newly diagnosed

14 years 11 months ago #2150 by gault94
Replied by gault94 on topic newly diagnosed
Thank you Jean for you're reply.  When I asked the doctor why Chemo when we were told by our Urologist from all the scans, MRI's etc. that it looked like the cancer was confined in the bladder only.  All other test were negative.  The MD Anderson doctor told us that the cancer had to get to the bladder somehow and the chemo will kill all the cancer cells in my husband body that are looking for a place to land.  And that is just how he put it.  He said after the 3rd chemo treatment, they would go in and view his bladder again to see if the chemo is shrinking the tumer.  He also told us that they have had better results with chemo before surgery than after.  The patient is much stronger and cops better while getting the chemo.  The doctor did say that the type of cancer Mike's has is bad, the turmor was large.  We go on the 22nd to meet with the doctor that will be doing the surgery. I'm so hoping he will shed some light on the situation.  
Thanks for talking to me.  Reading everyone's experiences is helping me dry up the tears.  
Lynn

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14 years 11 months ago #2149 by wendy
Replied by wendy on topic newly diagnosed
Hi,

I'm sorry about your news. MD Anderson is a wonderful, great place, however they are strongly in favor of chemo for bladder cancer where you might find a different attitude somewhere else. It depends on the stage, mostly.

In Europe chemo isn't used either before or after surgery unless there was spread. Not everyone agrees on things like this. MDAnderson is cutting edge but that can also mean aggressive.

Most people are not going to argue with a doctor from a place like MDAnderson (or anyplace, for that matter) because we as patients do not presume to be smarter than the doctor...at least at first - many patients do end up having as much knowlege about their own particular disease as the doctors they see.

Still, when someone's life is on the line there is not much of an argument to make. Like I said, it depends on the exact stage, what the path report said. It might have been a rare cell type. Was it transitional cell carcinoma or something else? Sometimes a rare cancer is so aggressive that chemo gives the best odds.

You should come to an agreement and understand exactly why they are recommending pre=op chemo, is it for a clinical trial?

Please consider joining our email discussion list as well, there are many folks there getting chemo or caring for someone who is. blcwebcafe.org/listinfo.asp If you need help write me:
This email address is being protected from spambots. You need JavaScript enabled to view it.

Also, in case you don't get many replies here, you could try posting your concerns to this board under the 'invasive bladder cancer' section, it might get more input there.

All the best to you,
Wendy

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14 years 11 months ago #2148 by Jmema
Replied by Jmema on topic newly diagnosed
Dear Lynn,
You have come to the right place. The support here is incredible and many others more knowledgeable than me will answer your questions. Those of us who are new at this can at least offer you our support and prayers as you go through this journey with your husband.
I was diagnosed with T2, agressive with slight invasion into the muscle. I had a radical cystecomy with ileal conduit because I could not have neobladder because of the location of my tumor. I decided against the indiana pouch because I did not want to disturb that much intestine. At the time they told me that if there was any further spread noted they would do what they called systemic chemotherapy. I had my surgery Oct. 19th. and fortunately it was all contained in the bladder and I only have to have cat scans every year.
Did they give you a reason why your husband has to have chemo first?
I wish you all the strength you can muster and visit here often. It helps tremendously.
Take care.....Jean

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14 years 11 months ago #2146 by gault94
Replied by gault94 on topic newly diagnosed
Hi..  My husband was diagnosed about a month ago.  It started out with blood in his urine. After all the test were completed and a biopsy was performed, the results were he had a T2 tumor in his bladder.  We had our first appointment with a doctor at MD Anderson this week and on Nov. 27th he starts his first of 5 chemo treatments.  I think he's handling it better than I am.  I was told that joining a cancer forum would help me get through this.  All I want to do is cry!  I totally am going to hate seeing my husband go through this.  All of his other test showed that the cancer was confined to the bladder, but after talking to the doctor at MD Anderson, I'm totally confused.  I thought removing the bladder and building him a new one out of his intestines would take care of the cancer.  Then when we were told that he has to go through chemo to kill any cancer cells, that totally through me into shock mode.  Please if anyone out there that has gone through this, please give me some advice on how to be stronge and have a possitive outlook.  I'm sorry if I'm not making alot of sense.  My husband is never sick.   He has always been my strenght.  I want to be his right now and it's killing me.  Please if anyone can give me some possitive advice I'd really appreciate it.  Thanks, Lynn

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15 years 1 month ago #1367 by mikmckna
Replied by mikmckna on topic newly diagnosed
Ed,

45 yr old male, 4 weeks out of surgury. RC w/ Neobladder. I've been scared, thought I made a mistake in my decision and felt like I would be peeing myself forever. All this in 4 weeks! This last week was tough after an infection hit me with fever for several days but despite all this, today is a great day. Suddenly I have control and am doing fine in the bathroom. Just as the Dr and Nurse promised... keep up the exercises and it things will get better. I know I am in for more "challenging" days but today was a victory so do not let the short term struggle rule your long term goals.

Best Wishes,
Mike
This email address is being protected from spambots. You need JavaScript enabled to view it.

Believe in yourself,
Mike
T1-G3, CIS
RC w/ Neobladder 8/22/06

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15 years 1 month ago #1344 by ed_b
Replied by ed_b on topic newly diagnosed
Hello ya'll. This note is from Ed B, who posted here about 40 days ago that he might have cancer. It was me, and I did.

Lot's of research, most of it from this site, some from the Dr., convinced me I needed an RC. Had it done on 8/28. Was home by 9/5, actually started doing some part-time work outside the house by 9/11.

The hospital stay of 9 days was, to say the least, somewhat unpleasant. My wife slept on the couch in the room, which really helped. The IV station started beeping about every 2-3 hours for more solution, problem, etc. The GI tube thing was unexpected and unpleasant. The only nutrients I had for 5 days was saline solution.

But I am now cancer free. The Dr. found cancer in my bladder and prostrate. He removed both. I go in for a check up in two months. I still feel tired sometimes, but am getting stronger every day.

Bottom line, I was as scared as anyone could be when I was diagnosed. The people on this site helped me through with their recollections of their own experiences. If you have this condition, research EVERYWHERE you can and make an informed decision. I prefer the external pouch, ccouldn't stand having to wake nightly to empty an internal pouch. But remember, you, not the Dr. or staff, get to make the decisions. Hope this brief synopsis of what I went through helps someone, feell free to e-mail if I can help in any way.

Thanks to everyone....ed b

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