Since being diagnosed with this crazy disease and feeling like the biopsy queen the only thing that actually has been on numerous CT scans since May ’08, has been a “cyst” on my left kidney approximately 3-4 cm. My urologist did not want to biopsy right away and the excuse was “we could do a biopsy but people in their 40’s can develop this type of cyst on kidneys, plus the Sarcoid diagnoses and since the PET scan didn’t seem to really glow that much in that one area (even though everything else looked like Christmas) it was nothing to be too worried about right now… It seems that the sarc appears to having its way with your insides”……So we waited…
Well, now it the end of October and yes another CT scan… and the “cyst” IS a “mass” and it appears to be well over the 7.2 cm size. I was told that there could be different shadows with CT’s so there is no totally accurate reading on size but it definitely almost doubled.
I was referred to another urologic oncologist for a second opinion because my rheumatologist and pulmonologist were very concerned and would not start my Remicade treatments until a biopsy was done. (Which I totally understand the reasons for that). The biopsy shows renal cell carcinoma (now I know why the RBC's and creatinine blood test were out of whack but being blamed on the prednisone) so now I’ll be having surgery on November 10 to have the mass removed. I’ll be having laparoscopic surgery but if it can’t all be contained I will have to have the full incision. I’m very worried and praying right now that it hasn’t spread and my kidney will be able to stay right where it is. (Maybe my bells palsy will go away and the dry mouth and eyes will subside after the surgery that would definitely make my day and my year for that matter!)
SO PLEASE, PLEASE, PLEASE, I know I sound like an advocate on being “cut open” (and I’m not) but DO NOT just self diagnose and/or have a doctor just assume that every cyst, ache, pain or symptom is SARC related. Most of it probably could be but… Biopsies are the only way to tell if it is Sarc or in fact real tumors. I hope this posting will help someone else NOT have to go through this craziness.
I once again thank all of you for being there all the time for me.
Happy thoughts and prayers to everyone. Eileen
P.S. HAPPY HALLOWEEN, yes I still will be celebrating my favorite holiday with the ton of neighborhood kids before going under the knife.