Mother diagnosed with Stage IV RCC

Bennette

My mother (who just turned 70) was hospitalized for 3 days last week to do tests after her MD found alarming results on a chest x-ray and CT scan. Then in the hospital they did a contrast CT scan of the kidney and lower chest and then an MRI of her spine and a bone scan, as well as multiple blood tests. She had small nodules all over her lungs and a large tumor in her kidney approx 7cm. The oncologist, urologist, and pulpomary dr she saw there were all predicting kidney cancer, but since my mom was a breast cancer survivor from 1997 we (her kids) were hoping these areas were from her breast cancer. We wanted a biopsy of the lung nodules, but they all agreed they were too small and the risk too great; then they noticed small nodules in the adrenal gland (the one near the healthy kidney) so they decided to do a biopsy of these - which they did yesterday. The docs were right! The oncologist called her today to say the biobsy showed clear cell renal carcinoma - since we were already planning to have the kidney removed (due to the size of the tumor) she is scheduled for a consult with the surgeon on Monday and they plan to do the surgery later next week.

Now we need to decide what to do from here. We are looking at taking her to MD Anderson, as they seem to have the most cases per year and possible more treatment options then are available in the Kansas City area - but we (myself and siblings) are really new to this area and her previous breast cancer was nothing to fight, whereas this sounds much worse.

Does anyone have advice on whether it is better to travel for help or just go with what is available in your area or maybe doing both, some here, some there? We don't want to make it harder on her, but we want her to live!! My children are already old enough to know their grandmother and remember her for forever, but one of my sister's has a 3 yr old and a 2 yr old and she is devistated that there is the potential they will not get to know her long enough to remember, my other sister (the baby of the family) has not yet married and had children, my brother has two older children and a 2 yr old. My children have already brought her 2 great-grandchildren and another is on the way. We are not ready to have her depart us - are we asking too much to push her to fight??? How much is too much???

We are a close family, but our parents divorced after 25 years of marraige, so she doesn't have a spouse - just us kids and our kids; in addition to her own siblings (all still living and she is #3 of 8) so we have a huge support system for her - almost all of us live within 40 miles of each other and her. We all want her to fight, but how do we know for sure that we are not going too far????

Anyone with advice on this matter??

Bennette

icemantoo

Hang in there
Bennette,

From the description you have given she is starting with a lot more than many of us on this board. She defiately needs an oncologist with some experience in this area which should be available in a city the size of Kansas City. If not M.D. Adderson would be an excellent choice. Whatever is going to be done and needs to be done should be done expediciously given the fact that she has mets and is 70 years young (I am 68 and 1/2 years young). There are many new treatments out there for later stages of Kidney Cancer that were not out there almost 10 years ago when I started my journey.

Best wishes on the road to recovery,

Icemantoo

Bennette

icemantoo said:

Hang in there
Bennette,

From the description you have given she is starting with a lot more than many of us on this board. She defiately needs an oncologist with some experience in this area which should be available in a city the size of Kansas City. If not M.D. Adderson would be an excellent choice. Whatever is going to be done and needs to be done should be done expediciously given the fact that she has mets and is 70 years young (I am 68 and 1/2 years young). There are many new treatments out there for later stages of Kidney Cancer that were not out there almost 10 years ago when I started my journey.

Best wishes on the road to recovery,

Icemantoo

Thanks
Yes it seems like a lot to us too, we all thought she was fine, just a bit under the weather and she thought she had hurt her back - when she went in. Then everything just went crazy, not what any of us were expecting. It is a lot to take in and the information on line about it is rather scarey too! It does give me more hope that there are so many of you survivors out there.

Thanks for your wishes.

Bennette

foxhd

Bennette said:

Thanks
Yes it seems like a lot to us too, we all thought she was fine, just a bit under the weather and she thought she had hurt her back - when she went in. Then everything just went crazy, not what any of us were expecting. It is a lot to take in and the information on line about it is rather scarey too! It does give me more hope that there are so many of you survivors out there.

Thanks for your wishes.

Bennette

stay local
Hi Bennette. I would say to stay local and get the kidney out first. Any competent urologist will do a good job. Then look at your options.

Bennette

foxhd said:

stay local
Hi Bennette. I would say to stay local and get the kidney out first. Any competent urologist will do a good job. Then look at your options.

appointment with sureon
foxhd,

Thanks. She has an appointment Monday with a new surgeon. The urologist that saw her in the hospital wanted to wait until April to remove the kidney and neither her MD or oncologist liked that idea. I found out last night her oncologist found a different one and scheduled her to meet with him on Monday and that he would be able to due the surgery later in the week. So we are going to do that. Then, like you said, we will see where we go from there. I don't think I have ever been as frightened as I am now and I have almost raised 6 children (my youngest is about to be 17). Trust me they put me through some scary moments, but this one is by far the worst! I am still trying to really understand this type of cancer and the statistics don't help ease my mind at all.

Bennette

myboys2

Dr. Van Veldhuizen KU med
My son is managed remotely in Kansas City when at college by this doc. He is very good in the RCC field. He is normally managed by Dr. Dutcher at St Lukes NYCity but we needed someone to have a complete file in KC in case we had a situation, which we did. This doc handled the situation with the same skill and expertise as our primary doctor. Hope that helps. Don't panic, lung mets are not uncommon can can be managed with treatment. Keep the faith.

Bennette

myboys2 said:

Dr. Van Veldhuizen KU med
My son is managed remotely in Kansas City when at college by this doc. He is very good in the RCC field. He is normally managed by Dr. Dutcher at St Lukes NYCity but we needed someone to have a complete file in KC in case we had a situation, which we did. This doc handled the situation with the same skill and expertise as our primary doctor. Hope that helps. Don't panic, lung mets are not uncommon can can be managed with treatment. Keep the faith.

Thanks for the name! We were wondering who to go to in KC to find out about local treatment options. We will see if we can get an appointment with him ASAP for a consult.

foxhd

Bennette said:

Thanks for the name! We were wondering who to go to in KC to find out about local treatment options. We will see if we can get an appointment with him ASAP for a consult.

frustrating
Bennette, I know the frustration. I'm a physical therapist and my wife is a nurse. We constantly negotiate the health care system and still found it frustrating. We often comment on how difficult it can be for everyone else. I think Raj knows this first hand.

LISAinTN

HI
Hi Bennette,

I'm so sorry to hear about your Mom, but this isn't an immediate death sentence. There are a lot of survivor's on this board. You've been given a lot of really good advice, so I don't have anything to add there, but I will keep your Mom in my prayers. Take care.

Blessings,
Lisa

Bennette

LISAinTN said:

HI
Hi Bennette,

I'm so sorry to hear about your Mom, but this isn't an immediate death sentence. There are a lot of survivor's on this board. You've been given a lot of really good advice, so I don't have anything to add there, but I will keep your Mom in my prayers. Take care.

Blessings,
Lisa

Hanging in there
You are all great! Thanks for your input. I did get some rest this weekend and am ready to start tackling things this week. Also found out one of my 3rd cousins is working on her phd in nursing at KU Med Center and she contacted me with some information about their cancer treatments and about the same doctor one of you recommended me to contact. So I will be working on doing that tomorrow before we meet with her surgeon in the afternoon!
I didn't realize how comforting it would be see all of you survivors on here, but it is!! Thanks for sharing with us cancer rookies!
Bennette

renal scare 57

Bennette said:

Hanging in there
You are all great! Thanks for your input. I did get some rest this weekend and am ready to start tackling things this week. Also found out one of my 3rd cousins is working on her phd in nursing at KU Med Center and she contacted me with some information about their cancer treatments and about the same doctor one of you recommended me to contact. So I will be working on doing that tomorrow before we meet with her surgeon in the afternoon!
I didn't realize how comforting it would be see all of you survivors on here, but it is!! Thanks for sharing with us cancer rookies!
Bennette

hanging inther e
i know where you are comin from my husband was digonsed in dec with stage 4 rcc we are running scared tooo this site really does help it has help me with a feelin of ease.
hope things works out for the best be praying

Bennette

myboys2 said:

Dr. Van Veldhuizen KU med
My son is managed remotely in Kansas City when at college by this doc. He is very good in the RCC field. He is normally managed by Dr. Dutcher at St Lukes NYCity but we needed someone to have a complete file in KC in case we had a situation, which we did. This doc handled the situation with the same skill and expertise as our primary doctor. Hope that helps. Don't panic, lung mets are not uncommon can can be managed with treatment. Keep the faith.

Dr Van
myboys2,

I wanted to thank you! We love Dr Van. He is great, he answers all our questions and one of the sweetest doctors I have ever met! My mom was soooo happy that we could get great treatment locally. Unfortunately, he found more than just lung mets, but better to know about it all. He has been referring us to other great professionals too, for each thing that needs to be handled. They are really on top of things. So thanks for the name!

Bennette