I Have One of the Rare Kidney Cancers

I am a women is her late seventies who still hula hoops, skips a little and works in design. I was diagnosed with kidney cancer in the summer. I have recovered very well from a total nephrectomy. Pathology identified a rare cancer which needed further sub typing. This took another two and a half months. I gather the cancer they identified is aggressive. I have been referred to Oncology for adjuvant treatment from Urology. I was to be offered Pembrolizumab but as it has now exceeded the twelve week deadline since my operation, it is no longer an option. I was in fact a little relieved, as I didn’t have to make that difficult decision, fearing the possible side effects. They plan to monitor me instead. I am so fortunate to be fit and well and busy. I have no symptoms.

I would be interested to know if anyone else has been in that situation. I’m hoping that it is not my age that has influenced the decision not to offer me treatment at this stage.

  • Hello AK-still-smiling

    I'm sorry to hear that you were diagnosed with kidney cancer last year. It's good to know that you recovered well from the surgery and that you're still hula-hooping! 

    Do you know the name of the subtype of kidney cancer that you had? It may be easier for us to try and help you connect with someone who has experience with that diagnosis if you do. You could also reach out to Kidney Cancer UK

    It sounds as if you're a little relieved that the decisions about additional treatment were eventually taken out of your hands due to the length of time it took to complete all the additional testing. I know that we have had lots of members previously struggle with trying to decide if various treatment options were right for them or not. Hopefully the fact that the medical professionals are going to monitor you has offered some reassurance that they will be trying to keep on top of any potential changes in your health. 

    If there's anything you'd like to talk through with one of our team of nurses, you're most welcome to give them a call. I know they will be happy to listen and offer any advice, information and support they can. They're available Monday to Friday, 9am to 5pm on 0808 800 4040. 

    I do hope that you continue hula-hooping and skipping for many years to come! 

    Sending my best wishes, 
    Jenn
    Cancer Chat moderator