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Bladder-Cancer Sparing Treatment

10 years 11 months ago #12141 by maxmag
Hi Cynthia,
Thanks for your reply. Lots of info there.When you research around,sometimes you
see these "blurbs" that don't give a whole lot of details.You have cleared
up some things in my mind.
I'm always looking around to see what my options might be.At the moment,I am
getting a bit nervous about a TURBT coming up on 1-8-08.Last scope revealed
2 tumors(This is a recurrence..3 months prior I was clean)
This disease is enough to drive you crazy,If you let it.
Perhaps I'm getting ahead of myself(Thats what my wife says)
One hopes for some kind of research breakthrough that can help all
of us.Anyway,I'm off to preop on this coming Wednesday..We'll see
what happens.
Thanks so much for your input..and your patients listening to me.
It's good therapy just to talk to folks that know how you feel.
Best wishes for a HAPPY & HEALTHY NEW YEAR.
Max


Max
Age 70
Ta G2
Dx March 2007

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10 years 11 months ago #12111 by Maria

Hi Max,

This is not a new treatment path it has been worked on for years at different centers. It has different agents and protocols but I know that at MA. General Hospital they have been doing it for over ten years plus. I personally went through the clinical trial there for bladder preservation .04-.05, consisting of forty trips to radiation and twenty to chemo. using three different drugs including the one mentioned here, over a nine month period. The first round of chemo. could be called chemo lite it is to help the radiation work. The second was systemic chemo to get any stray cells.
Now the pros and cons. While there are good numbers as far as those that complete the therapy who retain their bladders the question of what the numbers are in the
years to come are not as clear. I was one that completed the trial with my bladder intact but lost it less than a year later through repeated recurrence. There are also other issues such as radiation damage to the bladder itself causing inconstancy issues as well as neuropathy from the chemotherapy. Also after radiation most Uro surgeons are very resistant to doing any type of diversion other than an external appliance. So for the ones that do bladder preservation who never see a recurrence and do not have side affects it is a heaven sent. For those it does not, it leaves them with a whole new set of problems that they would not have faced if they had gone directly to RC. The day they can predict who will do well and who not will be a pivotal day in the protocol. The bottom line is that there is no free ride in the bladder cancer game yet.

Chin up and straight forward


Cynthia, I recently seen a surgeon who asked me to decide between 25 - 35 radio and chemo or chemo surgery. He did not directly state to me he was thinking of bladder sparing. I asked him for evidence based research to support his theory. He could not provide any and nor did he bother explaining anything else to me. He just assumed I would accept his opinions. The consult was the worst I have ever experienced. Therefore, I am seeking second opinion.

If it was not for reading your past posts regarding your experiences and outcomes and by doing my own research and additonal support from this forum, I have to say the thought of bladder sparing would have appealed to me. Thank you for the information you have provided.

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10 years 11 months ago #12106 by Cynthia
Hi Max,

This is not a new treatment path it has been worked on for years at different centers. It has different agents and protocols but I know that at MA. General Hospital they have been doing it for over ten years plus. I personally went through the clinical trial there for bladder preservation .04-.05, consisting of forty trips to radiation and twenty to chemo. using three different drugs including the one mentioned here, over a nine month period. The first round of chemo. could be called chemo lite it is to help the radiation work. The second was systemic chemo to get any stray cells.
Now the pros and cons. While there are good numbers as far as those that complete the therapy who retain their bladders the question of what the numbers are in the years to come are not as clear. I was one that completed the trial with my bladder intact but lost it less than a year later through repeated recurrence. There are also other issues such as radiation damage to the bladder itself causing inconstancy issues as well as neuropathy from the chemotherapy. Also after radiation most Uro surgeons are very resistant to doing any type of diversion other than an external appliance. So for the ones that do bladder preservation who never see a recurrence and do not have side affects it is a heaven sent. For those it does not, it leaves them with a whole new set of problems that they would not have faced if they had gone directly to RC. The day they can predict who will do well and who not will be a pivotal day in the protocol. The bottom line is that there is no free ride in the bladder cancer game yet.

Chin up and straight forward

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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10 years 11 months ago #12098 by maxmag
Hi All,
Has anybody seen this video?...http://www.webmd.com/video/bladder-cancer-treatment
What do you think?
Max

Max
Age 70
Ta G2
Dx March 2007

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