New to group - Terminally ill father w/ bladder mets

I think Hospice is probably your best bet...They strive to alleviate pain...If that is the biggest issue I suggest getting the consult ASAP...I don't know anything about feeding tubes...but I would ask a lot of questions of the Hospice Staff...They will set up for an RN, CNA for personal care, as well as a whole staff of Dr's to help achieve pain management...If you father doesn't want any further treatment that is his choice, but he shouldn't be expected to be in such pain...I do know they can give laxatives through feeding tubes, you may want to ask if this is an option...

I also remember Wendy saying something about her sister and a feeding tube...I hope she chimes in here...

I hope that the Hospice Team brings your father and your family some peace...

Karen

Hi Julie and Karen,

Thanks for your thoughtful replies

My parents are in Lodi, California. I am in Sacramento, about 45 minutes away.

Yesterday, he went to the Ben Schaffer Cancer Institute. The referral to Hospice is ideal, I believe, because it is the opinion of multiple treating physicians that there is no surgical option. They had suggested chemotherapy should he ever become strong enough. He is becoming weaker by the day. He refuses treatment with chemotherapy or radiation, stating he would like to live out the rest of his life in peace. That would be nice, but trying obtain breakthru medicine has been somewhat challenging.

Most of the doctors agree that his bowel obstructions prevent the use of too much narcotic. However, this is why he is being fed intravenously and had nothing by mouth for weeks now. He is 5'10 and now weighs 116 lbs and is steadily losing weight. He has not had a bowel movement since he has been put on IV feeding, and the doctors seem to think that he should have anyway (citing that most patients "cheat" nad eat anyway), and that they dont' want to give him breakthru medication in case he is constipated. They give him mag citrate to clear the constipation.

Does anyone khow if bowel movements are to be expected in a patient with a feeding tube? If so, then perhaps that is contributing to his pain. the home health nurses seem to think he shouldn't necessarily have a bowel movement. This is why things are so confusing.

Dad is planning on just removing the feeding at some point. He talks of ending his own life at times because he is so miserable. I just feel awful for him. He does not talk, eat, he can barely walk.

Thanks for all the information. I sincerely appreciate it!! Sorry if I rambled on and on. It is good to get this off my chest!!

Kay

Kay, when they tell you he has bladder cancer what they mean is the original cause of the metastasis is bladder cancer. For example my husband has tumors in his lung and ribs but the cancer is Transitional Cell Carcinoma which is what Bladder Cancer is.

Almost the first thing I learned when we found out my husband had Stage IV Bladder Cancer is that it is considered incurable but that it is also treatable. That means either chemo, radiation or surgery can be used. Are you saying the Doctors are refusing to treat your Dad or is your Dad not wanting any more Treatment?

As Karen said we need some more information to able to assist you. Julie

Kay,

Whew!!!!Your Dad has been through it hasn't he....I am so sorry!!!

Are you in the US? Has your family gotten a second opinion? At the very least for the Pain Medication issue...On one hand the Dr. is saying that your father is terminal...that the cancer has spread...he is obviously in pain...but won't prescribe pain meds???Something sounds wrong here...

If you can give us some information as to where you are located...I am sure that someone here can give a recommendation as to where is the best place to go...

Prayer and Best Wishes,
Karen

Hello all,

My father was diagnosed with bladder cancer about five years ago and subsequently had his bladder and prostate removed completely. He had a series of bowel obstructions that landed him in and out of the hospital every few months in those years said to be from scar tissue from the surgery pulling the intestines and cinking them. They would use an NG tube and clear the bowel thru the nose.

He then developed some kindey infections and was hospitalized again. The hospital finally did a PET scan, and it turned out that the ureter that remained from the previous bladder surgery was malignant, and it had spread to the liver. That was all we found out. He was then discharged home, but this time with a feeding tube due to being so malnourished from the blockages, we were told.

I guess I am writing because it has been extremely frustrating to find out just what is wrong with him! All these years have been a wild goose chase for a clear diagnosis and additional testing that just wasn't done.

At the last hospitalization, one of the hosp. docs told him frankly he had a month to live and that surgery was not an option. His urologist continues to follow him for this cancer. Dad is frustrated that he cannot even get an answer as to what exactly he has cancer of. The urologiset is scared to prescribe breakthru pain medication, and dad is nauseous and in pain 100% of the time. He is talking about taking out his PD feeding tube to get to the end of this already.

I thought perhaps he needed to talk to someone who could explain this all simply to him. We made an appt for him to see an oncologist. I had to beg his urologist for this referral for some reason. I even asked about Hospice, but they didn't think it was time yet.(?)

The oncologist today said next to nothing today as well. They just couldn't seem to give him any straight answers and spent the appointment catering to me instead of focusing on him, for whatever reason. This was as soon as they realized that he had not come for radiation treatment, but merely for some information and for pain control. He decided a referral to Hospice was the best course, and he sent us on our way. We were all dumbfounded because we still didn't know what had happened or what the likely prognosis was, and most of all, what was going to happen next.

I called the doctor back that afternoon and asked him very directly "what does my dad have cancer of right now". His answer was "his bladder." That's great, but his bladder was removed five years ago!! Frustating!! When I asked again, he said he didn't know. I asked what his pet scan result said, and he told me that it simply couldn't find every bit of cancer there is. After going round and round like this, I found out that he has cancer of the "lymph nodes of his back, bladder (?), abdominal cavity, and liver." I had to ask how long he had to live, and the doctor said he didn't have any good news for me. No kidding!! I told him I wasn't expecting good news, just some facts. He then relented to tell me that dad has no more than six months, and that is an optimistic guess. Jeez.

Has anyone else had this much trouble getting someone to answer questions, give information, and prepare the family for the next step? My mom is just a wreck with all the conflicting information. Does anyone at all have any suggestions on what to do next?

Thanks so much. Sorry this note was so long.

Kay ~