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37 year old desperately trying to save bladder

10 years 11 months ago #12348 by driscolls
Sol,
I did not mean to frighten you with my story - only to make sure that you try to make the right decision in your treatment.

To answer your questions: 1) My dad was 63 years old at diagnosis.
2) Radical Cystectomy (RC) is the surgical removal of
bladder
3) The cancer spread to his rectum,pelvic bone and a tumor
near his stoma

As I said, EVERY case is different, so do your research and stay on top of your treatment options!

Keep me posted,
Debi

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10 years 11 months ago #12313 by Sol
BJMAC,

I want to wish your husband a quick and speedy recovery.

Sincerely,
Sol,

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10 years 11 months ago #12312 by Sol
Hi Ross,

Thanks for your reply and kind words but unfortunately here is what I just posted under a new post called:
Biopsy Positive- Need Info on Neobladder Surgery


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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10 years 11 months ago #12256 by michstate89
Sol,

Good luck with the biopsies. As you can tell, everyone has their own experiences with this disease. I think it is great that there is a forum like this so that we can all connect and share - good place to start for any treatment option. My cancer was TaG1 and recurred twice before I had any post-op mitomycin and BCG treatment. I also had red spots after the BCG - all negative on biopsies.

I hope you don't have to make a decision about your bladder, but always keep second opinions in mind and visit the "invasive" portion of this forum for info about RC's.

Ross




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

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10 years 11 months ago #12255 by Julie
Sol, right now my husband is frail after being treated for MRSA and the effects of BCG which together formed an abscess behind his left kidney. In 2001/02 he had two courses 8 weeks each of BCG then BCG via nephrostomy tubes once in June 2007.

He still has his bladder and there seems to be no need to take it as the CIS is in the upper ureters and renal pelvis so if surgery would be the answer the kidneys would have to come out. He decided to opt for treatment of the site but in the meantime the lung nodule appeared which was a metastasis from the bladder cancer. The PET scan did not show any other sites of cancer so the oncologist recommendation was to keep a watch on him as any chemo right now could not measure any success as there is no tumor to measure. Plus the chemo would be too difficult for him right now due to the rest of his health.

Volunteer Coordinator
ABLSC

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10 years 11 months ago #12248 by bjmac
Hi Sol

I had 10 years of 3/6/12 monthly checks after having BC diagnosed and two courses of BCG - with no side effects - in the last year before I had the RC. When I was first diagnosed I was not offered the BCG treatments (I don't think they knew about it then). When I was in hospital for my last check before my RC I spoke to some other urology patients who were just being diagnosed and they were then given a BCG dose at their first check. I don't know if this would have changed things for me but often wondered if I had been able to have BCG earlier it may have got rid of the cancer.

The reasons given to me to have the RC were to proceed before the cancer invaded the bladder wall.

I have had a lot of help from this forum and wish I had found it earlier. I would have liked to have used it to help make my decisions - not that I am unhappy with the way things have gone now.

As someone else said - everyone is different - and the disease can also affect everyone in a different way - but lots of us have survived!!

Good luck

BJ



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