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Pathology: renal cell carcinoma with sarcomatoid features

Sandroid
Posts: 8
Joined: Jan 2021

We got our results from the lab-  renal cell carcinoma with sarcomatoid

features. The numbers he gave us were T3/N1, metasized to the adjacent adrenal gland and regional lymph nodes.  A pet scan is ordered for next week as well as xrays, and further testing. Does anyone here have experience with this diagnosis? He didn't give us a "stage" but it sound like 4?? 

 

Biner
Posts: 80
Joined: Apr 2020

Hi sorry hear that,but looks like you still stage 3,stage 4 distant mets or tumor gross out kidney (gerota facia)

Please ask for CT scans not x ray,and keep positive its not death sentence 

eug91's picture
eug91
Posts: 305
Joined: Jan 2019

You're only stage 3. It sounds like your cancer's spread was localized - only to adjacent/nearby structures. So it's not stage 4. 

There's more explanation and info at https://www.cancer.org/cancer/kidney-cancer/detection-diagnosis-staging/staging.html 

Good luck with the follow-ups and further testing. And echoing what Biner said - stay positive! 

a_oaklee
Posts: 564
Joined: Nov 2013

The fact that your doctor is continuing to do further testing is the right thing to do.  Your pathology report should say what type of RCC you have.  Clear cell is the most common.  What type do you have?  Also the path report should say how many nodes were removed, from where, and how many of those were affected.   From the information you provided, you are Stage 3.   There is a grading system too, and I believe that hints at prognosis, but it depends on what type of RCC.

My husband was T31B N1M1.  Grade 3.  Stage 4.  He was diagnosed in 2012.  He is doing very well.

Please be careful what you research.   I hope your recovery from surgery is going well.

Sandroid
Posts: 8
Joined: Jan 2021

Thank you for the responses. I don't have a copy of the pathology report and when he read it, I do not recall hearing the cell type or specific classification about the nodes, except to mention one node contained a 4cm tumor, and there were small tumors in several other nodes. And of course the main tumor in the kidney was over 8cm and he called a T3, N1. Clearly he paraphrased the report and left out several important data points- we got the feeling the surgeon was passing the buck to the oncologist to give us the results with clarity, and we see oncologyin two days. Anyway, I suppose I was ill preparerd and too shocked to think of questions. I plan to get a copy of the pathology report tomorrow. Hopefully that will shed more light on the situation. 

 

Right now, I am trying to figure out the differences (if any) between renal cell carcinoma with sarcomatoid features vs. Sarcomatoid differentiation  vs. Scarcomaoid renal cancer. He specifically said "sarcomatoid features" when he gave us the lab results . Any ideas? 

Biner
Posts: 80
Joined: Apr 2020

Sarcomatoid renal cancer is a rare type of kidney cancer.

Most kidney cancers start in cells called clear cells, but they can start in other cells too. Almost any type of renal cell cancer can become sarcomatoid. This means that the cells of the cancer look like the cells of a sarcoma (cancer of the connective tissues, such as muscles, nerves, fat, blood vessels and fibrous tissue).

Sarcomatoid renal cancers tend to grow more quickly than other types of kidney cancer and are more likely to spread to other parts of the body. This makes them more difficult to treat.

But it all just words,important percent sarcomtoid features,how big main tumor and etc,also with this pathalogy people live long usualy kidney cancer slow grow cancer.I saw many people who live without progression 

a_oaklee
Posts: 564
Joined: Nov 2013

Our experience is that the surgeon is done with you after 1 postop visit.  If its cancer, you get sent to an oncologist who will explain everything to you, and present what they think is the best plan going forward.

Take someone with you.  

Get copies from now on of any tests you have.  Definetly get pathology, operative report and scans.   (I cannot tell you how many times I have heard of doctors failing to tell you all the findings).

Dont expect to learn all this stuff before your appointment.  

If I was you I would want to know what type of cancer, what grade, were the margins clear.  How many lymph nodes removed.

And then, of course, whats the plan?  

 

AliceB1950's picture
AliceB1950
Posts: 109
Joined: Jun 2019

Is the pathology report available through your online portal? One of the portals I have now posts results right away, so I can see things even before the doctor's appointments. I like that, since I can make a list of relevant questions.

Sandroid
Posts: 8
Joined: Jan 2021

Update after getting lab report: 

The finding is summary read: Metastic high grade renal cell carcinoma with sarcomadtoid, papillary and rhabdoid features, grade IV, mestastisized to lymph nodes with extranodal extension. The largest tumor was a pT3aN1

Anybody else have experience with this diagnosis? It seems very specific but there isn't any literature outside of medical journals. 

Biner
Posts: 80
Joined: Apr 2020

i recomend you register on smartpatients.com i saw few guys with same diagnosis

Sandroid
Posts: 8
Joined: Jan 2021

Thank you

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