Hiya I'm rabecca I'm 38 they found a mass in my right mid kidney pole when i was pregnant last July no one told me untill October about the mass I found out by a letter saying I had been referd to a specialist I had a ct scan then a biopsy I was diagnosed on Friday the 13th of december 2019 with kidney cancer my baby was 3 months old heart broken wasent the word I had my whole kidney removed in February this year and its awfull thinking your alone with this and and worry of not knowing if you want to chatt about im happy to listen xx

Hi Rebecca, a lot has happened since I first posted this in July. I had an open partial nephrectomy in august and got my results back 3 weeks ago now. The tumour has been confirmed as cancer, however it is an extremely rare cancer. My results were going to the MDT committee to decide on follow up treatment. Because it's so rare they are unable to grade it as they simply do not know enough about it. He couldn't even tell me its name. Because of this they are treating it as highly likely to come back, so I will have CT scans every 6 months and be referred to a genetics specialist. I am struggling a bit at the minute mentally, I just can't stop having nightmares that it comes back. I get very emotional looking at my little boy and imagining his life without me. If you have any tips for dealing with the emotional side I would love to hear them. How are you doing now after your op? Xxx

Iv been referd for genetic test as well with been so young had them in july still waiting for them. Physically I'm ok mentally not too good I worry about every ach and pain that its cancer i cant really talk to any one because they just say oh you fine it's gone your lucky your still here I dont feel very lucky to be honest i feel angry all the time upset stuck if that makes any sence iv been in touch with McMillan and they sent me some booklets on emotions after cancer I still get pain in my side and back but no one seem to listen does my headin abit went for bloods doing on wednesday to check my kidney function I broke down crying and said it's not even over yet is it xxx

Yes I know what you mean, I get the whole 'the cancer has gone now the operation was a success' but it doesn't help. I feel like I'm living with a death sentence just waiting for it to pop back up. Having CT scans every 6 months is great, but emotionally I don't know how I'm going to deal with the run up and then waiting for the results. Hearing the words 'you have cancer' is a feeling that can't be described, especially with having such a young baby. Which I know you will fully understand. I wanted more kids as Jacob is our first but I don't feel I am able to now. How can I have more kids when I have been told there is a high chance my cancer will come back. I feel very robbed. I'm waiting for some more information and I have spoken with the kidney cancer support network who are going to help me get some more info on this particular cancer. I again just feel in limbo waiting for it to come through. Can I ask what happens in the genetics test? With covid I'm not expecting it anytime soon! Xxx

Yeh sirni had mine done in lockdown they ring you first to got though your back ground family if anyone else has had it like mum dad grandparents they then aent me a pice of paper to take to the doctor or hospital if your gp wont do it all they do is take blood samples off you then send it to the genetics team worst part is waiting because it takes up to 4 months to get them back their looking for the R224 geune in me to see if I have a fault. All the way through my referral biopsy ct and even day of my surgery I just made jokes about it to try and stay strong I think I did it more for my mum because she lost my sister 4 year ago I just brushed it off realy untill now its driving me mad thinking about it I have 5 kids one has adhd and autism so I know how it feels and my youngest has just gone 1 xxx

Thank you that helps! No one has actually explained what the tests will entail. Are you getting follow up scans now? I just wish I could switch off but it seems everywhere I look there's something that makes me think of cancer! Having the operation during covid times was brutal. Really bad experience xxx

Thank you that helps! No one has actually explained what the tests will entail. Are you getting follow up scans now? I just wish I could switch off but it seems everywhere I look there's something that makes me think of cancer! Having the operation during covid times was brutal. Really bad experience xxx

I have to a ct scan every year and blood aswell to keep any eye out its same with I never leaves you mind always a trigger to make you think of it xx

Just stumbled across this thread and made me feel I'm not alone in my experience. I was 37 weeks pregnant when they found a kidney mass by ultrasound and CT scan (was induced to deliver baby b4 scan) and MRI later they think it's cancer. I'm scheduled to have my whole left kidney removed in a weeks time. My baby will be 9 weeks and I have 5 year old twins too. They also found lesions on my liver and polyps in bowel which were investigated and not thought to be linked but having another MRI on liver in 3 months to check. Such a lot to take on board as well as pregnancy /new baby hormones /sleep deprivation and has put a dampener on what should be my new mum bubble. I'm breastfeeding too so trying to express for surgery period as they won't allow baby to come into hospital to feed due to COVID. It's keyhole so hoping to be out after one night. What were your experiences of recovery and pain levels after surgery? 

7 years ago I was about 28 weeks pregnant when tumour was found in my right kidney. My whole kidney was removed when my baby was three months old and it was confirmed to be cancer. 

I was followed up for five years; ct scans blood tests every 6 months. I also saw consultant following each scan and was discharged about 2 years ago.

I have noticed that recently I have been having a funny feeling in my left flank. Not pain, but more an uncomfortable feeling. I'm scared because I know the tumour I had before was there for years as I had been to GP complaining of flank/back pain, fatigue and had pre-eclampsia after first three pregnancies. Yet nobody thought to do a scan until I was pregnant with my 4th and thought I was losing my baby as I went to the loo and the bowl was filled with blood. I was peeing blood basically and it was the Obstetrician who realised it wasn't coming from my cervix and ordered the scan. 

Last week GP has done blood test which he says we're fine. Urine had blood but says wants to repeat in a few weeks. I feel like I'm getting really low in mood and worrying about this but nobody understands hiw I feel.