Kidney cancer patients: Let's connect and introduce yourself

Hi! I’m Koke, the person who started this post months ago! I so appreciate everyone’s comments, experience, questions and progress! About a year ago, my right kidney was robotically removed. I was so relieved to have the cancer out of me. I had a biopsy a month before confirming I had kidney cancer. Three months later, determined by a CT scan, the cancer had spread to a lymph node attached to my lung. I am taking a chemo pill daily and I have immunotherapy IV every 4 weeks. My life has completely changed. I am very very blessed with a large support group and I pray a lot! There is no other choice! I watch my diet, try to exercise and have a very positive attitude! All this helps me tremendously! I pray for all of us. I find it very helpful to read and talk to all of us who are experiencing RCC. And for those wondering….I have had a tremendous success with the drugs! The cancer has disappeared….I pray it ‘stays away’….I live one day at a time!
Enjoy your day….Koke:)

Hi. By now you will have had your MRI. I live in South Africa so there's a time difference . But if you have any results.. (and I pray they are good results) please keep us posted as you go along. Blessings for the biopsy.

Prayers!

Lots’ of wisdom in your reply to me. I have had all the blood and urine tests. MRI just three hours from now. So your note was right on time and very helpful. I guess I will find out if they will want to do biopsy or if MRI gives them all information they need. Blessings.

My only comment is that reading these various accounts of those having kidney cancer and their treatment is a great help. I still have not decided to go through the prescribed treat of a total nephrectomy at my age of 81+.

Actually I did not have an biopsy before surgery. The tumor was encroaching on my kidney and reducing its function... have they done kidney function blood and urine tests? Those are important to monitor.
so whether benign or positive... tumor needed to go. For me it was why go thru another procedure , that has its own risks, when it needs to be removed anyway to save my kidney. So I opted not to. I actually had two ... one on each kidney, so had two surgeries 90 days apart.
MRIs are relatively easy procedures... possibly with an IV, roll you into a tunnel , and you hear lots of loud, very loud, rhythmic knocking noises. Key is to find a comfortable position at start and do your best to not move for the most accurate views and shortest time. I always get a pillow under my knees cause it is about 45 min . Sometimes they do no contrast first, then they add the contrast and it's another 20 or 30 minutes . Again, key is no movement . Drink lots of water afterwards to flush the contrast medium out.
Take someone with you to drive home, just in case you feel odd.
Also always take someone with you to appts to take notes for you. Write down you questions before you go... as they come to your mind. You'll have a lot. For me if a Dr seems reluctant to answer my questions when we have big decisions to make , I get another Dr. I need to be active in my own care.

Thank you so much. It is comforting to know someone is watching and listening. I have an MR I tonight. I have not had a biopsy yet. So they know I have a mass, but do not know if it has spread or even know what kind of pathology it actually is. Cancerous or not. Did you have biopsy before surgery? Appreciate so much your reply. Blessings.

In my experience I had symptoms of blood in my urine, and a CT showed the growths/tumors. It's not possible to tell fir certain that it's cancer without a biopsy... but they can tell that it's something that should not be there. My urologist recommended my surgeon... and after meeting him, I had confidence in him. I also researched his reviews. We opted for surgery and made a plan for what would be done during it , given the size of the tumor. I had partial nephrectomys which means removal of tumor and reconstruction of the kidneys with robotic technology...so it was less invasive... about 7 small incisions instead of large ones.

Just having someone answer is a relief. So thank you so much. I am having my MRI tonight. No biopsy has been scheduled as of yet. I actually see a surgeon next Monday. My Blood work is fine. I feel fine. They found the mass by accident. I will continue to list my progress as this goes on. Thank you again for your response. Blessings to you.

Hi....with me they told me what the cancer was called after doing the biopsy. The MRI was to make sure it had not spread to other places in my body. I have renal cell carcinoma. It had not spread. Was contained in the kidney. I was sent straight to an oncologist who started me on a treatment......a pill called Votrient. They also had a dietician there who gave me the foods to eat and what to avoid or limit. I have been on the treatment for a year and my MRI showed last month that the cancer was stable. Unfortunately I am supposed to have 800 mg of Votrient but can only manage 400mg because of the nausea. I don't know if any of this will be of any help but please let us know how you get on. 🙏