What  is  the  prognosis?

17 years 2 months ago #3441 by catcat
Replied by catcat on topic What  is  the  prognosis?
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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17 years 2 months ago #3439 by Patricia
Replied by Patricia on topic What  is  the  prognosis?
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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17 years 2 months ago #3435 by Mike
Replied by Mike on topic What  is  the  prognosis?
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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17 years 2 months ago #3432 by catcat
Replied by catcat on topic What  is  the  prognosis?
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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17 years 2 months ago #3431 by Rosemary
Replied by Rosemary on topic What  is  the  prognosis?
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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17 years 2 months ago #3429 by catcat
What  is  the  prognosis? was created by catcat
My  mother 65, lost a lot  of  weight  and  was  diagnosed  with  urinal track infections  last spring. She  was  treated  accordingly. In May  2006 she  presented  hematuria. She  contacted  reluctanly  an  urologist, and  after  the  cytoscopy got  the  diagnose bladder-cancer. In July  she  underwent TUR, a huge  tumor was removed. She  got intravestical chemotherapy  after  the operation. I  do  not know  hoew  many times. They  also  made  a scan  for methastasis. My  father  happily  announced: Not  invasive. The  patologist  report  arrived  in late  July with  the diagosis that  there  was  muscle  invasion. My  mom  was  to  have  a  checkup  in  September  but  it was  moved  to  August. I tried  to  ask  my  parents, both mom  and  dad separetaly  about  the situation, the  answer  was and  has  been  since that  they  do  not  dicuss  it.

I  know  so  much  that  the checkup  in  august  was  negative, no  recurrence. Ok so  far  so  good, but  after that  it  has  been  silence. They  have  forbidden  the  doctor  to  tell  me the  situation. At  the  moment  I  do not  even  know  if  she  has  aný  form of  treatment. I  only  know  that  she was  to  have  a  check-up  again  in  december, but  i  do  not know  the  outcome  of  it. My  father  is  67 in  good  health and  active. But  he  has become forgetful, unconcentrated  and on. My  mom is  keeping  him  on  a  leach, not letting  him  even  meet  me privately. When  I  ask  about the  situation  and  how  they  feel He  says Great. But I  have  a  feeling that this  is  only  a  fasade  that  is  kept  up. And  I  am  wondering  what  kinds  of  treatments she  get and has. What  kind  of  medications  she  has  to  take and  so  on, Or  could  it  just  be, that she  does  not  take  any. I  feel  very  lost  in this  situation.

I  also  worry  about the  weight-loss she  suffered  from  previously, she  has  gained  a  bit , but  not  much. And  i  have  read  that  this  is  an  indication  of occult  metastasis (?)

I  have no  idea about  the stage  or grade of  the  bc. I  understand  is  has  to  be  T2 if  invasive, but the  grade, is  it  true  that  T2 usually  is grade 3  or heigher???? And  what  is  the  recurrence rate for  this  type  of  cancer, and  the probablility  of  micro metastasis, not found  when  diagnosed? And´how  long can  the  micrometastasis stay inactive and  are  there  any symptoms when  they occur?

I have  been  on  this  website, and  i  have  gotten  a  lot  of  useful  information from all your  inputs , and  i  do  wonder  if there  is anybody out  there  who  would  know something  about  a  situation  like  this. All  knowledge  easies  the  pain and  the  sufferings.

All  the  best to  all  of  you
Cat

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