Stage IV Non Urachal Adenocarcinoma

6 years 8 months ago #52628 by jscales1957
Replied by jscales1957 on topic Stage IV Non Urachal Adenocarcinoma
Sorry you are having this to face. I too recently have a situation where devastating news has hit a parent. One option we had was the bladder removal but Chemo and radiation first (My Mom refuses the Chemo due to bad experiences with Breast Cancer). Surgeon feels w/o removal may not benefit. I do not think she could last through the operation and recovery. Because she has some dementia, I am afraid she will not be able to take care of the bag and stoma once the bladder is removed. She however has no symptoms yet since the tumor partially removed (too deep into the muscle). We are sitting here waiting for symptoms and trying to have as much quality time as possible. I too have no idea what the progression will be and pray there is little pain and suffering.
Prayers for you and your family.

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6 years 8 months ago #52615 by Cynthia
Replied by Cynthia on topic Stage IV Non Urachal Adenocarcinoma

I am so sorry your family has to go through this but welcome to our community we are here if you need us as you go through this journey. There are times that this horrible disease has progressed and the only answer it to provide compfort and dignity. Hospice can and I am sure will help your family provide that gift for your Father. A timeline Is impossible for anyone to provided it depends on so many factors but talk to the hospice staff they should be able to help you know what signs to look for and take your ques from. Our family has been through Hospice several times now and know what a valuable resource they are. A good hospice team will make the family part of the team and will help you with information and practicalities. As an example we as a family and with my Mother-in-law decided that going to the ER and so many doctors appointments were no longer helping but were hard on her. The hospice staff helped us with medical equipment, staff for care and knowledge including how it was to be paid for. I am sure you have talked to them about your choices as a family as far as staying home or going into a care facility. If you have not your family needs to let them know what your wishes are and they will help you get in place a plan. Once you have a plan in place the timeline becomes less important and your family can give yourselves and him the gift of making memories and having time with your Father. Again please remember we are here is you need to vent or have questions we are here.

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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6 years 8 months ago #52614 by Mball1517
Stage IV Non Urachal Adenocarcinoma was created by Mball1517
My Dad is 87 and was just diagnosed with stage IV Non Urachal Adenocarcinoma. He has tumors in the bladder, spine and tailbone, pelvic bones, and it has metastisized to the liver. The tumors in the bladder are blocking his ureters, so he now has nephrostomy tubes so his kidneys will drain. He has no output from his bladder at all. He has had the nephrostomy tubes for 2 1/2 months so far. They recommended no treatment because of the side effects, mainly the chemo will attack his bone marrow and cause infection that he probably would not recover from.

He has begun to have pain in his spine (particularly the tailbone) and is now on 5mg hydrocodone with 325 mg Tylenol every 6 hours.

We are at a loss and can't get any particular information for the progression we can expect. Can anyone inform us? I know everyone is different, but this seems pretty Grimm to me. We have already signed him up for hospice at the request of his dr's but he seems so normal at this time.

Please provide any information you can, no matter how devastating. We just want to know what to expect and watch for.

Thank you. M

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