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Survivorship. How long ago did you have your RCC?

nattyay
Posts: 12
Joined: Apr 2010

Looking forward to living a long healthy life following RCC and need some positive info. How long have you been an RCC survivor?

icemantoo's picture
icemantoo
Posts: 1605
Joined: Jan 2010

My CT scan was just before Memorial Day 2002. My surgery was on 8.1.02. I will be 68 in 2 months. My surgeon insists I will die of something else which could occur at any time in the next 30 years or so. I do not intend to kick off until all of my grandchildren (ages 15, 14, 13, 12 and almost 10 are married).

Katielynn
Posts: 61
Joined: Apr 2011

I soooo admire you're outlook....You are a very positive person and I hope someday I could have the same outlook you have...You are a true inspiration ......

nattyay
Posts: 12
Joined: Apr 2010

Awesome icemantoo. My kids are 5 and 4, and I expect fully to be here long enough to see their children being born. Keep on truckin, good buddy.

MandyBear
Posts: 14
Joined: Jan 2011

I had a huge renal cell carcinoma and am alive 30 years now! I never thought it was possible but I do believe miracles happen everyday. Good luck. Watch your protein intake, take Vitamin C and reduce your stress.

suzika's picture
suzika
Posts: 12
Joined: Jun 2011

Yay for our long term survivors! I am at 2.5 years past diagnosis.

nattyay
Posts: 12
Joined: Apr 2010

You can say that again, suzika. I'm at 2.2 years past. Good to hear there are some ol timer survivors, hah?

nattyay
Posts: 12
Joined: Apr 2010

Thank you, MandyBear. That makes me happy and I think it will give lots of hope to those 1, 2 and 3 year RCC survivors.

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

My initial diagnosis was in early 2001 - I had a recurrence in 2006. Have been tumor free now for 5 years. Recurrance is not necessarily 'the end'. The key is close followup so IF it returns, it's caught early and can be surgically removed.

Anne_Marie
Posts: 1
Joined: Mar 2011

2 years and three months but who's counting? Exercise, eat right, think positive

nattyay
Posts: 12
Joined: Apr 2010

Thank you, Anne Marie. I really need to heed those words of advice. My husband says that the universe has sent me a lesson--don't ignore it.

ejneary's picture
ejneary
Posts: 64
Joined: Mar 2010

First diagnosed in January of 2010. Clinical trial which lasted 54 weeks and ended in April 2011. Recurrence in April 2011. Have now completed one round of Interleukin 2 at Kaiser Riverside. CT scan on July 7 will tell if it is working or not. Saying lots of prayers that it has begun working. Have faith....

fatmomma's picture
fatmomma
Posts: 95
Joined: May 2011

It's been since 2007. So far doing OK. I do get nervous when I have my ct scans every six months.

fm

donna_lee's picture
donna_lee
Posts: 421
Joined: Feb 2009

Dx in 2006 with Stage IV, recurrence in single nodes in 2007, and 2008; all removed with surgery. No meds other than to control BP and other assorted things that come with being 68 now.
Positive attitude -it sags once in a while- family, Cancer Survivors Support Group of people who have "Been There, Done That", friends, job, social life, travel, house and yard, etc.

Last weekend was local Relay for Life. In a small, rural community with a down economy, we had raised over $103.000 by the time people went home that morning. And there will be more to turn in before the close of the books the end of July. My team, all cancer survivors, were so excited and happy at our meeting Monday morning. Fund Raising, Fun, Friendships, laughter, left-over food from the event.
And yesterday way my 47th Anniversarry and my husband and I went out to dinner.
Who says you can't have a life after Cancer.
Donna

nattyay
Posts: 12
Joined: Apr 2010

Wow, Donna. You rock. Thank you for sharing your story. Cancer Survivor Group has helped me a lot. Though they're few and far between. Wow, 47 years? That's so awesome!

nattyay
Posts: 12
Joined: Apr 2010

Hi Fatmomma. Wow, every 6 months. I only get them every year. They got you covered for sure! Stay strong and beautiful!

nattyay
Posts: 12
Joined: Apr 2010

Prayers move mountains. Do you know how much time it takes to move mountains, when you can just say a prayer? I'm praying for you ejneary. I pray for healing and lots and lots and lots of time for you. Thanks for sharing your story.

Peggyz
Posts: 7
Joined: Jun 2011

Just to let you know that I am a seven year survivor, after being diagnosed with Stage IV cancer, with lungs filled with tiny mets. Thanks to surgery and HD IL2, I am alive and well, and happy to help how I can, esp as to info re HD IL2.

selissa
Posts: 4
Joined: Aug 2011

Hi there,

My dad was diagnosed with Stage IV clear cell renal cell carcinoma. He has mets in his lungs, lymph nodes and brain. Right now he is doing full-brain radiation for 10 days. Hopefully this will work, and the docs want to remove the kidney and tumor and then possibly try IL2.

What was you experience with IL2? I hear it is dangerous. Were you in the hospital for awhile? Were you in pain?

Thanks so much

King08
Posts: 8
Joined: Oct 2013

I am new to this page all because I was hoping to be able to ask you a few questions about who, where, what you did for treatment. My dad has just found out his rcc has mastitized to his lungs, 7 spots bilateral largest 1.2cm. thanks!

gina1007
Posts: 2
Joined: Jun 2011

John,
How are you doing? Please PM me at gina1007@yahoo.com.
Gina

Minnesota Girl's picture
Minnesota Girl
Posts: 115
Joined: Jul 2011

Thank you all for sharing your stories!! It is really encouraging to us 'newbies.' The other thing I have come to realize is that there are a LOT of folks who are diagnosed early, cured by surgery, and wouldn't think to get involved in this kind of support.

We are NOT going to hear from my retired firefighter uncle, who had a small tumor removed by nephrectomy 10 years ago and hasn't looked back. :) That's good news, too!!

rjallmon
Posts: 4
Joined: Aug 2011

I was diagnosed in June 2011 and had the nephrectomy on 8/16/11. It still feels too new to say I am a survivor.

Sara123's picture
Sara123
Posts: 6
Joined: Aug 2011

Had a partial nephrectomy on 8/18/2011. Confident (most times) that this will not be an ongoing battle but will be completed now.

skipnonu's picture
skipnonu
Posts: 2
Joined: Sep 2011

Funny when you say survivor, sometimes I think I am a fighter. But anyways I was Dx in 2008, I had a recurrence but I tend to lean on the thought that it was something missed in the first Dx and surgery ( to Small to identify). I could be wrong though. So the reccurence was 2010. And this year (with 3 CT scans already) I have a clear scan but bad blood work so I am waiting to see what happens, this is the fighter part I was talking about. Keep positive keep reading post here, this is a great group of people. And live every day with long term goals. I try to, even though I get really worried.

jona187's picture
jona187
Posts: 74
Joined: Apr 2011

My wife of 29 is a 7 month post surgery survivor.

Now, 61+ years of life left to go :)

To all the people out there keep a positive outlook and keep battling

anmazon's picture
anmazon
Posts: 129
Joined: Jun 2013

I was diagnosed May 20, 2013, radical nephrectomy June 5.

Annie

donna_lee's picture
donna_lee
Posts: 421
Joined: Feb 2009

Original surgery, 2006.  Recurrences in single nodes in 2007 and 2008.  So it's 7 plus years since Dx, and 5 years NED.

Donna

I am alive
Posts: 224
Joined: Jul 2012

I was diagnosed with chromophobe RCC - an 11 cm tumor contained within the right kidney - in 2004. Following a nephrectomy I was cancer free until 2008 when a tumor was noted between the vena cava and aorta. An LPND surgery removed it and againI was cancer free until the end of 2011. Since July, 2012 my small handful of mets have been stable, one even disappeared, thanks to a clinical trial of Avastin & Afinitor specifically for non clear cell RCC.

Phoenix Rising's picture
Phoenix Rising
Posts: 154
Joined: Jul 2012

I refuse to calculate from the time of diagnosis.  Even though I was diagnosed in 2009 as stage 4-- which says to me I'd been living with it for quite some time-- I had kidney pain on and off since 1986 or so. After surgery in '09 and a brief NED, lung mets popped up.  The lung and lymph mets and I co-exist right now, but I'm looking forward to evicting them. They're not paying rent, so they need to get out.

Galrim's picture
Galrim
Posts: 278
Joined: Apr 2013

NT

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Is the fourth anniversary of the accident that led to my diagnosis

adman's picture
adman
Posts: 268
Joined: Jul 2012

 

I was diagnosed 06/ 2012 and had surgery 07/ 2012 = Stage 1 / Grade 1 - 5.0cm RCC tumor. Originally diagnosed at 6-6.5cm.

People that I meet, where my disease comes up in conversation, always want to know, more than anything else, how long was this growing before they caught it?  I guess it's everywhere's deep fear and they secretly wonder when something is growing inside of them and they don't know it. I was kinda that way WAY before I found out.

Good questions - I wish I could get a good answer for this. I've heard anywhere from 5 years on the very low end to 15 years on the high end.

Darron's picture
Darron
Posts: 224
Joined: Jun 2013

Stage IV diagnosed on 10-9-12.

radical right and right  adrenal removed 10-16-13

2 lung mets gone

3.8 cm Left adrenal tumor now reduced to "swollen"

just had my 1 year!!

I am alive
Posts: 224
Joined: Jul 2012

My doc thinks the original tumor was growing for 10 years before discovery.

rae_rae's picture
rae_rae
Posts: 268
Joined: Oct 2010

Diagnosed in July 2010, open nephrectomy of left kidney October 8, 2010, 9cm clear cell, stage 2, grade 3/4. So far, so good.Cool

Djinnie's picture
Djinnie
Posts: 818
Joined: Apr 2013

I was first diagnosed in April 2003, I had Radio Frequency Ablation treatment.No further problems until a reoccurence was discovered at the original site in December 2013, this time I had a partial nephrectomy.

 

Djinnie.

cubsfan9
Posts: 43
Joined: Oct 2013

My husband's original diagnosis was 10/2004.  Left kidney, adrenal,and 11.5 cm tumor removed 11/2004.  He continued to receive scans/xrays and everything was clear until 12/2012. A large tumor was found on the pancreas that was determined to be RCC.  He started on Sutent 1/2013, currently on round 7!!  Tumor has shrunk significantly.

mean56
Posts: 11
Joined: Nov 2009

I am a 58 year survivor - born with wilms - radiation treated.

a.oakley
Posts: 32
Joined: Oct 2012

My husband was diagnosed February 2012, stage 4, mets to bones.  Nephrectomy was done January 2013.  

dme59's picture
dme59
Posts: 57
Joined: May 2013

A week from tomorrow I have my first post surgery checkup/ CT scan. Diagnosis was in April/May of this year and surgery was June 5.

Frank302's picture
Frank302
Posts: 71
Joined: Feb 2013

I was diagnosed in March 2011 with stage four RCC . My Urologist told me to get my affairs settled because I had a year and a half to go . Maybe I'm just dumb but I never did believe him .

Fortunately he sent me to an excellent Oncologist who didn't believe that year and a half stuff either. I'm still here with no cancer anywhere in my bod . Positive thinking can never hurt even in the most dire circumstances .

saintmont
Posts: 43
Joined: Feb 2013

I'm 2 and 1/2 year stage 4 with a number of lung mets I still work full-time, play golf, walk and ride a push bike. I am on votrient and every thing is stable.

danbren2's picture
danbren2
Posts: 195
Joined: May 2013

Originally diagnosed in July of 2011 with Stage 4 RCC, had right kidney and right adrenal gland removed in August of 2011. In March 2013 had lower 25% of right lung removed due to RCC mets, and in Nov. 2013 small tumor 1.1 centimeter on right side of brain removed.  I had cyber knife radiation treatment on brain after the tumor was removed and MRI for brain at this time shows no cancer.  On October 18, 2013 Cat Scan of lungs, pelvis, and stomach area were all clear of cancer, NED is a good thing!

parul
Posts: 24
Joined: Dec 2013

Oh thts great to hear Danbern ... Oct you are cancer free .. What is NED??.

Glad ot hear your story .. Lucky you are not in India or else they would ask you leave hopes and stay home doing nothing ... You never did Chemotheory.. ??

NanoSecond's picture
NanoSecond
Posts: 562
Joined: Oct 2012

NED stands for No (visible) Evidence of Disease, Parul.

danbren2's picture
danbren2
Posts: 195
Joined: May 2013

Parul,

     I have never had chemo, and only cyber knife radiation after tumor found in brain in Nov.  All of my RCC has been able to be surgically removed and unfortunately has been poping up in other places in the body.  But all has been removed and now at this time, this moment I am NED! (Thanks for the NED clarification Nano!)  I am very happy to be here and still fighting with all my being! This sight and all of these surviviors have become so imporatant to me, and they have made it very clear that life if what we make it, no matter what the circumstances are that we have to deal with.

     I am wishing you a Merry Christmas and a very Happy New Year!

                                                    Love and prayers for good health!

                                                     Brenda

parul
Posts: 24
Joined: Dec 2013

Thanks nano .. 

thanks :

rchalmer's picture
rchalmer
Posts: 15
Joined: Jan 2014

Since Diagnosis and 2 years and 2 months since I had a partial Nephrectomy on my right kidney. 

Been having anxiety about going back in for my next CT scan. I'm glad I found this site!

 

-Ross

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