Is there anyone with Large Cell Neuroendocrine Cancer like me?

Hello everyone, I’m new on the website although I have been browsing the forums for a couple of weeks before building the confidence to post on here. In October '15 I had my second routine cervical smear test, which the practice nurse stated that from looking at my cervix it may come back abnormal, which was fine. A couple of weeks later I received an appointment for a colposcopy, I attended and the specialist nurse was confident it was CIN 1 or CIN 2 and LLETZ + biopsy treatment was scheduled two weeks later (11/11/15).

Since the treatment I carried on my merry way believing that everything is now sorted and I will see them in six months time for check up, however to my surprise I received a call two weeks from the specialist nurse requesting for me to come in to the hospital urgently as the biopsy shown cancerous cells were present. I attended the appointment (27/11/15) the following day with a professor, throughout this time apprehensive about having another LLETZ treatment.

During the appointment the Prof. went through my history, discussed family and my profession. He then went on to tell me that I do have cervical cancer, however the type I have was extremely rare and I would require scans before I could be given a diagnosis and a treatment plan. No problem. I then went through a week of last minute MRI and CT scans.

9/12/15 I attended a ad hoc appointment with the Prof. and they located the tumour on the cervix (Stage 1b1) and a radical hysterectomy has been scheduled for 17/12/15. Both the macmillan nurse and Prof. have always stressed how rare it is and therefore the line of treatment will be different than for those with the ‘Common’ types of cervical cancer.

I’ve been quite positive about the situation, I mean from my own perspective there is no point in crying or having a woe is me moment as its really not going to change anything. So I continue to go to work and carry on as normal. I am very aware that my cancer only accounts for 5% of cervical cancer and is aggressive and prognosis isn’t great, although the Prof. won’t discuss prognosis with me at present, which is understandable.

My family and my husbands family have been very supportive and understanding, I haven’t told my eldest child and I can’t communicate it to the baby who is nearly 1 lol. However I would like to know if there is anyone out there or here lol :slight_smile: who has had or has this type of cancer. For further insight or to share this journey with. My coping mechanism has been discussing it very occasionally however sometimes I feel not to discuss it as I believe that sometimes people are not able to cope or they are uncomfortable.

I’m fine, just worry about my husband and the mini me’s but I guess that is natural.

Well I hope to get a response even if its a pleasant hello :).

Happy weekend everybody xxxx


Welcome to the forum and sorry that you have found yourself in this situation. I can't help in relation to your type of cc as I had adeno cells, but just wanted to say you sound amazingly strong and positive! Please don't think so much about prognosis etc as everyone is different and they can not possibly know your individual prognosis.

Keep strong and I hope someone that has/had the same cc as you comes along soon to give you more support!

xx Anna

Hi Jae :-)

Welcome to the forum and sorry you have had to find us here. I just wanted to say that I love your avatar and I love your attitude. I think you are absolutely correct that even though you might want to be open and honest about it some people do become very uncomfortable discussing it and that is why this forum is a total Godsend! I also think you are correct to worry for your husband. Normally when a woman is diagnosed all the attention and sympathy turns towards her and her partner gets sidelined. Do what you can together to make sure that he has an adequate support network.

Be lucky :-)

Hi Jae87


I don't have the same type of cancer as you but do have a very rare type too (spindle cell cervical sarcoma).  Like you I have been unable to find anybody with the same type of cancer as me which does sometimes feel a bit lonely.  The 5% they quoted you includes lots of rarer cancer types.  Try not to google too much as many of the rarer case studies out there are very old.


During treatment plan, my lovely consultant reassured me that as my cancer was so rare the sarcoma MDT (Name of hospital removed) and local MDT reviewed my case and decided on the best course of action.  I was 1B1 too.


The good news is that 5 months after RH I am back working, playing sport and dancing at the works party.  On Monday I was given the all clear for another 3 months.


I have been told they will keep a close eye on me (CT scan in March) but the treatment is the same as for lots of other ladies on this group so keep asking questions.  


Good luck on Thurs.


god bless you .. your attitude is amazing ... and sweet how u think of your husband... wishing you a speedy recovery and if ever u need to vent u know where to come xxx

Hi Jae87,

During my cancer treatment, I found it particularly helpful to read blogs of those who had undergone similar treatment and are now recovering. Here's someone diagnosed with Large Cell Neuroendocrine cervical cancer. Hope she will help you through! :) God bless!

Hey Jay

I've just recently found out I also have the Neuroendocrine cancer.

Im 24 i have no children. I had my first smear test on the 16th November 2015 and she found a lump on my cervix which bled when she irritated it. I thought the bleeding was due to me missing my depo jab. But alas after being referred to the hospital and having a biopsy the lump was a tumor.It's only CIN 1 and about 2cm (well since my MRI) which was on the 8th Dec 2015.


I've had an MRI and CT scan and I've got an appointment tomorrow with the fertility clinic and oncologists I have to choose was treatment I want. Which is extremely hard because I want to live, but I also want a baby. I have to choose a radical hysterectomy/ trachalectomy? then chemo OR 12 weeks of 4 lots of intense chemo then a possible trachalectomy.

I don't know what to do. As you know the cancer type is rare and aggressive but should I take a chance or just take the safe road???

Best wishes 

Abby x

Thank you so much anna82, I try to be strong and positive. I guess that all you can be in this situation, xxx

HI Megandog


Thank you for your advice, I actually work with a lot of spinal and nuero surgeons/ consultants a couple which I've confided in to get some more information, as they remove tumors for a living. Majority of my info I have received from them, they are all very sweet. 


Wow (Name of hospital removed) got invoolved with your case, that sure is something. You are a very rare case, its good that you had two sets of professionals reviewing your case to give you the best outcome :). Did you have to have chemo or radiotherapy afterwards? 


Thank you so much for your help. My op went extremely well on Thursday thank you, recovery has been a bit of a rollercoater but I'm getting there.



Morning Tivoli

Hahaha thank you so much you are very kind :).  Yes I was worried about him, I no longer am. But thats a different story. However I will try to maintain my positivity and strength, although I feel like i'm really being tested at the moment.  



Morning Jess35


Thank you so much for your kind words, its much appreciated. I'm going to be on here a lot from now on.  My medications make me so drowsy i fall asleep part way through :) xxx

Hi ashleyberry, thank you for going out your way to find me a blog to read that was very kind and much appreciated. I will be sure to read  her blog, I'm actually quite intrigued, so thank you so much :)



Dear Jae87, 

You are welcomed! I hope they will keep you comforted through your journey. Here's an amazing story of a Stage IVb large cell neuroendorine survivor. Yes, stage IVb.

She's truly inspiring! 


Thank you so much for the link, I read it and she was such an inspiration very determined! I'm happy for her, gives you some hope. Xx

I was JUST diagnosed, by [name of hospital removed].  They thought adenocarcinoma of cervix but biopsy came back neuroendocrine cancer of cervix.  PROGNOSIS??? Anyone heard?



I was diagnosed with Large cell nueroendocrine carcinoma of the cervix earlier this year after 2 abnormal smear tests. 

I had a Radical Hysterectomy and removal of pelvic lymph nodes. Lymph nodes were clear so I did not recieve any further treatment although I was prepared for it as though researching online found that multi modal treatment seemed to be the norm. 

I also joined a Facebook group of ladies with nueroendocrine carcinoma of the cervix who are all very informative and supportive and I would highly recomend you join the group if you are diagnosed with this particular cancer as it can be very isolating with it being so rare.

Kind Regards, 

Louise x


i also have a spindle cell sarcoma of the cervix. I am blown away to hear of someone else. I was diagnosed in 2019.