I was recently diagnosed with renal cell carcinoma. I battled breast cancer in 2020 and won that battle. I'm not so sure about this battle though ... Much more anxiety this time. I'm having surgery October 6 to remove my kidney.   Please relax and let others do what they can for you. You need your strength to battle this ugly monster.    I wish you the best. You, and everyone else battling this horrible disease are in my prayers.   Christine  ... View more

Hi @Dunc999    I have had a similar diagnosis as you. if you were having your op 3 weeks after your post, you are either still in hospital or have recently come out. I'll give you my post op journey to give you an idea of what lies ahead. Short version...I am fit, well and so far so good, no sign of recurrence almost 5 years post surgery.   I am Male, 52,  so was 47 when diagnosed. My tumour was an incidental finding in a scan just like you, size around 3cm, similar to you. I had other scans, no sign of spread, so Stage 1. I had a partial nephrectomy to remove it and got clear margins. It was hanging off the bottom of my left kidney, so I've still get roughly 1.85 kidneys remaining. The tumour was Grade 3, so quite aggressive...I was incredibly lucky to find it despite having absolutely zero symptoms. I had a grumble in my appendix region so I had a Ct scan, turns out I have appendix stones! In the background they found a golfball sized tumour on my left kidney, the opposite side of my body.   My surgery went well, I spent either 4 or 5 days in hospital, can't remember. My surgeon gave me two simple instructions for post-op recovery. Drink plenty water and do absolutely NOTHING physical other than self care for 6 weeks. My wounds healed well but one day 2-3 weeks after surgery I went for a pee and dark brown gravy came out...he had warned me that might happen and if it was brown it was an old blood clot passing. Bright red is fresh blood. Within a few hours the bright red stuff started and I was peeing cranberry juice. Again, my surgeon had warned me this might happen (and it wasn't painful,) so I wasn't worried. He got me an ultrasound which showed I had a Urinoma, a collection of urine outside the kidney. He took me in the next day and inserted a stent into the kidney, which involved an overnight stay in hospital. The stent just helps urine leave the kidney down to the bladder. I had it in for 3-4 weeks I think. It was uncomfortable and limited me from pretty much any activity other than sitting and walking very slowly.   The stent came out (15 minute procedure, go home an hour later) and everything was normal from that point. That was roughly the 6 week mark, so the surgeon said I was free to do anything I wanted at that point. Until then, he literally didn't even want me walking to the end of my driveway. he explained that there are tiny blood vessels in the kidney that had been sealed and I had to be careful to allow it to heal. Anything that raised heart rate or blood pressure had to be avoided. I followed this advice religiously.   Once I was able to do things, I found I had lost a huge amount of stamina. I had lost maybe 8Kg, probably all muscle mass. I went back to work (I have an office job) and would come home and go straight to bed exhausted. Don't be too hard on yourself if you can't do much, the energy and stamina will return, it just takes time.   I was always terrified to push myself, but I just started walking a bit more every day until I was walking 7-10km a day. The big test was when i went back to playing football (over-45 Soccer.) I made my return to full contact sport 1 day under 5 months post op. In that game I had the ball smack me full on in the stomach and I got knocked over at full speed. I was worried I had hurt myself, but no, I was fine. I was in agony in the next few days, but only from using muscles that hadn't had exercise for months.   I have ultrasound and CT scans rotating every 6 months. So far so good. I've had a few lumps and bumps I've found that made me panic, but fortunately nothing sinister. I have a mucosal cyst in the back of my throat, and two lumps on either side of my jaw next to my Parotid glands that are actually unusually shaped pockets of normal fat. I need to be vigilant and get everything investigated. I broke a couple of ribs in another football fall...I needed to get them scanned to make sure there was no weakness from cancer spread but also to document where the break was for future scans. Future bumps could be cancer or just historic breaks. Yes, there is a bit of panic at every lump and scheduled scan. It never does go away. But I've never had any issues, touch wood.   In the last 6 months I've started having kidney stones which is weird...I get regular scans and they never appeared in any of those scans, then I've all of a sudden got at least 4, so I've had a few more scans due to them...again, nothing sinister showed in the scans. I'm a few weeks away from 5 years now. I'm not sure what  I'm meant to do at this point, I don't see my urologist now, just my GP. He's happy for me to have scans as long as I want now.   All in all, I'm fit and healthy with a few pale scars now. There wasn't much pain post up...I was only taking Paracetamol and Ibuprofen after maybe a week. I probably stopped after 10 days. The recovery was just tiring, but successful. Be kind to yourself, recovery is slow but you will get back to where you were pre-op in a few months. There are no special diet or other instructions. Eat a bit better than you used to, drink a little less alcohol than you used to, stop smoking if you used to, do a bit more exercise than you used to...basically all the things any doctor would tell anyone!   Summary...listen to your post-op instructions and follow them. Too much too soon is probably the worst thing you can do to yourself. Be vigilant and have regular scans. If you are unlucky and it comes back, catch it as early as possible and you might get away with just surgery again. Easier said than done, but try not to worry! Good luck with your recovery, and please let us know how you have been going...I found reading people's journeys and their successful recovery/remission to be a great source of encouragement which is why I drop by from time to time to share my experience. ... View more

HI Kat, I have no idea how to properly reply to your post. I just wanted to let you know that I have read your story and I am so sorry for what you and your daughter have had to go through. For what little it's worth you have my thoughts, prayers and love. ... View more