RCC returns after being cancer free for 20 years (updated 8/21)

C1dancer

Adding new message here as I can't figure out how to add to my boards otherwise.

Saw my urologist. He read the reports and looked at the CD that held my scans, but the CD is incomplete. He will be spending the day contacting the original hospital to get the scans as "pictures do not lie, but reports on them may." He will not order new scans/labs until he views what was taken as my body has been radiated enough. If he sees cancer in the pictures, he will call me (prob this Monday). Then we move on from there. Can't see the cancer? More tests. Can see the cancer, new discussions on what we can do. We discussed partial nephrectomy (remember my first was totally canceled with a tumor hanging from it, and so all removed), and partial lung removal (don't know the plan for the liver). We did not discuss chemo/radiation/pills or other courses of action. So now it is a waiting game. 

Because navigation of this site is difficult for me, please feel free to personally email me if you have that interest:

C3bdancer@gmail

 

 

After 20 years of being cancer free it was determined last week that I am now stage 4 metastasized in the right lung, liver, and left kidney. We are in shock and going in for a second opinion this week. If I need to, I will have a third opinion. Just wondering if anyone was "cancer free" and it came back. 

icemantoo

Wake up call

Ci,

Thanks for the wake up call to the other survivors and myself. I still get yearly scans after 13 years. Although my Doctor does not believe I am at risk any longer from my original cancer spreading, he still says there is a risk because of my history of RCC of developing RCC in the other kidney down the road. Is that what happened to you? What was the size of your original tumor? How long were you monitored by scans?

 

 

Icemantoo

Shecka1121

icemantoo said:

Wake up call

Ci,

Thanks for the wake up call to the other survivors and myself. I still get yearly scans after 13 years. Although my Doctor does not believe I am at risk any longer from my original cancer spreading, he still says there is a risk because of my history of RCC of developing RCC in the other kidney down the road. Is that what happened to you? What was the size of your original tumor? How long were you monitored by scans?

 

 

Icemantoo

So sorry you have to go

So sorry you have to go though this again. Good news is treatment for stage 4 has made huge strides from 20 years ago as I learned on this site. What was your initial diagnosis and treatment. Prayers to uou

Positive_Mental_Attitude

I am sorry you have to go

I am sorry you have to go through this.  Were you getting scanned annually? This is one of the scary aspects of having kidney cancer, or any cancer.  A colleague at work had a 20 year recurrence of breast cancer--she felt a lump in her neck and it was a tumor. 

I think there are others here who have had recurrences at least 10 or 15 years out.  Although I am a stage 1 with a small tumor that was removed about a year ago, I want to get scanned once per year for the rest of my life.

jason.2835

THIS

C91dancer,

THIS is why we should all DEMAND to be scanned, every year, for the rest of my life no matter what.  Not sure if you were having regular scans every year.  I know that the standards may have changed... Just terrible, but as it was said above, there are FAR more treatments for kidney cancer than there were 20 years ago.  Try to stay positive.

But this is proof positive that this highly unpredictable disease can come back many years later.  I had a small tumor removed back in October of last year.  I think that most of us are wondering what your initial situation was; how big was your original tumor, what type of surgery, prognosis, follow up treatment, etc... then everyone can better help you with their particular brand of expertise.

- Jay 

C1dancer

RCC Returns After 20 Years

I have been scanned and tested every six months for the past 20 years. I would not let them stop after my 5 - 10 - 15 etc benchmarks. I was told there are no blood markers for RCC ( yet they took 9 vials of blood each time), that I would get a secondary cancer before RCC would ever reappear, that I should stop worrying. I had been told that if even one cell was left in my body that it could reappear and attach to my brain, lung, liver... So I got a chest X-ray, liver ultrasound, brain scan each year, plus my remaining kidney was always tested for functionality. My original problem (1995) was stage 3 clear cell RCC, discovered a week after a total hysterectomy. Tumor was the size of a plum, encapsulated, hanging by a thread to a kidney that was completely cancered. Problem was solved by removing the whole right kidney, the tumor, all lymph nodes, a rib. No chemo or radiation necessary.

C1dancer

jason.2835 said:

THIS

C91dancer,

THIS is why we should all DEMAND to be scanned, every year, for the rest of my life no matter what.  Not sure if you were having regular scans every year.  I know that the standards may have changed... Just terrible, but as it was said above, there are FAR more treatments for kidney cancer than there were 20 years ago.  Try to stay positive.

But this is proof positive that this highly unpredictable disease can come back many years later.  I had a small tumor removed back in October of last year.  I think that most of us are wondering what your initial situation was; how big was your original tumor, what type of surgery, prognosis, follow up treatment, etc... then everyone can better help you with their particular brand of expertise.

- Jay 

Please see my next post.

Please see my next post.

C1dancer

Positive_Mental_Attitude said:

I am sorry you have to go

I am sorry you have to go through this.  Were you getting scanned annually? This is one of the scary aspects of having kidney cancer, or any cancer.  A colleague at work had a 20 year recurrence of breast cancer--she felt a lump in her neck and it was a tumor. 

I think there are others here who have had recurrences at least 10 or 15 years out.  Although I am a stage 1 with a small tumor that was removed about a year ago, I want to get scanned once per year for the rest of my life.

RCC Returns After 20 Years

Please see my next post. And NEVER let them stop checking on you every year. NEVER.

C1dancer

Shecka1121 said:

So sorry you have to go

So sorry you have to go though this again. Good news is treatment for stage 4 has made huge strides from 20 years ago as I learned on this site. What was your initial diagnosis and treatment. Prayers to uou

RCC Returns After 20 Years

Please read my next post.

C1dancer

icemantoo said:

Wake up call

Ci,

Thanks for the wake up call to the other survivors and myself. I still get yearly scans after 13 years. Although my Doctor does not believe I am at risk any longer from my original cancer spreading, he still says there is a risk because of my history of RCC of developing RCC in the other kidney down the road. Is that what happened to you? What was the size of your original tumor? How long were you monitored by scans?

 

 

Icemantoo

RCC Returns After 20 Years

Please read my next post. NEVER stop getting tested. NEVER. 

APny

C1dancer said:

RCC Returns After 20 Years

I have been scanned and tested every six months for the past 20 years. I would not let them stop after my 5 - 10 - 15 etc benchmarks. I was told there are no blood markers for RCC ( yet they took 9 vials of blood each time), that I would get a secondary cancer before RCC would ever reappear, that I should stop worrying. I had been told that if even one cell was left in my body that it could reappear and attach to my brain, lung, liver... So I got a chest X-ray, liver ultrasound, brain scan each year, plus my remaining kidney was always tested for functionality. My original problem (1995) was stage 3 clear cell RCC, discovered a week after a total hysterectomy. Tumor was the size of a plum, encapsulated, hanging by a thread to a kidney that was completely cancered. Problem was solved by removing the whole right kidney, the tumor, all lymph nodes, a rib. No chemo or radiation necessary.

I am so sorry this happened

I am so sorry this happened to you. It's so hard to swallow that even with religiously getting scanned and tested this still came about. Wishing you the best and yes, long strides have been made in stage 4 treatment but it still sucks and is so unfair.

foxhd

APny said:

I am so sorry this happened

I am so sorry this happened to you. It's so hard to swallow that even with religiously getting scanned and tested this still came about. Wishing you the best and yes, long strides have been made in stage 4 treatment but it still sucks and is so unfair.

Geeze,

I hope you were at least 80 years old when diagnosed 20 years ago.

Positive_Mental_Attitude

C1dancer said:

RCC Returns After 20 Years

I have been scanned and tested every six months for the past 20 years. I would not let them stop after my 5 - 10 - 15 etc benchmarks. I was told there are no blood markers for RCC ( yet they took 9 vials of blood each time), that I would get a secondary cancer before RCC would ever reappear, that I should stop worrying. I had been told that if even one cell was left in my body that it could reappear and attach to my brain, lung, liver... So I got a chest X-ray, liver ultrasound, brain scan each year, plus my remaining kidney was always tested for functionality. My original problem (1995) was stage 3 clear cell RCC, discovered a week after a total hysterectomy. Tumor was the size of a plum, encapsulated, hanging by a thread to a kidney that was completely cancered. Problem was solved by removing the whole right kidney, the tumor, all lymph nodes, a rib. No chemo or radiation necessary.

In your original post, you

In your original post, you said that  the cancer metastasized in the right lung, liver, and left kidney.  Were there any signs leading up to this most recent discovery in scans from 6 months or a year ago, or did the signs just appear recently?  I am very sorry you have to deal with this.

sblairc

Are you getting any biopsies?

I was just wondering since you were going for additional opinions, I was curious if this was part of your thought process.

The reason I ask is because a family member of mine had mets to their kidney from non-kidney cancer.  With it also being in the liver and lungs, I think if it was me I'd be pushing for 100% certainty of RCC. 

Keep us updated on your second opinions. 

 

mrou50

Sorry

I am sorry but remember you beat this thing once, so now you get tough and beat it again never give up the fight.  Cancer does not win this one.

 

Mark

Jan4you

mrou50 said:

Sorry

I am sorry but remember you beat this thing once, so now you get tough and beat it again never give up the fight.  Cancer does not win this one.

 

Mark

Sorry for all you are going
Sorry for all you are going through, dang! Frightening I am sure!
But know we'll be here for you, no matter what, okay hon?
Let us know what you need (and don't need) and we'll be here for you.
Sending you healing thoughts of light and love~

Gentle Hugs, Jan

C1dancer

Jan4you said:

Sorry for all you are going
Sorry for all you are going through, dang! Frightening I am sure!
But know we'll be here for you, no matter what, okay hon?
Let us know what you need (and don't need) and we'll be here for you.
Sending you healing thoughts of light and love~

Gentle Hugs, Jan

RCC Returns After 20 Years

Please see update 8/21.

C1dancer

mrou50 said:

Sorry

I am sorry but remember you beat this thing once, so now you get tough and beat it again never give up the fight.  Cancer does not win this one.

 

Mark

RCC Returns After 20 Years

Please see update 8/21. 

And yes, I'm a fighter!

C1dancer

sblairc said:

Are you getting any biopsies?

I was just wondering since you were going for additional opinions, I was curious if this was part of your thought process.

The reason I ask is because a family member of mine had mets to their kidney from non-kidney cancer.  With it also being in the liver and lungs, I think if it was me I'd be pushing for 100% certainty of RCC. 

Keep us updated on your second opinions. 

 

RCC Returns After 20 Years

Please see update 8/21

C1dancer

Positive_Mental_Attitude said:

In your original post, you

In your original post, you said that  the cancer metastasized in the right lung, liver, and left kidney.  Were there any signs leading up to this most recent discovery in scans from 6 months or a year ago, or did the signs just appear recently?  I am very sorry you have to deal with this.

RCC Returns After 20 Years

Please see update 8/21.

Absolutely no symptoms. No pain, excessive urination, blood, anything. The first was found looking for totally something else, as was this second. I have a friend that said, good thing you got heat stroke, then pneumonia! 

C1dancer

foxhd said:

Geeze,

I hope you were at least 80 years old when diagnosed 20 years ago.

RCC Returns After 20 Years

40 with the first, now 60. In each generation we live longer than the last. My grandparents (both sides) made it into their 70s. My parents just into their 80s. I was looking for at least mid to late 80s (by this way of looking at things my husband is guaranteed to get past 110). Now I'm looking at maybe 5 more years, lucky for any time beyond that, unless it can be surgically removed.