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Palliative care vs Treatment

Praying for Strength
Posts: 5
Joined: Apr 2012

Hello -

I'm daughter to a strong and loving father faced with the unimaginable situation of having to decide what treatment path to undergo. I myself go back and forth on what I'd like to see him do, and it breaks my heart to think of the thoughts that might be racing through his mind ...

This past February 2012 he went to doctor for pain in his stomach. Several scans later it was confirmed large mass in kidney, with probable metastisis to lungs, liver and bones.

March 2012 - Right radical nephrectomy. Path reports came back Kidney Cancer, Stage IV, grade 4, tumor showing focal sarcomatoid features and also focal granular and clear cell; and it was metastatic to bone, liver and lungs.

His prognosis is poor. Treatment options given were basically get your affairs in order, enjoy life you have left, treating symptoms as they appear. Or he could be treated with Sunitinib or Gemcitabine, with the hopes of prolonging the outcome by few months.

For 73 year old man, high blood pressure, but otherwise healthy, what would you do? Does age you start these treatments play a factor in how you might react? I know everyone is different and reacts different, I guess I just need words of hope from those who've been there to try to be strong for whatever path he chooses ...

icemantoo's picture
icemantoo
Posts: 1477
Joined: Jan 2010

I do not know what I would do. A lot depends on how your father feels. Do the additional medicines provide hope or just delay. Will they cause pain.I for one do not feel qualified in suggesting to other people what they should do in these difficukt situations. Our prayers are with you whatever your father decides. There is no right or wrong answer.

Icemantoo

Praying for Strength
Posts: 5
Joined: Apr 2012

Iceman - It's encouraging to read words from those who are actually fighting. Thank you for your prayers. I too am praying for all of you fighting this ugly battle. Whatever path is chosen, may it lead to peace in some form.

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

First, let me say I'm sorry about your having to face this "bad hand". How does your dad feel about treatment? Is he a fighter?

Unless it's his decision to not be treated, I couldn't make the decision to not try, particularly if he's in relatively good health. Age 73 encompasses the new middle age!

My husband has a diagnosis pretty much like your dad's, minus some of the mets. And we're getting ready to start a second trial. Will it work? I don't know, but if we didn't try--we wouldn't know. Don't give up. There are advances in kidney cancer and new trials being started on a regular basis and kidney cancer isn't the automatic death sentence it once was believed to be. I remember our first meeting with my husband's oncologist and talk about Sutent (Sunitinib). While it's not right for everyone, he mentioned one patient who had been taking Sutent for 15 years with no progression.

Talk to your dad. Let him know there are success stories out there. . .

foxhd's picture
foxhd
Posts: 1873
Joined: Oct 2011

..I agree that if dad is generally a fighter and in good health, go for treatment. It may work to extend his life until something new is available. Here is a different realistic thought. Maybe when his time comes, it could be a more natural passing and his cancer may not be the culprit if you can hold his cancer at bay.

Praying for Strength
Posts: 5
Joined: Apr 2012

Fox -

Thank you for your reply. So true, as I've read from many stories, cancer can be kept at bay. Just need to start looking at the situation in positive light.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Your Dad is only 73, strong and otherwise healthy apart from high blood pressure. His prognosis isn't good but it's far from hopeless. He should give it his best shot.

Whereabouts is your Dad? Does he have top drawer doctors? As Alice has said, Sutent is a good first line treatment and there are various other possibilities. Dr. Janice Dutcher in NY is the great expert on rare sub-types of RCC. She is not only expert, she's also very compassionate and she does telephone consultations.

For brainstorming a situation like your Dad's, you'd be better off putting this question on KIDNEY-ONC rather than here on the ACS CSN threads. KIDNEY-ONC has a number of real experts on hand and they are more intensely focused on treatment options for less favourable cases.

I can vouch for all the above because I'm nearing 70 and also Stage 4, grade 4, with predominantly sarcomatoid histology but without the mets your Dad has (so far, at least). I've had a nephrectomy in December and a second tumour removed a month ago so my situation is fairly similar to your Dad's and I'm not going to go down without a hell of a fight. We're both cases, like Alice's John, of "Where there's life there's hope"!

Praying for Strength
Posts: 5
Joined: Apr 2012

Thank you Texas_Wedge for your reply. My Dad is in northern California. Looking at randomized clinical trial being run at Stanford comparing sunitinib pills alone vs sunitinib with gemcitabine (IV infusion). We are waiting to meet with doctor running trial.

I have checked out Kidney - Onc and I guess it's time to jump in and post the question there too. I just feel like I'm all over the place right now, wanting to help my Dad in some way but feeling helpless. You're right, "Where there's life THERE IS HOPE" Just needed to see/hear it from those actually fighting this ugly battle.

Limelife50's picture
Limelife50
Posts: 409
Joined: Nov 2011

quik question how big was that second tumor and the location,also if you do not mind what procedure was done to remove it. Thanks Mike

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Mike, as it happens I just picked up my latest path report from my GP this afternoon. It's fairly brief, key bits include "Excision of renal bed recurrence. Right radical nephrectomy, previous G4 pT4 chromophobe with sarcomatoid change." The macro report says "A portion of fatty tissue measuring 55 x 35 x up to 25 mm. Towards one edge there is a firm nodule measuring up to 25 mm in diameter." The micro report narrates "Sections show a nodule of sarcomatoid carcinoma with extensive areas of necrosis."

Margins were very close "often less than 1mm from the margin" so it's all absolutely touch and go but fortunately I'm not one to lie down and die.

The procedure was another open op, going in by using the incision from the first op in December.

I guess it continues to be chins up for both of us. How're you doing?

Limelife50's picture
Limelife50
Posts: 409
Joined: Nov 2011

i go wednesday to have a 1.4 cm tumor removed from my left kidney via radio ablation,will give update when i get path report

Limelife50's picture
Limelife50
Posts: 409
Joined: Nov 2011

i go wednesday to have a 1.4 cm tumor removed from my left kidney via radio ablation,will give update when i get path report

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Hope all goes to plan Mike. Give us an update as soon as you feel like it which will probably be before you get your path report. The radio ablation sounds like a sensible choice for a small tumour and will doubtless do the trick. Will be thinking of you.

sunlover_56's picture
sunlover_56
Posts: 110
Joined: Apr 2012

I am a little newer to all this and I dont understand all that you posted about your path report, but I want you to know I am thinking of you and sorry you have to go through more surgery. I so admire your strength and conviction on all aspects of this horrid disease and the way you keep such a possitive outlook. I hope I can be half as strong as you as I go down the path that all of here have been forced to travel. I also want to thank you again for ressponding to everyone who writes on here. Your words to all of us are not only factual but comforting at the same time, no matter where each of us are at in our fight.

~Judy~

sunlover_56's picture
sunlover_56
Posts: 110
Joined: Apr 2012

I just looked at the date of your post ... sometimes I can be an idiiot .. lol.. true blonde sometimes.. but I meant all the things I said about you.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

A blonde walked into a building!

This gentleman prefers blondes like sunlover. The date doesn't matter - I'll take flattery like that any day.
Seriously Judy, thank you for those gracious words. X

sunlover_56's picture
sunlover_56
Posts: 110
Joined: Apr 2012

You are more than welcome :-) I have heard my share of good blonde jokes in my day. I Would share one or two, but I dont want to take the risk of offending anyone out there who is blonde.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

There was a blonde who found herself sitting next to a lawyer on an airplane. The lawyer just kept bugging the blonde wanting her to play a game of intelligence. Finally, the lawyer offered her 100 to 1 odds, and said every time the blonde could not answer one of his questions, she owed him $5, but every time he could not answer hers, he'd give her $500.00. The lawyer figured he could not lose, and the blonde reluctantly accepted.

The lawyer first asked, "What is the distance between the Earth and the nearest star?"

Without saying a word the blonde handed him $5. then the blonde asked, "What goes up a hill with 3 legs and comes back down the hill with 4 legs?"

Well, the lawyer looked puzzled. He took several hours, looking up everything he could on his laptop and even placing numerous air-to-ground phone calls trying to find the answer. Finally, angry and frustrated, he gave up and paid the blonde $500.00

The blonde put the $500 into her purse without comment, but the lawyer insisted, "What is the answer to your question?"

Without saying a word, the blonde handed him $5.

Praying for Strength
Posts: 5
Joined: Apr 2012

Alice - thank you for your kind words.

My Dad is a fighter but I believe he's also worried about what he knows will be a painful battle. He wants to be able to enjoy his grandkids and family as long as he can in as good a condition as he can. Right now he has no symptoms and does not appear sick. The uncertainty of how life will be altered once treatment starts I'm sure is weighing heavy on him now.

We won't know until we try I say, but ultimately he has to be at peace with his decision. He doesn't want to give in but trying to balance that with condition he could end up in is a heartbreaking decision.

There are success stories out there. I pray that he be one of those.

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

My heart goes out to you and your dad. And I pray that the people who make this board the lighthouse it is will be the strength you pray for. I know it has been for me on numerous occasions. Good luck to you both; keep us posted.

Bennette
Posts: 65
Joined: Mar 2012

Hello, I don't know how I missed your posting before. My mom is newly going through this as well, she is 70 and this all started in the last couple days of Feb. Initially, they found it in her left kidney, right adrenal, lungs, and mets in her spine and left femur. She is on Votrient and they just found mets in her brain, but at no point have her doctors told us to get her affairs in order. Her doc wants to handle the brain mets and get her onto the IL2 treatment, which has about a 10% success rate for killing the cancer completely. We are still gathering data about brain radiation treatments, but this is the first time we have even felt the need to consider things a bit more closely because of the side effects of the radiation treatment to the brain. So I am not sure what prompted your dad's doctors to start things off that way, unless it the size of the tumors or the liver involvement, etc. When my mom started off, she was ready to give up after her kidney was removed and her oncologist sat at her bedside and told her she was no where near making such a decision and if she would just follow his lead he would get her more time, quality time to spend with her family and to do the things she still wanted to do in life.

So I guess I would have to say, if you haven't already made a decision, do find out as much as you can before you decide not to fight. It appears all of the treatments have their own set of side effects, so the type of treatment will effect how he is during the treatment, but they are not all terrible. My mom is doing fine on Votrient, but the side effects from the steriods, which they are using to control the swelling in the brain are not desirable, but they will end and be replaced by other things as we move forward.

She may be confused or have trouble getting around from time to time, but she is still able to converse and enjoy her family, which is why she is still willing to move forward and fight harder.

I am also not so sure that the "pallative only" is going to bring her a better end, the things she will go through if she has to remain on steriods or if the brain tumors are allowed to grow sound to be just as bad or worse than what might happen to her down the road from the brain radiation. So please do help your dad get a lot more information and perhaps even another opinion before you make a decision to throw in the towel.

I know it is hard, so very hard, my mom is living with me as she was just not capable emotionally or physically to care for herself after her kidney removal. So I see her 24/7 and know exactly what is going on with her and what the changes in her are. So I am not giving you these suggestions lightly, but I have learned through all this that information is so very important and that many of people have successfully gone before! This has really given me both hope and strength during this ordeal and I am sure it will continue to do so as we move forward.

Best of wishes to you and your dad, whichever route you chose.

Bennette

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