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BCG sessions and other fun things to do in your spare time

9 years 1 month ago - 9 years 1 month ago #32610 by Patricia
Whew...glad i'm not on the witness chair...i'd plead "Guilty"
Anyway..insurance...if you have a PPO or Medicare..you can get as many opinions as you want with no referrals.....HBO..kinda sucks...probably need a referral and they're trained to say NO.
Pathology....well you're going to have a team anyway with a top Guy/Gal looking over everyones shoulders..in the case of MD Anderson it is a Gal..thought you'd like that......here you can read about her..She's Janet Bruner and is in Castle Connolly's best doctors...

http://www.mdanderson.org/publications/conquest/issues/2010-spring/pathology.html
At any rate..if you're going for the second opinion they will tell you what they want you to bring...the slides, all scans on disc and written, blood work, whatever you've had done up to now.
If you want to request a second opinion on your slides just call and ask what their protocol is for doing so.
The first appointment is usually just that day...hopefully the slides have been read and they may or may not want to do additional testing but they will let you know ahead of time.
It will be a little different with each institution. When i made my appointment with MSK for a second opinion I was thrown for a loop when Dr. Herr stated that my slides were pathetic and he wanted to do re-turb right away..well 2 days later...i did additional testing the next day and the TURB the day after. That was in the days of it being only $50 to change your ticket.
What haven't i answered? Honestly counsellor i'm trying!!j
pat
OH..forgot..main guy at Hopkins Dr. Johnathan Epstein and he's got a email address......also top doc by Castle Connolly....
http://urology.jhu.edu/jonathanepstein/publications.php

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9 years 1 month ago - 9 years 1 month ago #32609 by Okie
:laugh: I warned you all - you may have created a monster :evil:
I've been known to cross examine witnesses for hours when I get on a roll.

Reading the older posts in this forum has allowed me to get a sense of how each of you have dealt with bladder cancer. Much of what I do for a living requires me to draw emotion and feeling from the cold words on a printed page. I can tell you that reading these posts has shown me that we all have traveled and are still navigating the same path and that the feelings that I am experiencing are nothing new. It has given me a reality check that I sorely needed.

The bottom line is that I don't have the time to continue wallowing in self pity or to languish in a sea of indecision. There are going to be many life and lifestyle changes potentially looming in the near future. I have to take advantage of the resources available to me (all of you) to aid in making these decisions.

Let me see if I can break this down a little. Assume that I have contacted M.D. Anderson and they schedule an appointment for me for the last week in June (one week before my next scheduled cysto with my local doctor). What is expected of me upon arrival? Does this involve more than one day to accomplish? What kind of procedures should I be expecting? Answers to these questions are important due to scheduling conflicts with my court dockets (I currently have 66 Defendants assigned to me, with at least a dozen set for trial between now and the end of the year). While my suprvisor has told me to take whatever time I need, I still owe it to my clients to handle their issues in a timely manner.

Patricia, from reading some of your previous posts and those of Sarah, I know that you guys have put in a lot of time researching insurance issues. What kind of flack can I expect, if any, from my group insurance company for requesting more than a second opinion? It that something that is considered routine?

With respect to the pathologist, are you saying that I could ask a pathologist at Johns Hopkins to examine my case and then send the results to a urologist at a different hospital? Should I be asking about the review procedures? The article you provided compared nonsubspeciality pathologists and subspeciality pathologists. The descrepancy rate being roughly 26% - 33% between their respective interpretations. What I did not see was a secondary review (peer review) within each of the groups. In other words, it appears that only one person is examining, interpreting and reporting findings unless it just happens that the particular Uro is one that also performs their own examination and interpretation. Is that correct, or am I misunderstanding the process? Can I ask that a peer review of the pathologists finds be performed before the information is released to the Uro? Or is that considered bad form? I know that our DNA forensic specialists pitch a fit when we do that to them.

Am I making a mountain out of a mole hill? I don't want to complicate this any more than needed, but I don't want to overlook something that should be addressed.

Thanks for helping me get a grip,

Jim

TURB 10 March 2010 dx small papillary TCC, CIS non-invasive
2nd TURB 7 April 2010
1st 6 BCG treatments completed
cysto 6 July 2010 - "No Recurrent Cancer"
Start 2nd round of 6 BCG 23 July 10

Jim

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9 years 1 month ago - 9 years 1 month ago #32608 by Patricia
ummmmmmmmmmmmm..i got lost somewhere in there :blink:
Yes the top pathologists in bladder cancer are going to be at the top hospitals for bladder cancer ..that being Johns Hopkins, MD Anderson, Memorial Sloan...they've seen it all. Many times your original slides can be sent to their pathologists...no problem. You might get that going right now. As for second opinion be prepared to wait anyway..if you're going for the top surgeon he/she is really busy so it could be 2 to 3 weeks anyway. It probably differs for whatever reason...maybe whoever answers the phone.....but i was able to get into MSK within a week, USC/Norris the following week, Indiana U ..2 weeks....Cleveland took the longest...Mass General (i was exploring bladder preservation......glad i explored but not for me)...MD Anderson never did get back to me for whatever reason.
And i was just interviewing the surgeons at this point as i knew i needed cystectomy and i was able to see them all pretty fast.
Many uro's will suggest sending slides to a top pathologist..and obviously some don't but that doesn't mean you can't. Just make arrangements .have the hospital pack them up and send them off or hand deliver which is what i did. Not one place questioned MSK's pathology..they had tested for everything including P53.
Does that help or confuse?
In addition read this from Uro Today..its free to register and read
http://www.urotoday.com/index.php?option=com_content&task=view_ua&id=2227106
pat

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9 years 1 month ago #32601 by mmc
Wow Jim! Somebody is finally posting longer posts then me! :D

What 12 week regimine are you talking about?

No need to wait to go to UCH or MD Anderson. Take your pick, they are both great. You could even do both. I did. Don't wait, just do.

If they don't agree then take the one with the most expertise in bladder cancer. Hint: This will NOT be your local urologist.

Yes, pathologist is important. Doctors at the top centers also read the scans and view the slides themselves (often).
Yes, the pathologists are better at the major bladder cancer centers.

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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9 years 1 month ago - 9 years 1 month ago #32599 by Okie
You guys are amazing!

Thanks for all the encouragement - it's hard to put into words, but finding this site may just have been my saving grace. I am a very private person and I don't discuss my health issues with very many people. I tend to put out the stock line "I'm fine" and internalize my problems and concerns.

The ABLCS group has provided me with a place to pose questions that I might not otherwise ask, vent when I feel the need, let someone else know just how really scared and bewildered by all of this I really am, and most certainly a place where I don't feel alone and without answers (or other points of view). These things mean alot to me.

So, if I am to successfully come through this rough spot in the road of life, I need more information. This is the thanks you all get for cheering me up!

I have not made a choice yet for a second opinion, although I have more or less narrowed the list to two: 1) Shandra Wilson; and 2) M.D. Anderson in Houston. When should I start putting the wheels in motion to make contact? I have my third cysto on 6 July (first was to remove papillary tumors (2 small ones), scrape CIS and take biopsies; second was to check margins, look for additional tumors; third is my first check up after initial BCG's 1-6. Does it make sense to try and schedule an appointment quickly (as in right after 3rd cysto, or to set it up a couple of weeks after the 3rd cysto?) I don't know what would be the appropriate timing for 2nd opinion.

Now, making the assumption that I get an "all clear" after the 3rd cysto, should I expect to be placed on a maintenace regime and begin the 12 week dance of the laughing catheters? I am confused as to how this is going to work, because if I start the 12 week routine, won't that hinder another doctor in performance of a second opinion? Conversly, won't performance of the second opinion foul up the 12 week program? Seems to me that one or the other has to give way. What are your thoughts?

What happens if the physicians don't agree? Go for a third opinon?

The discussions seem to revolve around the physician, but what about the pathologist? Isn't this the person that actually makes the call as to progression and invasion? Are there rankings for pathologist the same as for the physicians? Which cancer centers have the better pathologists?
I know that the centers use the team approach, but isn't it reasonable to assume that each member of the team performs their function without second guessing by the other members? Or is it the opposite and each member's work is reviewed by the other members?

Mike, you have a valid point about the possible reason for my preference for female physicians. I had never been seen by a female doctor until the issue with my neck. Perhaps it was just the luck of the draw that put me in contact with a female neurologist, but I looked at it a little differently.

First, this person listened to me and my description of the problem, second, this person did not automatically assume that they knew the answer to the problem, third, this person actually took the time to look at the information and films that were generated by the previous doctors before making a decision. At the time I was not differentiating bewteen male and female. I began to think about that after the physical therapy sessions and elimination of the pain.

I think I became more disillusioned and frustrated with each and every male doctor I saw as they would not take the time to do any of the three items I just outlined. Each, in their own turn, assumed that the source of my pain was perhaps a rotor cuff injury from playing sports (I played a trumpet in the band), a nerve injury to my hand/wrist (this opinion earned me the opportunity to have very large needles stuck into my hand and wrist all the way to the bone), nerve damage due to a deteriorated/bulging disk in my lower back (this resulted in first being placed on a rack and streached to the point that I might have been able to play with the Lakers and then later, hooked up to a Tensor to electrically shock the muscles into submission - didn't work but gave me really curley hair for a while), and finally the straw that broke the camel's back: the option of fusing several vertebra in my neck which would have given me the same mobility as the Tin Man in the Wizard of Oz (old version w/ Judy Garland).

As it turned out, the neck injury was a fractured vertebra that completely split and then returned to its exact position leaving only a hairline fracture but the fracture was clearly visible on the MRI. Sadly, none of the physicians noticed the fracture except the female. The recommended treatment was simply physical therapy for about four months. No surgery, Tensor packs or other devices, and I still have complete movement in my neck.

Secondly, I realize that women have a tougher time just staying along side men in most professional fields (glass ceilings) and I think even more so when it comes to medicine (and even more so in the field of Urology). Having said that, I believe that women try harder to excel and expend more time and energy to keep up with the latest and greatest in their particular field, giving them an edge in their overall knowledge bank. I also believe that women are better listeners than men and pay more attention to detail than men.

Please don't get me wrong, I m not saying that male doctors do not know what they are talking about or are unwilling to listen. What I am saying is that it is just my perception that,I believe that the odds of getting a doctor to listen first and act second are greater with a female than a male.

In most situations, one would have the luxury of time to do all the "doctor shopping" one wanted to do. But, as I have read in this forum, sometimes time in not on our side and decisions must be made rapidly and correctly (as possible) or suffer the consequences. I am not ruling out anybody, male or female, as in anything in our lives, this comes down to a matter of comfort level and issues of trust.

Once again I have rambled on and on. I hope that I do not make a pest of myself to you all. It certainly is not my intention. It is just that I have so many questions and fears and there are so many uncertainties that I'm sure I have yet to experience that your input is going to be invaluable to me.

Thank you all for putting up with me. If I begin to make to much of a pain of myself, please just tell me to shut up. Judges do it to me all the time.

Thanks for all your time and help, God bless each of you.

Jim

TURB 10 March 2010 dx small papillary TCC, CIS non-invasive
2nd TURB 7 April 2010
1st 6 BCG treatments completed
cysto 6 July 2010 - "No Recurrent Cancer"
Start 2nd round of 6 BCG 23 July 10

Jim

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9 years 1 month ago #32592 by Patricia
Jim..Shandra probably does the most cystectomys and reconstructions in that area of the country plus if you will notice she studied under Dr. Skinner who just retired from USC/Norris...which most of the uro's regard as the birthplace of cystectomy. Its just a great place. Dr. Inderbir Gill who did my surgery 8l/2 yrs ago laparoscopically has taken over for Dr. Skinner...he is amazing. But there is also another female on staff Dr. Eila Skinner(no relation) who is listed as one of the best docs in the US
http://www.usc.edu/schools/medicine/util/directories/faculty/profile.php?PersonIs_ID=1090
Also there is Sia Daneshmond (male) who was formerly with OHSU and did the majority of cystectomys and reconstructions in the northwest. He was recently appointed by Dr. Gill to take over the late great Dr. John Stein.
http://www.doctorsofusc.com/doctor/bio/view/126223
These are the most personable doctors you'll ever meet.
Anyway on to females.....At Memorial Sloan in NYC is Machele Donat....
http://www.mskcc.org/prg/prg/bios/335.cfm
Those are the 3 that stand out for me..there are only about 300 female urologists in the country and most of them deal with things not related to bladder cancer.
As for the CIS...i think the thinking amonst most uro's is if it comes back after a round of BCG to consider a radical. Its your body...go with the best odds for YOU.
pat

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