I am new to forums and posted on a different page, I hope this is the correct one. Apologies to those that read it a couple of days ago.
I always wondered how I would react if I was given a cancer diagnosis. Unfortunately my time had come, after a visit to my doctor in October for what I thought was a UTI, and then in the early hours the following morning a visit to A&E for what I thought was very painful kidney stones, I left 10 hours later being informed that a large tumour had been found and I would need a radical nephrectomy.
The last few months have been crazy, I was fortunate to get a contrast scan 2 days later which showed I had a 10 x 9 cm tumour. I was then very lucky to be referred quickly and within 1 month of my diagnosis I had a radical nephrectomy. My healing has gone well, my stomach (which was never flat in first place) is out of shape and still to be looked at, and I still have a red, itchy skin rash across my bottom, inner thighs, lower back and arms. The cause has not been confirmed due to the variety of meds that I was on in hospital.
I received my pathology results yesterday, it stated Grade 3, PT3a. Which means I am an intermediate risk of it recurring. I am waiting a ct scan and an appointment with the oncology team to discuss whether I am eligible to be considered for immunotherapy treatment with Pembrolizumab, (this needs to be soon because I only have 5 weeks for the window to close on the treatment starting). Or should I take the second option and have regular moniand ct scans. I really dont know what to do.
I havd heard about some of the side effects but I really would like to hear from people in a similar position as me. I already have hypothyroidism, would this get worse. I am a 56 year old female. Thank you
Hi Daisy294 , our stories are similar in many ways. My tumour was removed 7 years ago when I had radical nephrectomy. At the time, I was told it was an aggressive cancer but the surgery had been successful with no signs of spread. I wasn't offered any follow up treatment and I didn't push for it. With the sharp vision of hindsight, I regret that a bit now. Three years ago, I was diagnosed with a metastases in my brain stem. This wasn't picked up in any scans as my head wasn't included. I'm told it is very unusual (I wonder how many of us get told our cases are highly unusual?).
Since the discovery of the brain tumour, I have had various treatments, including immunotherapy. And some of the treatment is rough. Main thing is fatigue, most things leave me knackered. Glad I've had the treatment, and am still receiving, treatment though. I'm still here, with holidays and family events to look forward to.
No advice here, sorry. Just my story and my best wishes whichever way you go.
Hi SandyN,
I am glad you are still here. Sharing your experience has given me hope. My sister had a partial nephrectomy in 2024 and has now completed her immunotherapy. She struggled with the fatigue and other side effects. The thought of this returning scares me but im really worried about the side effects of the immunotherapy. It has all happened so quickly and I do not think I have processed any of it properly. Its been surreal. I am having my ct scan on monday so after that I think I will be able to make a better decision. Please keep in touch and let me know how you are doing. Take care.
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