CommunitiesRenal Cell (Kidney) CancerShould I have had staging scans before kidney cancer surgery?

Should I have had staging scans before kidney cancer surgery?

LA

Community Member

7 hours ago

Feeling a bit terrified. In April I had a partial left nephrectomy with a Stage 1b exophytic Papillary Renal Cell Carcinoma mass. My surgeon-oncologist never gave me my post-surgery pathology report. I received a 3-line email from his assistant on the hospital MyChart proclaiming me “cured” and that I would need “…scans every 6 months just in case it comes back” this is verbatim. I was left with many questions after I finally looked at the report, looking up terminology to assess what was what after my surgery. I was never afforded the opportunity. He never returned a call or my request for a conversation. I also found out he had left the hospital (University of Pennsylvania). Had I known he would be leaving I would have never had him do my surgery. With the assistance of my primary MD I decided to go elsewhere and liaise with a new oncologist. I have gone to a cancer dedicated hospital. Upon review of my surgical pathology report by my new oncologist, it appears I should have had more diagnostic testing prior to my surgery to see if the cancer had spread elsewhere. Kidney cancer is slow moving which means by the time they see if you’ve had it a while. My mass was 4.3cm shy of being Stage 2. While post surgery my margins were deemed “clean”, the mass was “grade 3”. This indicates fast moving cancer cells. It’s been explained there is a chance the cancer may have spread. I should have been given a CT Scan of my abdomen, chest, pelvis prior to surgery to check. So after being told I’m “cured” by this co-called MD, I now have to undergo testing to see if there is any cancer elsewhere. I was hoping to be past this at this point. I am grateful to my new oncologist for being so thorough and honest with me. I had the CT Scans on Friday. My brain fog is so bad I am having a brain MRI tomorrow. I am scared. I am angry. I am hoping these scans are clear. And if they are not that I will receive the proper treatment and survive. It’s disgusting I didn’t have an ethical doctor who I am assuming was only concerned with leaving and did not handle my case properly. This is unconscionable. I am glad I immediately secured a new oncologist at a reputable cancer-related hospital. I had no idea there were scans I should have had. I thought everything was being properly handled. You must advocate for yourself.

1 comment
Comment
CA

Community Member

2 hours ago

This sounds like an incredibly frustrating and frightening experience, and your feelings are completely understandable. Many patients wonder about staging scans before surgery, and different doctors may have varying approaches based on the specific characteristics of each case. What matters most now is that you've taken charge of your care by seeking a second opinion and working with a new oncologist who communicates clearly with you. Your advocacy for yourself shows real strength, and having a healthcare team that keeps you informed and involved in decisions is so important for peace of mind during this journey.

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