Poorly differentiated neuroendocrine cervical cancer

Hi,

I have been diagnosed with Poorly differentiated neuroendocrine cancer of the cervix, Grade 3 aggressive. I have had a radical hysterectomy and am now recovering. I have been having all scans to check my full body to see if there are any tumors in my body to explain the neuroendocrine cancer. I am starting chemo next Monday for 6 cycles . Just want to talk to anyone that has had this rare cancer. It’s very uncommon I have been told. Have been sick for nearly 6 months with one thing after another. Was diagnosed with another rare type of cancer first then after histology from surgery it was changed to neuroendocrine. So now it is even rarer and more aggressive. I just feel numb and empty, there are no emotions left in my body. Feeling anxious, scared and back in the unknown territory.

Hi Meg, sorry because you have all this feelings but is normal, me to I am in the same position. I had SCC, scuamos cells, G3, very agressive type. I am still really scare. I had also histerectomy radical+ovaries out, plus lymph nodes out, stage 1B2. I am start in this moment radio+chimio due the fact that on my histopatologyc result was present LVSI and PNI and because of G3. Regarding the type of your CC neuroendocrine I spoke with one person from the forum and she told that the treatment with chimio is very good, she is NED after 5 years. I image because you had histerectomy your stage is stage 1 maximum stage 2A. Also if you search on the forum about this type of CC you will can find more ladies with this type of CC. Me to I am scare of this G3 and I understand you. Thank you :hugs:

Hi @Megzmeier23

Sorry to hear youve experienced this diagnosis too.

There are a few of us knocking about but not all of us still post or we only come on every so often but you arent alone. Theres people with varying years NED.

I was diagnosed with stage 1b2 adeno/large cell neuroendocrine so even rarer than the small cell. No lymph node involvement. Hysterectomy in Nov 22, chemo mix of carboplatin and etoposide for 6 cycles ending in May 23. Had 3 NED scans since and waiting on another. Being scanned twice yearly until year 2 then once yearly. Chemo is manageable, you surprise yourself with how strong you can be. They told me it was belts and braces and just to prevent reoccurrence, ill be 2 years since diagnosis in October and still here with NED. Course youre frightened about reoccurence but that eases over time, you find yourself going longer periods of time before youre reminded again about what youve been through.

I would perhaps stay away from dr google as there really arent any up to date findings about this type. Its rare in gynae cancer but as a whole i dont think they know how it comes about even in the places its more common, so ive learnt to live with the fact that there may be questions i will never get the answers to. Hard to do i know but that saves me a bit of anxiety.

Trust in your consultants if you can, but make sure you ask for regular scanning etc, mine have been amazing and he has a low threshold for any new or niggling symptom to the point he even ordered a brain scan as i suffered an increase in migraines during chemo.

Sending hugs x

Hi,

I sat in your shoes in 2017. So just wanted to drop in and give you some hope.

X

Also stopping by to say Hi!

Just this week finished treatment for 3C1 small cell neuroendocrine

It’s been a long road as I had a complication with a massive blood clot

Good luck with all your treatment

X

Hi,
Thank you for your replies and support. I have had my first cycle of treatment. Not without unfortunate things happening. I was allergic to the etiposide. They had to give me me pre drugs and put the dose going slower. Was very scary. They have even decided to change the regime and do IV for all 3 days instead of capsules due to allergic reaction. Been home since Wednesday late night. Thursday and Friday feeling very nauseous, yucky and splitting headache. Woken up this morning feeling a little bit better. 2nd cycle 3rd June inpatient. Hope you are all good.

Hello,
Sorry to hear this! J think I had the same as what you have. Mine was neuroendocrine and poorly differentiated but not small or large cell. This worried me as it’s so rare it had no name like small or large. Not met one person who had the same. Is this what you have?
My tumor was over 10cm big and i have been clear since August. It was extremely scary but i hope this makes you feel better that i seem to be doing ok so far. I need to get checked every three months to keep on top it as it was so rare.
If you have any more questions please ask!
It’s doable and take one day at a time! xx

In case you haven’t seen the announcement on 23/5/24, Jo’s cervical cancer trust, including this forum, is closing with immediate effect on 23 May 2024.

There is a petition to keep it open. Please sign and share the petition with everyone you can.

https://www.change.org/p/save-jo-s-cervical-cancer-trust-charity-from-closure?source_location=tag_

A forum member has set up a Reddit so we can keep in touch and still ask questions and share information.

https://www.reddit.com/r/CervicalSupport

There’s also a Facebook page set up but that won’t be anonymous which was this good thing about this forum.

https://www.facebook.com/profile.php?id=61559971923768

It’s unbelievable that the trustees allowed the charity to get into such financial difficulties that they are making a “formal appointment of liquidators” to quote from the post on jostrust.org.uk and have shut the charity down with no notice.

I’ve found the forum invaluable. Where else can we go for the kind of information and support that we find here?

What will happen to all the past posts that still provide users with information and comfort? Will all that be lost?

I’ve posted to X and LinkedIn. Most people on there just seem to be saying “oh I’m so sad it’s closing”. We need to fight for the forum to be hosted by another charity. Surely that wouldn’t cost too much and there could be a fundraising campaign to pay for it?

Can everyone who reads this please post in socials too. We might find a wealthy charity or individual who might be able to help? :pray::heart: