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What  is  the  prognosis?

11 years 10 months ago #3443 by Patricia
Oh my gosh cat....they sound more like my grandparents when the word "cancer" was whispered. And it also sounds to me like there might be a little dementia from the behaviour of your father...i also went thru that with my own father...very difficult to manage and nobody prepares you for the personality changes and how to deal with them. And in the early stages they can fool just about anyone.
This is the site that i read backwards and forwards when i was first diagnosed...read all tales from the trenches....read everything. Note some of the doctors names and contact them...you can go to their sites and email them or talk to them.
You're doing everything you can and if your mother refuses treatment its not your fault. You've done everything you can. Pray for a miracle because thats what its going to take if she refuses treatment. I'm so sorry. If you ever want to email me please do ..i'll direct you in any way that i can.

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11 years 10 months ago #3441 by catcat
Hi, Thanks to you I contacted my father today. We did not manage to meet, but i took up the subject of denial. He did not admit that. He was extreemly conrolled nearly harsh, and said that he and mom do not discuss the matter nor should I be nosy, mom is ok, and will stay so. And he also said that mom does not want her desease spread out among people.

Ok, it is their decison and I have to honor it, but still I feel left outside. And I do worry. I will try to find out what I can on my own, as i just have to know, because in my philosophy knowledge helps!
So many thanks to you. I have been surfing the net, trying to find knowledge and articles, trying to put the puzzle of my knowledge together but still a lot of questions remain unanswered.

So If you know any good site, please advice me!

All the best to you
Cat

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11 years 10 months ago #3439 by Patricia
catcat....wow it sure sounds like denial....I know...i went thru it for a while myself. I also had the gross hematura and the TUR and it was a very small but virulent cancer which had invaded the muscle. That pretty much said my bladder had to come out.as there was a high chance of it recurring. Its very easy to go into denial as there really is no pain until its too late. It seems like you are on very good terms with your family but they just don't want to worry you and of course its having the opposite effect. I would tell your father and mother how you feel and direct them to this site if they use a computer. If not gather up all the information you can and give it to them. Boston Mass has a chemo/radiation life preserving bladder program but only for T2 cases. Losing your bladder isn't the worst thing in the world. I opted for removal and have an Indiana pouch....my body has completely accepted it and 4 yrs later i sometimes forget its there. All scars are gone...no bulges...and as reluctant and scared as i was to have the surgery...i'm so glad i did. I'm Here!!......Good luck.....

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11 years 10 months ago #3435 by Mike
Well catcat at least you Mother is doctoring and if this helps some here is a story of my wifes Mom (61 yrs old). My wife is a LPN and her Mom never doctored not even for the female things I use to ask my wife why is you Mon like this. Well she ended up getting colon cancer and I'm sure she had to have some signs. It was not till she was getting severe pains in her right side she sought a Dr. finally. Then she had a CT scan and it had spread to her liver and now it was to late. If she had only Doctored she would had a good chance she would be here today with us. I don't know if people just get in denial or afraid of what a Dr. might say but at least you mother is going to the Dr. So under the circumstances I would of been pleased if my Mother-in-Law had been doing this even if she told me nothing. Well God Bless, Joe

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11 years 10 months ago #3432 by catcat
Thank you for your answer. God bless you all!
Yes it is a tough time. Mostly I feel sorry for my father, who answers my questions reluctlantly and controlled . I can sence he is hiding something, not giving space for his worries, just controling himself.

Well, I meet my parents frequently, at least once a week, so I know there is no long hospitalization in this case. Knowing my mom, she is afraid of doctors and very concerned with her body image, so she probably chooses anything if it is bladder sparing.

I have the feeling , like you, that there is something contradicting in the situation, in the information i have versus the diagnosis. When I meet my mom, she seems ok, and in good spirits, but i wonder how much of that is a fake, because I see the effects on my dad, getting more and more tired, tied and controlled. He often suggests short meetings with me over a coffe during my lunchbreak, but he always has to hurry home to mom. Probably this is a sign of her own fears, of the fear of being left alone with the dark thoughts that cannot be discussed.

But Thank you for you answer and your concern, and i would be thankful if anybody would have any ideas about the situation, or could advice me to some good web sites on the matter.


All the best to all of you!


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11 years 10 months ago #3431 by Rosemary
Cat,

I am very, very sorry that your parents have put you in this unfair situation.  Unfortunately, the new HIPPA laws are a two-edged sword, in that you cannot gain any information from any source without the patient's permission.   You are left guessing and frightened and I am so sorry.

How often do you see your Mother?   If the BC was muscle invasive, it would seem that she would have had to have a cystectomy and would have been hospitalized long enough for you to notice.  If she were taking chemotherapy, it seems that you would be able to notice this also.

Sounds like she had BCG's...then a diagnosis of muscle invasion, but no recurrance....in a way this does not make sense.

I know you are concerned, but do not let this drive you crazy.  All you can do to help her, is to receive as much information as she is willing to give, and to take it at face value.  Otherwise, your own health could be affected.  

I wish I could be more helpful, but trying to guess a stage and grade is just impossible (at least for me).

I wish you well. We are certainly here if you need to talk.

Regards,
Rosemary



Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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