Newly diagnosed with poorly differentiated Neuroendocrine cancer of cervix.

Hi Megan

Sorry to hear of your diagnosis. I have Neuroendocrine cancer, metastatic stage 4 to liver and pancreas, I was initially diagnosed back in 2009 after surgery for something else. Besides the support you will get from the MacMillan Community, there is also a wonderful Facebook page ‘Neuroendocrine Cancer UK Support’ that you could request to join, they have  their own website too.  Sending a big hug to you X

Hi Megan 

sorry to hear your diagnosis in the Nets cancer area. I to have liver cancer not very good for anyone. Thanks for the info I’m not on face book but I’m on the support group page. Take care. Spotter. X

Hello, 

I have had this and have not been able to find one person at all that has it who also had the rare type that isn't large or small cell but just generalised as neuroendocrine but with no name. Is this the same as you? How are you getting on now? 

Paula x

Hi Paula,

I have poorly differentiated neuroendocrine small cell cervical cancer.  
I am 2 and a half months post treatment.  Surgery. Chemo, radiation external and brachy internal.  Feeling achy, depressed, sore, having issues with anxiety, confidence and have great fear about the future and what’s next.  I have been told that I just wait from scan to scan as I won’t know what is happening from one scan to the next.  But having counselling and have a Macmillan buddy and trying to find where o am heading in this new life after.  How was your journey and how are you feeling now? 

Hey. So i had a 10cm tumour and was diagnosed as stage 2b in Oct 2022 as it was all retained within the cervix but touching the parametrium. Classed as Neuroendocrine cervical cancer but a rare one  with no name but treated like it's small cell.  

Had Chemo, radiation and brac therapy too. Clear for exactly a year and it came back about 1mm in size this October. Got a total pelvic exenteration in October so recovering from that just now so we are both roughly at the same point of recovery just now. 

Can i ask what age you are? I am 37. We sound like we have gone through very similar experiences. Sorry to hear how you are feeling now. In general i'm feeling pretty positive that it's all taken out from the surgery and recovery is going well. I dip into anxious thoughts on occasions too but quickly remind myself that worrying right now is pointless as it's not solving the problem. So i'm just focusing on how immensely grateful i feel that i've a second chance of living and making sure i am enjoying it and keeping busy. I make sure i give time to acknowledge when i am feeling anxious and talk about it with another girl i have met through having the same experience too. If you fancy talking privately too let me know as i find talking to people with the same experience has been helping me massively! x

Hello my friend.. your post could literally be a carbon copy of mine, including the lack, unfounded feelings.. please feel free to share, seek into to compare ir a reminder to be kind to yourself on good, rough and everyday.. YOU ARE STRONG.. my user name is Pandapop3420... im in the U.S & new here..looking for friends to share support and ideas we could use for better days.. meanwhile, you have a friend if you wish to reach out..I can't figure how to send chat invite or side messages..LOL

Hi Pandapop3420 

I noticed your post and just wanted to give you a link to our help page where you can learn about managing your online account

Help Page

You are very welcome to be part of our community and I hope you’ll find this information helpful in managing to navigate the forum and build connections with others.

Sarah xx