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1.2 cm Renal Cell Carcinoma(low grade and dormant)

wcco9203
Posts: 36
Joined: May 2016

About a week ago, I had surgery to remove a 1.2 cm cyst that turned out to be a small cancer.  The doctors had been watching it for almost 2 years, and it had done nothing.  With all the anxiety and stress, I just wanted it removed.  I am glad I did.  The surgeon told me it was remove, and told me it was curative surgery, and that I am cured.  I asked about follow up exams and he said on ones like mine there is not much.  I just want to make sure I have a follow up plan to keep me healthy.

Any ideas?

Any recommendations on good urologist in the Houston, Texas area?

Thanks

 

medic1971's picture
medic1971
Posts: 190
Joined: Sep 2015

Welcome to our ranks and sorry you had to join...  

1.2cm is small and at this point you are cured, but I would still want follow-up. 

Here a brief rundown about my tumors, treatment, and follow-up:

Tumors: 2.2cm and 0.8mm- Chromophobe (right kidney) 2015

Treatment:  Partial nephrectomy at MD Anderson kept more than 95% of my kidney

Follow up plan:  CT scan once a year in Houston.  Every 6 months I have a chest x-ray and blood here at home (OKC).

Recommendations for follow in Houston... MD Anderson.  Dr. Jose Karam is who I saw, but they are all excellent.  I know that sounds like overkill for such a small tumor, but I don't play fair when it comes to kidney cancer.

Any questions please let me know,

Medic  

wcco9203
Posts: 36
Joined: May 2016

Thanks, that follow up plan sounds reasonable.  It sounds like the smaller ones have better cure rates with no recurrance.

Patty R's picture
Patty R
Posts: 7
Joined: May 2017

Medic--please email me at pkrand@me.com. I live in Houston and am also a survivor 

Jan4you's picture
Jan4you
Posts: 1322
Joined: Oct 2013

Glad you had it removed. Yes, your odds are good, BUT make sure they follow the 5 year follow up protocol!

Keep us informed!

Best to you, Jan

APny's picture
APny
Posts: 1949
Joined: Mar 2014

I agree with everyone. Don't neglect the follow up. Even if it's just once a year. Chances are excellent that the surgery was the end of it but I'd still keep on top of it.

wcco9203
Posts: 36
Joined: May 2016

What is considered a good follow up regime?

Jan4you's picture
Jan4you
Posts: 1322
Joined: Oct 2013

Your urologist/surgeon will tell you what YOUR monitoring protocol will be. Mine was Stage I, so every 6 months, for 2 years I think, then 1x a year until the 5th year. It includes such things as an exam, lung xrays, blood work to see functioning of kidney, and possibly CT scans for awhile.

Jan

dhs1963's picture
dhs1963
Posts: 510
Joined: May 2012

You are probably T1a (meaning less than 4 cm), and if a low grade, I am guessing 1 year followup, then maybe one at year 3 and 5.  Followup should be abdominal ct and chest imaging.

 

In my case, I was T1b (bigger tumor, 6 cm), but agressive (sarcomitoid features).  Followup was supposed to be every six months.  At six months, they found a met.  So I was stage 4.  That was every 3 months for years, then every six months until 5 years ned, then every year for a while.  

lobbyist0724's picture
lobbyist0724
Posts: 389
Joined: Sep 2016

I am so glad that you have it removed, and it is so small. Research shows that cystic tumours have better prognosis and tumour under 2cm rarely met or recur. But follow up is still important and it is non invasive.

Here is a link regarding follow up guideline, http://onlinelibrary.wiley.com/doi/10.1111/bju.13384/full

 

wcco9203
Posts: 36
Joined: May 2016

Do you think it would be considered cured?

lobbyist0724's picture
lobbyist0724
Posts: 389
Joined: Sep 2016

Clinically, yes. I recalled a well known urologist said, Kidney tumor doesn't really come back. The word recurrent is just that it presents that way. So on the day that we had our surgery, if there wasn't anything cell escaped, then it's done, but even if some cells did escaped, the amount might not be significantly enough to form a new tumor.

My doctor told me for a pT1a low grade tumor with negative margin and no negative prognotic factor, we should not worry about it. But follow up is still needed. For cystic tumors, he said he won't even recommend surgery until it reaches 3cm or with repid growth (this is according to the guidline) since most of them show indolent behaviour. Also, your is so small in diameter and volume. Your has a volume of 1.1 cm<sup>3</sup> only, on the other hand, a 5 cm tumor has a volume of 79.58 cm<sup>3</sup>. So you can see how much smaller your little buggie is (and it is now gone).

But even he said I am cured, but if you ask me do I think about it, yes, daily, but I guess it takes time for us to get used to the new norm. So I know he also tried to make me feel that he is watching on me, so I am doing more checkup (every 4 months) than what stated in the guideline.

Carmen

Shecka1121
Posts: 114
Joined: Apr 2015

I had the exact same tumor size as you. stage T1a and grade 2. my doc has me getting full abdomen and ct scan every six months for two years and one annual scan for the rest of my life. she believes chances of recurring are less than 5 percent more likely less than 2 but she wants to be on top of it. 

wcco9203
Posts: 36
Joined: May 2016

I was told mine was very dormant and was t1a.  The urollogistics/surgeon told me it was a curative surgery and less than 1% recur or met.  He sent me out the door telling me no worries that I was cured.  That it was out and gone and not to worry about it.

wcco9203
Posts: 36
Joined: May 2016

Has anyone on here experienced the urologist/surgeon telling you that you don't need to see an oncologis, and that he can follow you?  Is that normal?  Opinions please.

Sheeple
Posts: 19
Joined: Jul 2015

My rcc was also 1.2 cm, grade 2, and my urologist/surgeon told me that I would not need any follow up at all after my robotic partial nephrectomy, other than one abdominal follow up about 20 days after the surgery. I thought he was crazy saying that and convinced my gp to refer me to an oncologist. That oncologist even agreed with me that I needed some kind of follow up including chest ct imagery. However I never followed through with that plan and never saw the oncologist again after that first appointment. I just felt really bad about taking up his time when he could be caring for someone that really needed his attention more than I did.

BoondockSaint's picture
BoondockSaint
Posts: 241
Joined: Mar 2017

My wife's Urological surgeon told us pretty much the same thing. She was PT1a with a 3.5 cm clear cell with clear margins.....but, we are still going to see an Oncologist. She has an appointment with our family doc to get a referral on the 23rd.

Its not that we don't trust the urologic surgeon but at the same time we feel like the initial 3 month post op scans would be better done by an oncologist rather than the local urologist that made the diagnosis and referred us to the surgeon in the first place.

we just want to get the best care possible and stay on top of things as they come, if at all. 

We were told her outlook was excellent but still.......when dealing with this condition we will adopt a "Take no chances" approach from here.

daisybud's picture
daisybud
Posts: 461
Joined: Jan 2016

I also was told didn't need oncologist by my urologist.  I still went to oncologist.  I see both for followups.  I was t1a grade two clear cell.

Kim

wcco9203
Posts: 36
Joined: May 2016

Out of curiosity, what protocal  he/she using to follow up?  How do you mentally handle it?  The way it was explained to me was that the really small ones aren't normall removed until the grow or change?  The urologist said they are usually 4 to 5 times bigger when they are removed.

my urologist told me he can't give 100% on anything, but one like the size I had 1.2cm, there is more than 98-99% that there will be no recurrence or Mets.

 Mine is grade 1, t1a

anyone aware of info like that?

Allochka's picture
Allochka
Posts: 874
Joined: Nov 2014

Hi,

glad you had your tumor removed. My husband also was stage 1a, grade 1. His urologist told him chances are excellent, no need to worry and no oncologist needed. But he still requests a follow-up:abdominal  ultrasound plus bloodwork every 6 months and chest x-ray once a year. It's been 2 years since surgery and urologist is not planning to cancel follow-ups or make them less frequent yet.

if I were you, I would definitely want some checks, every half a year at lest for the first 2 years, and maybe annual after that.

Patty R's picture
Patty R
Posts: 7
Joined: May 2017

58 yr old Caucasian female, Diagnosed march 2013 with 2.9cm tumor on right kidney.  Removed tumor and 20% of right kidney in April 2014, confirmed chromophobe renal carcinoma. Follow up was Lung x-ray every 6 months for 2 years. Then, every year with abdominal Cat Scan every other year at MDAnderson, Houston. 

Jed the Humanoid
Posts: 7
Joined: May 2017

Your tumor was exactly the same size as mine. A week out and I bet you are still very sore, but likely starting to feel a fair bit better.

For me, I have follow up checks every 6 months for 2 years, then once a year thereafter. You will probably have something quite similar.

What I did to stay on top of things was to rest properly and then read up about RCC as much as I could. With a dash of luck surgery will be enough for you. My surgeon told me in his experience there was a 97% chance of non-recurrence.

 

Retcenturion's picture
Retcenturion
Posts: 240
Joined: Mar 2017

Mine was larger and my Urologist is following the National Comprehensive Cancer Network recommendations. If interested you can check each stage recommendation on their site. My Urologist also says that for now he is my point of contact, no Oncologist or Nephrologist. Hope this helps

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