Kidney Cancer

Hi Everyone,

I wanted to introduce myself, so I can help and offer information and encouragement to people affected by this terrible affliction. I am 50yr old male, and in November of 2017, I decided it was time to give myself the once over health check. I was perfectly healthy, no symptoms whatsoever. I had my bloods done as part of my routine health check, then a few days later my very attentative and excellent GP called me to say all bloods came back just fine, but I happened to mention that I had a slight sensation in my right groin ( I just thought I'd mention it whilst I was there ) which was not causing me any discomfort at all. It was this that made him suggest I go for an ultrasound just to be sure. So fast forward early January 18, I go for the ultrasound, and he called me again 3 days later. He said that something was showing in my left kidney but was not sure, so we scheduled a CT a couple of weeks later. He called me back just as quick to tell me that there was a 3CM mass in the upper pole of my left kidney. This is when my whole world collapsed around me. Remeber I had no symptoms, happily plodding along and then this, I was devastated, and it jettisoned me into a state of anxiety, stress and hopelessness. I had to wait a full month before my GP's urgent referral to a urologist happened. Now this month wait nearly killed me with anxiety never mind the tumour :) all joking aside, I will never forget that wait, as it was the unknown, you can't help but think the very worst possible scenario. No matter what people say, you too will think the same, it is just a natural reaction. On March 12th this year I had a partial open nephrectomy in Dublin's Mater hospital. My surgeon had origonally said that he will be doing a laproscopic surgery, however he felt that he needed more access. This initially disappointed me because the recovery times are quite significant between open and laproscopic. The surgery was successful and he took 40% of my left kidney containing my tumour. I won't lie beacause it's not fair, but it is a big op and the initial first 2 weeks recovery are tough, but you will get through it. You just feel alien, like WTF just happened type of feeling. After the morphine feed is removed along with the catheter and drain, you will be ready to go home, I was 6 days in hospital because I simply could not do bowel monement but would have been released sooner if I did..Chances are you will be given Paracetemol which is a joke, go to your GP and get Tramodol for 8 weeks. I find these are effective, as you will need them for the muscle and nerve pain post op. You will slowly begin to fell YOU again, but rest up as much as you can and do not lift anything first 4 weeks as you will risk hernia, and you don't want that. Start walking around the house after 2 weeks, keep moving as much as you can. I am now 6 weeks post op, and I am feeling like me again within reason. I returned to work last week ( office job ) and I did half days as I was feeling tired. It's all about building up your energy and strength 4 weeks post op but do not push it your body will let you know, all in good time. I have just received a latter saying that my follow up is 15th May 2018 so I am hoping for the best like everyone else. If you feel I left something out that might help you more, please ping me. I just wanted to contribute to the forum, because I would have been lost without it during diagnosis and post op. Good luck to anyone heading for surgery, you will be fine, just think on the day, it'll be done soon and think ahead. 

Parents
  • Hi DegsyB, I’m just wondering if your still available on line to have a chat if you didn’t mind. We just got word last Tuesday that my Dad who is 73 has a 1.4cm tumour on his kidney. I’d really love to have someone to chat to that has been through this awful thing. Thank you so much!! We are in Ireland to and my Dad has been referred to Tallaght but we are still waiting to hear from them. 

  • Hi Clodge, I just sent you a friend request so I can message you. Exactly a year ago I had my right kidney removed as scans had shown a 14cm tumour. It was a very frightening time as it is for anyone who has to go through it. Far and away the worst bit was the waiting. Waiting for the scans, waiting for the op, waiting for the follow up with the results. I was very lucky, my tumour was benign. I was 60 then

    and I certainly wondered whether I would be around for my next birthday. Please feel free to message me with any questions you or your Dad may have. I'm so sorry he has to go through this and wish himthe best possible result and swift healing. Love, Caroline.

  • Hi my husband has just had his left kidney removed(12 cm tumour ),he is home after 6 days and is doing ok,still has catheter in and is dreading the clips removal next Tuesday, had an envelope from the nurse saying when his next appointment is, as well as a  letter to give to our practice nurse which  read "pallative kidney removal" Iknow my husband  hasnt read it though he had opened it ,but I cant tell anyone as everyone is dam positive that this will give him many many years with us, and I know when we were first told about the kidney cancer that it wasnt contained and that he has spots on his lung, and that he would have targeted chemotherapy after, but seeeing the word pallative has just hit me like a ton of bricks i can only write here and ask the worse question ever about the person who you love so very much, how long can he survive I feel so very stupid allowing the word pallative to effect me like this.

    Please has anyone had experience anything like this I could do with some advice

  • Hi Caggie.

    Glad to hear your tumour turned out to be benign. mat i please ask if you had any symptoms?

     

    My husband has been told he has a large kidney tumou after having blood in his urine. we are now waiting more tests! everything i’ve read says if you are having symptoms it’s probably spread and the diagnosis isn’t good, i’m so so scared right now.

     

    Thanks

Reply
  • Hi Caggie.

    Glad to hear your tumour turned out to be benign. mat i please ask if you had any symptoms?

     

    My husband has been told he has a large kidney tumou after having blood in his urine. we are now waiting more tests! everything i’ve read says if you are having symptoms it’s probably spread and the diagnosis isn’t good, i’m so so scared right now.

     

    Thanks

Children
  • Dear Pugs, I’m so sorry you and your husband are going through this really scary time. Having been told your husband has a tumour but not knowing whether it’s cancer or whether or not it has spread is horrible. I didn’t have symptoms but the surgeon told me he was 90% sure it was cancer because it was very large (14cms)

    Try not to read things about kidney cancer on the Internet. So much of the information is inaccurate and it just makes the fear worse. I hope your husband gets all the tests done as soon as possible so you both know what he is dealing with. In the meantime just hold onto each other and do talk about your fears if you can. You’re on a really difficult journey no question about it but I’m hoping to hear of a really good outcome. It’s great for him that he has a deeply loving wife as you obviously are. If surgery is needed please feel free to ask me any questions about my experience and recovery. I’m not a doctor and everyone is different but I’m really happy to share my experience if it might be helpful. 

  • Thank you so much for taking the time to reply, it’s much appreciated.

    i’m pretty sure it’s going to be cancer with his symptoms and the size, we’ve prepared ourselves for that, his biggest fear is if it has spread. I really hope we hear something soon after the MDT meeting tomorrow.  it’s a month now since the first symptoms. 

    Thank you again for the reply.

     

     

     

     

  • Please let me know when you get news. I’m sending you a great big virtual hug. I hope and pray that it hasn’t spread. Once you do know, either way, I think you will be able to better deal with it. Our minds make up the worst possible scenarios don’t they? 

    Love to you both. I hope you find some good moments together today. 

  • I’ll defini let you know.  We’re both off to work today. I’m supposed to be taking our two boys (10 & 13) down to Devon to my parents for a few days but now I feel guilty leaving him at home, he’s insisting we go, he says ‘no need panicking until we know more’. We haven’t told the boys anything yet and they are so looking forward to seeing their Nan and Grandad. 

     

    X

  • he has a CT thorax scan today and a follow up meeting monday afternoon to go through all the results. He’s biggest fear is if it has spread to his lungs 

  • My thoughts are with you both. It’s a very frightening time. Are you with him today or have you gone to Devon? Hold on to each other and you will get through this. Whatever the result, I think knowing is better than the waiting. Sending you lots of love and strength for today.