CSN Login
Members Online: 13

You are here

Trying not to panic

janlaurie
Posts: 4
Joined: Aug 2018

Just received call from surgeon after radical nephrectomy last Tuesday.  Expecting non-invasive, non-malignant tumor.  Instead told stage 3 invasive urothelial carcinoma with 50% survival rate after chemo.  Reading pathology report looks like 7.9cm tumor.  What the hell do I do now???

icemantoo's picture
icemantoo
Posts: 3193
Joined: Jan 2010

jan,

 

There are more than a few on this board with larger tumors. Get yourself an appointment with an Oncologist preferably one who specializes in RCC as soon as possable.

 

 

icemantoo

janlaurie
Posts: 4
Joined: Aug 2018

wgat is RCC?

icemantoo's picture
icemantoo
Posts: 3193
Joined: Jan 2010

Renal Cell Carcinoma, ie Kidney Cancer. Pretty soon the lingo comes naturally.

 

 

 

icemantoo

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

Where are you located?  Perhaps some of us can give suggestions.

stub1969's picture
stub1969
Posts: 776
Joined: Jul 2016

Welcome...and sorry you're here.  I have to ask for my clarification: did your doctor tell you this information over the phone?  If so, I'd suggest he/she get better manners.  I'd also check to see if he/she is up to date on current RCC research.  Also, if he/she did say that to you, it would be a license to find a new doctor that will treat you with a 20 year plan.  

Okay, enough about that.  Please understand and know that the fear you have is totally understandable and normal.  I think it's safe to say all of us felt like we got hit by a truck when we were told about our cancer.  Now is the time to arm yourself with knowledge.  Read as much as you can about your type of cancer and be prepared to challenge your doctor with questions and possible solutions.  You'll need to be an advocate for your care.  To get started join smartpatients.com . Post your story and get their take on your situation.  The more information you get will help you work your way through your care.

Don't get too consumed with fear---we're here to help and offer support and advice.

Good luck!

Stub

janlaurie
Posts: 4
Joined: Aug 2018

Thank you all for the encouragement!  Yes the doctor told me over the phone but I did say I wanted to know when they did.  I’m in the Raleigh NC area and had the surgery done at UNC.  I have a copy of the pathology report and it seems like there are some involvment in the renal artery margins.  They are sending me for a chest CT next week and then I don’t see the oncologist until mid September.  I tried calling Duke which is the other research oriented hospital here but you can’t even get an appt until Oct and I don’t want to wait.

JoeyZ's picture
JoeyZ
Posts: 193
Joined: Mar 2018

You need to run, not walk to an RCC specialist. Any doc who would deliver such news and with such a dire prognosis over the phone needs his own head examined. I realize you wanted them to call. My problem is with the 50% survival rate after chemo. He cannot possibly predict any such thing. It's almost Sept. now and maybe you could do both appointments.

I was hoping maybe some others with more experience than I have could chime in. Have you visited smartpatients.com? They have a wealth of info and very helpful, experienced people in all aspects of kidney cancer.

Sure do wish you well. But don't let anyone tag you with any type of expiration date!!

AnnissaP's picture
AnnissaP
Posts: 617
Joined: Sep 2017

Hi. Wishing you all the best with your care xoxo

Amy_Jo's picture
Amy_Jo
Posts: 69
Joined: Apr 2018

Jan 

I'm really sorry you landed here - I was just diagnosed February this year.  No doctor can predict your expiration date so just forget that. First things first get a second opinion and maybe a 3rd. I'm also in NC I go to the Levine cancer center in Concord. My oncologist works under a RCC specialist. He is located in Charlotte NC. I will pray for you wish you the best try not to stress yourself out it won't help anything. 

Sending Hugs your way be strong 

Gtngbtr58 @aol.com's picture
Gtngbtr58 @aol.com
Posts: 204
Joined: Oct 2017

A Dr who is positive concerning your diagnosis and treatment.  People on this site are so positive and informed of the latest in treatment.  Be your own advocate and ask questions till you get answers-June

angec's picture
angec
Posts: 923
Joined: Mar 2012

This doc sounds like one of those who want $$$ for chemo. Note this: They don't use chemo perse to treat kidney cancer. There are all kinds of meds that work the vascular system.  If he is saying you need chemo straight out, RUN to a hospital/oncologist that specializes in RCC.  Please if you wish, get a copy of ALL reports and post what the results were. Don't do any chemo and don't do anything with doctors until you verify with others here. Also join smartpatients.com. They are very, very knowledgable about drs. treatment and also hospitals.  This doc sounds like he wants money for chemo. All the best to you. They told my mom she will die in six months, she is on year 7 now and doing well for 86. So, don't let them scare you. Anyone who says  you will die after chemo does not know the new meds out there. Don't use this person please. Go to a reputable hospital. Get all of your reports. Keep us posted and don't freak out. Sounds like a wishy washy response from that dr. Hugs!

JoeyZ's picture
JoeyZ
Posts: 193
Joined: Mar 2018

Very well said, angec.

Subscribe to Comments for "Trying not to panic"