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recently diagnosed
My husband (age 56 non smoker – never been sick) was recently diagnosed with bladder cancer. He has had 2 cystoscopies (with turb) and had a tumor removed and the latest cysto indicated a diverticula with the cancer probably inside as well as around. (We are still learning all the terminology) Symptom of blood in urine started in February, initial cysto April when the cancer was diagnosed.
To try to shorten a longer story, we are now in the process of second opinions and have several possible routes. (The last thing his Dr said was to get the bladder out). He has had no BCG or any treatment yet.
One of the main things is we don’t know the “staging”. We don’t know if the cancer is beyond the bladder yet either. We know more tests are in order. What test best helps with staging? He did have a CT (abdomen & pelvis) which didn’t sound good, but his Dr said much of the reading could be attributed to the after-effects of the cysto/turb a couple of weeks before the CT. Unfortunately, we are also having to price-shop; we are self-pay.
Can anyone give me an idea of the costs you have encounted, of bladder removal (if that is the final solution?)
I have many more questions, but don’t want to overwhelm at first.
Thanks for your help -
26 Replies
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Hello New2This,
Thank you so much for giving us an update. I really am glad to hear your husband’s bone scan and chest CT were clear. I bet that was a big relief lifted off of your shoulders.
I will be thinking of you both and you will be in my prayers that his cystectomy will be successful.
Just know, we are here if you ever need.
My heart and prayers are going out to you. Please take care of yourself in the meantime.
Your BC friend,
Alice
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My husband’s cystectomy is scheduled for Aug 6. He is leaning toward neobladder, but is also still researching. His bone scan and chest CT were clear, which was a big relief to us.
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New2This, any new news? I do hope all is going the best it can for you during this time. How is your husband holding up? How are you holding up?
Just know that I am thinking of you and do hope you can post when you can.
Please take care.
Alice
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We appreciate all your responses. Yes, it is Dr. Bermejo. He and his staff are great. Dave, I will be emailing you as we are still in SA this morning, will be leaving to go home for a few days and return Tuesday for the cysto on Wed.
Patricia, we do like San Antonio very much and it is just about 4 hours from our home. Alice, I still have time to worry about you, and something has to be done – of course I don’t know what. I think that is one of the problems with bladder cancer (probably all cancers). -
Oh My Dear Sweet and Uplifting Friend,
I just can’t express in words how you have made my day reading your post. I am sooooo happy and excited for you and your husband that you feel comfortable with the very caring staff that you have described. I really am over-joyed and I feel part of your worries have been lifted. That is such a relief to me.
Thank you so much for taking the time to post and sharing the wonderful news with all of us.
I truly feel confident now that you and your husband are on your way to starting a whole new, successful, and, long-lived life together.
All of my love and best wishes go out to you and your husband.
God Bless you New2This!
Your Friend,
Alice
PS. Now don’t be worrying about me either, I am okay, and I will succeed also. You just take care of yourself and your husband now.
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New2this,
My name is Dave . I had a Studer neo Bladder replacement preformed by Dr Bermejo from the CTRC in San Antonio on Jan 19, 2007 . I am going to assume you are seeing him also. He is a great Dr as well as a great person. Your husband is in great hands there. Please let me know if your husband would like to speak with me about my experience. I would be more than happy to speak with him. You could send me an email and we could set something up. The Dr may have given you some #’s of past patients of his already. He did for me and I called them. It really helps. I was fortunuate that I live in San Antonio and Dr Bermejo was here. Please let me know if I can be of any help for you and your husband.
Sincerely
Dave D.
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Dear New2this…how wonderful that you’ve found such a caring and helpful staff to assist you. They are doing lots of research there. I wonder if you’ve seen Dr. Dipen….he uses robotic surgery for cystectomy…also did his fellowship at Memorial Sloan…..not to shabby. I’m very happy for you. And San Antonio is a great city……….Pat
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We think we have found our cancer treatment home.
We are at CTRC in San Antonio and they are super nice, caring people. The doctor spent a lot of time with us, as well as the medical oncologist, nurses and other staff. They have one administrative specialist who was very instrumental in getting us there, who has more heart and cares so much it is unbelievable.
My husband has had a number of tests already, including a bone scan and is scheduled for a comprehensive cysto next week. He will have another biopsy of the bladder as well as the prostate, which he hasn’t had before.
The doctor has some concern about a lymph node but we can’t be certain about that yet. Hopefully we will know more next week. -
New2This, you truly are a remarkable and strong person. I really admire you for this.
Just know I will be thinking of you both and will have you in my prayers. Post when you can and when you are rested up.
My best wishes always,
Alice
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Thanks Alice – we appreciate your concern.
We don’t yet know more about my husband, except that the cancer is in the bladder muscle. We did not know this until Tuesday.
A lot has happened over the last few days, more than I can go into now, but because we are self-pay, it has been necessary for us to move from Houston to San Antonio for my husband’s care. We were able to do this quickly, thank God, and have an appointment with a new doctor today.
I am thinking about you too, so good luck. -
New2This, Please, if you can, let us know what you have found out about your husband. I truly am wishing you nothing but the very best in this situation.
I really am so concerned! My heart and prayers are with you. Do hope to hear from you soon.
Alice
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Hello New2This:
Just wanted to let you know that my thoughts and prayers are with you and your husband.
I just can’t imagine what you may be feeling at this moment and time, but do hope that you will remember all of us here on the board if you need someone or something.
I will be looking throughout the day to see if you have posted in hopes to hear good results.
My heart felt wishes and prayers go out to you this day.
Alice
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Yes, his appt is the 17th. We are past ready to get this started. Thanks for the thoughts and concerns and we appreciate all the prayers.
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New2This,
If I read and remembered correctly, your husband’s appointment is on the 17th. If so, just know that you and your husband will be in my thoughts and prayers. I am hoping you will beable to share good news with us that same day.
I will be looking forward to your post. Just know, no matter what news you may have, all of us will be here for you.
Special wishes and best of luck.
Alice
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Thanks for the input. I’ll check those things out. We are pretty clueless about this and don’t know exactly where the tumor is/was etc. Hopefully more testing will answer the questions.
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