Well, it's kidney cancer awareness month and although I have kidney cancer (in addition to the Pancreatic Neuroendocrine tumors (PNET)) I never really talk about it. It's my forgotten cancer.
Why?
In a nutshell, the PNET is much more serious and has spread to my liver and some lymph nodes. The kidney is contained in the kidney with no spread and little to no growth.
The main treatment for kidney cancer is surgery, but since the PNET is more serious, no one wants to risk complications from a kidney procedure that could jeopardize treatment options for my PNET. So, I don't pay a ton of attention. But, I do pay attention.
The PNET is under control for now, but my latest scans have shown a small bit of growth (it was a "when" not an "if".)
After doing all of my own research (AI, community, etc), After my scans, I knew how I wanted to approach it. My doctor gave me the three options I was expecting:
Finish the surgery that we couldn't finish (so remove the tail of my pancreas and my spleen)
Get a radiation treatment called PRRT
Wait and get scanned again in 3 months and then decide what to do
For me, I opted for option #3. Let me explain why.
Surgery is very dangerous. I know a lot of people who want to get surgery to get stuff out of them, but I have had enough bad experiences with procedures, that I won't opt for surgery unless I have to (spread, big growth, trending towards trouble, etc). I doubt you would remember, but after my liver surgery in June 2023 I almost didn't come back. No one capped my IV, I got air in my bloodstream, and had to be intubated and sedated for about 2 days post surgery with a risk of heart attack and stroke.
PRRT is becoming more and more of a normal treatment option now. Most people are fine, although there are some cases of growth and spread post treatments. Plus, if I can avoid putting toxic stuff in my system, I will. But, this might be option # 2 if I need it.
Option # 3, or wait and watch, is what I wanted when I saw my Dr. I have growth, yes, but it's very small, mostly measured in millimeters. I have had two MRIs in a row and this is the first one that's shown growth. Since 3 data points help define a trend, I have decided to see if I am trending badly, or if it was a one-time thing. I don't want to jump into harsher treatments unless I have to and the growth I have seen to date isn't enough to scare me.
So, what does it all mean? For the PNET, I will get new scans in May and then we will decide what to do once we get the results. If I am still showing growth or spread, all options will be back on the table.
I know you are all wondering, "so what will your kidney do?" The answer is sit tight. While there was tiny growth in my kidney too, no one is worried about it. PNET has to go first.
So is my kidney the forgotten cancer? I wouldn't say so exactly. It's not forgotten. In fact my kidney scares me more than the PNET because it doesn't get as much attention. But I am very well aware that I still have it, even if I am not doing anything about it. For now.
I still push my doctors to discuss it and talk to each other about it (of course, I have to have two oncologists, and getting them to chat is my responsibility (shouldn't be but is) and I am not convinced they will talk on their own without my urging.
So say some nice words to your kidney this month. Let them know how much you appreciate them!
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