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Large amounts of blood in urine

3 years 11 months ago #49769 by angelgrl
Thank you for your replies and advice on this matter. I have been reading up on Proton Therapy for bladder cancer and it is saying that it has very similar results as having a RC without having surgery. Does anyone have more information on this type of therapy for bladder cancer? I am making an appointment for a consultation with a Proton therapy radiologist to go over this therapy and to see if I am a candidate. My Urologist did give me this option other than an RC.

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3 years 11 months ago - 3 years 11 months ago #49739 by Plk
HI Angel, I completely agree with Cynthia.Blood in the urine was what led to my diagnosis and I have just had a radical cystectomy with an Indiana Pouch. tHis website and Cynthia in particular,let me know that there is life at fee surgery. mY surgeon believes that I am on myway to being cancer free and that I can live a full life. Find someone who specializes in the surgery you need. My doc does 5-6 per week, and we know that practice makes perfect. hIs team predicted every stage of more overt accurately so far.

gOd bless and good luck and use this site for support, it has certainly helped me.

Plk

PLK in NJ

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3 years 11 months ago #49690 by GKLINE
I am not a Dr and I don't pretend to even play one on TV.
But I have an opinion to share....
Get that bladder out of there!!!!
If your Dr is trying to save your bladder..... get a new Dr.
Unless there are other circumstances other than what you have shared with us.... You need to get rid of this uglyass bladder and get a fresh one.
Too many times I see a person trying to save their bladder when the rest of their body is at risk.

Just sayin. From a long time bladder removal survivor..

George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

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3 years 11 months ago #49679 by angelgrl
Thank you Catherine and Cynthia for the welcome, support and encouraging, kind words. No, I know you are not trying to scare me, I have been thinking about all this ever since my diagnosis last year. Going through emotional issues as well does not help either. I am seeing a therapist however. On top of having cancer, I am blind too. Catherine, you mentioned if I state where I live someone might recommend a good medical facility for cancer patients. I live in San Diego, CA. I am aware of the Moores Cancer center at UCSD, I had my second opinion their last year. The doctor I saw was a specialist in bladder cancer and he informed me that I did not need chemotherapy, I already started chemo at another facility, Scripps Clinic. My current doctor is an Oncology Urologist, however I am not certain how many RC's he has done, he only just started working at this facility for a year now. I am just going through a lot right now, mostly mentally. Thank you for your support.

angelgrl

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3 years 11 months ago #49675 by Cynthia
Angel, Everything Cat said is true. We are not trying to scare you i can understand not wishing to lose your bladder I entered a clinical trial after an invasive diagnosis in 04. It failed and I underwent the surgery for a radical cystectomy. I thought it would be the end of the world but it wasn't my life is full and good and cancer free. Please consider a second opinion at a center of excellence for bladder cancer if you are not already being treated at one. As an example my local Urologist did three to five radical cyctectomys a year the Urologist that did mine did that many a week. Dealing with doctors that are not generalists is ok for most things but with invasive bladder cancer outcomes and options are enhanced when dealing with a specialist.
Good luck and know that you are welcome to be part of our community.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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3 years 11 months ago - 3 years 11 months ago #49671 by CatherineH
Hello Angelgrl... Welcome to our forum. I am very sorry that you had to seek us out due to your bc diagnosis. None of us are medical doctors, but we do have a large collective knowledge of bladder cancer because we (or a loved one) have been there.

No one would opt for an RC if it weren't a potentially life-saving procedure. While it is good news that your tumor has decreased in size, you also need to consider that although it is smaller, it is still there. As long as it is inside your bladder, it has the potential to invade further into the muscle wall, especially a high-grade tumor. From there it can spread to other parts of your body.

I don't intend this as a scare tactic, but only as information to think about. You've probably thought about little else since your diagnosis. It is so very hard to make these life altering decisions. It's not an exact science... we just have to go with what seems best for long term survival.

Also we encourage everyone who is newly diagnosed to seek a second opinion at a large hospital that treats many cases of bladder cancer each year (if you are not already at such a place). If you give us your location, perhaps someone here can give you a recommendation. Again, welcome. Please post any other questions of thoughts you may have.

Best wishes... Catherine
Forum Moderator Team

TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN

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