Member Blogs

Jeff,

Although I don't have any personal experience with superficial BC or with BCG treatments, I would say to you that getting a second opinion is something that every patient needs to do for his or her own well being.  Something most of us here know for a fact is that not all urologists or pathologists are created equally, but don't think when I write that that I'm suggesting your urologist or pathologist aren't adequate or well trained.  Just that it's always the right thing to do, getting a second opinion.
There are things that you need to know about getting a second opinion and those are that you need to be seen by an oncologist, and that oncologist needs to be completely independent of the urologist, pathologist, and medical institution you've had your procedures at.  This is the usual protocol for second opinions, and you should also be able to ask your urologist for the name of an oncologist with whom you can obtain a second opinion.  It's also the right thing for you to do in asking that this oncologist be independent from them as I mentioned previously.
When you have your appointment you should bring with you (although sometimes these items are sent to the doctor ahead of your actual appointment) copies of all reports related to any tests you've had done (including pathology), surgical notes from your urologist as to the procedures he's performed on you, and also copies of the images of your pathology specimens.  When you have your appointment with the oncologist tell him or her of your confusion as to what the pathology reports are actually suggesting, and I think you will find in this person someone who has the ability to interpret for you these reports.
In addition to the second opinion you can also ask your urologist to give you a less technical interpretation of the pathology report, and if he's unable to do that you can ask him about having a meeting with the pathologist so he can give you that less technical interpretation of his actual report from the multiple pathology reports he's written.  This is a common situation when it comes to pathology reports, they are often so technical sounding that the average person is not able to completely comprehend what it all means.
One (well actually two) last things, and these are books you might be interested in finding.  I'm not sure as to their availability in your country, but I will name two books that I have that I've suggested to others as being good sources of information.  The first one is a general book about cancer (it's small), and it's titled, CANCER 50 ESSENTIAL THINGS TO DO by Greg Anderson.  It has some really wonderful information that he's found by surveying cancer survivors of all kinds, including himself (he was given 30 days to live by his doctors and that was many years ago).  The second book is one that's mentioned on the Bladder Cancer Web Cafe and it's titled THE GUIDE TO LIVING WITH BLADDER CANCER by Dr Mark Schoenberg.  This book has a great deal of information and is easily understood, and if you're able to find these books I think you will find they will help you with some of the terminology (specifically the 2nd).
I hope this information will help you in some small way, and please remember that those of us here are interested in how things are progressing with you so do keep us informed.  
God Bless,

Lou

Jeff,

I'm scheduled for my second cystoscopy (diagnosed Dec '05, TaGrade1) on August 14th; if they do another biopsy, and it comes out with wording ANY different from the one after my first TURB, I will get a second opinion, no dout about it.  I think you should, I think everyone who is dealing with cancer should.  I think any doctor worth his salt would encourage it, too.  Just for your own piece of mind.

Now, if 2 or 3 opinions come back "inconclusive", I'm not sure what I would do... I guess the nature of the beast is NOT to be black and white, but a whole lot of gray area.  But when your life depends on the interpretation of the gray areas, it's hard to know what the next course is.  Hang in there, and let us know the results of the second opinion.

Jeff-

not sure if I've shared this with you yet, but hearing the discussions on second opinions - DO IT! Below, I've pieced together some of my recent sharing on the ACOR list...

I'm only one year into BC (my wife, actually) -We had a recurrence after one BCG series. We have hi-grade. When you clearly have hi-grade G3, and especially when you also have CIS, IT IS SERIOUS.   It's ironic for us Ta and T1s - we catch it early and are faced with a tough decision - to pull the bladder or no. (If you are >t1, it becomes clear). But if you are lower grade, then apparently you have a lot more time to experiment. We had one pathologist/oncologist venture that G1 was close to non-malignant. (in other words, very slow growing).

If you are just getting going, you will probably go through a couple of TURBs to see how aggressive your recurrence rate is. Also get a second opinion on the grade.( we initially were graded g2, but the second opinion upped that to G3. ) We've been through three TURBs and one BCG regimen. We are starting a BCG + Interferon regimen shortly

We have juggled 4 "second opinions," following our first uro's recommendation to yank the bladder.  EVERYONE we've talked to agrees: pulling the bladder gives the greatest statistical assurance of beating the cancer, ( i.e.- living longer) particularly if you haven't had muscle invasion. But at what cost?  I've had 2 out of 3 surgeons say - cysectomy is not risk free.. "there are a lot of plumbing connections we are re-doing; you are losing part of your colon, there are a host of potential complications. Many do fine, some do not. But there is no going back!"  Since we are Ta, have been non-invasive thru all 3 TURBs, and have no CIS, we believe we have time to try another round of BCG +.  We think we've boiled it down to a 50% chance that BCG + Interferon ( which we start ed 4 weeks ago) will stave off the cancer. Yes that may only be temporary, a holding pattern. But then there is another 50(?)% chance that going this route will eventually overcome the cancer. Add to that, my spouse is taking an aggressive "change my habits" approach to living! (better nutrition, no hair dying, exercise, praying, etc etc), and maybe that contributes to remission, particularly if you can discourage the cancer for a while via BCG. With high grade, however, in the end, the odds are you are putting off the inevitable, so some would say, get the bladder out to live.

With lower grades, the other  option seems to be  repeated TURBs which may or may not win the battle. Problem is, over time,  you can damage the bladder or urethra by too much surgery. And you always are risking what the surgeon/uros can't see. Has the cancer found its way into the ureters, the urethra, or has it invaded in some place that isn't obvious or been biopsied?

To do the research on BCG + and success rates vs age groups, look for references to Dr Lamm's and Dr O'Donnell's work. To actually consult with them: They are in Ariz and Iowa, respectively. Dr DeWolf, who worked with O'Donnell for years on BCG + INt. is in Boston.

Keep reading these lists I'm just one warrior on this journey with you, sharing what I've found out so far....

Best of luck - let us know how you proceed.
Eric D., 59 year old spouse has TCC(Ta), high grade, 3 TURs and 1 BCG course Dec '05, BCG+interferon Jul '06