Positive Margin at Bladder Neck...

I chose open surgery over robotic in 2008, because in my region, robotic surgery for prostate was too new. I did not want to go out of state to have surgery, so I went with a very experienced open surgeon.

In the end, due to some weird anatomy issue in my prostate bed, my surgery would have had to have been open regardless, had robotic been started, they would have had to have switched over.

And for the record, though some of my blood was stockpiled in case needed, none was needed. Some argue the blood loss as a reason to have robotic surgery, but I believe that to be more the case in the old days of open surgery.

As far as cath time, it really varies surgeon by surgeon, and also in what difficulties are found in the bladder neck to urethra connection. Some feel that's the most complex part of the entire surgery.

My original cath time was over 2 months due to surgical difficulties, and that was before I started running into to chronic stricture problems post surgery. It did however, allow plenty of healing time, and I often wonder if that was a factor in why I never had any ED issues post surgery, because of the long healing time. Certainly can't prove that remark, but perhaps?

As far as the positive margin, and you being at Hopkins. Even the greatest surgeon at the greatest hospital does not guarantee that a positive margin(s) can exist. There is no dotted line for the surgeon that lights up, so it takes a lot of judgment call during surgery. In my case, due to having what was called a "deep and narrow prostate bed", my surgeon was not able to access what he wanted to on my right side, even with open surgery, and that's where I ended up with a positive margin. He cut wide on the left side and removed the nerve bundle, and intended to do so on the right. That was the game plan prior to surgery. However, he was not able to remove the right bundle, and on my surgical notes, it stated that they were left in place "but damaged". Still amazing that I had zero ED with left side removed and right side damaged. I see it as the luck of the draw, or winning the Powerball. My surgeon refuses to this day to take credit for that miracle. I was just plain lucky.

David in SC

Hi Joe,

I don't know what block PUM means either.

The "summed length" may just be standard language used for both continuous and discontinuous cases.

I would interpret "highest grade at margin" to mean highest grade adenocarcinoma found at the PSM not necessarily that there was also benign tissue there.

I agree it seems odd it was not Epstein who looked at the focal bladder neck margin since they are apparently so rare (<0.1% of all cases). The names on my final pathology report are Dr. Fanaian and Dr. Nguyen. But I it probably didn't take an expert if the margins were obviously clear.

These would all be good questions for your surgeon.

I think that talking to a radiation oncologist at Hopkins is a good idea. You may want to consider talking to a medical oncologist who specializes in PC as well as another point of view.

Are you familiar with the literature on the often indolent nature of GS6 and serious debate as to whether it should be re-classified as non-malignant?

Robot,

Here is some info I hope will help you. I gathered this in researching and
dealing with my own pos margin.


Standard prostate pathology report format found here:

http://www.archivesofpathology.org/doi/abs/10.1043/1543-2165-133.10.1568

then click on the blue pdf link to pull a copy.


Here is the part about margins. There are nice illustrations, too, to
show what's happening with these margins, but I didn't include them:

=============================

Margins (select all that apply) (note I)

Cannot be assessed
Benign glands at surgical margin *
Margins uninvolved by invasive carcinoma
Margin(s) involved by invasive carcinoma
Unifocal *
Multifocal *
Apical
Bladder neck
Anterior
Lateral
Posterolateral (neurovascular bundle)
Posterior
Other(s) (specify):
.
.
.
I: Margins. The entire surface of the prostate should
be inked to evaluate the surgical margins.28–36 Usually, sur-
gical margins should be designated as negative if tumor is
not present at the inked margin, and as positive if tumor
cells touch the ink at the margin. When tumor is located
very close to an inked surface but is not actually in contact
with the ink, the margin is considered negative. Positive
surgical margins should not be interpreted as extrapros-
tatic extension. Intraprostatic margins are positive in the
setting of intraprostatic incision (so-called pT2ϩ disease;
Figure 1, A and B).28 If the surgical margin finding is pos-
itive, the pathologist should state that explicitly, although
this finding is not relied on for pathologic staging. The
specific locations of the positive margins should be re-
ported, and it should be specified whether EPE or intra-
prostatic incision is present at each site of margin positiv-
ity. There should be some indication of the extent of mar-
gin positivity. At the 2009 International Society of Urolog-
ical Pathology Consensus Conference on Handling and
Staging of Radical Prostatectomy Specimens, it was rec-
ommended that the extent of a positive margin be re-
ported as millimeters of involvement.

====================

Maybe the PUM means positive unifocal margin?? Just my guess.

The "blocks" probably refers to the "blocks and slides" nitty gritty of how
the pathologist slices and examines the prostate specimen handed off by the
surgeon.

On my second opinion pathology, I wanted to use JH. The admin people there told me
Epstein prefers to do all the PCa paths himself but that he has trained a few others
to take over when he is away lecturing, out of country, etc. He signed mine. I
am glad he did mine, but I'll bet the other paths working with him are great, too.

You know, you do not have to wait for three months for a PSA. You can get an
ultrasensitive PSA or a standard one yourself, quickly and pretty cheaply about $100 or less.
If you want to go this route:

(1) There are many docs/labs combinations that let you get the test without anyone but
you knowing. They have websites. After paying online, the system gives you a doctor's order
that you can print at your printer; you take this to one of the labs they list--in some cases they
use big lab outfits with thousands of places to get your blood drawn. Lab does your
blood draw.  They seem to prioritize self-pays like us ahead of the others waiting for drug screen tests. 

I am usually in and out in 15 minutes.  Don't remember waiting more than 20 minutes, and I've done a number of these now.

Then, within a day or two, you log back into the web system with your userid
and password and retrieve the results (like a pdf you can print if desired). No one
except you will know unless you wish to share results with someone. The NSA
can probably see your results (ha ha), but does that matter?

(2) There are a number of these web sites that do this. We are not allowed to post
commercial ads here. But if you just google for "personal" + "lab" + "tests" you
will see a lot of them pop up. You can research and find one that fits your needs
best.  Be careful -- some charge a lot more than others for what is probably the same

test, using the same lab outfit.

(3) Be aware that if you are a resident of some states, you will be prohibited from using
these sites. Hmmmm. Wonder why (laughing)?

(4) Be aware that post-prostatectomy, it takes a number of weeks for the PSA that was
in your blood to disappear. There are half life calculators to help decide, based on
what a guy's PSA was before the surgery. Getting your own test too early will just
waste your money and worry you needlessly.  I did my first at about 7 wks, and my

ultrasensitive was already < the machine could measure.  YMMV.

(5) Your call, but your doctors may be peeved at you for going around them.  Indeed,
there is a big question on whether ultrasensitive tests are more troublesome and
worrisome for both doc and patient. In my case, I wanted to know as much info as I
could get my hands on. It's my body and my life. I want to slant the odds in my
favor. Making informed decisions comes with knowledge. That's just me. Other
patients prefer to "not know" and depend on the medical complex to lead the way. I
certainly respect that view, too.   If your uro only wanted the standard test, but you

went off on your own and got the ultra, he might be miffed.  In my case, I work in

a state different than my home.  Arranging med visits/tests is more complicated for me,

so I want as much advance warning as possible if my PSA starts rising.

Below are some links I gathered while researching my own positive margin situation.
Perhaps you can get something from them to help in your case:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3200270/pdf/PC2011-673021.pdf

http://jco.ascopubs.org/content/25/27/4178.full

http://prostatecancerinfolink.net/2011/08/27/positive-surgical-margins-systemic-disease-and-prostate-cancer-specific-mortality/

http://www.harvardprostateknowledge.org/positive-surgical-margins-following-radical-prostatectomy

http://www.jcancer.org/v02p0001.htm

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1502366/

http://webdoc.nyumc.org/nyumc/files/urology/attachments/godoy_tareen_lepor.pdf

http://www.hindawi.com/journals/pc/2012/963417/

http://www.nature.com/modpathol/journal/v24/n1/full/modpathol2010155a.html

http://www.jcancer.org/v02p0001.htm

http://www.ncbi.nlm.nih.gov/pubmed/17698141

http://www.humpath.com/spip.php?article18059

http://www.ncbi.nlm.nih.gov/pubmed/11176487


Robert

Hi NJS,

Thank you again for all the information and for the papers.

NJS said...

I agree it seems odd it was not Epstein who looked at the focal bladder neck margin since they are apparently so rare (<0.1% of all cases). The names on my final pathology report are Dr. Fanaian and Dr. Nguyen. But I it probably didn't take an expert if the margins were obviously clear.

I contacted Epstein, and asked him for his opinion about the positive margin of the pathology report. He seemed surprised with the location of the positive margin, but I do not think he looked at the slides.
He basically said that with a 3mm Gleason 3+3 = 6 positive margin, between 80% and 90% of the time there is no need for RT, and he recommended just to wait for the PSA tests. However, when I pressed for published data supporting the percentages given, he did not provide a reference. My feeling is that they do not have good data, in particular because bladder neck positive margins are very rare.

NJS said...
Are you familiar with the literature on the often indolent nature of GS6 and serious debate as to whether it should be re-classified as non-malignant?

I am not very familiar with the literature on this debate. If you know some of the key papers, it would be great if you could share. I think that being well informed is crucial in order to make better decisions.

Thanks again,

Joe

Hi Purgatory (David),

Thank you for the input.

Purgatory said...

As far as the positive margin, and you being at Hopkins. Even the greatest surgeon at the greatest hospital does not guarantee that a positive margin(s) can exist. There is no dotted line for the surgeon that lights up, so it takes a lot of judgment call during surgery. In my case, due to having what was called a "deep and narrow prostate bed", my surgeon was not able to access what he wanted to on my right side, even with open surgery, and that's where I ended up with a positive margin. He cut wide on the left side and removed the nerve bundle, and intended to do so on the right. That was the game plan prior to surgery. However, he was not able to remove the right bundle, and on my surgical notes, it stated that they were left in place "but damaged". Still amazing that I had zero ED with left side removed and right side damaged. I see it as the luck of the draw, or winning the Powerball. My surgeon refuses to this day to take credit for that miracle. I was just plain lucky.

Indeed that are no guarantees in this game, but as you note sometimes there are miracles, which can keep us hopeful.

All the best,

Joe.

Hi NJS,

Thank you again for the reference.

NJS said...

Although you did have some pattern 4, if your positive margin was all pattern 3 there would seem to be no need to rush off to adjuvant radiation since salvage radiation, if eventually needed, seems to be nearly 100% effective...

I will read those papers in preparation for a consultation with a radiation oncologist who specializes in PCa.

How are you doing with your Post-Op so far?

All the best,

Joe.

Hi Bobbiesan and NSJ,

Thank you for all the references. I read them all before the consultation with a radiation oncologist at Hopkins.

The radiation oncologist recommended that I do adjuvant RT, as he claimed that there is a clear benefit for patients with positive margin in terms of progression free evolution. The numbers that he gave were 95% for adjuvant RT versus 87% for salvage RT at the 10 year mark. He also pointed me to the new ASTRO/AUA recommendation guidelines for RT after prostatectomy, which I found independently and posted earlier in this thread. I am not surprised by his recommendation, as he is a radiation oncologist, but his opinion is in clear contradiction with my surgeon's (also from Hopkins) who recommended to watch the PSA and do RT if the PSA reaches 0.1. Presumably both of them have access to the same large Hopkins institutional database.

I have requested from both of them some references from the published literature to support their recommendations. I hope to get this information from their assistants soon, and if do I will share these references here, so that anyone with a similar situation can use them as well. I would like to make a decision of having adjuvant RT or not based on stratified evidence, but I am very much in doubt that good data exists.

On a positive note, I received the result of my first post-op PSA, which was less than 0.01 (the resolution of the assay). I did it early (at one month post-surgery) to have a baseline in connection with the positive margin. This seems to indicate that whatever was left there is too small to produce detectable PSA at the moment. This reduced my anxiety temporarily, but the next scheduled PSA test is going to be at 3 months post-op.

Also I have been dry at night for a week, and my leakage during the day has reduced substantially. My surgeon recommended to do Kegel exercises only when I void, but I read that it also helps to do them at non-voiding times are well. What kind of recommendation did you surgeon give?

Lastly, I would like to ask about sexual activity. I am now two-weeks past catheter removal, and my surgeon recommended to start sexual activity early in order to avoid long term ED. There are different ways to proceed. Any experience on taking lower daily dosages of ED drugs to help at the beginning versus the use higher dosages on demand? Any differences between viagra and cialis? Any serious side effects experienced?

All the best,

Joe.

Joe,

Wonderful news on the psa!

I was already fit due to working in a military setting where it was the thing to do. Started the kegels, religiously, right after my biopsy result and some healing and continued for the six weeks up to my ralp. Just used the standard handout schedule from the uro--not just at voiding. Guess the voiding kegel is esp good because it helps you isolate/recognize the key continence muscles. Then continued kegels on uro's schedule up to one yr, then experienced pain due to an unrelated, preexisting pudendal nerve injury worsening (too much biking and desk work!). Uro said I could stop kegels as, by that time, I had all the benefit I would get. The kegels plus walk/drink/walk post surgery got me to 99% continence within a week after surgery. I still wear a small shield/pad for the occasional drop post-urination at work, as light colored dress slacks can show. But have had that for years.

My friend, who also had the surgery, later had the physical therapy counseling/treatments and said it helped some. So that is an option. Try not to overdo kegels, either, as that can be counter-productive.

The levitra works ok, using as needed, 10-20 mg, with headaches and flushing the main SEs. I used daily 5mg cialis for a couple months, but it is expensive since not on my ins. Gave me some indigestion. I read that one theory behind the daily cialis deal is that occasional erections, esp nocturnal, are more healing due to better blood flow. In my case, I am going to get tested for low-T, not that uro can treat me for it--would just like to know. Working states away from home, and being forever faithful, plus job stress, kinda limits my exposure to stimulating adventures. Maybe I will buy a year's pass to that strip club down the street--can that be taken off taxes as a medical expense (ha ha)?

Seriously, our situations are great compared to someone like Purgatory, who just cannot catch a break with this crappy disease. Best learn from him and hope we can summon half his grace should things go south with our margins.

Robert

Hi NJS,

I got a reinforced message from my surgeons nurse to do Kegel exercises only while voiding, and to void every two hours, and then every three hours, and as better control comes, just void as needed.
This regimen is working well.

Yes!, I think that walking is also helpful.

All the best,

Joe.

Hi Bobbiesan (Robert),

Thank you for you input.

I guess the recommendations about Kegel exercises vary substantially from doctor to doctor. It is great that you recovered your continence very quickly by being so diligent with the Kegel exercises. I have decided for now to stick with the recommendation that my surgeon gave as things have been progressing well on the continence issue. I am now dry at night, and while walking I have almost no leaks, but still leaking a little when standing up from a sitting position. In case progress stagnates, I will probably change the approach.

I will start taking viagra on demand as per recommendation of my surgeon, who has encouraged his patients to engage in sexual activity as soon as possible, in what he called a "use it or loose it" strategy. I will probably check with my internist before taking it, if I would have any risk factors, as I heard that viagra may increase the risk of heart disease or heart attack. I got a prescription today, and will go the pharmacy as soon as my internist clear me for it. After discussing with my surgeon, he did not recommend levitra or cialis, just based on the statement that in the Hopkins database patients get better results with viagra. Let us see if it will work.

Like NJS, I have been walking some for a total of one hour daily, I do not quite now the distance, but all the activity is helping. I can not wait until I am cleared for running and swimming.

All the best,

Joe.

Joe, your experience was very similar to mine. Also had some cancer in my Bladder neck. I'm currently in my 6 th week since surgery and have 95% control of my bladder. My urologist wants me to wait 12 weeks before doing a PSA test to see if I have a reading. I have set up an appointment to have a consultation on my next move if any. I'm trying to be pro active in my cure. I also have not found to much positive articles on my prognosis.