just wants to see me back in 3 months for a PSA.

srtimmons · Posted: Wed Aug 19, 2009 7:55 am Post subject: Yipper

Yipper, I'm surprised your surgeon did not remove lymph nodes. Mine took out 22 nodes and the seminla vesicles. Fortunately all were negative for PC.

I thought it was std. procedure to test the local lymph nodes.

Your situation sounds just like mine except for the grad; I'm 3+4. Hopefully we are both cured, but I will be vigilant with the PSA testing as I do see a fair amount of recurrence of PC even when supposedly organ confined.

Best wishes for you!
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Age 58
Dx 6/15/2009; PSA 7.1; 7/12 cores positive; Gleason 6 (3+3) and 7 (3+4); PNI observed. Bone Scan and CT scan negative.
Robotic RP 7/20/2009

Path report 8/11/2009 - clean margins, negative lymph nodes, negative seminal vesicles, Gleason 3+4, Stage T2c; 15% of prostate involved; NoMx.

PSA .006 September 2009
PSA .005 November 2009
PSA .005 February 2010

yipper · New User Joined: 12 Aug 2009 Posts: 9

[quote="srtimmons"]Yipper, I'm surprised your surgeon did not remove lymph nodes. Mine took out 22 nodes and the seminla vesicles. Fortunately all were negative for PC.

I thought it was std. procedure to test the local lymph nodes.

Your situation sounds just like mine except for the grad; I'm 3+4. Hopefully we are both cured, but I will be vigilant with the PSA testing as I do see a fair amount of recurrence of PC even when supposedly organ confined.

Best wishes for you![/quote]

Thanks for the good wishes, and same to you. I don't know why some surgeons do it one way and others do it another. We do our homework beforehand, but once we get surgery we're at the mercy of the surgeon. My guy has done over 400 of these, and is the most referred to urologist in my region, so I just have to trust his judgement when he says he didn't need to remove the lymph nodes. He's a heck of a surgeon, I had little if any problems with my recovery, and am already dry.

As far as recurrence, I'll do my PSA tests, but this disease has already robbed me of enough peace of mind. I'm going to try to put this out of my mind now and not worry about it unless I get a bad PSA reading. From here out it's all in God's hands.

Best of luck to you!

Sephie · Experienced user Joined: 24 Apr 2008 Posts: 50

As to testing of lymph nodes, my husband's surgeon said it's not necessary if the PSA is under 10 and there is no evidence that the disease has escaped the capsule.

yipper · New User Joined: 12 Aug 2009 Posts: 9

[quote="Sephie"]As to testing of lymph nodes, my husband's surgeon said it's not necessary if the PSA is under 10 and there is no evidence that the disease has escaped the capsule.[/quote]

Mine was oinly 5.7, so I guess my surgeon took this into account. I also asked him if I needed a super sensitive PSA test in 3 months, and he said no, they cause more problems than they solve. He said just get a regular PSA test.

srtimmons · Posted: Wed Aug 19, 2009 11:44 am Post subject: yipper

yipper - my Dr. believes in the ultra-sensitive PSA. he has done a lot of research on it, so I guess that is the path I will take. We can compare notes.

Also, I had my robotic surgery 1 month ago and am not happy with the healing process on my incisions. I have 6 slits in me and most are healing very slowly, plus they are right at my beltline making wearing regular pants more difficult and tender.

I hope yours heal faster.

FYI, my conact info is Steve Timmons @ 713-806-3720 (Houston) if you want to collaborate on the process and side effects we're going through. Sounds like I'm a bit ahead of you in timing.
_________________
Age 58
Dx 6/15/2009; PSA 7.1; 7/12 cores positive; Gleason 6 (3+3) and 7 (3+4); PNI observed. Bone Scan and CT scan negative.
Robotic RP 7/20/2009

Path report 8/11/2009 - clean margins, negative lymph nodes, negative seminal vesicles, Gleason 3+4, Stage T2c; 15% of prostate involved; NoMx.

PSA .006 September 2009
PSA .005 November 2009
PSA .005 February 2010

Sephie · Experienced user Joined: 24 Apr 2008 Posts: 50

Mine was oinly 5.7, so I guess my surgeon took this into account. I also asked him if I needed a super sensitive PSA test in 3 months, and he said no, they cause more problems than they solve. He said just get a regular PSA test.[/quote]

Don't know whether our doctor uses the ultra-sensitive PSA test...the only results he tells us is "PSA is 0.0" and that's just fine with me.

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