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clear cell renal carcinoma - chance for no-recurrence

sagibala
Posts: 4
Joined: Jun 2016

Hi,

My mom was diagnosed with clear cell renal cancer over a year ago. (6,3 cm at greatest dimension), classified as T1bG2 (it's almost T2).
It was fully contained within the kidney.

Have you heard of people who with more or less this tumor size and aggressiveness have had no recurrence or only a late recurrence? When I read about recurrences  of even  3-4 cm G1 tumors, it sadly looks like it just MUST come back :( . I'm scared as hell.

I'm looking forward to hearing from you.  Please remember I'm talking about CLEAR CELL type cancer.  

Best regards to all of you and I wish all the fighters here the very best.

 

 

APny's picture
APny
Posts: 1998
Joined: Mar 2014

The chance for recurrence for a stage 1 tumor is low but of course there are no guarantees. It all depends on whether you want to focus on the large percent chance of no recurrence or the low percent chance that it will come back. I would definitely never say that it MUST come back. It doesn't have to and in the majority of cases it doesn't. Mine was stage 1a and I was told there's a 5 percent chance it'll come back. Do I worry? Of course I do. But the odds are in my favor and in your mother's favor.

todd121's picture
todd121
Posts: 1449
Joined: Dec 2012

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

Pandabear1011
Posts: 123
Joined: Jun 2014

Hi, I had a radical nephrectomy for a 6.0cm grade 2 tumor (T1b) back in May 2014. So far I am cancer free. My doctor at MD Anderson said I have a 95% percent chance of no recurrence. I was also told that the grade 2 was considered low risk. That being said..There is no 100% guarantees that it won't return. Just make sure she goes to all her followups. Take Care, Panda

Bay Area Guy's picture
Bay Area Guy
Posts: 516
Joined: Jun 2016

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.

sagibala
Posts: 4
Joined: Jun 2016

Thank you for your comments.
I agree that lesions of 2 cm CHROMOPHOBE-type cancer can be close too 100%, as far non-recurrence is concerned. That sounds logical. But as for the doctors saying there's 90-95% of no-recurrence
for larger tumours IN CLEAR-CELL type cancer... well that sounds ridiculous.

* the recurrence risk being similar in clear-cell and chromophobe - well, I read out the opposite, chromophobe renal cancers are favourable and not really prone to metastases, which can't be said about clear-cell type.

*I also agree that follow-up care is important. Some doctors dissapprove of CT, as they claim it's harmful for the remaining kidney, etc... But i do my best trying to convince my mom to be examined with CT.

I would really like to believe this. It is my common sense that tells me it just can't be true. But once I see a couple of people posting histories of other people that haven't developed mets, I'll then believe that 70% might be possible.

foroughsh's picture
foroughsh
Posts: 779
Joined: Oct 2014

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

Forough

Hd67xlch's picture
Hd67xlch
Posts: 152
Joined: Apr 2016

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.

lobbyist0724's picture
lobbyist0724
Posts: 471
Joined: Sep 2016

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

Hd67xlch's picture
Hd67xlch
Posts: 152
Joined: Apr 2016

Its size was 5.7 cm and grade was 2.

lobbyist0724's picture
lobbyist0724
Posts: 471
Joined: Sep 2016

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

donna_lee's picture
donna_lee
Posts: 1016
Joined: Feb 2009

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

 

lobbyist0724's picture
lobbyist0724
Posts: 471
Joined: Sep 2016

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!

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

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.

lobbyist0724's picture
lobbyist0724
Posts: 471
Joined: Sep 2016

So true Fox, I recall reading a research paper saying that from 3 or 4 cm, every cm of size increases 7% of chance in terms of recurrence. But at the end of the day, just like another doctor told me, cancer doesn't come partially, so people won't get 90% or 50% of cancer, either have it or not. So let's not worry when it is not there. It is easier to say...

And Donna pointed out one of the most important thing, RCC is undetectable on any kind of lab exam until it becomes big enough to be caught by US or CT. Only with early detection, patients can avoid unecessary CT scans and receive treatment before the residual cells become a tumor again, especially when Sutuent is now proven to work as a adjuvant treatment.

Came across this news related to a potential treatment that might be vailable in the future. The same mechanism can also use for diagonosis. Hope that they can speed up the process of their R&D.

http://globalnews.ca/news/2273934/ubc-researchers-use-malaria-protein-to-help-fight-cancer/

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

I'm sorry but I don't believe this to be true. At this time, there are no known adjuvant therapies "proven" 

Please post references if I am mistaken, because last I heard this was not the case. 

lobbyist0724's picture
lobbyist0724
Posts: 471
Joined: Sep 2016

The trial result just came out recently targeting higher risk patients. Here is the link. Not sure when will the oncologists begin to prescribe it. Theoriotically, it should work on low risk patients as well. Also, if Cabo works better as a first line treatment, it should work better as an adjuvant treatment, that is just my assumption.

http://www.nejm.org/doi/full/10.1056/NEJMoa1611406

 

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Oh I dont know Fox, I was really annoyed when they took me off radiation, in their quest for the Abscopal effect, after only a week. But I've been feeling generally chesty and crap ever since they stopped. So maybe they were right. I guess I'll find out when I get the results on Monday. As for controlling progression, I reckon we're close.

magpie49
Posts: 5
Joined: Oct 2016

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!

APny's picture
APny
Posts: 1998
Joined: Mar 2014

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.

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