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The 2nd opinion suggestion

12 years 8 months ago #10251 by mznoregrets
Hi Zach,

I admit I only see those "not pertinent to me posts" if I tab to the recent posts tabs. That I cannot relate to noninvasive dx and treatments - I have little if anything to offer other than a warm welcome.

And yes, I do believe there is dissent in regaurds to getting a 2nd opinion. And I am fairly certain I am not the only one who has felt it. I was going to make an apology once for being in the 20% invasive, but a fellow member already had.

Again I concur - If both the 1st and 2nd opinion are similar - one would think it to be accurate. The benefit in additional opinions is lost. My understanding is that most of our dx's come from local Drs who lack in experience with bc and cystectomy,diversions, etc. Once invasive dx is confirmed we seek a capable surgeon and get on with it.

My point is this..BC - whether it be invasive or noninvasive is life changing. The treatment paths are so different that to err in which it is has devastating consequences. On this forum it should not matter what bc you have had when you encourage any bc newbie to get a 2nd opinion on the slides etc. But it has mattered to someone, and I have been distressed over it. It bothers me when I feel the need to suggest a 2nd opinion, but hesitate all because of one person. That is why I got it in the open.

There have been times in my life when 1 person reaching out to me has made a huge impact on my choices. I surely don't want to wimp out should it be my turn to reach out to someone else.
Thank you for the compliments on my contributions - I do try. And I appreciate the off the hook - But the power of 1 voice should hardly be considered silly. It is after all - an election year ! LOL
Best to you and God Bless, Holly

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12 years 8 months ago #10249 by Zachary
Sometimes I skip threads that I feel either I can't help with or that I really don't know anything about--like BCG.

So I must have missed the dissenting opinions about getting a second opinion. Are there really people here who disagree with the wisdom of getting a second opinion?

Just to be totally upfront, I don't endorse seeking endless second opinions in order to finally find a doctor who will tell you what you want to hear. If you don't want surgery and you've been to several (expert and reputable) doctors who tell you that your diagnosis warrants a cystectomy, I don't believe in "doctor shopping" to find the lone dissenting physician. There is a clinic in my own town of Santa Barbara that treats cancer. Their treatment includes: "detoxification, nutritional support, supplementation of vitamins, minerals and enzymes, Chelation Therapy, acupuncture, massage therapy, counseling, Oxygen/Ozone Therapy, vaccines, light therapy, and a truly integrated approach to treating cancer." Now, knowing what we know about bladder cancer--especially invasive bladder cancer--does this place sound like a legitimate source for a second opinion? Only if I had my mind already made up that I didn't want surgery and was willing to grasp at straws.

If you happened to get enough second opinions, you might even find a clinic like this that will treat your cancer with salves and colonics. That's for those who *really* don't want surgery. http://www.cancure.org/donsbach_clinic.htm

That's just my opinion. We're all adults here and no one is our babysitter or guardian.

Getting a second opinion on a life-changing diagnosis and surgery? That just makes sense. My own urologist was gracious enough to suggest the same thing, and even arranged it for me.

And Holly, I don't think anyone has neglected to get a second opinion because you stayed silent. You've been only thoughtful and helpful and informative here, and to blame yourself for someone else's action (or non-action) is... forgive me for saying this... silly. You've contributed far too much good here.

"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 #10248 by Rosemary
Holly,

Thank you for speaking up.

I am proud that you are here and that you have the courage to be yourself.

I firmly stand behind your suggestion and advice that all Bladder Cancer Diagnoses merit a second opinion.

Thanks a bunch for your presence here.

Luvs,
Rosemary

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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12 years 8 months ago #10247 by mznoregrets
Good Morning friends,

I have been praying about how to make this post without upsetting anyone. Recently there have been posts that break my heart, make me angry, and others that have felt like a personal attack. Having searched myself, I feel I can respond rather than react. Please keep that in mind.

I believe ALL bc dx's deserve a 2nd opinion. I encourage everyone to be sure the dx is accurate in hopes treatment will be optimal. The goal is to survive this dx as unscathed as possible, right? My reasons being:
1. Seems some invasive bc gets dx'd as superficial bc - and people die.
2. Some pathology interpretations coupled with the Dr's interpretations is grossly understaged - and people get wrong treatment and die.
The second opinion would hpoefully reduce the above possibilities so more LIVE. Now having said that, I fail to understand why anyone freaks out when a 2nd opinion is suggested.
In my particular case, I was encouraged to get a 2nd opinion by members of this forum. Thankfully I did. BCG would not have saved me - but that is what the local urologist wanted me to do. The 2nd opinion made the difference in right treatment. We have seen many lately who were not so lucky...How can we not suggest seeking the 2nd opinion?
When I have made the suggestion to someone dx'd as superficial - I see posts implying the invasive end of the bc spectrum members are trying to scare the noninvasive folks. That is NOT my intent. I would hate to read the same newbie posting down the road they are suddenly stage 4. The benefits by far outweigh the bad - even if only 1 less dies from being misdiagnosed or improperly treated. So I will continue to recommend the 2nd opinion no matter how bunched up anothers undies get. I don't believe my posts have been insensitive or intimidating or poorly made, nor will they ever be. I just want for more of us to survive this. The 2nd opinion is pivotal to that end.
My final thoughts...Every night I pray for us all, I pray a cure is found and not another bc dx need ever be made - invasive or not. I have cried for those devastated by a T4 dx and the families who will lose them. I am happy for those whose noninvasive bc never progresses or recurs. But I weep for those I should have encouraged to get a 2nd opinion, but I kept my mouth shut for the wrong reasons.
God Bless, Holly

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