Stage IV questions

[Carol's sister]

My sister is Stage IV  and extremely ill. We, her family, are trying so very hard to give her whatever help and support we can but its very difficult.

The cancer is in her bones, liver, bladder, lungs and throught her body. She has had repeated stents in her one ureter. Both hips  replaced two years ago. Dry unproductive cough that wears her out. Severe unrelenting pain in her back and legs, she takes narcotics for that. She is so weak and mostly sleeps. She eats little and has lost so much weight. She is in deep denial, refuses hospice or other help.  When she was still able to get out of bed by herself, she often fell because she is so weak.

She has recently found new lumps under her arm and high on her chest. Now she has a hole in her mouth that goes all the way to the bone. Her doctor says she should not worry about them.

Her oncologist  just keeps saying he has other drugs he hasn't used yet and that she should just trust him. He admits that the tumors are bigger with each visit but poo poos her husband's concerns. He will not give her or her husband a straight answer to any question and her husband feels lost. I think all he cares about is that she's breathing so he doesn't have to admit he failed. This week, she is starting on yet another chemo drug.

Is there any way we can learn what to expect in the near future as well as long term?  How can we find out what her life expectancy really is and how to help prepare her for the end? How will the end come? All at once or just this slow miserable decline?

Any internet links would be greatly appreciated. We have all searched repeatedly but never really find the kind of detailed information we need so desperately.

I'm sorry this is so long. I hope people here will speak frankly and honestly because we all feel the time is long past for ignoring or pretending its not really so bad.

[rcmaxson]

[rcmaxson]

I M SURE YOU NEED TO FIND ANOTHER DOCTOR OR FACILITY TO GET THE ANSWERS YOU DESPRETLY NEED SOUND TO LIKE HER DOCTOR IS MILKING YOUR LACK OF KNOWLEGE TO MILK HER FOR THE MONEY ONCE A PATIENT HAS TUMOR SPREAD THROUGH OUT THE BODY AS YOU DESCRIBE THERE SURVIVAL  TIME IS SHORT , IN THE MEAN TIME FIND A TRUSTWORTHY DOCTOR OR CANCER TREATMENT FACILITY TO GET HER THE RELIEF SHE SO DRAMATICALLY NEEDS .IF SHE WERE MY WIFE (AND MINE HAS CANCER ALSO)ID HAVE THE A .M. A.( AMERICAN MEDICAL ASSOCIATION) AND THE INSURANCE COMISSION INVESTIGATING THIS DOCTOR AND  POSSIBLY BRING HIM UP ON CRUELTY CHARGES. AFTER GETTING HER THE HELP YOU WANT HER TO GET. GOOD LUCK  GOD BLESS AND MY HEART IS WITH HER AND ALL OF YOU

[Carol's sister]

Thank you for your quick answer. How I wish that were an option but Carol refuses to even consider going to a different oncologist.  Just as frustrating is that her urologist always defers to her primary care physician (the onc) so he won't talk either.

Her husband and the rest of us know her time is "short" but does "short" mean another four years of this torture? Four months? Four weeks?

I know no one can foretell the future but surely there is some way to get a better idea of what's ahead of our family?

BTW, can anyone tell me if there is some trick to post a question to the doctor's forum? Is it ever really open to new questions?

Thank you again.

[bdrive]

I feel your pain. I am a nurse now afflicted with stage 4 breast cancer with mets to the omentum; at this point i am still feeling fairly well. I agree that she should get another doctor, but unfortunately this may not prolong her life but will make her more comfortable. i have a few web sites that may be helpful to answer the dying process etc. try medscape.com/viewarticle/542262 . there are several articles there on physiologic changes and symptom management,as well as Two roads to death which describes what to expect. also go tohospicenet.org/html/dying_guide. ther are a number of helpful articles there. my thoughts and prayers

[boninclyde]

Please go to breastcancer.org and join the discussion board there. It is under community upport.