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lieomyoscaroma

ptfaz3
Posts: 1
Joined: Feb 2009

Hi, first time posting - Felt the need to advise anyone with lieomyoscaroma of my experiences.

This is my third Reoccurrence – anyone in the surrounding area of Virginia with this or any cancer should see my oncologist.  Dr. Niefeld – he’s the best.  He is the reason I’m a three time survivor!!!! 

Rhandrh
Posts: 2
Joined: Sep 2013

5 cm mass on my left kidney...On Aug 31.....Walter Reed....we are active duty...I am 47 yr old spouse

My urological dr was sure it was Renal cell OR Lymphoma....NOPE....it is neither

CT biopsy results stated....Spindle Cell Neoplasm with. Smooth Cell Differation ......a Leiomyoma!!  Yes!!  praise Jesus!!

dr called 5 days later....says ...May be a leiomyosarcoma!!    WHAT!!   

Referral to Johns Hopkins in place...let the "big boys" figure this out and I'm gonna try not to worry.

But I am worried....

Any renal sarcoma survivors out there??  

Help  

Rhandrh
Posts: 2
Joined: Sep 2013

Ptfaz3,

Where is this doctor....even though I have a appt with Johns Hopkins....I would still like to know where this Dr Niefeld is.

Tell me how your Leiomyosarcoma story started and how you are doing?

Thanks

Robyn

jennydd
Posts: 2
Joined: Feb 2014

Any information you can forward to me would be very much appreciated. I think my husbands doctors have put him in the too hard basket after sarcoma has spread to several parts of his body.

regards

jennydd

Oneinabillion
Posts: 11
Joined: Feb 2013

I see this post was from Sep so you must have a lot more information and idea of what's going on.  I had renal leiomysarcoma removed along with a kidney that it was covering about a year and a half ago.  So far so good but certainly get nervous before every CT scan.  It was about 10cm and all we can do is get checked and hope for the best.  Good luck.

 

suzer1
Posts: 1
Joined: Nov 2013

I am curious as to what treatment you have had in the past- I have just completed radiation and have suregery next month.

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