new to this

kimekroth

I had a partial.. Tumor was 1.4 cm and patholgy showed papillary renal cell carcinoma.. Scared to death it will return... Advice please...

mom2two

Welcome

Hello, Kim,

I am so sorry you are going through this. There are a lot of great people on here that support one another. I currently have a lesion that is 1.4cm so your post really caught my attention. I actually have one in both kidneys. I am waiting on MRI results for staging. 

I would love to hear your story, if you feel like sharing. Did you have symptoms? How was it found? How are you feeling? etc.

I will say that everything I have read and heard there is usually full recovery with such a small tumor.

Take care,
Kathy

twinthings

I was scared too

Kimekroth, I'm so sorry for what you are going thru!  I understand your fear.  I was scared too.  I'm just about 11 weeks post-op and a whole lot less scared now than I was at diagnosis.   In the beginning, it seems everything happens so fast, first diagnosis then surgery, without much time to wrap our minds around the fact that we have cancer.  Once we hear that word, our minds tend to automatically turn towards the worst case scenario and before we know it , we convince ourselves we're dying.   Well, let me just say, knowledge is power!!  I started reading everything I could find on (Clear Cell) RCC.  And I reached out to the really cool people on this forum, from whom, I've learned so much.  I have learned, when caught early, like ours, RCC is not a death sentance.  Once it's surgically removed, we no longer have cancer.   That's not to say that every case is as simple as I make it sound, but I believe most are.  As far as fearing  recurrence, from what I've read and, believe to be true, we have no greater chance of developing cancer elsewhere than we had prior to RCC, nor are we at greater risk we'll develope RCC in our (for those of us who had radical's) lone kidney.  Personally, having lost both parents to cancer, I have to see my RCC as a blessing in disguise.  It means for the next five years I'll have blood tests, urine tests, x-rays and scans.  Chances are, if cancer finds me again it'll likely be caught early. 

Just try to relax and allow your body to heal.  Stay vigilant with your follow-up care and think happy thoughts.  You're gonna be just fine!!

Sindy

icemantoo

twinthings said:

I was scared too

Kimekroth, I'm so sorry for what you are going thru!  I understand your fear.  I was scared too.  I'm just about 11 weeks post-op and a whole lot less scared now than I was at diagnosis.   In the beginning, it seems everything happens so fast, first diagnosis then surgery, without much time to wrap our minds around the fact that we have cancer.  Once we hear that word, our minds tend to automatically turn towards the worst case scenario and before we know it , we convince ourselves we're dying.   Well, let me just say, knowledge is power!!  I started reading everything I could find on (Clear Cell) RCC.  And I reached out to the really cool people on this forum, from whom, I've learned so much.  I have learned, when caught early, like ours, RCC is not a death sentance.  Once it's surgically removed, we no longer have cancer.   That's not to say that every case is as simple as I make it sound, but I believe most are.  As far as fearing  recurrence, from what I've read and, believe to be true, we have no greater chance of developing cancer elsewhere than we had prior to RCC, nor are we at greater risk we'll develope RCC in our (for those of us who had radical's) lone kidney.  Personally, having lost both parents to cancer, I have to see my RCC as a blessing in disguise.  It means for the next five years I'll have blood tests, urine tests, x-rays and scans.  Chances are, if cancer finds me again it'll likely be caught early. 

Just try to relax and allow your body to heal.  Stay vigilant with your follow-up care and think happy thoughts.  You're gonna be just fine!!

Sindy

Kime,

We all led normal uneventful lives thinking  Cancer is what other people get and Kidney Cancer, who ever heard of that.

Then we here those words " you have  Kidney Cancer"  and by the way you are now going to have this not so fun surgery.

That is enough to scare the s--t out of anyone. It sure did me 11 years ago and fay across the street had hers 18 years ago when she was a young 64.

At 1.4 cm you are in the lucky 50% plus  cured by surgery alone. The chance of it spreading are close to zero and the chance of recurrance are less than 2%. And with the follow up tests anything happening will be caught early.

 

In summary you will get over this, you will get well and somewhere down the road you will be able to laugh about it as well.You should be able to do everything that you were able to do before except that roller coaster ride should wait a year.

As my surgeon says to me you will eventually die, but not of Kidney Cancer.

Icemantoo

rainsandpours

Fear is normal.  It means

Fear is normal.  It means you're alive .  You will recover, and can carryon knowing the alien is gone.

 

To note:  your doctors are smart.  They saw your mass, and made a decision to treat you right away.  That's a good thing.  Mine are wishywashy, and have been dragging it out for almost 6 months since they found it.  At last measure, my tumor was 1.7 cm (they didn't check size yesterday), and 3 different specialists have recommended 3 different treatments.  It's likely I'll sit tight with it for a while, and not endure more surgery right now.  The smart choice would be to have a partial, but I have a complicated kidney, and do not relish an 8 hr surgery.  Ugh, plus RFA is still on the table.  Hoping my biopsy comes back benign, and I can just forget about it.

 

Anyway, best wishes to you.  You're in the right home here at CSN for support.

Djinnie

Scared to death

Hi Kim, 

We can all relate to that fear, it goes with the territory I'm afraid. When did you have your surgery? I assume you have not had a follow up yet!

I know your type of cancer is not the most common, but it was very small and luckily has been caught in time. You have to try not to dwell on it too much or it will drag you down. The good thing is you will have constant monitoring to insure you stay cancer free. In the general scheme of things we have to consider ourselves the more fortunate ones, we have been blessed with a second chance:)

Djinnie x

Galrim

Type?

Hi Kimekroth,

Sorry to hear that you have joined our club here. Luckily you were caught almost as early as can be.

Was it type 1 or 2?

Type 1 is very slow growing and when caught in its infancy presents a very good prognosis. Type 2 is more agressive, but when caught as early as in your case still presents a good prognosis.

/G

kimekroth

Galrim said:

Type?

Hi Kimekroth,

Sorry to hear that you have joined our club here. Luckily you were caught almost as early as can be.

Was it type 1 or 2?

Type 1 is very slow growing and when caught in its infancy presents a very good prognosis. Type 2 is more agressive, but when caught as early as in your case still presents a good prognosis.

/G

papillary renal cell

papillary renal cell carcinoma, type 1 grade 1, 1.4 cm, surgical margins negative

 

Galrim

kimekroth said:

papillary renal cell

papillary renal cell carcinoma, type 1 grade 1, 1.4 cm, surgical margins negative

 

Type 1

Thats good. Your risk of recurrence is close to none with that diagnosis/resulting prognosis.

/G