Nueroendocrine and chemotherapy

Hi everyone. I'm so glad this post was made for those with nueroendocrine. I was worried I was going to be the only one because of how rare it is.

Well last week I wouldn't have been expecting to write this... In June It was confirmed that I had stage 1b1 adenocarcinoma cervical cancer. I underwent a radical in July leaving ovaries intact. I went to my consultants last week expecting everything to be fine and dandy. I was genuinely feeling positive and thought I'd just be told to come back in a few months for a check up...

I was told that when they examined the tumour they found another cancer - nueroendocrine. (I think it's small cell) My consultant advised that I will need chemo because they can't guarantee that little parts from the tumour hadn't broken off and went elsewhere in the body. Apparently the cells would be far too small to detect at the moment so they want me to do chemo as a precaution. 

I am absolutely devastated. I just don't think I'm going to cope with chemotherapy. Has anyone any idea what type of drug they use in the chemo for this as I want to look into it before agreeing.

Again, thank you for making this little corner :) xxx

I stood in your shoes a year ago, which chemo are you having and how many rounds.


im almost at a year since my last chemo and my scans are still clear.

Hello. Thanks for replying! :)

I'm either having 4 or 6 rounds of cisplatin and etoposide. They also mentioned possible radiotherapy. Was this mentioned to you? How many scans do you get after chemo? 

I had my first chemo round 2 weeks ago and I was in bed for nearly a full week!! 

Do you know of any groups specialised for our type of nueroendocrine? 

Again, thank you for reply xxx

I had a radical hysterectomy with sentinel node dissectio, I had lymphatic invasion and spread down in to my vagina.

I had four rounds of chemo, after the first one I went to work but decided to lock myself away from other people to reduce my risk of infection.

I I didnt  have radiotherapy but I know those who have, are you in FB there is a closed group.

How are you ladies doing? 

Looks like I’m following you guys, set for chemo 4 rounds of cisplatin and etoposide following a radical hysterectomy. Any more info you can give me?

Hi - I’ve just been diagnosed 3C1 small cell neuroendocrine - I wonder if the closed fab group is still active ?