Kidney tumour and investigation of lungs and lymph node - scared waiting

Hi I this is near exact as me last march when I had a full nephrectomy to remove the whole kidney. Scans showed a couple of nodules in my chest and one of my lymph nodes I was offered the immunotherapy but was advised not to take it due to other health problems. I had my scan there two weeks ago and the nodules are still there but they are stable ( no growth yet) I have found the mental side of it very hard and still do it learnt me take one day at a time and keep talking there are a lot of lovely people on here 

Elsie

Hi 

Therapy said:

Anyone else had primary and spread elsewhere 

Yep.  Nov 2021 diagnosed with kidney cancer spread to the lungs.  Incurable but treatable.  Started treatment Jan 2022.  Lung mets now undetectable, primary tumour shrunk from 59 mm to 23mm.  You can read my blog here.

That said, you absolutely are in the worst place right now, with potential hints of a diagnosis and waiting for appts and results.  We all hate the waiting.   It's good that the renal appt is next week so that's not many sleeps to go.  Hold on to the fact  that kidney cancer is slow growing and every appt is a step closer to knowing what's going on and a way forwards.  Once you get to this place, it gets easier and more manageable.  

There's loads of people on this forum with tumours that have spread and tapping into a variety of treatment options. 

Hi, yes I have kidney cancer which spread to other kidney, lung and armpit node. Had kidney and 12cm tumour removed Jan 23, and am on chemo tabs since April 23. I've had two doses of immunotherapy but that has been stopped due to heavy side effects.

Side effects from chemo are severe fatigue, muscle and joint aches, sore throat  mouth and ulcers plus diarrhea. Its hard work but 3 of my 4 tumours have gone, the 4th down to 5mm do its definitely worth it.

Waiting is hard, no getting away from it. I try distractions, and planning small things for most days helps, plus planning rest days. There is a Maggies centre close to where I live, they are brilliant do look them up! I also do exercise sessions twice a week  not too strenuous but keeping  a little fit can help you prepare for your journey.

Look after yourself, one day at a time, keep strong as much as you can

Thank you for sharing your journey and treatments definitely given me hope.

I know you explained your side affects from chemo what side affects did you have from Immune therapy 

my appointment with Renal Consultant happened  referral sent for me to see oncology team to see if suitable for immunotherapy to be honest i thought this was already decided now still having to wait to was hoping treatment could start asap.  Consultant has said in lungs as could possibly be bowel or stomach as had fluid in stomach when had ultrasound before CT scan and could see some sort of blockage

When i read on hear is that people get seen and treated really quickly forgot to ask why they could not do surgery then chemo afterwards ?

will ask oncology team when i have an appointment sorry if i sound a bit frustrated 

I will look into a Maggie’s group in my area or other groups they may have thank you 

At least you have the renal appt ticked off the list now, even if it didn't answer all your questions or clarify the treatment options.  So frustrating for you :-(

Therapy said:

why they could not do surgery then chemo afterwards ?

In general, Chemo doesn't work on kidney cancer.  That will be why they mentioned immunotherapy.  They need to absolutely sure of the full picture before they start treatment.  Surgery is for a specific situation.  Urology can manage surgery usually, but immunotherapy is the domain of oncology.  

Thank you for the information 

Hi, immunotherapy side effects were a rash which covered most of my body. This started almost straight away and I didn't know what to do then, I wrongly  thought I had to put up with it.

Eventually I rang hospital and they called me in. I was put on steroids which cleared it up in few weeks. It came back but rang in early and it went in a couple of days. I was told the risk was it braking the skin and becoming infected, that didn't happen.

The other one is diarrhea, this started in July and I still have it, although much improved. I was tested for colitis, I had minimal inflammation and no polyps, so good news. Immuno started April, I had two doses then it was stopped because of the diarrhea.

This was me and of course everyone is different, I know someone on immuno who is doing fine, no side effects at all.

Even though they stopped immuno the cancer continues to respond as it stays in your system for a long time, unlike chemo.

Diddy

You have done great. I’m struggling as I have been told I have a large tumour on my kidney and am about to have a chest scan to stagemy cancer . Fearing the worst as its a large Tumor that I feel must of spread all over.