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Treatment after radical nephrectomy with sarcomatoid differentiation M0

Supersum's picture
Posts: 109
Joined: Aug 2017

Hello everyone I wonder if anyone knows what if any varieties of treatment are being delivered after radical nephrectomy with sarcomatoid differentiation and zero metastasis.

I have been`put on a program with zero intervention and 12-weekly scans but hope to get on a trial.

Are any interventions being delivered in this situation rather than waiting for something to appear in a scan?

In particular, are the PD-L1 inhibitors such as opdivo being used immediately after nephrectomy with zero metastasis?

Any thoughts would be appreciated.

APny's picture
Posts: 1998
Joined: Mar 2014

If there are zero mets I don't think you'd qualify for a clinical trial. If it was contained to the kidney and removed usually that's the end of treatment. I could be wrong of course since I'm not a physician but I don't know of anyone on drug therapy when there was no metastasis.

ZVM's picture
Posts: 21
Joined: Mar 2017

Hello Supersum,

Besides not having any mets I don't know anything about your RCC type, etc. There is a thread on the site Smart Patients that deals with this question. The thread is Chromophobe RCC w necrosis & sarcomatoid dedifferentiation. A stage 2 Chromophobe had participated in a trial of Everolimus, but she is the only one I am familiar with.   

Supersum's picture
Posts: 109
Joined: Aug 2017

Thanks for your help.

If an RCC tumor has sarcomatoid differentation then this means the person will not be able to join a general trial targeting RCC.

However, there are trials which specifically target sarcomatoid differentation and other aggressive forms of RCC which generally do not consider size and spread as factors for participating, although they would not want too many participants to have a low grade on the main staging systems as this would skew the results. People with "normal" RCC are not able to participate in these trials. There are other factors affecting acceptance besides the aggressive nature of the cancer I can only hope I am accepted then I have a 50% chance of getting the trial drug.

Thanks for the tip about the thread on Smart Patient I only just joined that group I have been reading here I will go and read the threads there later. I thought there was another popular forum which I can't find now but I might be mistaken it might be this one and SP.



Peggyz's picture
Posts: 10
Joined: Jun 2011

As yet, none of the adjuvant/preventative trials for kidney cancer have proved to do just that.  Certainly the most important thing for you to do is to work with an experienced kidney cancer specialist--and one who is familiar with the rarer forms of kidney cancer.  The typical oncologist is just not going to have the experience you need, and the connections to the other experts who may be required to treat you.

It is possible to enter a clinical trial which is intended for 'solid tumors', but most of those will also be for people with metastases.  In order to understand more about your situation, let us know the size of your tumor, your age, general health, what led to the diagnosis and a bit more about the pathology report.  Your first job while healing from the surgery should be to gather all that information and more, and also then to ascertain the experience that your doctor has.  The surgeon is usually quite good at removing the visible tumor; notice that I said VISIBLE.  All these things start small, and invisible to the naked eye, and also below the imaging capability of CTs.  X rays of the lungs won't pick up a tumor until it is about the size of a fat pea.  You want to be very aggressive about getting full scans, even if they are only to act as a base line for the many scans you might anticipate in the coming years.

peggyRCC.com for blog for patients; I am now 13 years out from a metastatic clear cell diagnosis, thanks to surgery and then to high dose interleukin



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