Anxious waiting

Really sorry to hear this Tjay. I’m here as my dad has a brain tumour - stage undefined. What are you most anxious about?

I’m anxious due to the unknown and what awaits me, don’t get me wrong I will take any treatments they give me and just hoping it won’t be too long to meet consultants, my husband also has cancer and I know what chemotherapy and radiotherapy do.Thankyou so much for replying to me.

We’re all in this together, so no problem. I would contact your hospital/health specialist and ask for an update on your situation. It’s not fair for people to worry without an answer. Unfortunately it’s the state of the NHS, which is why I want to at least speak to people like yourself who are going through this. I won’t have answers, but I hope you feel better that someone’s listening and not feeling isolated. Have you got an oncology nurse to speak to?

Not yet , I phoned today and was told someone will phone me back in 48 hours, it’s a sin how the nhs has ended up like this and know that many nurses have left which is why there is long waiting lists, I’m feeling hopeful now it’s the only way forward, thank you.

Hi Tjay.  This bit right now is the hardest part.  The waiting, the unknown, wanting to know the way forwards and to just get started.  I also have stage 4 RCC spready to lungs.  When my urologist told me this in Nov 2021 he advised he would be requesting a biopsy and referring me to oncology and the consultants name.  He also shared the likely treatment "a bit like chemo" he said.  

The biopsy appt and the onco appt came through quite soon - both for the same day of course - bummer!  I would suggest a chase-up of oncology is definitely due which is what you are already doing.  I'd get the name of the consultant too so you can chase directly, in case the contact you have is not the most appropriate one.   I'd also find the consultant's secretary's name and number as this is the go-to person and they always answer the phone in my experience.  Nurses are frequently working away from the phone.  

Kidney cancer is slow growing.  I know it's easier said than to fully grasp, but delays at this stage are very unlikely to be significant.  

If you read the posts on here, a common approach with stage 4 is immunotherapy.  This is what I'm on.  Started Jan 2022.  There's no trace of my lung mets now and the kidney tumour has shrunk to 2.6cm, that's at least 20% smaller.

Oh wow that’s amazing, I’m feeling hopeful now thankyou so much for your feedback, my husband has cancer also and has been trying new vaccine and we got great news today that his cancer has shrunk immensely so another cancer breakthrough, take care tjay