"partial, word-of-mounth" can cause too much panic and concern as there is a tremendous variety of treatments for bladder cancer depending on type, stage and grade. Also, so much can be lost in the information given to one verbally, particularly when the patient is traumatized from hearing the word "cancer", "malignant" etc. I certainly can equate with your heartfelt concern for your sister and her life changing journey. Hopefully the written reports will give encourangement rather than over concern. Blessings to you and your sister. AND A HAPPY NEW YEAR OF GREAT HEALTH TO ALL IN 2007 and BEYOND!
Yes, I understand that. Thank you. Perhaps I should wait to write until I have such info. Right now, we have no path report--or anything else. I've needed a place to go where people understand. But partial, word-of-mouth info doesn't help much at all--I know the entire family realizes that. It's what I know at the time, not much admittedly. I'll just wait until I know more.
Your sister needs all written reports, pathology, operating room report, physicians report. She can not proceed with any additional treatments etc. until she (and you know) the type, stage and grade of the bladder cancer. She can not go by word of mouth "aggressove form of cancer", or " second urologist said the cancer had invaded the muscle (of the bladder or abdomen? I am unclear)" as you have stated. Written facts is what is needed before any other type of logical and/or informational discussions can take place from those of us who have similiar experiences.
Spoke with my sister, Ava, today. She is having a very good day... she said the Detrol "kicked in"! We spoke about you and this forum. I sent her the link. She hasn't been up to visiting here because she has been voiding every minute and a half until today. Plus, she seemed more receptive to the idea of learning more today.
We had some good laughs, many at the expense of her husband! Not mean!!! He's a real meat-and-potatoes guy, so I told her when I go to CT, I was bringing my very best tofu recipes--just for him! He's an easy mark, and also has a great sense of humor!
Yesterday, 100 Questions & Answers About Bladder Cancer, by Ellsworth and Carswell, arrived. It's a solid piece of work, which I recommended to Ava and her children. I think it's as clear as the info on this forum! And that's a wonderful thing!
In talking with her, I believe she has CIS. Plus tumors.
Today she called the surgeon and made appointments for her presurgery lung and bone scans. We should be finding out soon when those are. Also, the surgeon will perform a cystoscopy early next week. He was unable to do that on Tuesday. We will learn much, much more from him than we did from the first urologist.
Finding this forum was like a miracle when I was first diagnosed. I learned so much and received so much encouragement. I hope you will tell your sister about us and she can join us and she will find she is not alone on her journey. It will give her the confidence and the courage she needs and will answer questions that others cannot help her with except for those who have "been there, done that".
It is a beautiful day here in Connecticut. The sun is shining and it is unseasonably warm. The dome of the Capitol must be gleaming in the sunlight. You will have to come back and visit the mountains. I am sure your sister would enjoy it and she will make you laugh because she is going to find that this journey is not as bad and she thinks it is going to be. Like Clur said....the anticipation is greater than the doing. If I can get just one person to believe that and help them stop worrying so much before their surgery the space I take up on this forum will have been wothwhile.
Blessings to you and yours...Jean
Thank you for the info! I wasn't thinking clearly when I posted. I took notes while talking w/my BIL and he did say the doc said the cancer had penetrated the bladder muscle. I Googled "T ratings, bladder cancer" and got several hits that showed diagrams of the layers that you mention. I get it now!
I read your posts in the thread re "Invasive Cancer" and took notes. For example, the epidural in addition to general anesthesia, dissolving sutures not staples, and leg pain. AND your use of organic foods. I believe strongly in that and have recommended to my sister that she try to do that. Also, filtered water (Brita, for instance). I was really touched by your eagerness to help others via your own experience. It must have been difficult for you to post at times, but what you did made a difference. You are our Angel! Thank you! Continued recovery and health!