UOAA Discussion Board

Jane, I also go through periods of worrying and fear which I think is normal and realistic when dealing with such an aggressive cancer like bladder cancer. I live on the west coast so I'm not familiar with support groups in your area but recommend contacting all the major hospitals and see what they offer. I've posted a few websites that may be useful if you aren't already aware of them. Some of them are not my cup of tea but hope posting may help you or someone else.

http://www.bcan.org/
http://www.sylvialramsey.com/
http://blcwebcafe.org/default.asp

There are not that many women my age with bladder cancer, and no specific support group where I live, but my surgeon's great nurse put me in touch with a handful of his female patients and it helped a great deal to be able to compare notes with those who know what I'm dealing with.

Even though my lymph nodes were negative after my cystectomy (3'05) every time I have another health problem I wonder if it's back. I have been so sick during the holidays that I had to cancel a trip to see my elderly parents which just about broke my heart. It takes a lot to get me down but the pain and nausea, and inability to eat were pretty debilatating and of course we were all worried my cancer had recurred. So after getting test results back today, as sick as I still feel, we are celebrating my good news of being diagnosed with an ulcer.

It's a real emotional roller coaster ride but I am happy for every day I've got and to be alive and among the complaining.

Welcome and best wishes.

Bea

I only went to one of the sites that Bea listed, but have found this group/board is "my cup of tea." I touched base a few times on the one other site - read a little so I'd realize that I am not the only one with this problem and these thoughts and now come to this site daily because, even when the underlying disease making us ostamates is not the same, I always come away having gotten my shot of positive outlook from the others here.

I did not receive chemo as I was told that the cancer had not spread beyond the structures removed. I spent some time worrying that I should have had chemo; 2.5 years out and I'm more trusting of my doctor.

I, too worried that the cancer was back or had spread (my surgery was 6/4/04) --- I'm pretty certain that it's a nature and probably heathly thought, even though it drives us batty. At least I got the wake-up call and am now trying to take better care of myself in all departments.

I was also lucky enough to see my surgeon/oncologist shortly after the most scary thoughts started . I told him that I was worried the symptoms indicated cancer in my new bladder. In a perfect for me manner, he just said, I took out your bladder, the cancer with it and rhrew it away. Very simplistic, but when I begin to worry, I remember his words AND that I am being screened for cancer far more often than my friends who have not walked this road.

Feel free to send me a PM or e-mail whenever you need.

Susan

Hi Larry, I was wondering if you are still active on this website? My dad just had the same operation with kaiser two weeks ago. I am hoping to get in touch with someone who has had success with the procedure and could give some type of encouragement. Thanks

I am here to encourage you, 10 and 1/2 years after my surgery (with a continent cutaneous (urinary) stoma) at a Kaiser hospital.

My January 2007 post (complete with typos) appears just above your post in this discussion group.


Life is still great - eight years after that post.

Any major surgery requires what seems like a long time. Even after the doctor pronounced me fine, I realized that there must have been some internal abdominal swelling, which had an impact on long I could go between self-catherization , but that, too, resolved.

Feel free to get in touch with me, via the board or a PM.