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Small cell bladder cancer

5 months 2 hours ago #53231 by Lwsb
Sounds very good! Enjoy your summer.

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5 months 2 hours ago #53230 by Onevista1

That is great news. Had biopsy several weeks ago and all negative. So, no need for radiation. Have 1 more round of chemo starting on Monday and after blood test a couple of weeks later, will start 3 month checkup cycle. Looking forward to getting life back to normal and back to full time work after 6 months.

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5 months 9 hours ago #53227 by Lwsb
Good morning. I had my 3 month ct scan at Dana farber yesterday NED so everything Is okay. I will go back in 3 months and see how it is, if no small cell they will start seeing me every 4 months.

How are you doing?

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6 months 1 day ago #53004 by Onevista1
Agree, we are a small community. I have not heard of any other small cell bladder survivor that has been able to keep their bladder. I am the first for UT Southwestern. Yes, you too keep me posted.

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6 months 1 day ago #53003 by Lwsb
Hi - yes we have lots of dr appointments that is for sure!

I am doing well, I had chemo first then I had my bladder removed on June 2016. I go to ct scans every 3 months and who knows! I am just rolling with it at this point, it is so rare - no one really knows. I did hear from a man who just celebrated 3 years cancer free from small cell, I know a woman who has been cancer free for almost 8 years now.

If they ever do want to take the bladder - my life has not really changed very much. I am active and travel. I was very worried about this but it just hasn't been the big deal I thought it would be. The small cell is the big deal in the whole picture.

Please do keep me updated. So few of us out there. Take care - Laura

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6 months 1 day ago #53002 by Onevista1
Laura,
I am not sure if you were able to keep your bladder. I was fortunate and was. It has actually been going very well for me. I have had 2 rounds of chemo and have 2 to go. The DR's are still fighting over whether I must have radiation also. Urologist says, no. Oncologists and radiation oncologist say, yes. I am having another biopsy done this week to determine if there is still cancer in my bladder. When the dr originally removed the tumor (size of his fist) from the bladder diverticulum he thought he added enough of a margin around it to be safe. The pathology came back that tumor cells were present in the margins. So the debate started. Even after a Tumor Board, they were still debating. Take the bladder, leave the bladder and do radiation, build a new bladder from intestines, bag him for the rest of his life. All not viable options when I could very well no longer have cancer present. For now I live my life through dr appointments and tests. I know the odds are against me for cancer to rear its ugly head again but I can't sit back and let it consume me or my quality of life. Please keep in touch and let me know how you are doing.

I'm convinced some dr somewhere is writing a paper about me but has to wait for the last chapter to be written.

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