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Welcome to the small cell cervical cancer forum

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Anonymous
Welcome to the small cell cervical cancer forum

Hi all,

As small cell cervical cancer is such a rare cancer it can be difficult to find other women who have been affected. We have set up this new section of our forum in the hope that it will be a safe and supportive environment for ladies affected by Small Cell Cervical Cancer to find each other for information, support, and friendship.

If there is anything I can help with or you have any concerns please do just get in contact with us at [email protected]

Best wishes
Fran

Wedgegirl

Many thanks for this forum.

I will introduce myself, I'm Georgina age 46 diagnosed in July 2017 following a regular smear which identified an adenocarcinoma, this led to a radical hysterectomy and confirmed the presence of small cell neuroendocrine carcinoma. Currently on my second cycle of Cardoplatin and Etoposide. I live in Kent and I am receiving my treatment at the Maidstone oncology centre.

1995 Abnormal smear Lletz procedure. No further treatment (Age 24)

2014 smears moved from annual to every 3 years.

04/17 Abnormal smear (Age 46)

05/17 Large loop excision

06/17 High grade invasive adenocarcinoma G2, deep margin with neuroendocrine component 

07/17 Laparoscopic Radical Hysterectomy, Sentinel Lymph nodes removed plus an additional two.

08/17 small cell neuroendocrine carcinoma confirmed.

4 rounds Carboplatin/ Etoposide chemo started 22/08

12/17 Clear MRI

Blog: Be more zebra

emmjaybee

Hi Fran, just to say that I  have used this website over the last two years. I lost my 32 year old daughter to small cell neuroendocrine cervical cancer in February. Not sure whether to post the most distressing 18 months of my daughters and my life on here, or whether  it would  help the very few who are diagnosed with  this rare and aggressive cancer. 

Regards emmjaybee

Wedgegirl

Dear Emmjaybee, I'm so sorry for your loss, I would like to hear your daughters story if it is not to distressing for,you x

1995 Abnormal smear Lletz procedure. No further treatment (Age 24)

2014 smears moved from annual to every 3 years.

04/17 Abnormal smear (Age 46)

05/17 Large loop excision

06/17 High grade invasive adenocarcinoma G2, deep margin with neuroendocrine component 

07/17 Laparoscopic Radical Hysterectomy, Sentinel Lymph nodes removed plus an additional two.

08/17 small cell neuroendocrine carcinoma confirmed.

4 rounds Carboplatin/ Etoposide chemo started 22/08

12/17 Clear MRI

Blog: Be more zebra

Lucie_Locket

Hello all, thought I would introduce myself too, I have just joined this site in hope to find others going through the same thing. I am 24 yrs of age recently been diagnosed with neuroendocrine carcinoma. I am currently waiting on lletz results to determine the grade and course of treatment. Anyone who does read this I wish you the best in whatever place your in, whether you have cancer yourself or you are a family member of a loved one who has it. 

Wedgegirl

Hi Lucie, do you know if it is small call or large cell yet? Which part of the U.K. are you from?

1995 Abnormal smear Lletz procedure. No further treatment (Age 24)

2014 smears moved from annual to every 3 years.

04/17 Abnormal smear (Age 46)

05/17 Large loop excision

06/17 High grade invasive adenocarcinoma G2, deep margin with neuroendocrine component 

07/17 Laparoscopic Radical Hysterectomy, Sentinel Lymph nodes removed plus an additional two.

08/17 small cell neuroendocrine carcinoma confirmed.

4 rounds Carboplatin/ Etoposide chemo started 22/08

12/17 Clear MRI

Blog: Be more zebra

Lucie_Locket

Hiya :), yeh they said it was small cell, I live near Cambridge so am being treated at Addenbrookes Hospital which I’m more than happy with. They worked wonders with my dad, he is hopefully getting the all clear today. What about you, where abouts are you from? 

Wedgegirl

I'm in Kent so currently under the Maidstone oncology centre, I'm going to ask my oncologist for a referral to the Royal Free as that is my nearest centre of excellence for neuroendocrine.

 

1995 Abnormal smear Lletz procedure. No further treatment (Age 24)

2014 smears moved from annual to every 3 years.

04/17 Abnormal smear (Age 46)

05/17 Large loop excision

06/17 High grade invasive adenocarcinoma G2, deep margin with neuroendocrine component 

07/17 Laparoscopic Radical Hysterectomy, Sentinel Lymph nodes removed plus an additional two.

08/17 small cell neuroendocrine carcinoma confirmed.

4 rounds Carboplatin/ Etoposide chemo started 22/08

12/17 Clear MRI

Blog: Be more zebra

Lucie_Locket

That would be good, if you don’t mind me asking how has your treatment been so far? I’m so worried about having chemotherapy :/ tbh i don’t really know how I feel about it as a whole yet. 

Wedgegirl

Hysterectomy went well, healed really quickly. Chemo it's tough going at times, I'm half way through cycle three, I've struggled with sickness, but not everyone does. It was my intention to stay at work throughout, but I've taken the time off which has helped.

1995 Abnormal smear Lletz procedure. No further treatment (Age 24)

2014 smears moved from annual to every 3 years.

04/17 Abnormal smear (Age 46)

05/17 Large loop excision

06/17 High grade invasive adenocarcinoma G2, deep margin with neuroendocrine component 

07/17 Laparoscopic Radical Hysterectomy, Sentinel Lymph nodes removed plus an additional two.

08/17 small cell neuroendocrine carcinoma confirmed.

4 rounds Carboplatin/ Etoposide chemo started 22/08

12/17 Clear MRI

Blog: Be more zebra

Lucie_Locket

Well it’s great to hear your surgery went well and that. Chemo sounds awful but suppose just going to have to take it as it comes :/ Trying and most of the time managing to stay positive I guess 

Sarah Allen
Sarah Allen's picture

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. 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

Katy-Anne

Hi Sarah, 

this is my 2nd attempt at posted. Sorry if it’s duplicated. 

How is your chemo going?

 

I was diagnosed in 2010. My tumour was too large to operate so my treatment started with the chemo. I used Reiki when I went for chemo and I think it helped reduce the side effects of chemo because I didn’t find it too bad. 

My surgery totally floored me though so i don’t know how I would have found it having chemo at that point. 

 

Looking at the date of your msg you might be at the stage of discussing radiotherapy too. I had radiotherapy after my surgery. I had a radical hysterectomy - I was 26 at diagnosis, and I had abdominal lymph nodes removed. When tested in the labs my lymph nodes were clear and only small amounts of small cell found in my cervix. 

My oncologist recommended radiotherapy as a precaution and I’ve not had any reoccurrences. 

When going for radiotherapy I had chemo one morning each week (no hair loss). You had to wait an hour after chemo before radiotherapy so I went for lunch lol. Radiotherapy is very quick and painless at the treatment time. Ask about barrier cream, radiotherapy causes a sunburn effect.  There is a fair bit of waiting around and I found I was very tired during this stage of treatment. 

I finished it all off with brachytherapy. You had a day appointment under general anethetic for the rods to be inserted. Then a strange feeling as you waited to get treatment (no pain). Treatment less than 10mins and then gas and air to remove rods straight after. Then you were able to go home the same day. 

lisaloo83

HI, not sure if this forum is still active but i have just been diagnosed with small cell cervical cancer so would be great to speak to others that have this too. I only found out last week that I had cancer and then yesterday was diagnosed with this rare type (Never thought I’d be hoping For a normal cancer!), Lisa 

Katy-Anne

Hi Lisa, 

so sorry for my delay in reply I sometime forget to check the forum. 

By now your treatment will be underway. What treatment are you getting?

My treatment was in 2010 and I’ve been clear since. I had the works chemo, radical hysterectomy, radiotherapy with chemo boost, brachytherapy. 

If you fancy a chat I’m here.

 

Katy-Anne xx

LynnePellatt 74
LynnePellatt 74's picture

2 weeks ago I was diagnosed with cervical cancer then this week was told its small cell cervical cancer which is scary enough but now I need scans as they say small cell cancer is not a normal cancer to find in the cervix and usualy stems from the lungs?? Anyone else here been told this? i am freaking out waiting for scans as they are not only checking the lungs but the brain and liver as well....go for a scan on tuesday then an mri...anyone else experience this? So scared need more info on this but cant find much on it....HELP please!

Strickensister

Dear all,

 

my Sister has been diagnosed with stage 2A small cell cervical cancer with a tumour of 3.5cm. I am totally lost here. 

She will be going through hysterectomy and chemo + RT. 

 

I am worried sick. Anyone has beat this illness? What procedures did you go through? Or a gauge of survival rate? Any help or information will be much appreciated. Thank you so so much! 

NN

Hi everyone  

43 years old. Last week diagnosed with small cell neuroendocrine carcinoma on the cervix.

What kind of treatment you all had. I have stage 1A and 7cm big. 

Kombination of radiotation and chemotherapy for about 5 weeks or

Surgery and after surgery chemotherapy ??? I'm so confused 

I need your expirience  

Best

NN

JustGayle

Hi, 
I saw my oncologist for the first time today. I'm 58
6/11/19 Went to the docs as I had bled for 2 days and been throughthe menopause

14/11/19 I went for a colposcopy where she immediately saw a tumour and sent off biopsy

26/11/19 got results it was CC
9/12/19 CT Scan + MRI Scan

17/12/19 Resuts in 3cmx4cm tumour int he neck of the womb with cells inside the womb affected. Told surgery wasn't an option and it will be chemo and radiotherapy

19/12/19 Saw Oncologist who told me it was small cell Stage 2. Carboplatin and etoposide intravenously on day 1 , etoposide capsules orally on day 2 and 3 and then steroids for 3 days I think he said. Then a phone call today to say the first one will be New Years Eve. Then every 21 days .I have 4 cycles to do.

When he's done with me he will pass me on to his friend the radio whatever he is ( it's all a bit much to take in) It's happening so fast , hence why I am writing this gone midnight because I haven't been sleeping well.
He's not even waiting for my kidney test which is the day after boxing day as he said he will guess for the first round.
Maybe now I've written this down I can go to sleep.
Thanks for listening

 

Abbywilko51

Hi Gayle,

I'm in a similar situation to yourself, I'm 29 and have recently been diagnosed with small cell cervical cancer, also inoperable so I have started the same chemo treatment as you have been, should be about 4 or 5 months of chemo followed by daily chemo and radiotherapy for about 5 weeks.

I donated 20 inches of my hair before treatment which was so hard, and my hair has already begun to shed :-(

I'm terrified that having this disease so young I'm worried I'm going to battle this throughout the rest of my life and I feel like the fear of leaving my family behind is consuming me, and I'm trying so hard to be positive.

I'd like to know how you're getting on with your treatment and wish you the best of luck.

Anyone on here that has had small cell please keep sharing your stories! xxx

Mkilbride
Mkilbride's picture

Hiya, I am Mel. I am 44. I had small cell carcinoma of the cervix stage 2B. I finished all my treatment 14 months ago. I was treated with chemo and radiotherapy. My treatment was successful and my last MRI in dec 2019 says I am still cancer free. My hair has grown back and it started touching my shoulders. I still can't believe I was bald a year ago. I am not sure what to say but I hope my post helps others in that you can and will get through this. My treatment was a whirlwind. I have 2 children age 6 and age 4. They were my focus. I focused on keeping them happy and their life as normal as possible and somehow I got through it. My family got through it. Cancer affects everyone, not just you, we somehow got through it together. If anyone wants to ask me questions please do. I am new to this forum. It's only now 14 months later that I am trying To process some of my experience. 

Mel