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kidney cancer recurrence & survival rates

Julea65
Posts: 1
Joined: Dec 2019

Hi,

In March of 2017 I had a left nephrectomy and the removal of a tumor in the inferior vena cava. There was no follow up chemo and/or radiology. My doctors and I have been vigilant about doing 6 month MRIs and unfortunately, there has been a recurrence of the kidney cancer in lymphnodes on my right side. I will be starting immunotherapy (axi/pembro) in January and my doctor says my prognosis is good.

I'm struggling with the uncertainty of it all (not that anything is really "certain" if you want to get philosophical) and I don't know anyone else who's ever had kidney cancer. I feel like I'm walking around with a time bomb inside me and I'm wondering how long have you or your loved one survived with a cancer recurrance?

Thanks in advance,

Julie 

Allochka's picture
Allochka
Posts: 902
Joined: Nov 2014

Hello Julie!

sorry to hear about recurrence. Can you tell a bit more - what Stage were you, grade, type of kidney cancer?

Your doctor is right, prognosis is good. In many-many cases kidney cancer can be managed like chronic disease nowadays. PLease read this board - there are many people who are Stage 4, but they do their treatment and live full lives. Some of them even become NED (No Evidence of Disease). I don't want to underplay the situation - it is definitely scary, but this is not the end.

It is not even a question "how long you would be able to survive"... Many Stage 4 people here are not "surviving their last months". They live their lives, get their treatment, work, love, travel...

My husband was Stage 1, so I am not the best person to discuss treatments. But I  guess many more knowleagable people will soon switch on (can take some time, it's holiday season)

PLease just remember that this is not the end!

Hugs,

Alla

 

 

 

a_oaklee
Posts: 516
Joined: Nov 2013

Hi Julie.  Real sorry to hear you had a recurrence.  Im here for my husband who was diagnosed in 2012 as stage 4 at that time.  He also had VC involvement, lymph nodes, and multiple bone mets.  He is doing very well and still works full time (because he wants to).  

My advice to you is to do your scans.  Take whatever meds that you have decided are right for you.  Then, do your very best to enjoy and live your life.  If you struggle mentally, get help for that too.  It does get better with time.  

You may also want to join Smart Patients as there are mostly Stage 4 people on that site.  

My husband has been no evidence of disease for 7 years now.  

There is hope for you too.

donna_lee's picture
donna_lee
Posts: 939
Joined: Feb 2009

When I was d'xd in 2006, it was already Stage 4, metastatic, because they had seen a mass in the liver.  During surgery, they removed the set of nodes in the fossa (under) where the R. kidney had been.  2 of 11 were positive.

The following year-2007, a single node in that region was found to be enlarging between 3 mo CT's.  Tested positive on needle biopsy and had surgery to remove it.  The next year, "same time next year", and a node in the low pelvis showed enlargement.  PET scan positive for something, more surgery.  And nothing for the next 10 + years.  My most recent Onc. report said "clinical remission".

Does cancer like ours come back? Yes & No.  Was it too small to show on any CT at the time of original surgery. Probably.  That's why they say recurrence.  My first head surgeon said, "It looks like we got it all."  That is a CYA medical term for, "we looked, poked, prodded, cut and tested, and could find no more evidence of spread."

Know that you've met others who have been there, done that, accept the recurrence, go with the Dr.'s recommendations and get on with life.  S*** happens.

 

Look on the bright side.  They found it and it can be treated.

Hugs and best wishes.

donna_lee

a_oaklee
Posts: 516
Joined: Nov 2013

Really good post Donna Lee.  

It should be said that having surgical removal of cancer is the first option if possible.  All the other various treatments are secondary options.

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