Scared

9 years 9 months ago #46506 by kvh
Replied by kvh on topic Scared
Ahh.. BCG. Ok. I have read about that. Thanks for clarifying. He has a friend who used to be a nurse and wants to go talk to her. I'm not sure that is productive, but it isn't me facing surgery. I wish he'd take more of an active role in all this. This is typically how he faces anything uncomfortable... ignores and and thinks it goes away. It's very frustrating. I left for the day to hang out with a friend and know that a girl from the surgeons office was to call today to set up an appointment to discuss stuff with us (I believe more surgery details - yesterday appointment was kind of a fog so I can't be sure). When I got home I asked him if she called and he told me that the office called but he missed it. How fortunate.... for him... so again, he doesn't have to face it. If I knew someone was calling me regarding my upcoming surgery, I'd have that phone strapped to my ear. It was easier for me to say this man is my husband when I told our story, but in actuality he is my ex husband. This type of behavior is exactly one of the reasons we are no longer married. I just don't understand it. I guess all I can do is be supportive because in the end it is his decision on how to proceed. I wish I could be more of an influence for him to be more proactive but he just gets mad or short with me if I bring up these things. Perhaps he just needs a few more days for this all to sink in? I just shake my head.

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9 years 9 months ago #46505 by rbmc
Replied by rbmc on topic Scared
Excellent words from Sara. I doubt BCG will be on your list, he won't have a bladder to treat! Bacillus Calmette-Guerin (BCG) is used to treat bladder cancer because it stimulates immune responses that can destroy cancer cells within the bladder. It's a tuberculosis bacteria infused into the bladder.
Your concerns, worry, frustration, and questions are valid. I personally got all doctor records and hand carried them to another doc for a second opinion. It's nothing but an appointment to review the situation, and get another opinion for where you are, right now. I did switch, and it was an excellent decision. To be honest, I have no experience going thru what you are facing. This is hubby's life, and I hope he starts to take more of an interest in the situation. It's not "let them operate and it will go away". And he's not too old to just give up. Thanks for keeping us here updated as best you can.

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9 years 9 months ago #46503 by kvh
Replied by kvh on topic Scared
Thank you for the advice...I agree with you and want to discuss seeking another opinion with him but he is one that doesn't talk about it much. This may sound like a silly question, but how does one seek another opinion? Do you just call another doc and make an appointment? Do you call the doc you are seeing presently and ask them to send all the tests/lab reports to another doc? It seems like we are in so deep that it's not easy to start again. I'd be curious how others have handled a second opinion. I am nervous that all of our options weren't presented to us and that none of the things that could go wrong were discussed with us. I did ask surgeon how many of these surgeries he has done and his response was, "lots". He almost seemed a bit cocky and condescending to us and reprimanded my husband for telling the doc something that wasn't the 'correct' story. It set a strange mood through out the remainder of the appointment. This doc doesn't sit right with me and I'm going to mention it to my husband and hope he agrees and will be open to seeing someone else.

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9 years 9 months ago #46500 by sara.anne
Replied by sara.anne on topic Scared
You can be with the best doctor in the world, and if he/she doesn't feel "right" it is NOT right. This is as little tricky for you, since it is your husband who is the patient, and whose decisions count.

Your husband needs to be sure that this IS the right diversion for him. I am surprised that the surgeon did not discuss all the options with you...this is not a "one size fits all." When neobladders work, they can be an excellent choice; however, they do NOT always work as advertised, and this should have been discussed with him.

If he is to have a neobladder, it needs to be done by a surgeon who does as many as a hundred a year. It is not routine surgery. Also, it is not uncommon for this decision to change during the surgery if complications arise...and this should have been discussed with you.

If you and your husband feel that it would be advisable to seek a second opinion, NOW IS THE TIME. The very best that can come out of a second opinion is that you discover that the approach suggested by your surgeon is the best option and you are good to go. However, if it is NOT the best option, now is the time to discover this.

Yes, with cancer there is some urgency. But you/he do have time to get all the research you need done so that you feel comfortable with the decisions. This is a life-altering procedure.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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9 years 9 months ago - 9 years 9 months ago #46499 by kvh
Replied by kvh on topic Scared
Meaning you still have your bladder? What does BCG mean? I am assuming BC is bladder cancer but not clear on the G. i have read up on all the different diversions, thanks so much for sharing. I guess we will just hope we are in the best hands. I thinking it is just all still sinking in.

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9 years 9 months ago - 9 years 9 months ago #46498 by Alan
Replied by Alan on topic Scared
Here is a good site for diversion explanation. As I have been able to retain mine I am not much help beyond that. my.clevelandclinic.org/services/urinary_reconstruction_and_diversion/hic_urinary_reconstruction_and_diversion.aspx

I am sure this will sort itself out for you!

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.

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