What can we expect in the final stages of renal cancer?

9 answers | Last updated: May 25, 2017
A fellow caregiver asked...

What can I expect in the final days with end-stage renal cancer?
My Dad has been battling renal cancer for three and a half years now, and has lived two years longer than they said he would. But now his lungs are needing to be drained every week and his breathing seems to be getting more difficult. The cancer started in his kidney and has now spread to pretty much every where, but most of his symptoms seem to have to do with his lungs. I can't get anyone to tell me what to expect or how long he may have left. At this point he sleeps more than he doesn't, his appetite is very small, he has a persistent cough, and is always in pain and very tired. All I need to know is if it is almost over, I hate watching him suffer and I don't know how much more of this my poor mother can take. My mom has entered the denial stage so I need to know what to expect in the end, because she just keeps telling me that he is having another bad day and he'll be better soon. Can you please help?

Expert Answers

Bonnie Bajorek Daneker is author and creator of the The Compassionate Caregiver's Series, which includes "The Compassionate Caregiver's Guide to Caring for Someone with Cancer," "The Journey of Grief," "Handbook on Hospice and Palliative Care," and other titles on cancer diagnosis and end of life. She speaks regularly at cancer research and support functions, including PANCAN and Cancer Survivor's Network. She is a former member of the Executive Committee of the CSN at St. Joseph's Hospital of Atlanta and the Georgia Chapter of the Lymphoma Research Foundation.

You've been so strong for your family, while several things are going on. Let's address each one.

First off, your dad's situation: From what you've told me, it certainly sounds like he is approaching end of life: sleeping more than awake, limited appetite, end-stage renal disease. Your main role now is to keep him comfortable. Do not force him to eat or drink more than he wants, even if it seems like nothing. You may see further changes in breathing, skin and nail discoloration, and mental disorientation while the disease continues to progress. His body is slowing down.

If he says he is in pain, ask him to point to where it is, describe if it's a throb or a piercing pain, and when it happens. With this information, you should be able to assess if you can help manage it with Motrin or ibuprofen, or if you'll need to ask his doctor for something of prescription strength.

As for the lung drainage, you may need to have a frank (and difficult) discussion with your mom about that. Which of you have Healthcare Power of Attorney to help make his care decisions? Have you two talked about his Advance Directives? That is, do you know what your dad's wishes would be at end of life? For example, if he has a Do Not Resuscitate (DNR) order in place, you may want to rethink drainage and begin palliative care (this is the end of curative care and continuity of comfort care) to instead ease him to a peaceful passing. This is not taking his life, only easing his suffering. I know this sounds harsh, but remember, it is the cancer that is taking his life.

If he does not have a DNR order in place, you may want to consider doing so. Here's a website to help: www.nlm.nih.gov/medlineplus/advancedirectives.html. If he is still lucid, you will need to discuss this as well as other end-of-life decisions. This is so hard -- I know from having been through it with my father -- but you need to understand what he wants and act as best you are able.

To help your mom, gently include her but know that you cannot force her out of the denial stage. It has to come from within her. No doubt she has hope -- she has seen him surpass a prognosis before, so why couldn't he do it again? You know the situation is different now, but it may seem the same to her.

Both you and your mom are prime candidates to experience anticipatory grieving, when you are grieving for what has already happened and that you fear will happen in the immediate future.

Be aware that you are also a prime candidate for Compassion Fatigue, where caring stresses begin to have a measurable physical and mental toll beyond the emotional toll. Some caregivers have even ended up in the hospital, due to malnutrition, lack of sleep, dehydration, and broken bones -- all related to caregiving responsibilities. We obviously want to avoid this.

Here are some ideas: Delegate as much as possible to give yourself a little breather. Involve people to help and listen. Do you have a chaplain or social worker or best friend that will let you vent? Ask your oncologist's nurse, nurse practitioner or office manager for suggestions on what public services are available to help as well (like caregiver support programs, free shuttle services, prescription delivery, etc.).

Make sure that getting a good night's sleep is a priority. You may have to give some things up for that, but the rest of you can function better when you're a little recharged.

As another resource, my website (www.CompassionateCaregiverOnline.com) has handbooks on "The Journey of Grief," "Understanding Hospice and Palliative Care," and "A Cancer Patient's End of Life" -- all three of which could help you.

Hang in there; his situation will not last forever.

Community Answers

Privatedetail answered...

Thankyou for your answer to final stage renal cell cancer . Our younger sister was diagnosed with late stage 3 in July of this year . She is 46 yrs old and had no prior history or family history , this has been a shock to all our family and answers have been hard to come by with the new privacy laws . Her condition has been downgrading ever since and we are caring for her at home . Everything you described for end stage with the exeption of her lungs is accurate and I am relieved to have professional answers to a lot of the same questions . You have made it easier to explain these symptoms to my family and given me confidence to help in caring for her , Thankyou sincerly Kelly Stronach

Honoring dad answered...

This is more of a question than answer. My father in law is in the end stages of renal cancer living with my wife and I and our family. It has been a wonderful blessing for us to care for him during this stage of his life. He is exhibiting exactly what you stated. Some thought it was the meds but it is clear that it is the cancer. My question is how much longer do you think we have? I am not asking you to be God because He is the determining factor to calling my father in law home but from human terms can you estimate a range?

I personally don't think there is much time left but I would appreciate any information you may be able to provide.

Pastor's wife answered...

My husband was diagnosed with Renal Cell Carcinoma in September of 2009. At that time is was discovered to have also metastasized to his lungs. He has long outlived his original prognosis of 2 months to a year, however now he has recently suffered two brain lesions, which were removed by cyberknife (radio surgery) and was sent to a rehab center for therapy on his left leg and arm, which were the areas most affected. During his therapy, which was going well, he experienced another localized seizure in his left leg, which put him back to where he started. A few days ago, he developed a cough which became worse with each day. He was prescribed cough syrups, which would temporarily help him to calm the cough and sleep. He is sleeping much more than he is awake lately. He is on Dexamethazone, a steroid to control any swelling that might have resulted from the cyber knife procedure. However, this steroid raises one's blood sugar and he has been put on small doses of Insulin also. In addition, they added Keppra which is an anti seizure med to stop any future seizures in his leg. I believe my husband is terribly over-medicated. He was in wonderful spirits when he entered the rehab. Talking to everyone about the healing power of God, he is a Pastor and we believe this cancer can be healed by God, if He sees fit to do so. Man has no cure for this disease. Last evening he was put on oxygen, not a large amount but enough to ease the coughing. Today, we are having him checked for pneumonia, which is a better scenario than choking from spreading tumors. I believe they will find fluid and be able to treat that. He is also to have a CT scan in the am to see if the tumors have spread further. My husband is very cognitive and understands the ramifications of this disease. He is determined not to entertain any more chemo, as they have no cure and he does not wish to spend his remaining time being chemo sick. He is scared also, as he is human, just as I am scared. I do not want to lose him, not now, not ever. We pray each day for recover and supernatural healing, and we add that we will embrace the Will of God no matter what, even if He chooses to take him home. This is not an easy thing to do but strange as it may seem, it gives us both comfort knowing that one way or the other, he will have Jesus' arms around him, either in recovery or in heaven. Whether or not this is a help to anyone, I don't know. I can only say what has kept him going for more than three years are three things, in Scripture it says, for anything at all, 'seek ye first the Kingdom of God' Also 'Pray without ceasing' which means with your thoughts as well as words, and often. 'only believe' which is a showing of faith, and never give up the race, race without fainting' Right now he stands on God's promises, one of which is Jeremiah 29:11, 'For I know my plans for you, and they are plans to prosper you and not to harm you. Amen

A fellow caregiver answered...

I just want to let you know, I'm praying for you and your family. I lost my dad almost almost 14 years ago to kidney cancer. He was only 48. The end is tough. You all have to stick together and support each other, no matter what it takes. My mom took it very hard and it almost tore my family apart. It took some time but, I was able to bring everyone together again. Just keep your father as comfortable as possible. It's hard to determine when the Lord will take him home. Accept everyone's different ways of grieving. My father fell into a coma before he passed. There's no way to prepare for the pain you will endure. Just remember, your father will no longer be suffering afterward. Make the last days special and just keep strong. Sounds like you're doing everything you can for your family. My heart goes out to you. God bless.

Pastor's wife answered...

I am sorry to say that my husband lost his battle with renal cell on Nov. 2nd. All I can say is, we spent the last three years enjoying the time we had, maintaining a positive outlook and praying daily. Chip is now dancing with Jesus, he is young again and has no pain. Amen

A fellow caregiver answered...

I am 15yrs old in 9th grade and my aunt on my dads side is in some type of kidney failure. They drained her but it came back 3x worse. I am not quite sure what to do. She is very weak and the doctors are making her take alot of pills. With all the liquid in her stomach she looks like she is 9 months pregnant. She is divorced and has no children. She has always been tall and skinny. Now she looks very ill looking. They said she is in stage 4 for kidney failure i think. I am sad for her. And i also have a nana that is on my mothers side is in stage 3 lung cancer. She started chemo today! I was every excited about that. Plus she ate very well tonight! Almost a whole meal! My family has always been a healthy family. But lately it has been very tough. We barley have enough money to pay rent....but momma said we are gonna make it through it. But i stopped crying knowing it wouldnt help to cry...so i would hold mom while she would cry. I thank you for the information and hope all is well soon...and that u all have my prayers. God bless you all

A fellow caregiver answered...

Thank you for the information. It was very helpful. My dad has stage 4 renal cancer and I was not sure what to expect at this point. Hospice is coming now and it is just a matter of time. He was always a very strong man and I think he is holding on to make sure we are ok. I am going to miss him terribly but we will be Ok. I will take care of my mom and his mom too.

A fellow caregiver answered...

I speak from experience and urge each and every one of you to insist that your Dr. refer you to a good hospice organization! The hospice nurses were an invaluable resource for us all. They used the right meds to keep my Dad pain free until his last breath. They have so many services available and I learned very quickly that all Drs. take a hospice nurses calls, day or night! Our hospice nurse helped my Dad with pain control more in the first 10 minutes after she walked in the door than we had been able to get done in a week of leaving messages with various flunkies at the Drs. office! The nurse was honest with my Dad and all of us. She explained the dying process to all of us. She had booklets, handouts......about what to expect and suddenly it didn't seem as scary as it had before. She encouraged us to take pictures, laugh and reminisce about good times. And she made sure my Dad was pain free......that above all else was a true gift! GET A HOSPICE NURSE!!!!!!!!!!