clear cell renal carcinoma - chance for no-recurrence

There's a 90% chance (probably better, even 95%) that your mom is cured with clear cell T1, Grade 2 tumor with the surgery. Odds are in her favor.

Still, I'd keep up with screening. Better to catch it early if it does come back when it's operable instead of catching it late. The best screening is a CT of chest/abdomen and pelvis with contrast if possible. There are guidelines for this, but there's argument about whether the guidelines are adequate. I'd want these CT every 6 months for 3 years then annually after that. I wouldn't stop at 5 years (some docs will want to stop at 5 years). I've met too many people with tumors like that that have had recurrences 10 years later to feel comfortable stopping annual scans.

If you're being followed by a urologist, chances are they will just want to do a chest Xray and a CT of abdomen/pelvis (or an ultrasound of abdomen). They will do the minimum. Personally, I would not feel comfortable with that level of screening. Lungs is one of the most common places for recurrence. You want to catch it early when the nodules are few/small. By the time something shows up on an Xray of the lungs, it's too late for my comfort. Similarly, I don't feel ultrasounds catch small tumors early enough. If your mom isn't getting the close followup she wants, find another doc. An oncologist, particularly an RCC specialist is the best person to make these decisions. They understand the recurrence patterns best and also are the best person to decide what to do if it comes back. If there's one nearby, I'd see one for followups instead of the urologist. This is what I'd do.

Regards,

Todd

My   doctor said the chance of recurrence was very small as well, in the 2% to 5% range, just like everyone else has been saying.  I had a 2cm lesion removed with a robotic assisted laparoscopic partial that was found to be chromophobe RCC, so different than your mom's version.  But from what I understand, the recurrence risks on both are pretty similar.  I've been told I'll have routine scans every six months for a while, then every year for a while after that.  I actually don't mind having the scans as if they detect anything, it will still be at a stage where intervention can be  successful.  I'm not going to lie and say I'm blissfully unconcerned about a recurrence.  But at the same time, I'm definitely not obsessed over it.

I had radical neph in August 2014, stage T2b,grade2, clear cell and I'm NED

Forough

Hd67xlch said:

It happens

I had   T1 Nx M0 Stage 1, left kidney removed in 2011, it then came back in my right lung as two small mets in 2016 on my 5 year scan, was going to be my last scan if it came back as negative, I had them surgically removed from my lung April 1st, so it happens. I go in for my 4 months ct scans and bone scan in about 4 weeks, so we shall see if it bites me again.  My Dad had pretty much the same thing with his kidney and lived another 35 years  without it coming back anywhere, so basically IMO they really dont know who it will come back on and who it wont.

If you don't mind, can you share the grade and size of your tumor? Thanks!

donna_lee said:

There's a difference...

A recurrence usually means that some cancer cells had already metastasized to another place, but were undetectable on any kind of exam (U.S., CT, or even a visual during surgery).  That was my case a year after the original surgery and again a year later.  See my Bio page for details.  Even now, 10 years after Dx., I'd be inclined to believe that a new round of cancer would more than likely be a latent growth of cells already in the body.

And because there, as yet, is not a test for the kidney cancer cells that may show they are circulating or shedding cells into the other systems, there is no way to tell if the cancer is present.  I never say I am cured.  I am a cancer survivor.

If I've burst your bubble, I'm sorry.

All best wishes to you and family,

donna_lee

 

Hi Donna,

What you've said remind me what Dr. Jewett said in an interview (see link below). Where he mentioned the tumor usually doesn't come back if it is localized and removed completely, the "come back" is just how it is presented when either the cells escaped from the tumor before removed or the tumor wasn't completely removed. 

The question is at 5'55"

https://www.youtube.com/watch?v=2FrYh_1F6fU&list=WL&index=11

Best wishes to all of us!

Hd67xlch said:

Dont mind

Its size was 5.7 cm and grade was 2.

I think there must be an angel watching you, so it was found before your last scan. Hope that is just an isolated met and stay NED much longer than your dad.

Carmen

I am sorry to hear about your Mom.  I hope hers is totally isolated and does not come back.

My initial cancer was 4.4 cm grade 2/3 Clear Cell (2006)  Had kidney removed and my doctor scaned every6 months for 2 years, then yearly until the 5th year. Once again in year 7.  All was great. So 10 1/6 years out it did come back in my lung.  So my idea is to scan and re-scan.  I also was told by MDA Dr "I guarantee you it will never come back, you do not need scans" when I went for second opinion after the 1st year ended.  I am probably an odd ball out, but there is no harm in being overly cautious.  i am very fortunate that my pulmonary doctor scanned and watched it then ordered biopsy.  Best to you and your Mom!

It's good to be vigilant. This is one sneaky %$#@ of a cancer. It can and does come back, so no matter how small the odds, we need to keep top of it. Mine was similar to yours, Magpie. Stage 1 (3.4 cm) and grade 2/3. I had a partial and told 95 percent chance it won't be back. Well, there's a 5 percent chance it will, so I have no intentions of stopping the scans and follow ups.

foxhd said:

just the nature

of renal cell cancer is such that unless a tumor is completely removed with clear margins, the risk of "re-occurance" remains present.  We have seen people with reoccurances at 10 years and more. As a result of this cancer being so difficult to erradicate, most facilities treat it palliatively. A cure is no longer the realistic goal. The realistic goal is to control progression. I personally believe oncologists could be a little more aggressive.