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The 2nd opinion suggestion

12 years 8 months ago #10265 by Rosie
"Rosie - I can understand you were overstaged and distressed when you were dx'd. But I have only heard of it happening in your case."

Don't you thing it a good thing to let my "only voice" for overstaging be part of this forum? If you read the stats for overstaging of T1 that I linked in my prior post you will see there are many that are also. Let's just agree that a second opinion is good in any cancer diagnosis. Sorry if you take my concern or input as disdain. Many others appreciate my balanced view. Rosie

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12 years 8 months ago #10262 by mznoregrets
Hi thank you to those of you who took the time to understand what I am saying. And thank you for sharing your opinions as to why the 2nd opinion is sound.

Rosie - I can understand you were overstaged and distressed when you were dx'd. But I have only heard of it happening in your case. Please hear me out - You say are here to resonate the need for an accurate dx. But what about all those who have recently found the forum that are suffering because of understaging/not appropriate treatment for stage? MANY. MANY are dying for it. That is very disturbing.
We may be where we come from...but it is not liscence to assume everyone will identify. ie I have urachal cancer - but I am not insisting everyone gets checked for it even tho I am the only one here I know of with it. It sure seems you are very quick to negate the expressed need to avoid understaging.
I have felt the distain of your posts after any one who has invasive bc suggests a 2nd opinion. I'd like to think you may be unaware how intense it has been when a sugesstion has been made. We are here to help people - even from understaging which seems to happen alot.

I do not want to foster contentious feelings, however, I am no longer able to tolerate quietly watching how you have responded to posts suggesting 2nd opinion.

This is why I hesitated so long to express these thoughts - Holly
PS If I have disappointed or offended anyone here - I apologize. If I have misunderstood the posts I am refferring to - please point it out to me in a pm.

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12 years 8 months ago #10257 by momof4
You know what I find strange.

If someone is looking for a new car, or car repairs, major appliance, diamond rings, or anything that is going to dent our pocketbooks. Most of us wouldn't think about going to the first dealership, mechanic, jewelery store, or dept. store right? And if someone asked our opinion (which a lot of times the posts on this forum are asking)on a dealership, mechanic, jewelery store, or dept. store, we wouldn't hesitate to say: "You should go check out _____ they have great prices.

Yet with something as serious as a disease that could kill you, there are those who will put all of their trust in one Dr. or facility! Or better yet those who would say: "I only shop at _____" regardless of the prices.

Second opinions are just common sense. If you are told you have something suspicious in your bladder, and they think it is cancer, enough said. Take their opinion, and go get another. It is simple really. I don't understand why anyone would have a problem with that. It is just about being a good consumer...I am not suggesting "Shopping Around" either but at least 2 corroborating opinions should give you an idea where you stand. I also will suggest that at least one of the opinions come from a urologist/oncologist at a major cancer center. Whether you are Under-staged or over-staged, it is a problem either way But with a second opinion I think both could be avoided to the best of our ability. I would rather be scared to death and find out it was nothing, than to think it was nothing and die....

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 8 months ago #10256 by Zachary

Thank you Holly and as you know my sentiments exactly.
And Zachary as far as the "doctor shopping" goes mine was not to find the dissenting opinion but to find the one who would do the best Indiana Pouch as that was my preference and also to check out other bladder saving options. I would have happily stayed with my second opinion surgeon but unfortunately he did not want to do the Indiana Pouch. So i shopped for a good one..one that did them all the time. Its a little bit harder for the women as most of these surgeons specialize in neobladders for men. So a little shopping is ok.
Pat


That's not "doctor shopping," that's just being a smart shopper and looking for the best available physician and method.

"Standing on my Head"---my chemo journal
T3a Grade 4 N+M0
RC at USC/Norris June 23, 2006 by Dr. John Stein

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12 years 8 months ago #10254 by Rosie
Holly and all,

I have always encouraged a second opinion but for a different reason from yours. I was over staged as a T1 and proceeded down the more involved treatment route because of that over diagnosis. Whenever I see posts on this forum, the great majority talks of understaging yet there is also a very heavy and troublesome route to travel if one is overstated. Which happens often with a T1. I always encourage people to have a second opinion before proceeding with dramatic invasive treatment which may includes further surgery or BCG treatments.. Interesting, we all come from where we have been. You had a very serious and invasive type of bladder cancer that required extraordinary treatment. I, on the other hand, had a very low grade simple type of bladder cancer that was over diagnosed and overstated which put me through extra fear, treatments and uncertainty. I have never PM you about scaring people (as you stated about someone in another thread) nor alluded to that about you nor have I ever discounted the fact of having a second opinion so I know you are not referring to me. Again my encouragement to get a second opinion has to do with making sure the person was not over diagnosed and proposed extensive treatment that was only time consuming, ineffective and destructive to the life and emotions. We both want to save others from experiencing what we have as do most on this forum. So let us all consider the variety and reasons for each of us being part of this forum and just state honestly what we have seen and experienced to give good balance to those searching for answers and concerns. Of note on the bladder cancer web café is this notation T Category variation According to the literature, an initial T1 tumor is DOWNSTAGED to Ta between 35-53% of cases, while between 3 and 10% of them a T2 or higher is considered. This appears as you read down from this link http://blcwebcafe.org/padova1.asp. I don’t, however, want the newly diagnosed to be overly traumatized with the bladder cancer diagnosis as the great majority of us have the type that is non life threatening and non bladder threatening which is something quite different that what others perceive when they are diagnosed and hear the word cancer. We all are here to be of help from our own experience. Rosie

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12 years 8 months ago #10253 by Patricia
Thank you Holly and as you know my sentiments exactly.
And Zachary as far as the "doctor shopping" goes mine was not to find the dissenting opinion but to find the one who would do the best Indiana Pouch as that was my preference and also to check out other bladder saving options. I would have happily stayed with my second opinion surgeon but unfortunately he did not want to do the Indiana Pouch. So i shopped for a good one..one that did them all the time. Its a little bit harder for the women as most of these surgeons specialize in neobladders for men. So a little shopping is ok.
Pat

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