16 months after partial nephrectomy for stage1 PRCC Grade 4

bearware67

Hello everyone. I hope everyone is doing well. I haven’t been on here since I had my partial nephrectomy April of 2022. I felt like a new person after surgery in regards to my energy level. I felt like I walked out of a fog a few weeks after surgery . I wanted to get as far away as I could emotionally from being told I had a bosniak grade 3 tumor that landed me a partial nephrectomy and my diagnosis as papillary renal cell carcinoma stage 1 grade 4 contained to the kidney . I did some drastic things after I healed. I quit my job and moved closer to family and went back to the job I loved most. Iv been doing well with follow up scans since the surgery. Three months after my surgery they found a 4 mm Nodule on my lower right lobe of my lung. No other findings in my body. The doctor said they will monitor the lesion on my lung with follow up scans. I was doing well until around October 2022 when my blood pressure sky rocketed and I had a hypertensive emergency and was placed on a third blood pressure medication that brought things under control. I now have several nodules on both my lungs and the one they we’re monitoring is now 6mm,I have one on my liver, one on my pancreas all 3 mm or less in size. I am bruising easily and some days I feel good and other days all my joints hurt and I’m tired. Two weeks ago I decided to go to the ER because my right flank was hurting for a week or two and I was feeling really full after hardly eating anything. I also felt like my stomach was bloated after eating and I had a constant nagging headache. They did a CT scan of abdomen with IV contrast and found a bosniak stage 2 tumor on left kidney that was not there at last scans. They found a small amount of acities as well. I was referred to a urologist who is sending me for MRI of abdomen which is next week. In the meantime I saw my oncologist who had a stat CT of abdomen, chest and pelvis with and without contrast. (The scans were two weeks apart). The oncologist scans do not mention the bosniak stage 2 lesion on left kidney or the acities or the 6 mm nodule or other nodule’s on my lungs or any other nodule’s on liver or pancreas and the report ends with all is well basically . I’m so confused. Does this happen? In the meantime iv decided to go to what I think is a better cancer center, Sloan Kettering because I don’t know what’s going on and I don’t feel confident with how I’m being evaluated thus far. My urologist works with the cancer center I’m switching to so I feel good about that. I’m at a loss as to what’s going on and I was hoping someone might have some insight on this type of situation.

eug91

Hi bearware67,

I'm so glad that you were doing better, and equally bummed about your most recent issues. It's hard to know exactly what's happening - perhaps your doctor felt like they'd already brought up the previous nodules and didn't need to mention them before? Or maybe they felt like the newer thing is a more pressing issue? It's hard not knowing. Hopefully your discussions with your doctor after your MRI will give you some clarity as to what's going on and what you're up against.

Switching to a better cancer center sound like a good idea. Whatever happens next, try to stay positive. There are lots of new therapies and treatments available to you.

We're here for you - let us know how it goes. Sending you positive healing thoughts!

bearware67

https://csn.cancer.org/discussion/comment/1708664#Comment_1708664

bearware67

Thank you . I have really been struggling emotionally. It’s so much of a roller coaster and it seems like every time I have to go for scans I struggle. I think it’s because I was at a cancer center that just sends you off to other doctors and I just get lost in “ our next available appointment is three weeks from now “ and then a very delayed follow up to review the scans and they just don’t say anything to help me understand what’s happening. It’s seems like they just don’t tell me anything and expect me to just not care and go about my daily responsibilities as if all is perfect and none of my feelings or how my body feels matters. I really hope going to a full service type cancer center that has the best of the best will make things easier to deal with.

thank you so much for responding.

eug91

It's hard. The information comes so fast and furious, it frequently feels overwhelming.

Don't be afraid to advocate for yourself if you feel like you're not getting answers. Maybe tomorrow see if there's a way to email your doctor, or leave him a voicemail asking for a callback.

You've got this!