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Second Opinion Misconceptions for the Newly Diagnosed and Others

12 years 6 months ago #10495 by mznoregrets
Hi Ginger,

This is what happened to me...

10/06 - gross hematuria
11/06 - treated w/ antibiotics by primary dr
12/06 - 1st uro and 1st scope neg.
1/07- met 2nd uro early in the month
- mid month had a ct scan-neg
-2nd uro did my 2nd scope - saw the tumor. had 1st TUR in the 31st. came back as T2. Uro wanted to do BCG. I called the pathologist who said " it is atleast a T2 but exhausted the material - no clean margin".I wanted a 2nd opinion now.

2/07 - slides and tests, reports sent to UW Madison. Met with Dr Gee after they reviewed everything. He said I needed an 2nd TUR for the margins and also for bladder neck biopsies to see if I could have a neobladder. I agreed.
2/14/07 - Had 2nd TUR and biopsies. Found residual tumor - got margins - neobladder was a go. But I lost confidence in Drs staff how all was being handled.
3/07 - had all sent to Mayo's for evaluating. They accepted some of the previously done tests and had me do some over and other new ones.On 3/13/07 they did my RC/neo with Da Vinci.

I do need to point out that there was also disagreement between the pathologists for 1st and 2nd TURs as to if it was micropapillary or not. Mayos agreed it was micropapillary. Mayo's also thought me to be T2 yet I was T3a when they did the RC. The final pathology which included the rare urachal cancer was a suprise to them also.

My lessons learned..
1. CT did not show the cancer - tests may not catch eveything.
2. Pathology is subjective - get a confirming opinion.
3. Drs "practice" medicine - there is no gaurentee. My 2nd uro got his liscence in 1958. Maybe they treated T2 with BCG - but it didn't match protocols I read here.
4. When a Drs staff makes your treatment difficult and the Dr can't fix it - get a new Dr. I had pain and infection for days waiting to hear back from the UW DR - was not ok heading into the big surgery.
5. Even the best Drs and centers can get suprises in surgery.

I shudder to think what could have happened if I had not persued the 2nd opinion or talked to the 1st pathologist. That is why I feel so strongly about getting a second opinion. I have heard many on this forum have regrets that they did not get 2nd opinion, and I have also heard many say thank God they did.
In my eyes - the 2nd opinion reduces the chance of getting over or under staged or treated.

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12 years 6 months ago #10494 by Gene Beane
Karen,
We avoided any chemo or radiation,,, and I am ever so grateful,, but if our surgeon who did the r/c said we had to have it, my confidence in him at the time would make me believe it is true what he says. The Cleveland Clinic has a whole BUNCH of qualified surgeons in urology, I suppose I could have said I want to ask so and so but I assume they all discussed it as I experienced seeing it happen in our case. There is an article in the US NEWS REPORT ON BEST HOSPITALS, AND Cleveland Clinic IS SPOTLIGHTED,,, for anyone looking for help that want to come here... Ginger

Hospital Cleveland Clinic r/c Sept.14,2007
Surgeon. Dr Stephen Campbell and Gill
Gene Beane..66 Ford Motor Company
Engineer, retired Vietnam Vet

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12 years 6 months ago #10493 by momof4
Yes Ginger I completely agree, but we are not only talking about RC. There is chemo vs. radiation or both, Surgery vs BCG, so on and so on. This is in regards to second opinions for everything from superficial to metastatic. I would personally not get undressed (nor would I want my husband to) in front of someone I have never met, had confidence in, and agreed with their course of action. This is to interview the Dr. to see if you even want their opinion and what their thoughts are. Any further testing can be done following this meeting. Then figure out how the PATIENT wants to proceed and with whom. It is true too Ginger that when surgery is involved the surgeon should be working with his own information. Not that of a previous Dr. I doubt they would do an RC with someone elses information anyway.

Just to add to this for those of you reading that are newly diagnosed or love someone who is:

Ginger's husband had his bladder removed in Sept. and is back to work this month. This can be the outcome for you too. Second opinions can make all the difference in the world.

Karen

Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.

Life isn't about how to survive the storm, but how to dance in the rain.

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12 years 6 months ago #10491 by Gene Beane
This is what makes sense to me.......

First opinion, By our initial Urologist, turb stageing
Second opinion, major facility, with surgeon who has done many r/c etc.
2nd turb by this surgeon, of course, how else will he determine if what we have been told is what he believes as well, 2 path reports, 2 different views, whats scary about that. It is comforting to know that the report of having to give up your bladder is not a joke but a realization. A surgeon should never do an r/c on the report of a different Doctor and Pathologist. To avoid any bad info, which happens, be sure. No one ever talked to us other than in an examining room.
Ginger

Hospital Cleveland Clinic r/c Sept.14,2007
Surgeon. Dr Stephen Campbell and Gill
Gene Beane..66 Ford Motor Company
Engineer, retired Vietnam Vet

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12 years 6 months ago #10489 by momof4
I think that letting the newly diagnosed know that a second opinion is nothing to be scared about and:

That ALL of the tests do not need to be redone UNLESS the second Dr. thinks there is something that wasn't done, or was done incorrectly.

Secondly, You can request that the second opinion can be an informal interview where the results of previous testing is reviewed.

You will at this meeting decide with the new Dr. whether further investigation is needed, and how HE would proceed.

You are once again not obligated to do anything with the second Dr. except hear what he has to say.

It is up to the individual patient as to how much or how little they want to proceed with the "Second" Dr.

They may find out just by the "Interview" that the second Dr. completely concurs with the First.

That they like the credentials of the second Dr. better.

That the First Dr. or Second Dr. was a better listener, better qualified, or they felt like a better fit.

You may also find they have a completely different opinion.

Where and how you procede is the NEXT step. Getting the Second Opinion is the first.

I was trying to let people know that second opinions do not have to be as evasive as initial diagnosis.

I am glad you got a second opinion Pat and that you are here today talking about it. Just proves that it works!

Thanks for your thoughts,
Karen

Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.

Life isn't about how to survive the storm, but how to dance in the rain.

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12 years 6 months ago #10487 by Patricia
I think Holly covered this topic quite nicely on another thread.
Secondly with a second opinion you want to make sure you go to someone who is not using the same pathology lab as the first surgeon.
What my second opinion surgeon needed firstly was my slides from the TURB, and all the written reports, CT scans, chest x-rays, everything. And my consultation was in an exam room. Unless they have the slides from the original TURB they can't determine if enough specimen was taken out or is even viable. As it happened in my circumstances pathology said it was a useless sample and i was scheduled for a second TURB within 9 days of my first TURB. This was at a major cancer center by a very major surgeon and it probably saved my life. I also consulted with another surgeon at USC/Norris who reviewed everything and also examined me but did not question the results of Memorial Sloan.
Second opinions are always best from a major cancer center or university affiliated hospital in my opinion.
In the UK there might not be those options?
Pat

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