Want to connect with kidney cancer patients

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?

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....

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

Reading these different experiences is helpful and enlightening. I continue to struggle with what to do. As I have posted before, I was diagnosed with kidney cancer in April of last year and have not taken any action at this point. My last CT scan showed some nodules in the lungs which the urologist was not concerned about; everything else was negative. I am having another scan tomorrow morning. In addition I am seeing oncologist on Wednesday; I last saw him 6 weeks ago. Urologist referred me to him, since I have been reluctant to have nephrectomy; because of my age of almost 82 I don't know if it is worth the risk and the long recovery period since I like to remain active. Oncologist recommended treatment with Keytruda, but checking side effects I still am not sure; and there is the commitment to those infusion sessions. Having gone through 42 radiation treatments for prostate cancer in 2021 and 2022 I don't know if I am up to doing immunotherapy treatment. I know doctors do not like to deal with patients such me who have difficulty deciding, but I will see what oncologist has to say this week; hopefully he won't throw me out of his office if I don't make the commitment for treatment.

I had two separate partial nephrectomys with robotic surgery.
There was some pain after surgery but I was up and moving within the first day. First surgery was actually much easier then second , but in both I was home in 2 or 3days , moving up and down but slowly. You'll likely need some help the first week with meals and medications etc. I found I was a little fuzzy brained for the first 4 or 5 days. Some people have pain from the gas used, but I did not really have much. I used pain meds the first 2 to 3 days and then only one at night to sleep well for 2 or 3 days after that. Then just Tylenol if I moved a lot for the following week. Fatigue was my biggest issue for about 3 weeks, and it's important to get rest, eat well and be hydrated well ... to keep the kidneys from going into shock from the surgery. You need to treat your body well for a few weeks. Hoping it all goes smoothly and you recover quickly.

Everyone who responded covered the things that happened post surgery…it’s amazing how much I’ve forgotten over the year and half since kidney removal! I blame my memory on the strong chemo drug (Cabo) and immunotherapy IV (Nivo). As long as it keeps the cancer away, I’m good with a bit of a lapse of memory:)
Prayers are with you and all of us! Prior to surgery, I was very scared about surgery and life. I’ve had so much done since my kidney removal, any surgery/procedure doesn’t affect me and I am very spiritual knowing I’m being taken care of! Praying is amazing for me!

I had my left kidney, ureter, and bladder cuff removed in late June of last year. My surgery was robot assisted and I was released the same day. The pain wasn't that bad at all and didn't need any pain meds after a few days. The only issue that I've had post surgery is fatigue. I deal with terrible fatigue most days. The Upper Tract Urothelial Carcinoma I have is very aggressive and was already found in my urine in the fall. I'm not worried about it though. Everything is in God's hands and when it's my time, it's my time. No sense in worrying about something that you can't control. I pray that everything goes well for you and many blessings to you and your family. 🙏🥰🤗

I have also noticed short-term memory loss on cabometryx (I have been on it 2 1/2 years). But, like you, I am willing to endure the occasional diarrhea, nausea, skin irritation, etc to have the success I am getting. I am 74 and forgetting an occasional name is not too bad for the positives received.

Absolutely! Day by day…I’m enjoying each one! We are blessed!

I'm newly diagnosed with ureter cancer. I'm having a radical nephrectomy May 15th. The procedure will be done with a robot.
Anyone else experienced with this?