Biopsy Positive- Need Info on Neobladder Surgery

13 years 5 months ago #12310 by Sol
Hello my dear friends...............

I am still in shock from the results I just received of my last biopsy. Had some redness and now the results came back that there is a reoccurrence. Although thank god that it’s non invasive and didn’t penetrate the bladder wall, but here is the initial advice from my doctor:

Due to the fact that I had 1 round of 6 BCG treatments, 1st cystoscopy after 3 months was perfect but now the second cysto shows the cancer coming back he is recommending the procedures I was hoping I will never need, "NEOBLADDER SURGERY".

Until today I never really researched Neobladder but I understand that this is probably the best and safest option left for me.

Would anyone know of someone that is in my position and opted not to do the surgery and was successful too stay cancer free?

Does anyone know where I can read in detail what happens from the first day of
a neobladder surgery until someone recovers fully?

What are the worst issues that I will go thru?

How long after the surgery will it take until I am able to return to work?

I thank everyone that responded to me in my previous posts. This has meant so much to me. The information I received on this forum is invaluable.




Sincerely,
Sol,

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13 years 5 months ago #12315 by michstate89
Replied by michstate89 on topic Biopsy Positive- Need Info on Neobladder Surgery
Sol,

Sorry to hear about your results. I believe you had discussed in another post that you were thinking about traveling to Phoenix to see Dr. Lamm (and I think you have communicated with him via email as well). My suggestion is to make that trip (or a similar one to a closer onc-uro facility for a second opinion) and to visit the "invasive" portion to hear from people who have undergone RC. My tumors recurred twice, but all stayed TaG1 - so far have been clear for almost a year (with initial BCG and maintenance), so I cannot say that my experience is similar. I hope to never have to make the same decision you are faced with, but I would want as much info as possible before I did. I would consider second opinions, understaging, and ultimately trying to be cancer free to live as long and healthy a life as possible.

Good luck to you,

Ross

Ross M
TaG1 March 06
Recurrence Jan 07
BCG Maintenance after 6 week treatment

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13 years 5 months ago #12355 by Stephany
Sol, where are you in the US? Have you looked at other cancer centers, too? Do you have copies of all your reports and slides, etc. to take with you?

We are all wanting to help you, and to support you. Keep checking in.

Stephany in Iowa

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13 years 5 months ago #12357 by marie
Dear Sol,
I've been reading your posts and thinking about you...I'm in a similar position - 49 years old and diagnosed in Aug 07 with T1G3 tumors (no CIS) and I've had 2 fast recurrances during the fall...I didn't even really get time to have BCG, although I did have one course of Mitomycin C after my last TURBT (I've had 3 TURBTs). I could opt for BCG right now (and my doctor would put me on the 6 sessions now and every three months - 3 sessions for 3 years), but if I have one recurrance on BCG, my doctor has said that it would be time for radical cystectomy (RC) surgery. This has been the most agonizing month of my life, but I have decided upon the surgery, which is scheduled for Jan 18. I have done a lot of research and I have a file of many of the articles I have read and if you'd like me to send you that file, I will gladly do so. Dan, another member of the forum, sent me an article called "Early Indications for RC" which I could also send you. I conctacted Dr. Lamm as well, and I'll send you his response to me too, if you like.
Every morning for the past month I have come down to my computer hoping for another answer. As Ross said in one of the posts, the worst thing about this disease is that it's a gamble. I will never know if I could have been sucessful in sparing my bladder. If I were to chose the treatment right now I would always be scared that it is progressing even while on the treatment. We are really between a rock and a hard place. Over the fall I have been exercising and eating really well and trying to be as physically and mentally strong for this surgery as I can be. So many people here are helpful. You can go onto my profile on this site and send me a personal message with your e-mail address and I'll send you my info file if you think it would be helpful to you.
Warm wishes, Marie

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13 years 5 months ago #12366 by timb
sol

there is plenty of information about bladder removal in the invasive section that I would urge you to read. I and others like me are living proof that, in the hands of a competent surgeon, the neobladder surgery can have a hugely positive outcome. Your age is also on your side and you have every chance of it working really well for you. I was one in your situation and it's a really hard place. All I can say is that I don't have a regret at all about having my surgery and if you met me in real life you wouldn't know unless you asked. Please pm me with any specific questions or concerns.

all the best

tim

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13 years 5 months ago #12378 by Sol
Ross, Tim, Marie, Stephanie

Thanks for your support........ I can use every bit of it but so far my stomach is turned upside down and the surgery option has not yet registered in my head.

Marie, it will be wonderful if you can send me everything you can so I can make this critical decision in my life intelligently. I will email you my contact info shortly.
I have to give you a lot of credit for having the courage to make this decision. I am not at that point yet. I want to wish you good luck with the surgery on the 18th; I hope it will be easy on you in every way possible. We will all have you in mind in our prayers

Sol,

Sincerely,
Sol,

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