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Just wondering like my gross haematuria seems to be a common symptom for this disease but always an advanced one . Is there anyone on here that had gross haematuria but didn’t go right into a stage 4 diagnosis ? Thanks 

  • Hi Philw

    I had haematuria that's why gp referred a to urologist and subsequently diagnosed with stage 1\2. Cancer of right kidney. Hope this helps.

  • FormerMember

    Consultant has told me mine is T3a N0 M0, even with continuing gross haematuria, so quite advanced but not stage 4.

  • Yes well good luck to you mate . I was alarmed when the hospital note to the GP has described my lesion as large . I can see yours was large but did you know it was large before your appointment or did they just tell you you had a tumour/ lesion initially. ? 

  • FormerMember
    FormerMember in reply to philw

    thanks - and good luck to you too.

    I knew the size of it when I was called in for a face to face appointment with cancer support lady 2 weeks after the first CT scan and they told me I had cancer.I knew nothing about it at all before then. And even though they said it was well advanced and spread elsewhere and I would have palliative care and not surgery has turned out not to be true at all.

  • Oh right so you didn’t know you had a tumour until the appointment . I found out by phone then knew it was large viaa letters to GP so I’m going to the appointment next week already knowing a lot of info that is not helping me at all I think. !

  • Yes mate , i will be honest , it’s the prognosis that is scaring me . When they told you initially palliative care did they start talking about survival rates or not because I really do not want to hear that . 

  • FormerMember
    FormerMember in reply to philw

    The 2 week wait after the scan was a nightmare before they told me. I did think if it was that serious why they could not have told me sooner. There was no talk about survival rates but my mind was spinning a bit anyway trying to take it all in out of the blue like that. I walked out of hospital in a bit of a daze. A sleepless teary night followed and the next evening they called me to say that things didn't look as bad that they first thought.

    I since read that palliative care does not necessarily mean the end. Just managing the symptoms. But I don't even need that right now. Just the surgery and then go from there after they get the biopsy done of the cancer cells and the results of that to get a plan going forward.

    Try and keep busy this weekend and try not to dwell on it too much. Hopefully on Monday they can put your mind at ease a bit more.

  • Hello Phil

    I didn't have haematuria as a symptom ( at least, I don't think so as my urine wasn't checked), but I did have two visits, one to a dermatologist, and one to the breast clinic the next day. The histology from both, a couple of weeks later, indicated kidney cancer, so I knew my cancer was stage 4 even before I had my first CT scan. It is classed as stage 4 because the metastates are widespread, a long way from the kidney. In my case, this was my scalp, and my breast....but after the scan, in other places too. 

    In your case, you do not yet know if your lesion is a cancer, and if it is, you do not know yet whether it is contained within the kidney (stage 1), or has spread further (stage 2/3). It could well be that a stage 1 kidney cancer can have haematuria as a symptom. It does not necessarily only occur with 'advanced' cancers.

    I think you are overthinking this! I know it is really hard not to, but try not to dwell on all this and overwhelm yourself with information. When you go for your appointment with your wife on Monday, take a list of your questions with you, but give this to your wife, so that you can concentrate on what the consultant is telling you. Your wife can then prompt you if you've forgotten what you wanted to ask. But, be guided by what is said to you, and allow the consultant to lead the consultation.

    I wish you all the best for your appointment, and hope you will post on here to let everyone know how this goes. Everyone here has been through what you are going through, and understand the anxiety and fear that you are experiencing at the moment. We all wish you well!

    Try to fill your weekend with enjoyable distracting activities, if you can