Renal Cell Carcinoma (Kidney Cancer) Support Group

Hi Jay45,

I'm sorry that your father received this dx. I also am glad that you are reaching out to DS for information and support.

Just to let you know, my husband was diagnosed over 7.5 years ago. His kidney was removed and a year later, his cancer spread to his lungs and lymph nodes. The good news in all this is that today, there are very good treatments to help exend a person's life. The road is not easy, because some medicines work and some don't, so it is an emotional rollar coaster. Also, each treatment brings its own set of side effects. Over the years, my husband has learned how to care for himself so that his quality of life is manageable. He still works full time and enjoys doing most everything in life.

The most important thing you can do for your father is to support him. He will guide you as time goes on though at first, he himself may not know what he needs. My sons both found different ways to support their father. When he was in the hospital, one son took turns with me by staying morning, noon and night with him. The other son (who hates hospitals), took care of the household needs. Over the years, they both have spent a lot more time with their father, calling him and visiting him. When he is so fatigued, they'd help out with chores, etc.

Your father needs to find a good Oncologist with kidney cancer specialty if possible. There is so much hope even when the cancer has spread. Some of the treatmentns only last a short time, some don't work at all, and some work for a long time in holding back the cancer....some even help to shrink the cancer. My husband has used everything out there and now is circling back to treatments that he used years earlier that stopped working and we learned that they will work again. This tells us that it is possible for him to LIVE with kidney cancer.

I wish your father and you the very best. I know I've thrown a lot out here, please let me know if you have any other questions...

Linda

Thank you so much for your reply. You have no idea how much it helps.

Jay45
Linda has given you a treasure trove of good advice. Only thing I can add is to keep a positive attitude and try to convey that to your dad.
Make sure that he always has someone with him at doctor visits to act as the second set of ears. Limit your internet searches as much of the info is out of date and can be scary. Be realistic and practical, but be hopeful at the same time. EVERY case is different.
All the best of luck to your dad - he is already lucky that he has a son who cares enough to look for help and to provide support. This site is a good place to get it.
glors

WELCOME to the DS family! You have definitely come to the right place, and we're so glad to have you here.

Both Linda and Gloria have given you some terrific advice. The only other thing I'd emphasize is to be sure and take care of yourself.

Even though this diagnosis is frigtening, such strides have been made in the treatment of renal cell carcinoma. Think positive and take it one day at a time. It's all going to be okay.

Love,
Ingrid

Jay45,

You have gotten some great advice from LSMS, Glors, Msgrace. There are some great drugs that control the cancer. I just finish with Sutent, which quite working after 9 months, and going to start on Nexavar this week. With the Sutent, my nodes reduced by over 80%. Each of us has our own set of side effects and mine were tolerable with Sutent. Some of the new drugs have less side effects and I hope those get past the study stage soon.

My advice is to treat your dad just like you would if he did not have cancer. Oh, maybe a little better ;-) I am working fulltime and doing most of the things that I like to do. In fact, I am doing more things that I like to do because I value time with family more. I am not sure if I have a physical job that I could continue to work but I am lucky and have been able to work.

The idea is to stay well and let the new drugs help extend your life. I think staying positive is part of staying well. I am very, very encouraged with LSMS stating her husband is 7.5 years into treatment that is very encouraging. Thank you , LSMS for sharing.

All my best to you and your dad.

Cheers,
Gary

Jay:
All I can say is - just be there for him. It is a roller coaster ride. All the meds, choices, decisions to be made, tests, etc.
My husband was diagnosed when he was 46, with very few symptoms and was very active and healthy up to that point.
God Bless and Good Luck to your Father!
Debbie

Hello Jay45....they are so advanced in treating RCC now then when I had it. That was 18 yrs ago. Linda gave you good advice...and we give good support. Be there and support your Dad he will need you.Please add me and whenever you need someone to talk to give me a yell!!!

Brenda

Hi Jay,
i know what a difficult time this is for you and your dad and famlly right now and the shock is so hard that it's so hard to beleive that thisisi really happening... Just know that we are all here for you in any questions that you may have, especially support, this site has wonderful people, like myself who have gone thru exactly what you are experiencing right now... When my fiance was d/x over 15 months ago all i could do was support him and let him know we can get thru thi... There are many options out there for treatnments, and i researched and researched about treatments and happen to fall upon Torisel.... So thats what Tim wanted to try and he started it on Jan 11th of this yr and all his mets in his lung and one on his rib are stabilized today, he's doing really well today, still works everyday.....
All that i can suggust is for you to keep a positive attitude and just let him know that your supporting him 100 %... Are you going to the doctors with him or have you gone ?? You need to ask alot of questions, write a list....What saved me is the research that i did on mrcc, i was able to understand so much when the oncologist talked with us and i was able to ask lots of questions...
I know things look so down right now, but what the catscans were showing with Tim looked much worse, than what the surgeon expected and Tim was able to have all the work the surgeon did laporscopicly....
Please keep us all informed as how your father is doing, we are here for you ....
I wish you and your dad the best and my prayers are with you both....
Becca Anne

Hi Jay. This is a club no one wants to belong to, right? But you will find strength. My dad has been a survivor for 8 years. They originally gave him one year. It is a roller coaster and I have tried to live in the moment. Better at it sometimes than others. There is always hope. As for what to do for yourself - whatever you need to do - study about it, cry, talk to friends, whatever helps you cope. Sometimes doing nothing is the best for awhile. As for your dad - just being there is the most important. God bless you on this journey. I'll be praying for you and your dad.