My name is Emily, I’m 40 years old and live in Cheshire with my wife. In May last year I started on the keto diet. I mention this, because I have since done some research and found it is possible for tumours to grow on a very low carb, high fat diet. I wonder; did this cause mine to start or grow? I don’t know.
I managed to lose 2 stone, working in my usual job in care and was feeling good. My wife and I went on holiday to Turkey in September. I wasn’t going to stick with the keto diet when I was away as I love to eat Turkish food. So, I went back to eating normal meals. As it was 36-40 degrees and we did a lot of walking I made sure to drink as much as I could. When it came for us to leave my legs and ankles were very puffy. As a result of a previous pulmonary embolism I put my surgical stockings on ready for flying, and didn’t think anything more of it.
Fast forward 2 weeks after returning home and I was getting a lot of pain in the centre of my chest and below my right shoulder blade. Especially after eating. I tried pain medication; nothing would shift the pain. It would also radiate to the right side of my back in the kidney area after taking ibuprofen. I am very stubborn and took a while before my wife eventually talked me in to going to my GP, she booked an emergency appointment and off I went. The GP suggested I had a gallbladder infection and I was sent to hospital.
At the hospital they ran tests, bloods etc. They decided the best action was for an ultrasound the next day on my gallbladder. Sent home with ibuprofen and told to come back the next day. Went for my ultrasound scan, technician there did the scan, we then waited on the ward for the results. We were told my gallbladder was fine, however they had found a 6cm mass on my right kidney.
The word “mass” immediately sent fear through my wife and I. We were told a CT scan would be booked as soon as possible to further investigate.
Two weeks later we went to hospital for a CT scan. All the time I was feeling very unwell and gradually in more pain and getting worse. Nothing was helping at all. I got my results after 3 weeks and was informed I was to have another CT scan to give the urology team more information about my condition. The letter told us I had a mass on my kidney, and they were unsure as to it being malignant or benign. One week later we were off for a second CT scan.
I had a phone call from hospital urology department at the end of November asking me to come in as soon as possible to discuss the results, preferably the next day.
My wife and I went in together, not sure what we were going to hear, but knew it couldn’t be good as they didn’t want to wait to tell us. “You have what we call a Bosniak grade 3 mass on your kidney. This is at the least an 80% chance of cancer.”
My wife and I sat at first in silence. I had just lost my beloved grandmother to cancer, it started in her kidneys but by the time they found it, it was too late for her to have any kind of treatment. I felt I had been hit by a truck. We sat with the consultant, my wife comforting me, all I did was cry, she asked all kinds of questions, I couldn’t even think. He was fantastic with us and told us to take as long as we needed. He said a partial nephrectomy was what he recommended so he would get that organised. As it was coming closer to Christmas, he was hoping it would be done soon after.
I was on Facebook that evening looking about to see if there was a support group for those with kidney cancer and I found the Kidney Cancer Support Network (KCSN). I joined up and the help, support and advice I received was fantastic. I would recommend this group to anyone looking for help. I didn’t feel so “alone” anymore, such a helpful, friendly group. Any questions I had from surgery itself to recovery have always been answered by those who have been through it all.
At the beginning of December, we met with the surgeon who would be doing the operation, he had measured the “mass” at 7.1cm so it was growing. He suggested around 40% of my kidney would be taken. One week later I had a phone call. The hospital had a cancellation; I was hesitant at first, but I took it. My surgery was on 23rd December. I just had to get it out and be pain free. I didn’t want to be in over Christmas, but I wanted badly to feel well again. I was in so much constant pain and felt so unwell. I have been told my face and skin was very grey.
I went for my surgery and it went well, approximately 3 hours in total. Six small scars, 26 staples and done by robot-assisted laparoscopy. Approximately 10% of my kidney was removed along with the “mass”. I was home on Christmas Eve. The surgeon phoned my wife after my operation and told her the “mass” was a challenge to remove as it was an odd shape and bigger than scans showed.
I’m now 8 weeks after surgery. Healing well and have some slight pain in my kidney at times. I have had a letter from the consultant. I opened it and prepared myself for the possibility of bad news. It was good news. I actually had what is called an “adult cystic nephroma”; apparently very rare. No further treatment will be needed. Yearly blood pressure checks and blood tests and that’s it. We are so relieved that our journey has ended. It had taken so much out of us both emotionally and mentally, I wouldn’t have done as well had I not been a part of the KCSN support group on Facebook. Thank you all.