Want to connect with kidney cancer patients

I had stage 3 cancer on my left kidney, and it was removed at Cleveland Clinic June 20, 2017. Surgery was uneventful, but the surgeon made an error and nicked something that caused kyle fluid to seep into my abdomen. This required a "draining" of fluid every 7-10 days from June to Sept, 2017 as they tried ways to stem the seepage. Finally, doctors fed me through a vein in my arm for 8 hours every night from Thanksgiving and the leak finally sealed itself in January. During this time, I was not being treated for the cancer, and lost 60 pounds from the surgery and subsequent treatment to stop the leak.
Once the leakage was stopped, I was worn out and very debilitated. After a few months, the doctors found "spots" of renal cell cancer in my left lung. Surgery removed three nodules - one cancerous, two were not. After a few more months, they found new "spots" on my pancreas and spleen. During this time, and continuing through today, I have undergone immuno-therapy with Opdivo infusions monthly and Cabometryx pills (started with 40mg, but later dropped to 20mg). MRIs and CT Scans every 3 months showed a slowing and reversal as the cancer started, and continues to shrink.
After 22 months of treatment, the cancer still shows a few spots on the spleen, pancreas and lungs. I have regained my weight and some of my energy, and my coloring has returned. I was told that immuno-therapy (Opdivo) normally ends at 24 months, but the plan is to continue with Cabometryx as long as it continues to work.
So, I am at the best I have been since my surgery, and are coming up to 6 years, after losing almost a year after the surgical issues, which really held back effective cancer treatment.

Thanks; I appreciate the information on this very difficult decision I have to make. At my age of 81 I am very concerned with the after effects of the surgery and recovery times and pain. I appreciate your sharing this information with me.

I have just been diagnosed with a kidney cancer. The Doc hasn’t decided what kind of medication/treatment that is applicable for me yet. But I have planned to tell my Doc that I want the cancerous kidney removed by surgery. What do you think? Please comment. Thank you!

Hi! I would think that he would have given you a ‘plan of action’. I have stage 4 kidney cancer diagnosed last September. To confirm, I had a CT scan and biopsy of pieces of my kidney. It was determined I had a large mass thus requiring full removal. I have heard that others have had a part of their kidney removed. I started with a general oncologist but after getting a second opinion, I am so glad I went to a cancer hospital where my oncologist only studies and handles kidney cancer!
I’m more than happy to discuss my process with you to give you my perspective. Kidney cancer is very specialized to each individual. Take care and please reach out with any other questions.
Koke

@blueskies823 Welcome to Mayo Clinic Connect. A few years ago a mass was discovered on my right kidney, during a regularly scheduled scan for my multiple myeloma. We did a followup to that mass, and I was referred to a urologist/oncologist, after the initial renal cell carcinoma diagnosis. We did a watch-and-wait for three months to observe any change in size. This was due in part to my existing multiple myeloma and also end stage renal disease already in place. Too much on my plate! We had already decided that when I started on dialysis, we would remove that kidney. After the watch-and-wait for nine months, with periodic scans, the urologist concluded this was not a cancerous mass, but rather a benign cyst due to its presentation and how it was acting.

I would strongly recommend a second opinion by a qualified specialist.
Ginger

I had my kidney removed ten years ago and have never regretted that move. However must remember that leaves you with just one kidney

I think that would depend on the type of cancer and your age. Get a second opinion two heads are better than one. My doctor recommended my kidney surgery. Blessings and prayers…. MONA LIEBERENZ

I was diagnosed last November with RCC, had my right kidney removed. A follow-up CT scan showed tumors on both lungs and in shoulder muscle. I did 3 months of immunotherapy using yervoy and opdivo. The next 3 months was a double dose on opdivo. Latest CT scan showed that tumors had increased in size and a new growth on my remaining kidney. So started on the chemo pill. So hopefully this will slow the progression.

Thank you for sharing. My cancer has spread to a lymph node in between lungs. I have been taking daily target drug (cabometyx) and an IV immunotherapy drug every 4 weeks. Scans scheduled for next week to see what cancer has done? I didn’t think cancer could go to other kidney? I live very much day by day and try to enjoy life each day! It’s hard some days when I don’t feel great. The drugs have slowed me down, make me tired, changed my voice, constant cough and harder breathing. Every day I wonder how I feel but keep praying these drugs are getting rid of the cancer!
Enjoy your day. It helps a lot to share with people who live with KC too . Thank you!

Sounds familiar to what I'm going through. I have noticed my voice is kinda raspy. My last CT showed a tumor on my kidney, and lungs and lymph nodes. I'm 59 and I'm quitting work to focus on my health. Good luck on your journey. It does feel good to converse with someone who is going through the same thing. Take care.