Still waiting!

Hi jess I'm in the same situation my tumor is not as big but I've also got tumor on my right kidney. Won't know if malignant till its out and sent to lab I was also told 70/30% chance let's just hope they telling us by the book and its not cancer fingers crossed for us both. And that we get app soon can I ask what area you are from? I'm from the wirral xxx

Hi Busybee, thanks for your message :) I am sorry to hear you're going through the same thing as me, although at the same time it is reassuring to know that I'm not on my own going through this. I'm guessing you don't have a date for surgery yet either? How long have you been waiting? 

Of course, I'm in Leicestershire, so sounds like the waiting situation is similar across the board! 

Jess xxx

Hi I have just had a partial nephrectomy, with the robotic assisted surgery I'm recovering well it's nearly 4 weeks now .I am still a little sore but I think it must be better than having open surgery . You will feel rotten when you come  round after a couple of days you will feel OK ish anyway good luck for when you have it done

Hi Mark, thanks for reaching out. Glad your surgery went okay and you are recovering well! Do you mind me asking how long you had to wait for your surgery from being told you were on the waiting list? 

Hi Jess and Busybee ( and everyone else). My mass was found in November and I had a biopsy 11th Jan. Although the MDT had taken place and the results were available I couldn’t get an appointment….eventually my GP told me it was cancer on my right kidney. I too have an area on my left so am having an MRI scan on that one. 

I saw the consultant and oncology nurse yesterday and was informed that it will be around 4months until my surgery….however as I had my last scan for the right on 1st December I will be rescanned to see whether there has been any change..

Covid feels like a perfect storm and we are all caught in the middle.

Jess, I am in Leicestershire too, so if you fancied meeting up for a coffee then let me know.

We all need to support each other don’t we…and this  forum is great for doing so

Big hugs Jules xx

Hi all, there is a common theme here isn't there? Delays which are being attributed to Covid - I am sure there is an element of Covid involved BUT what about the NICE guidelines? We are told that cancer patients are given priority - and NICE state that cancer patients should begin treatment within 62 days of initial diagnosis. A read of this thread will reveal that by the time I get my radical nephrectomy on March 15th it will have been just a shade over 3 months since the definitive diagnosis of the malignant 8cm tumour on my right kidney.  I don't know what's going on - is the NHS creaking under the strain of all those undiagnosed cancers etc which are only now being diagnosed?

Anyway, I feel for everyone here - as well as the physical illnesses we have we seem to be being put through the mental anguish (needlessly & cruelly) of attempting to navigate our way through the vagaries of "the system".  But some days we don't feel like fighting do we?  "the system" ought to be there fighting for us - protecting the I'll and the vulnerable.

I'll get off my soapbox now and wish you all a fab weekend - thanks for being there - it's been said before, thank goodness we're all here for each other.

Carolxx 

Hi jess  I'm having to have 2 operations . I had my first one 2 wks ago. My consultant said my second one will be 6 wks after. I know with covid they are not sending appointments out too soon so fingers crossed we will both hear very soon. Want it over with but also scared at the same time. Big hugs debs xxx

Awww u stay on ya soap box Carol does us good to have a rant xxx

Hi Jess

I had a Robotic Partial Nephrectomy 12/2/22 for a similar size mass.I came out of hospital 14/2 and was readmitted 17/2 for an impacted bowel.

My story started in July 2021 everything moved reasonably quickly until it was decided that an op was the answer,that was September and then it's been delay after delay.I got a call 8/2 to say op was 12/2.

The waiting is awful I felt as though I was last on the list and just forgotten about. Now I've had the surgery it's a five week wait for results.

The surgery has surprised me it's much more invasive than I'd expected.I had a radical hysterectomy,for cancer,three years ago and at the minute this op feels worse than that.My advice would be to make sure you get laxatives and stool softeners if you have morphine,the impacted bowel was horrific and I still feel traumatised about it.

I wish you all the best and hope your op goes well,If you have any questions I'm happy to try and answer them from my experience so far.

Hi Jules, thanks for your message! Hope you get your MRI and surgery through soon! I wonder if we have the same consultant/specialist nurse! So nice to know you're nearby, a coffee at some point would be lovely- i'll definitely take you up on that! :) 

Jess xxx