Potential diagnosis

  • 31 replies
  • 47 subscribers
  • 1661 views

Hi there 

I’m currently going through tests, about a month ago I went into my local urgent care centre with really bad pain in my lower back on the left and blood in my wee. They said it was suspected kidney stones but couldn’t test my urine properly because I was on my period. I was put on antibiotics and referred for an ultrasound. I had this ultrasound on Thursday last week (23rd nov) the drs called me Monday (27th) and told me they found a mass on my left kidney. I was referred for a ct scan and had that on Tuesday and then they called me again today and said I have to have a ct scan on my chest. I’m not sure why, I did ask but I can’t remember what they said. 
I have the nhs app and was looking at my notes because I was telling my sister in law about the full blood test I had and they came back as normal. I then saw my ct results and said probably RCC and the mass is around 6/7cm. 
I’m panicking and worrying, I’m a mum to 3 children. I’m nearly 33 and have a 12 year old, 9 year old and nearly 3 year old. I don’t want to leave them 

  • Hi 

    you have had a very quick turnaround so please class that as good they are reacting quickly. I’m sure all be good but to put your mind at rest can you ring the hospital or your dr to arrange to speak to you about it for the next step? 
    I have read a lot of ppls journeys on here and has put my mind at ease a little or join kidney cancer uk on fb 

    the reason I have said the quick turnaround is my husband was diagnosed stage 4 a 6 weeks ago and has took a month just to get a biopsy date which is Tuesday coming 

    I’m sure u won’t be leaving them stay strong and keep us updated xxxx

    good luck xxxx 

  • Hey 

    I’m waiting for an appointment with the kidney specialist so just a waiting game really. 

    sorry to hear about your husband, good luck for the op 

    xxx

  • Hi Tryingtohope, 

    I know how difficult it can be but try not to stress too much, I also had a CT scan of my lungs the day after my kidney scan and like you I was stressed out my head, they are just checking there is nothing showing within the lungs, it took about two weeks to hear back from my CNS that the chest scan was clear, you are in the system now and will be well looked after whatever the diagnosis is, try not to google your symptoms as you will only see negativity, and remember all treatment has come on so much now, it is just all the waiting in between that is soo stressful, but once you have a diagnosis you will feel calmer and be able to think ahead 

    take care xx

  • Hiya 

    what was/is your diagnosis if you don’t mind me asking? I hope you’re doing well 

    I have my chest ct scan tomorrow evening and an appointment for a camera in my bladder on the 11th 

    xx

  • Hi, 

    If you click on my name you can read my story so far, I also had a cystoscopy to check my bladder. I was diagnosed a year ago today with upper urotract cancer, it was advanced but localised, I first had a biopsy, then chemo to try and shrink the cancer to allow surgery, I then had a radical nephroureterectomy by robotic surgery, all went well and I am now fully recovered and cancer clear! I am having 3 monthly cystoscopies and 6 monthly CT scans to check for reoccurrence but I am well!

    Feel free to ask anything, and take care of yourself 

    xx

  • Ah sorry I didn’t know you could do that. It’s so great to hear you are clear! Thank you for telling me your story xx

  • Try not to worry too much! (Difficult right now I know).  Your mind is racing, processing a lot of info all at once and it can be very overwhelming. Joining the online community here is a big step in the right direction with a wealth of knowledge and experience and lovely people to offer support. and guidance.

    Kidney tumours are notoriously slow growing, that in itself is a big plus in your favour. Which is important to know to help with your concerns. What the Doctors will be currently doing with your tests from now on, is establishing the stage, this will usually be done by biopsy.  And also whether it has metastised, what this means is they'll be looking to see if the tumour has seeded elsewhere as in a secondary tumour. That will be what the scans are for. Once they have the results of everything they need to know, you'll be called in for a consult with your oncologist and he/she will talk over the results and treatment going forward, and you will be introduced to your specialist nurse, he/she will be your main contact going forward.. You could be going in for an op reaonably quickly if the tumour is just localised to your kidney, where you will normally be in n out of hospital in a few days. Or put on medication for a while while they monitor you, usually with blood tests. Medication will nearly always be immunotherapy, which could be a couple of pills each day, and maybe an infusion every 3 to 4 weeks possibly. - Immunotherapy is usually prescribed over an 18 month period. For the most part though, you will be able to carry on with your normal daily routine

    This will be the hardest part of the whole process and a lot struggle with "Patience". Everything slows down!!

    Hope this helps a bit, and good luck with your journey!

    Andy

  • Thank you for your reply, I read your journey too. This is probably stupid but I wish if I had an op they could just take the whole mass away. I haven’t been diagnosed with anything yet so I’m praying and hoping that they have it wrong and it’s a cyst or something but I can’t see that happening. Trying my best to be positive especially when I have children and they don’t know anything yet 

    I’ve never spent more than 1 night away from my nearly 3 year old either! 
    I’m a childminder too and I have a small hope I can still look after all the children 

    you’re reply has helped thank you 

  • Nothing is ever stupid!! Just saying  Slight smile  From what you've already said, if an op is on the cards, chances are it'll be a full nephrectomy, meaning the whole kidney rather than a partial. Reason being you mentioned blood in urine. This generally happens as the tumor attaches itself to and takes over the kidney blood supply, only normally lasts a day or two at most. Your consultant will disccuss all of this with you. btw, forgot to mention - Take someone with you for the consultation. Mainly because there will be a lot of information to digest and remember on your own, having someone with you for support is nice too. Make a list before hand of things you want to know!! 

    For the most part, honestly there wont be a huge impact on your day to day routine. Treatments are really good though these days, but everyones case is slightly different so cant say for certain everything will be fine.  Only two times that spring to mind where you WILL need help: - Biopsy, for 3 or 4 days after you wont be able to lift anything and must take it easy. Will feel like youv'e been kicked by a horse, pain relief will help though. And the other being if you have the nephrectomy, same as above but for several weeks. Keyhole surgery will only mean a couple of nights in hospital normally. Everyones recovery is slightly different though so I can only generalise from others experiences here. 

    Again good luck!

  • Thank you again, I appreciate your replies. I had a c section with my youngest and couldn’t do anything at all for 2 weeks then took it easy for about 4