new diagnosis - very little information given

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Hello all, I’ve been here for a couple of days reading posts from everyone.

My husband (47) had a scan for kidney stones and an incidental tumour was discovered. 4.2cm.

We haven’t yet met a consultant. The nurse over the phone said, all tumours are suspected cancer until after removal. We did have an appointment with an Urology registrar last week - who just went over MDT notes but we both felt he was almost unsure about the details and just reading notes to us. He did say MDT concluded it is RCC but now need to stage the tumour.

He had a chest and pelvic ct this week ( we don’t have the results for this yet)

I feel more anxious than my husband. Worried it has spread. The only symptom he has had is occasional blood in urine. But this can be caused by the kidney stones too. That’s what the GP said.

There’s also microscopic blood.

I think like many here we are feeling overwhelmed and lost at what is happening.

At that size, can there be spread?

We are scared.

please help with any encouraging words 

  • Hi there, firstly I’m sorry to read this. I bet you’re both very scared at not knowing the answers. 
    I had an abdominal ultrasound in June for something else and that’s when they picked up the 4.5cm mass in my right kidney. I was as scared as hell!!! I also had ct scans then for the abdomen & chest. They scan the chest to check the lungs. Fortunately mine is contained but I’m having my whole kidney removed. This was very scary news at first but after chatting to people on here and others I feel very reassured. 
    I too haven’t had a biopsy but I trust the kidney department. 
    You’ll both feel better once you’ve had the chest ct results and met again with a consultant to confirm everything and a plan forwards. I walked away from my last appointment feeling confident. 
    I’m 52 and never thought this would happen to me but I’m so glad it was found!!!! X 

  • Thank you for replying. 

    yes, we are scared and nervous. My husband doesn’t talk much but I can see how worried he is. 

    did you have any symptoms? 

    were you scared when you were waiting for the chest scan results? 

  • I didn’t have symptoms which is scary…  I was dreading the chest ct scan but thankfully was ok and just contained in the kidney. I’m carrying on as normal keeping busy on the lead up to the op. I randomly cry when chatting to various people about it as out on a brave face most of the time. 
    Your husband will feel better once he has answers xxx

  • I'm sorry to hear your bad news. I had similar a few weeks ago but my tumour is much larger. Your Husband's tumour (or suspected tumour at this point) has been caught before it's got too big so that's a huge positive.

    Regarding the test results, it's possible that they are already on the system and your own GP may be able to see them. My GP called me to tell me what she could about my latest scan, several days before my appointment, and that was very helpful as it gave me some broad answers.

    It's a very worrying time for all of us here, but remember you're not alone.

  • Thank you for your reassuring words. 

    that’s a good idea - it was actually the Gp that gave the initial news as we weren’t able to get hold of anyone at the hospital. 

    I will update here when I know. 

    thank you and I hope your treatment going forward is good, beneficial and most importantly makes you happy. 

  • Hi Lillybud100, I’m so sorry to hear your news. I’m 49 and on 4th April this year was diagnosed with stage 4 kidney cancer (12cm x 12cm x 11cm) with lung mets. My only symptoms were a bad back and blood in urine. I went to the doctors who sent me to the hospital for scans. I went on my own thinking it was just kidney stones! I have been under a consultant at The Christie in Manchester, who are amazing, for my treatment, I’ve been on 2 forms of immunotherapy at the same time. A tablet form and an IV. My 3 months scan came back only a couple of weeks ago with a reduction in the kidney and lung mets. I wanted you to know there is a lot of hope with immunotherapy. I always feel very tired and can be in a lot of pain but the MacMillan nurse and my doctors have been amazing in controlling it. I have a lot of hope for my future, I’m scared and get upset and depressed some days, which can be bad, but I come here and to other forums and see how people cope and get better which keeps me going. I do hope your results are good and you get the treatment required. GL and we are all thinking of you and your husband X