New Member

Welcome, Wilson. Your last paragraph strikes a chord with me: trying to maintain that facade or normality while feeling so anxious. I suspect that it is a pretty normal reaction. I do think, too, that getting informed can give one a sense of control, although Dr Google is not always our friend. This is a good site, for finding out about what you might expect.

My nephrectomy was back in 2020 during lockdown. After that CT scans until they spotted a suspect lymph node in 2024; then it was radiotherapy and now back to scans. Others have quite different stories. 

Wishing you all the best.

It is very difficult. What helped me was the nurse who did my nephrectomy pre op had had exactly the same thing a couple of years previously. She just had follow up scans and was doing well.

My tumour was a grade 4 and I'm having three monthly scans. The first in March was clear.

None us know what is in the future but I think when the chips are down we somehow manage to cope.

Wishing you well, I had a follow up 3 weeks after surgery and I got a copy of the pathology form about my tumour.

Hi

You are still in the early days and the uncertainty and raw emotion is real.  It's the worst time and we've all been through it.  

But.  It gets better from here.  It really does.  

The nephrectomy was the main treatment and anything afterwards is to prevent re-occurance.  You've done the hard bit!  

We have all suffered the waiting. :-(

The positives appear to be that it's been identified early, and dealt with.  Also it's not spread. 

Good luck.   

Hi Wilson.

Welcome!

I had my nephrectomy at the end of February so just a bit before you. I am recovering very well and planning to get back to work beginning of June.

Like you, I had the fatigue and for months I was spending all my energy working and the rest on the sofa falling asleep. I stopped socialising completely. I also had night sweat and like you I was told it was menopause. Waisted time on HRT treatment which obviously didn't do the trick!. Eventually had a blood test that showed I was fighting something. My story is in my profile.

With insight, I don't know how I managed to keep working till the end of January. I guess I didn't want to be sign off without a diagnosis, just I am too tired to work!!

Although, I am recovering from an operation, I felt so much better in myself since leaving the hospital. I am socialising, walking etc. Looking back, I clearly was quite ill!!

I am starting immunotherapy today and was told that it has 80% chance to come back. 

I am positive despite having a pessimistic personality. I found that through out my life, I have managed to be a fighter and have a "must get through" attitude when big, important things happen but not for day to day small things! Our brains and bodies are amazing and can be positive and scared at the same time which is confusing. I think you have a "normal" reaction. I have some good days and some bad days.

The waiting is the worst part! I am always worried when I am waiting for a test result! I try to put it at the back of my mind by doing something to distract my thoughts but. It's easier said than done unfortunately.

I wish you and your family all the best. You'll get through this!

Hi, sorry to hear what you’ve been going through. So much of what you say resonates with me, I’ve been following quite a similar path to you, my kidney tumour was detected on an ultrasound in January, which led to an urgent referral, and I had a partial nephrectomy in late March along with one adrenal gland removed (a small metastasis there).  I also have a couple of small lung nodules and am about to have another scan to see if they’ve grown, before the oncologist advises on further treatment, so like you, I don’t yet know the plan.

It’s all been a huge shock and I completely understand the anxiety you’re feeling, I have spent many days and nights worrying, and I’m sure that adds to the deep fatigue. I have also tried to learn and understand as much as I can about kidney cancer, how it metastasises and the treatment, I prefer to know as much as possible. It does seem that great advances have been made in the past few years in diagnosing and treating it, e.g. with immunotherapy, which is hopeful.  Wishing you all the best going forward.