New Diagnosis Advice

Hi, sorry to hear of your mum's diagnosis. 

I was diagnosed by urology dept on 24/11/2021 (stage 4, advanced rcc, treatable not curable) and was referred to oncology (seen a month later) and for biopsy (3 weeks later).  

My understanding is that advanced kidney cancer means the primary has spread beyond the original site and by definition is classed as stage 4.   I've never heard a spread to the lungs being referred to as "spores" before.  So, either new terminology to me, or something else is meant.  

The terminology these days is generally "curable" and "treatable".  Because the treatment options have developed so much, "terminal" is little used outside the last few months, or a significant deterioration.  Stage 4 used to be associated with "terminal" but now people are living many years after a stage 4 diagnosis.  Instead, the terms "incurable" but "treatable" are used to diagnose a stage 4 cancer that today's medicine can not remove, but can control with very good long term outcome.  

From what I've heard on here, people with stage 4 are frequently given immunotherapy, with surgery reserved for situations before it's spread.  Stage 4, kidney cancers which have spread, are frequently referred to oncology and for a biopsy as a next step following diagnosis.  

Have you got a phone number on your last appointment letter?  You could phone up and ask.  

Thank you for this, that's more than what anyone has told us so far. All we have been told is that she needs the surgery but it's up to the anaesthetist to decide if she will be suitable. They only thing she was advised by the consultant is that if surgery cannot be done then it's not a positive outlook (but said no more than that). 

They have tried phoning but just got told to wait for an appointment with the anaesthetist and apparently he is busy so could be weeks. 

The not knowing is putting such a strain on the family, we have no clue what we are dealing with or the options available. We haven't been told the T, N or M or prognosis with (or without) surgery. Literally feel like no-one care at the moment.

I hope your recovery/treatment went well. It's a horrible thing for anyone to go through, even with modern medicine. 

SY245 said:

questions:

1. How long did you wait between diagnosis and a follow up?
2. What does it mean if it is advanced? (Does that mean stage 4? Does it mean terminal?)
3. Do spores on the lungs mean it is spreading?
4. What is the prognosis of this type of cancer?

So sorry to hear about your mum's diagnosis. 

Mine is pretty similar. The tumour has consumed my kidney and then some and I have innumerable lesions on my lungs. 

My tumour was discovered in Feb this year. My meeting with Urology was 18 March and with the Surgeon on 19 April at which point I was put on the surgery waiting list. I had an MRI on the 4th May and am still waiting on an op date. 

Your mum should have been given some contact details for some Clinical Nurse Practitioners and you should call them to find out what's happening. 

With mine the kidney tumour is considered the primary site and the lungs the secondary. The hope is that the removal of the tumour may reduce what's happening in the lungs. The lungs can then be treated with immunotherapies. 

My prognosis is that if the main cancer is removed AND the lungs respond to treatment my life may be extended up to 15 years. If the cancer does not respond to treatment then it's 2-3 years. As the lungs are considered a secondary site the operation on the kidney is classed as non-curable as the cancer has already spread. 

Please bear in mind that this is my diagnosis. I'm only sharing it as it's very similar with kidney and lungs and also fairly recent. 

The hardest thing in this whole process is the waiting. The NHS pathway bears no impact on this (according to the pathway I should have been treated by the 18 April).

My focus in this process is as follows:

Remain positive. You cannot change waiting list times no matter how angry or frustrated you may feel. Keep living a normal life. Be strong focus on activities you want to be present at a few years from now. Keep yourself healthy. Go for daily walks as being fit helps you get through the op. Find some good friends you can vent/cry and share your feelings with. Do not dwell on what if's. 

I am very sorry to hear of your diagnosis and hope you don't have too much longer to wait for your next appt. 

It sounds very similar to my mum's diagnosis. Thanks you for giving me more of an insight into the options and prognosis (I understand that my mum's may be different).

This has helped put my mind at ease to some extent, having more knowledge on it helps to see things more clearly, so thank you.

If you've met with a consultant about the next steps you should have been given the numbers of a couple of clinical nurse practitioners. I've called them umpteen times and they've always been super helpful.

In reality your mum and the rest of the family will still likely be in shock from the diagnosis. It seems unreal. 

I've found talking about it to close friends very helpful. I'm part of a local church and the support has been awesome. I've found little by little, a conversation here and a conversation there that I've been able to process the diagnosis and not let it overwhelm me. There are good and bad days, but generally I'm now on an even keel.

I agree that the waiting for the next appointment can be very debilitating. I have an urology nurse but only in the past few weeks. I do Pilates twice a week. I also sing in five different choirs. Not all at once. I have passed my pre op so I’m hoping a date won’t be too long. I also have reflexology. At the beginning I had long periods of depression and not sleeping.

My mum called the nurse but all she said was that we have to wait on the meeting with the anaesthetist, she wouldn't say any more. 

My mum doesn't have any close friends and won't reach out for support unfortunately. She doesn't want to talk to anyone. So I'm really appreciative of all the information and support on this forum. Thank you