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Stage 4 Renal

worriedmom
Posts: 14
Joined: Feb 2016

New here.  My 33 year old normally very healthy daughter was just diagnosed stage 4. It has spread to her bones...

We are just getting started. She had her biopsy yesterday, and we are awaiting a phone call from a Dr. who specializes in this.

Any help would be greatly apppreciated, as all of the information on the internet is overwhelming, and how do you know

which sights to trust?

Thank you!

Suzanne 20
Posts: 9
Joined: Feb 2016

This board is full of the right people to give the right information.  I'm sure there will be many more posts to follow regarding Stage 4.  While I'm not as educated as A LOT of people here, I hope I can offer some assistance.

Research, research, research the heck out of the doctor.  Before my first meeting with the urological surgeon, I googled him and read credentials, the linkedin account--everything I could find, even on youtube.  You need to be comfortable and confident in your doctor.  I knew I was in good hands when he suggested a second opinion (before my second surgery).  I did, and their surgical treatment plan matched.  I will admit his personality lacked warmth a bit, but his experience more than made up for that.

Take some time and read previous threads on this board.  Fear of the unknown is overwhelming, but reading posts by others who have experienced the same as me has helped tremendously.

I wish your daughter best of luck.  It's wonderful that you are involved and ready to advocate for her!

Blessings,

Suzanne

 

worriedmom
Posts: 14
Joined: Feb 2016

Thank you! We have seen one oncologist, who did the diagnosis, and we like him, but we are heading Tuesday for a second opinion,

at Cleveland Clinic, as we are in Ohio. The Dr. seems to have wonderful credentials! The first Dr. set up the second opinion for us.

I'll be reading as much as I possibly can, and we are all keeping binders with information found, so that we can share.

I also have recorded the Dr. visits. It's just too hard to remember everything!

Thank you so much!

 

APny's picture
APny
Posts: 1998
Joined: Mar 2014

I am so sorry you had to join us and hoping for the best for your daughter. Another excellent forum with a huge knowledge base and helpful people is Smart Patients. https://www.smartpatients.com/communities/kidney-cancer

Cleveland Clinic is one of the best in the country. Your daughter will be in excellent hands. Wishing you both the very best!

worriedmom
Posts: 14
Joined: Feb 2016

Thank you,

I am currently awaiting an email from smartpatients. 

I thank you for the encouragement!

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

Don't get all worked up with the stuff you read from Google searches.  Read what people have to say here and on smart patients.  Kidney cancer (even stage 4) can be treated, and there are several people on this board who have been doing well for several years with stage 4 kidney cancer.  You are in good hands at the Cleveland Clinic.  One of the top hospitals in the nation. 

worriedmom
Posts: 14
Joined: Feb 2016

Thank you!!  :)

mrou50
Posts: 389
Joined: Mar 2013

Sorry you had to join, this is a good site for information and even better for support.  Information is available all over the web, my advice just find doctors who know their stuff and get information from them.  Plus many of the people here on this site are well informed since we have been dealing this, some of us much longer than others.  Don't be afraid to vent, cry, and scream we have al been there and we all support each other.

 

Mark

worriedmom
Posts: 14
Joined: Feb 2016

Thank you! It feels better just not feeling so alone!

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

Welcome. So sorry you have this situation.

What type of specialist are you seeing? I guess a medical oncologist? I believe Cleveland Clinic is a great place to be. If there are specialists who do research in RCC, that's the best person to be with.

What types of tests has your daughter had so far? And what did they find? How do they know it is RCC?

Smart Patients, as you've been told, is a good place for more technical discussions.

Hope all goes well and your daughter gets some help soon.

Todd

Jan4you's picture
Jan4you
Posts: 1327
Joined: Oct 2013

Of course you are "worried mom." As a mom/grandmother, I can understand. Sorry for what you and your daughter are going through now.

But you are doing right by seeking out the correct information here and on Smart patients site.

Once you get going on a plan you'll start to feel like you can handle this better and things are

not so shocking.

Hang in there. Hopefully your daughter will come on this site and SP too.

Sending you healing vibes and gentle hugs,

Jan

 

worriedmom
Posts: 14
Joined: Feb 2016

Hi Jan,

Thank you, and my daughter has decided to stay off the internet for now, there is way too much misinformation out there.

My sister and I are doing most of the research. Thanks for the message, this all helps so much!

worriedmom
Posts: 14
Joined: Feb 2016

Hi. She had been tired and her heart rate started going high. Started at er,got nowhere, so I took her to an endocrinologist.

Her calcium was high. Ended up at 15, and hospitalized her. The Dr. there thought she had myeloma.

They brought in an onco./ hemo.  She had a ctscan which showed large tumor on right kidney and several small tumors on her bones. She also had a small rib  fracture.

 we had a biopsy  last week. The Dr. At clev. Clinic specializes  in kidney cancers.  

That's where we are now. The clinic on Tuesday....

 

 

 

 

Dutch1's picture
Dutch1
Posts: 152
Joined: Mar 2014

The Cleveland Clinic is a great place for a second opinion.  Recording doctor sessions and keeping extensive notes is important, too.

At the start, it is overwhelming ... from all sorts of perspectives.  Things will calm down.

Keep things moving along.  Do your best to avoid too much waiting.  Waiting for test results, waiting to fit in the surgeon's schedule, etc.  Push to get more prompt scheduling.  Don't be afraid to ask questions.  Always have at least two people at all doctor meetings. 

Stage 4 is worrisome territory.  That is undeniable.  I understand that because I'm there, too.  It's been three years for me.  Considering that I'm stuck with this cursed disease, I am doing pretty well.  So, good things can happen.

Best wishes to your daughter and the family.

 

Dutch

worriedmom
Posts: 14
Joined: Feb 2016

I've gotten on to smart patients, and we will be doing a lot of reading! I've  been recording the Dr. Visits and

Asking for copies of all tests being run. We are trying to keep a record of everything.

Thank you for the help!!

 

 

foroughsh's picture
foroughsh
Posts: 779
Joined: Oct 2014

I'm very sorry for all you're going through, I am 38 years old and was diagnosed two year ago with a large tumor in my right kidney so as a stage two patient I don't have lots of information about drugs. But just wanted to tell yiu that we are all here for you if you want us to, this board is full of lovely members who are wonderful supporters and smartpatients is a good place to get information, so please do your best not to google informarion(it's easier said than done) as our google friend isn't very trustable when it comes to newest medical information. I'm not in US but I've heard from other members that cleveland is a very good choice. We have some stage four members with success stories. I think It's easier for her to deal with drugs side effect because she is young and healthy.

worriedmom
Posts: 14
Joined: Feb 2016

Hi, it's so shocking to me how many people are on here and how wonderful people are!

They seemed very shocked that she had this at 33!

Good luck with your recovery, and thank you!

 

 

 

medic1971's picture
medic1971
Posts: 205
Joined: Sep 2015

You are already doing the right thing!  Getting a second opinion at a top rank hospital for cancer.  I was only stage one at 43 years old so I don't have a lot to offer as far as treatments, but I can give you some research tips.  

1.  I'd stick to .edu and .gov pages for research about treatments. and even there be sure to check the dates.  Treatment for kidney cancer has changed so much over the past few years that some of the information may no longer be relevant.    

2.  Kidney Cancer .org has a good YouTube channel 

3.  Do not pay attention to the survival statistics you find online.  Those survival rates are based on data and treatment that may have occured 15 years ago.  You have to understand that those deaths also include people who may not have died from kidney cancer.  Some of them may have died to other age related disease processes like heart disease.  People with kidney cancer tend to be older and may have other serious health conditions. Therefore, the percentage of people surviving the cancer itself is likely to be higher.

Hang in there and know the people here care about you and your daughter.  

 Jason

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