Still waiting!

Hi 

Hi Jess, apologies but this will my first post and I have joined the forum just to reply to you. I too have been diagnosed with the same size tumour as you on my right kidney. It’s likely to be renal cell cancer but there is a chance it could be a non malignant tumour. I was given the option of a partial nephrectomy or a biopsy. I chose the biopsy, although have since found out that it’s not always possible to find out the other type of tumour with a biopsy.
I just wanted to say to you that I do feel for you as covid has added an additional layer of uncertainty to what is already a worrying time.

I just wanted to say I really hope that your date comes through soon…….it sounds as though you are trying to get on with life whilst waiting, which I guess is all you can do.

I hope you find everyone encouraging and am happy to keep in touch when I can.

take care, Jules x

Hi there, I have a similar problem - I was diagnosed on 14.12.21 - I have an 8cm malignant tumour on the right kidney.  I was told by the consultant that the referral would be made on that day for a radical nephrectomy at the Royal Free Hospital, London (I live in North Wales!!!!).  Without boring you with the details, after no communication for almost 4 weeks I discovered that there had been a cock-up with the referral by the hospital up here & the referral was only actually received in the Royal Free 2 days ago!  I have just had the week from hell because it was only because of my phoning, emailing the 2 hospitals that this was discovered. This has caused me and my family untold stress and anxiety - I dread to think what would happen had I not pursued the matter - the point is though - why do cancer patients end up having to do all the chasing around?  I've been told that my case won't be discussed by the team in the Royal Free until 28.1.22.  My advice?  Don't wait, contact your consultant's office ASAP.  Good luck. 

Wow Friars, I don't want to hijack Whatsgoingon's post but I remember you posting about your referral before xmas.  It stuck in my mind because you are in N Wales, and being referred to London.   Have sent you a friend request (from Scotland) claire  xx

Hi Jess, did you have a support nurse sitting in, in your appt with your consultant?  If so, this would be the person to raise it with.   It was too late for me for a nephrectomy but from what my urologist said, this is done pretty damn quick and as a top priority.  I suppose it depends where you are in the UK, but I've been on the cancer urgent list for a CT scan, a biopsy, and my oncology appointment and I received appointments for them all within 3 weeks. There's also targets for the time from first diagnosis to treatment.  We all hate waiting here so we all sympathise.  Claire  xx  

Hi Mmum, I have accepted the request but not sure if I did it correctly - if I've messed up - my apologies - please re-send!  Cheers

Totally agree with Mmum - there are NICE guidelines which ought to dictate the time line of your treatment - I think I'm correct in stating that you can find them on this website.  As you can see, there are many of us just waiting - in limbo - it's inhumane in my personal opinion.  Sending you best wishes - keep in touch - we can all support each other xx

Hi Jules,

thanks for your message! Sorry to hear you’re going through basically the same thing as me, sounds like we’re in almost the same boat. I wasn’t offered a biopsy though, just told to have it removed. Have you had your biopsy yet? 
really appreciate you reaching out, so nice to know I’m not alone in this (: x 

Hi Friars,

oh goodness!!! I’m so sorry to hear about your situation, that’s so so so tough and I’d be distraught if I was in the same situation! That is soooo unacceptable that they’ve messed up and are making you wait so long!

May I ask why they are referring you to London if you’re from wales? Was this your choice? I really hope they get in touch with you soon with a date!! Fingers crossed! 

And yes, I will get in touch and see what’s going on, I think it’s like you said, we seem to have to be the ones to chase everything, it was like that for me, they left me waiting for ages after my ct scan before giving me my results! It stressed me out so much! 

I hope you get the answers you’re looking for soon!  

Hi Mmum, thank you for your message. I didn’t have a nurse specialist sat in with me, I met him afterwards. He was the one that told me it was now looking at a 3-4 month wait and even that being covid dependant. 

I feel like the process has taken so long from the beginning tho, they found my kidney mass on the US on the 6th October, didn’t get my CT scan until 26th October, then wasn’t going to have a follow up appt until 20th dec, but have a friend who knows my consultant and managed to get the date moved up until the 6th December. 

I think my biggest concern is that it will spread the longer that they wait, but I guess I just have to have faith that it will all be okay! 

thank you so much for reaching out tho! I hope everything is going okay with you? You said it was too late for a nephrectomy for you? Does this mean you’re having treatment instead? Xx