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anich1 26 days ago

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I have just joined the forum, and thought I would give a brief synopsis of my story so far. My health had been deteriorating through the last few months of 2024, which I had linked to a persistent cough that I'd had almost all year, but instead of improving when I rested between Christmas & New Year 2024-25 I continued to deteriorate, and early in the New Year was diagnosed with an 11cm tumour on my left kidney followed by a metastatic cancer diagnosis.

I started treatment at the end of March 25 on Pembrolizimub and Axitinib, and have have been on a general upward trajectory since then. I am now well enough and my tumour is small enough that it has been recommended that I have the kidney removed, and I am expecting an appointment for this next month, though I have been advised that I am likely to require open surgery.

I discovered the forum whilst researching kidney removal via open surgery, and would appreciate and tips or guidance from anyone who has been through it.

SandyN 26 days ago

Hi @anich1, welcome to the forum, although we know no one actually wants to be here.

I had a similar experience back on 2018. Also a persistent cough, and increasing numbers of toilet visits every night. The doctors tried various things all year but it made no difference. In summer 2018, I was refused by the blood transfusion service because my iron count was too low. A course of iron tablets didn't help, so I was finally referred to the hospital. A scan found a 15cm tumour on my kidney

It was removed via open surgery just before Christmas 2018. I was in hospital 4 days. And off work for 5 weeks. I had a phased return thereafter. My work was very accommodating. The scar crosses my stomach and destroyed stomach muscles and nerves. It was over two years before I next completed a sit up! You have to learn a new way to get out of bed. you'll be on light duties for a while.

The good news was/is that I have never noticed the loss of a kidney. The operation was a total success, the cough and excess toilet visits disappeared overnight and I had several normal years before the discovery of my brain tumour in 2023, which I almost certainly had back in 2018. I think it is great that you have already had other treatment, should make spread much less likely.

It is major surgery, a total nephrectomy is the official term. It will be tough for a while, so expect it. It will be worth it though.

Best wishes, and avoid too much online research. It's not good for anyones peace of mind. Just trust your oncology team.

anich1 20 days ago in reply to SandyN

Hi SandyN , thanks very much for your response, it is reassuring to hear from others who have been through something similar.

I wish you all the best with your continued fight.

TillyV 20 days ago

I had a kidney removed a year or so ago. Not sure what open surgery is.. I had 4 small scars and one long (8inches) one. It was a 2-man operation. Took a while to recover full energies but I am in my 70s.. some numbness and twinges still. But no problem at all with just the one as far as function goes .. I feel no different.

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