Supporting the

Neuroendocrine Cancer Community

Name: Donna

Age: 57

Neuroendocrine Cancer Site(s): Primary lung, metastasis to the liver

Donna’s Story:

I was diagnosed April 2019 after feeling really unwell for some time and initially being treated for iron deficiency anaemia. I finally got my diagnosis after scans, MRIs etc. and was in total shock.

I was started on Lanreotide every 28 days and have just had my 24th shot, I was also given PRRT treatment and luckily I have had good results with that (stability).

I have good days and bad days (mostly good) and I try to be as positive as I can be. Sometimes I feel like a fraud when people say ‘you look really well’ I feel like they think I’m lying about my illness. I have a new normal now and I try to live my life the best way I can, I try to put it to the back of my mind, and sometimes I do forget I have this awful disease, but then it always comes to the only thing I think about. I’m looked after really well by the team at Hammersmith hospital although with the pandemic it’s been hard not to be able to have face to face consultations but hopefully they will resume in the near future. I don’t know what the future holds for me, but I intend to be around for a while yet.

Do you have any useful hints and tips that you would like to share?

I’ve joined the Facebook groups for neuroendocrine cancer, it’s a help to hear other peoples stories, some people have been living with this disease for years and years, it gives hope, all the Natter groups are really helpful.

I was lucky with my PRRT treatment the only real side effect I had was extreme fatigue, so I just listened to my body and slept when I needed to.