Hi Katy

Im Tammy, I apologies if this posts twice I typed it out and hit reply but it vanished. I also have a Jacob (9) and two other children (7 year old twins) I'm not quite in the same boat as you as I only had my ct scan last week but fear I maybe in the near future. I was told from my ultrasound that there are many reasons a kidney can appear lumpy, although dr google (I know it's a bad idea) says otherwise and there must have been a reason they put me on the two week pathway. So although not the same as I've yet to have a diagnosis I can understand the worry and stress of waiting, I swing between I'm too young, I'm a year older than you so clearly not, and I want to see my babies grow up. Hopefully you recover quickly from the surgery and don't have to stay in too long, I know it's not the same as visiting but video calls are a good option. I commented on another sub forum on here, if you click my name you should be able to see it, a lady commented on there with the name of a Facebook support group that may be good for you. I'm very happy to listen if you ever need to chat or vent or whatever. Take care x

Hi I'm Jo, and I was diagnosed with kidney cancer nearly 3 years ago now , my tumour was nearly 10cm and was stage 3 grade 3 , I had a radical nephrectomy so lost my left kidney ! If I can offer and help or guidance in anyway please feel free to ask 

Hi Tammy, thank you so much for your reply! I have read your posts and requested to join the Facebook group, I feel like I need all of the help I can get! When do you get your CT scan results back? If it helps mine took a week before I got the call inviting me down. I just wish I had some magic coping technique. The whole thing is taking over my life. I can't do anything without thinking about it, and randomly bursting out crying. I think if I didn't have Jacob I would be handling it a lot better. I have managed to convince myself at the minute that something will go wrong in the op. Everyone is telling me to be positive but I know in myself that it is cancer, my thought process is, I've had a CT scan which I know shows up a lot. I just don't think they can physically say until it's removed, and in black and white. I am taking comfort though that they are only taking part of the kidney, surely if they felt it had spread they would take it all? X

Hi Jo, thank you so much for reply! How did you find the operation? That is what I'm currently most nervous about. Mine is a partial so I have been told it is key hole. I have never needed GA before so that is scaring me, I had a caesarean with my little boy but that's totally different! How did you cope? I just keep bursting into tears every time I look at my baby. Do you have follow up scans now? X

Hi Kate I was in hospital for four days , although mine was open surgery , the op itself for me wasn't as bad as I imagined although getting up from a seated or lying down position was challenging ! The pain was fine though , more uncomfy than anything ! I got scanned after 3 months as they saw a lung nodule that they wanted to rule out as a reoccurrence ( blessed to say it wasn't ) then I had a scan at 6 months then a year and then it went annually, and my last scan in June just came back clear too

Hi

Oh I'm glad you've joined hopefully the people of that group can set your mind at rest a little, I'm holding off on joining for now as I'm still not sure what's going on with me. I think I'll get my results at some point this week although I'm not sure who from, ive never spoken to a consultant I was contacted by phone by a urology nurse, luckily I have his number and he said I could call him anytime between 9-4 so if I've not heard by Thursday I think I'll call him. I understand the worry about it going wrong, I had convinced myself that I was going to have a bad reaction to the contrast, I'm not sure why but I was so sure, I even wrote my kids letters incase it went wrong and it got to the point that whilst sitting alone in the waiting room before I had the scan I was thinking I could just leave now, no ones here to stop me. I felt like an idiot after I'd had it though, my arm felt warm, then my feet and that was it, but yeah I was genuinely terrified. So I think being terrified of the surgery is completely understandable, could you contact your gp or urology maybe they have someone you could talk it through with? When my son had surgery he saw a play therapist who went through everything with him, they should have those for adults too! I understand people mean well And probably don't know what else to say but sometimes I think it's better to say nothing, if someone wants to talk, shout, cry then let but otherwise just sssshhh. Also not actually having a diagnosis yet it's like being stuck in limbo, I want to tell people but I don't want to be over dramatic, because what if it then comes back clear, I don't think you can possibly understand unless you've "had a cancer scare" From my extensive research lol yes I believe they would attempt to remove the whole tumour in one go rather than risking another operation, I've read most tumours when caught early are contained within the kidney so I'll keep everything crossed for you. Tbh that's the part that worries me, we already know my right kidney is not functioning and my left kidney has grown to compensate so how long exactly has whatever is going on with me been going on. So many questions, hopefully we'll both have the answers soon. X

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