Small cell neuroendochrine cervical cancer

Hello

I have been searching the forums to see if I can find anyone who has been diagnosed with the same CC as me. I have a small cell neuroendochrine tumour of the cervix stage 2b. I am currently undergoing a vigourous regime of chemotherapy (3 consecutive days of it every 3 weeks). The plan after that is fairly sketchy, could be radiotherapy, could be surgery, could be both!? 

If you have any experience of this I would love to hear from you as I haven't met anyone with this. I know it is very rare, only 20-30 women are diagnosed with this form of CC in the UK each year! I am under a lung specialist at Christies as the cell type is the same as small cell lung cancer so all the people I am with on the chemo unit have lung cancer! I am 42 and have a wonderful husband, some amazing friends and best of all 2 gorgeous children!

Thank you!

Hi Claire,

I'm sorry you've had this diagnosis, I don't have any personal advice to offer i'm afraid but there is a lady called Naomi, she goes by NNS on the forum who had a rare type. I don't know if it's exactly the same, but if you search for her posts that may help you out.

Best of luck with your chemo, hope you're not feeling to sick from it.

Take care xx

 

Thanks for your reply Jo. I've read Naomi's posts but think she has something different to me, it sounds like things are going in the right direction for her which is good news. I am doing ok with my chemo so far, on my third cycle of six so done by June! Had an MRI last Thursday and the tumour is having a good response so that's great, long may it continue.

Thanks again and good luck to you.....

Claire

Hi Claire,
I have also just been diagnosed with neuroendocrine cervical cancer. It was picked up after my radical hysterectomy histology. I am about to start my chemotherapy sounds like the same as yours next Monday. I have been looking for others that have the same cancer, it is very rare. Mine is grade 3 aggressive poorly differentiated. Hope all goes well
Megan

Hi Megan

I’ve just this week finished treatment for stage 3C1 small cell neuroendocrine, please feel free to DM - it’s hard having such a rare type as there’s not too many of us!

Hi, I couldn’t scroll past without writing a message. I was diagnosed with a small cell neuroendocrine tumour in 2014 whilst pregnant with my daughter. Although it’s rare, please know you aren’t alone :heart:

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