Looking for Answers

Ginger,

If you look at the time frame 2006 was the surgery...the mets were found the following year...it is now 2008. There is always a risk that it will spread...but in Robins fathers case he got the all clear a couple of times prior to the discovery...This is why follow up appointments are so important...You don't get the "All CLear" until you are cancer free for 5 yrs. His case is different in that after surgery and chemo he got the all clear...the others that you and I were talking about were metastatic immediately after surgery...


Karen

Robin,
This is a situation that makes one wonder. They test for metastisis before surgery with pet scans, chest , pelvis, etc. My husband had his bladder removed Sept. 14, 2007. His paths and everything were clear for cancer after surgery. Did your dad have any lymph nodes with cancer in his path report?? You were at a major facility University of Chicago, generally if metastisis is indicated BEFORE surgery they don't remove the bladder. I am not pointing a finger at any one but it does make one wonder what happened. Protocol at the Cleveland Clinic is tests every 6 months after surgery for any metastisis.
I am not knowledgeable enough to guide you with treatment or pain issues but I do have compassion for you and your family. This has to be a shock to say the least. I am sorry for your situation and will keep you in my prayers.. Ginger

Robin,

First, I know how exhausting this is for all involved...be sure that you and your mother take breaks and naps...kind of like having a new baby in that you should sleep when they sleep.

I am so sorry that your family is going through this...With this cancer it is so cruel...It is such a roller coaster....there have been days that I am sure that my husband can't possibly make it much longer...then he rallies again...I would definitely suggest the radiation...it is such a great pain reliever. Also remember that the chemo is hard to recover from even when someone is not terminal...also the narcotics make them even more tired...It is hard to figure out what it the actual cancer and what is fatigue from the treatments/pain meds...

For the weight issues:
Get some nutritional shakes that have a ridiculous amount of calories...they have them at GNC for weight gain...they have a lot more calories that ensure etc...you can add fruit or ice cream to these to make them more palatable. Don't offer him large amounts of food...small portions several times a day...Don't ask him if he is hungry...his answer will always be "No". just put small snacks at his bedside, or bring something in the room and act like it is for you...ask him if he wants a bite, and 9 out of 10 times he will try it...Very bland foods work best...and protein is very important for energy...yogurt, ice cream. cheese, etc...Turkey breast sandwich... only offer a half of sandwich...when the plate is loaded it is too overwhelming to look at...keep in mind that the narcotics are probably giving him constipation...this will make him even less hungry...keep a canister of pitted prunes by the bed for him to munch on, and check with the Dr about senna laxatives (very natural and they don't cause cramping etc...

Also, ask your fathers Dr if he would benefit from a drug called quadramet...It is used for Bone mets and is an IV Radioactive agent that attaches to the bone and can relieve pain for months...

My husband has had very positive responses from radiation...

Is your father being treated at a Major Cancer Center? They work well in the fact that all of the Dr's are on one team and can come up with a plan together instead of Primary Dr., Oncologist, Urologist, Radiologist...all in different offices...With this approach they all work together...

I wish I had an answer for you about a time frame for his life...there is just no easy answer there. If they are still offering treatments of some kind I tend to take that as a good sign...When they tell you there is nothing else we can do for you, and to call Hospice...you are probably getting closer to the end...but even then who knows...

Wishing you well,
Karen

This is my first post...and here is my story:
My father was diagnosed with bladder cancer in June of 2006. In July of that year, he had his bladder removed and a neobladder was created at the Univ. of Chicago. After recovering from surgery, he underwent chemotherapy. In August of 2007, he was told, "Everything looks great. You've done remarkably well..miraculously well. Go out and live a great life!" Two weeks later, he went to a local doctor because he was having a terrible back ache. Following an MRI and then a bone scan, it was discovered that the bladder cancer had metastasized to his bones. We couldn't believe it!!
He went through chemotherapy again (had a rougher time that time...hospitalized 5 times for transfusions) and then had radiation. He finished up radiation a few months ago. His oncologist wanted to give him a couple of months to try to build up his energy and then check him again. Before the two months were up, we had him back in the hospital. To get to the point...three weeks ago (following MRIs, bone scan, etc.) we were told that the cancer is now in his bones, liver, brain, etc. I read here tonight that metastasizing to the brain is rare...but that is what we were told ("There are a number of substantial tumors in the brain") The oncologist at U of C said a textbook estimate would be that he would have six months to live, but he didn't think he would have that long. (By the way, his oncologist is the most caring physician I have ever met)
Anyway...they are considering either radiating at least one of the brain tumors or using a gamma knife procedure. They say it will help with pain and/or help to prevent blindness, paralysis, etc. This treatment is supposed to start next week. We are in Indiana, about an hour from Chicago, and he would have the treatment here.
In the meantime, my father is growing increasingly weak. He has lost 10 more pounds in the past week. His appetite is slowing down. He often says it hurts to swallow. He has no energy at all. My mother, who is 73, is his caregiver. They just started having a visiting nurse come to the house yesterday (someone will come 3x/week).
I visit daily and talk by phone about 5-6 times a day. Tonight my mom and I had a long talk. We wonder if this extreme weakness is just temporary...or is just part of the downward spiral? We wonder what to expect in the way of condition as his death approaches. Maybe there is not any one answer. Maybe it is different for everyone. I imagine that's true. I just thought this might be a good place to get some feedback.
As all of you who have dealt with this disease know, this is an extremely trying thing to go through and I just don't know where else to ask.
Robin