Paraganglioma - has anyone else been diagnosed with this? Looking to connect with others.

Just wondering if anyone on here has been diagnosed with paraganglioma. 

I've recently had my tumour removed, next step is radiation treatment and wanted to touch base with someone who has gone through this or going through it, if possible. 

  • Hello Susie1269

    I'm sorry to hear that you've recently been through surgery to have a paraganglioma removed. I hope that you've recovered well and that you're feeling ok ahead of the next phase of your treatment. 

    I've had a look through the forum and whilst there are a few posts where members have mentioned this diagnosis, the posts are quite a few years old. If you want to read through any of these posts you can find them by entering the term paraganglioma into the search box at the top of the page. 

    As paraganglioma is a type of neuroendocrine tumor you might be able to connect with others who have had the same diagnosis through the Neuroendocrine Cancer UK website. They offer a number of different support options and hopefully, they will be able to put you in touch with someone. 

    I do hope that you're able to make the connection you're looking for and send you my very best wishes for the next stage in your treatment plan. 

    Jenn
    Cancer Chat moderator