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On my hospital letter to GP it describes my growth as a large lesion and though I know this is a Timor I guess it’s slightly different , abnormal cell area which makes me think that it is more aggresive . I know I should not 2 nd guess but the build up to my oncologist appointment is looming. Also I know it is a personal decision to ask about prognosis but I am very anxious about this and might just want to talk about my condition and treatment plan . Can anyone tell me how it plays out at these appointments. 

  • FormerMember

    In my case there was no mention of "how long have I got to live?" as they won't like to tell you that until they really have to.
    So yes it was more a case of talking about the size and stage of my tumour (NO apparent metastasis even though it is very large, contrary to initial diagnosis), being shown the scan images and being informed of the plan to perform an open radical nephrectomy operation. Also was told that when they take the kidney out and send it off to do a biopsy on the tumour they will only then be able to grade the cells to determine how aggressive the cancer is (Leibovich score) and formulate a plan for any ongoing treatment/scan frequency after that.

    Hopefully you won't have long to wait for the full diagnosis, and in the meantime try to stay positive with help from family and friends while you are waiting. Keep busy doing normal things. Waiting is the worst part. I have my pre-op assessment just over 2 weeks away and it seems to be going so slowly, so I am keeping mind and body busy, especially as I live alone but have super supportive friends and neighbours.

  • Hi Philw, I found it very strange that they describe your lesion as "large" without any references to the measures. They can consider  "large" a 4 cm lesion or a 10 cm lesion; who knows? And as far as I know, it's not possible to identify if a tumor is aggressive or not with a CT scan or an MRI. They can guess if it's malignant or benign, but not identify the grade. Or have they already biopsied your tumor? I know that the waiting is stressful, but try not to focus on the worst-case scenario.

  • Thanks for that , yes the letter said large tumor which makes me think grade 4 as im not sure if my tumor could be large if it’s grade 3 so that is a worry to me so it helps to talk in here. The fact the hospital letter named it as a large tumor makes me think it must be huge in order for them to give it that status just based on the CT scan result ! I know I second guess everything but it is very hard. 

  • The size of the tumor is important to decide the treatment. When tumors are less than 3cm they often decide to watch and wait. When they are between 4 and 5cm they can propose a parcial nephrectomy. When they are larger than 5 cm they propose radical nephrectomy, but you are stage1 till 7 cm. 7 cm or more without local spreading means you are stage 2. We don't know what they mean with the word "large" in the letter. Large enough to undergo surgery? Or to take off the whole kidney?  The CT scan will provide more infos about the stage and the final pathology report will provide the infos about the grade. Maybe the tumor is "large" because it start growing years ago, but it's not aggressive. 

  • Thankyou so much for that 

  • Hi Clarabella

    Your explanation of the size/grading issue is clear and straightforward. I'd just like to add, partly to reassure Philw,  that it is possible to have a 'large' tumour and be totally symptom free. When I first met my oncologist, he said that my tumour, a clear cell carcinoma, could have been growing slowly for 10 years without me being aware of it! It has shrunk by more than 50% after immunotherapy, and is now 'dormant'. I feel well, and am leading my normal life. Yes, this is a very scary thing to deal with, probably the worst thing that you can face in life, but I think patients with kidney cancer often fare better than others, as most kidney cancers are slow-growing, and can be treated, and controlled.

  • Thanks for your help , one more question , my gross haematuriu was pure red blood for a whole void which is a scary sight . Was yours similar . I also have dipped my urine ‘though I know I shouldn’t’ and always have plenty of blood in my urine since even though I cant see it with the naked eye. 

  • FormerMember
    FormerMember in reply to philw

    Yes I have had that twice - what seemed like a bladder full of watery tomato ketchup - scary indeed!! The first time  that happened I was straight to my GP.

    It now ranges from normal clear to rusty brown to watery red sometimes with a small clot or two. I wlll be glad to get rid of the kidney.

  • Yes I was straight to the GP aswell  , I had it twice and though my urine looks ok now there is lots of microscopic in there . Have you any other symptoms or are you ok