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ny825
Posts: 2
Joined: Jun 2010

Hello, I'm kind of stuck. I'm hoping someone out there can help me with my questions. My father is 81 years old. He was diagnosed with RCC about 5 years ago. He told his family nothing and has done nothing about it. Two weeks ago, he was complaining of severe chest pains and was admitted into the hospital. He's been in/out of the hospital 3 times in the last two weeks. He's been in the hospital most recently since Memorial Day. My father refuses to discuss his condition with his family and has asked the doctor not to either. He's had 3 mini strokes since February and they are saying at the hospital that he has plaque in his heart and fluid in his lungs, and he is unable to urinate on his own. I realize that everyone is different and not all the symptoms will be the same, but could someone please tell me what are some "standard" symptoms of stage IV RCC? I'm trying to find out as much as I can about this disease, so that I can give some answers to my mother and my family. Anything would be extremely appreciated...thank you and bless you all!!

donna_lee's picture
donna_lee
Posts: 421
Joined: Feb 2009

Sorry to hear about your dad. From the sounds of things, he didn't want to go thru surgery or even deal with the disease, which makes it hard on everyone. Especially the family.

I was dx with Stage IV, which just means it had metastasized beyond the kidney. Mine had gone to the liver and lymph nodes. I had almost none of the standard symptoms of RCC. Minor hematuria found on a standard urine test; but secondary symptoms of the affect on the liver and pancreas. I just thought I had a gall stone; but the labs/urine test and ultrasound started a series of more tests that led to surgery. Then subsequent recurrences the two succeeding years and more surgery each year. So far, it's been 2 years with No Evidence of Disease (NED).

Difficulty urninating, back pain/flank pain, low abdominal swelling, general achiness are some symptoms-but I had none.

To say Dad sounds stubborn seems like a crass understatement. You know him better than anyone. He's got other complications that are creating additional problems...the strokes, possible congestive heart failure, the need to be cathed. If he didn't have a catheter, I'd say take him home and enlist the aid of palliative care or hospice. Or have him transferred to a skilled nursing facility.

If his Dr. will talk to you, try to find out what he/she thinks is going on medically. Convincing Dad to have lots more expensive tests just to tell him he is very ill doesn't make a lot of sense.

My dad was 83 when he died and if he'd had a choice he probably wouldn't have seen any doctors. With Alzheimers and then prostate cancer, my mom and I made the decision of least resistance. Transurethral Resection of the Prostate (TURP) to "ream" it out to allow him to void more easily, no follow up meds because he got into an argument with mom any time she reminded him to do something, and take him home to let nature take it's course, which turned out to be a surprise heart attack.

Just love Dad. Try to find a support group thru the hospital, oncologists office, community health resources, hospice, etc. You won't be able to cure him, but you will be able to vent your feelings in a safe surrounding and find that others do understand what you're dealing with.

Good Luck. You have Hope. Your dad has given up having Hope.
Donna

ny825
Posts: 2
Joined: Jun 2010

Hi Donna, thank you so much for your advice. My father was discharged yesterday and sent home with a cath. Unfortunately his doctor is obeying his wishes and not discussing his condition with anyone. It's frustrating. I know I can't cure him, but the stress is gonna probably kill my mom. i guess I was just looking for some clues to go by and try to determine how severe his condition is...again thank you for your words of wisdom and for sharing your own story...congrats on being NED these last two years. I will keep you and your family in my prayers...Good luck to you!! Lucy

donna_lee's picture
donna_lee
Posts: 421
Joined: Feb 2009

Lucy-
Now that you know where your dad stands, and the Dr. isn't going to be much help to your cause, it's time to be pro-active with your mom.
Do they both have wills? Do they both have Powers of Attorney? Do they both have current and signed Medical Directives?
Is your mom going to be able to pay bills if/when your dad dies? In other words, is she a part of the finances in the marriage? Is she on checking, savings, vault accounts, or other financial investments. Is she a signator on accounts. Do they have an attorney, personal banker? Does he have pension plans that pay him...SS, Military, Miners Black Lung, Railroad, Union, Teachers, etc.? They have medicare, but do they have supplemental? What about Medicaid?
Social workers-Seniors and People With Disabilities, can be a resource. Hospital discharge planners may be willing to help you. If your dad was discharged with a catheter, there needed to be nursing follow up.
If your mom is reluctant to talk to her spouse about these issues, you have to talk turkey with him. As long as he is still considered competent, he can still sign for himself. Go online and get standard paperwork. Fill in the blanks and have him sign in front of a notary. Most medical offices have someone who is a Notary, or a bank, or even pay for a public notary to come to the house if you have to.
Do you have siblings who can help with this? When I abruptly had to butt into my parents lives, they had none of the above mentioned items. I lived in the same town on the Pacific Coast and my brother lives in Alabama. He backed me up with whatever was necessary.
Hang in there. And give your mom a hug from me. She needs it now, more than ever.
Donna

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