Kidney cancer patients: Let's connect and introduce yourself

I am one week post surgery. I had robot assisted right total nephrectomy on January 12. I did well with pain management for about 15 hours post surgery. Then of all things I developed severe right shoulder pain. To gain a better view inside your body they pump CO2 into your body cavity. About 20-30% of time the gas is not fully removed by suction at the end of your surgery. Therefore, this gas irritates your phrenic nerve which can cause this shoulder pain. The pain was in the back of my right shoulder and it was not fun. This lasted for four days and gradually reduced. I did not take anything for pain after the fourth day post surgery. Minimal incision pain. I am tired most of the day. Now my big news. I received my pathology report yesterday, and the tumor inside my right kidney was not cancer. It was diagnosed as a ONCOCYTOMA. This is a non-cancerous lesion that looks and mimics renal cell carcinoma. Even a biopsy prior to surgery is not definitive for this type of lesion. I had to decide between a partial and radical nephrectomy. The odds were 90% this was a cancerous lesion. Therefore, I chose to have the kidney totally removed because of the central location of my tumor which was embedded around my renal artery. Now post surgery I do not have a right kidney, but I have one of the rarest benign/non-cancerous lesions. What a crazy journey. I continue to pray for us all. Blessings.
Doug

My surgery did not turn out well in one regard, but did in the long run...
My surgeon was the department head, and I assumed that meant he was both experienced and qualified. Unfortunately, he somehow "nicked" something and that allowed "kile" fluid to enter my abdomen. I had to have fluid (normally 6-8 liters, max one time of 12 liters) drained every 7-10 days. Uncomfortable, and required feeding through a tube into my arm for 4 months until it sealed up. I lost about 65 lbs and it was very debilitating.
However he also checked the bladder "while in there", and scraped cancerous cells off the bladder lining, and it has not returned. Other doctors have told me that they rarely check the bladder if the cancer is on the kidney, with no indication of any problem with the bladder, so the surgeon actually went beyond "the norm" to solve a future problem.
My surgery was full-blown and not "computer-assisted, and the incision went from left-to-right in an arc (maybe about 20-24"). The full surgery cut through a lot of tissue (I weighed 255), including through my diaphragm, causing me to have a residual problem with taking full breaths.
Now, since I got through the "nick" issue, I have put on weight (220 and holding), and are feeling well, except for minor side effect issues with the immunotherapy drugs. I feel I am back to about to 80%-85% of pre-surgery.
Post surgery, they found three nodules in my lungs from the kidney cancer, and they were removed without incident (only one was cancerous), and now I have a couple "spots' on my pancreas and spleen. These "spots" are shrinking with the immunotherapy (Opdivo infusion monthly and a Cabometryx pill every day).
Before your surgery, I would be certain what the plan is, which type of surgery and why, and side effects of that kind of surgery (if any). The best hope I would give to you is to "hang tough", hopefully have someone who loves you and will dedicate themselves to your recovery (44 years of marriage), and a belief in God (or a higher power) for comfort.
It will be a tough haul, but you can do it if you are determined and refuse to ever give up....

Hi @nivek, I wish you the best of luck with surgery next week. I can understand your seeking tips for what to expect after surgery. @dougr19 @koke @2ndjourney @lbrockme @drmarci @buckeyeveteran and others, how was recovery from surgery for you? What tips might you have for Nivek? What do you wish you had known?

@nivek, what type of surgery will you be having? Complete or partial nephrectomy?Laparoscopic, robotic surgery?

Welcome, @sher8262. Have you or a loved one been diagnosed with kidney cancer?

I've been kind of a mess. Couple years chasing back pain, scan found unrelated to back, bilateral kidney masses. Was being watched, had another back episode, subsequent scan showed growth on r kidney mass and scheduled removal but back was finally diagnosed and pain controlled week prior to surgery.
Confirmed papillary rcc that infiltrated kidney tissue. Mass removed. Watching both again.
My question is in regard to immunotherapy, I have rheumatologist appointment to discover back pain flair up causes and subsequent joint damage. Would could all be helped with immunotherapy?

I had kidney cancer 25yrs ago. My daughter was 6yrs old then and I was scared silly. I thought I'd never see her again. I had to have malignant tumor removed from kidney (which turned out to be removal of entire kidney). I had a great doctor/surgeon at the time. While I was crying hysterically being wheeled into surgery, he told me to grab his arm and squeeze with all my might. Next thing I knew, I was in my hospital room. The tumor was completely contained, I needed no chemo or radiation afterward. I was Blessed to be free of cancer up until October 2022, when I found out it had metastasized to a cyst in my upper jaw. Dealing with that now, praying it can be gotten rid of as easily as the 1st time.
Best wishes to you...may you enjoy many cancer free years ahead and have it NEVER come back!

Something they didn’t tell me was my diet. They said I could eat anything and I found out the hard way:(. I found eating lighter, easiest to digest food in much smaller portions worked best! I also didn’t take as many pain killers. I don’t do well with so much medicine in me.
I pray you’re feeling ok…day by day. I bet you’re glad it’s over! Prayers said for you!

I am three days post kidney removal. Had surgery Friday the twelfth, discharged from hospital on Saturday the 13th. Any questions? Take good notes and do exactly what they say.

I am praying for all the details!

I assume they took a biopsy of kidney? Second opinion? Drs specialty? Lots of questions I wish I asked. I’m a lot smarter than I was when first diagnosed. Lots to learn…take it a day at a time🙏