Anyone else got neuroendocrine cervical cancer?

Posted by paula7 @paula7, Mar 19, 2023

Hi there,
I have been diagnosed with neuroendocrine cervical cancer and i just can't seem to find anyone else who has it too or knows about it?
Also, I asked if i had small cell or large cell cancer to my consultant and i was told no, mine is just called neuroendocrine cervical cancer. Does that mean they know it's not the two types mentioned but it is unknown what it is called and they just know it's neuroendocrine?
It was originally 10cm and it's down to 1cm. I only have 1 week of treatment to go. Im so scared of metastasis in the future. I can't really believe that even though the original size of the tumour was really big, that it didn't spread anywhere else like to the lymph nodes, hence the reason i'm worried that the parts are microscopic and have moved somewhere else in the body. I have so many worries. Please help.

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

Teresa, Volunteer Mentor | @hopeful33250 | Mar 20, 2023

Hello @paula7 and welcome to Mayo Clinic Connect. Most folks with a diagnosis of neuroendocrine (NET) cancer understand your feelings. As you undoubtedly know, NETs are a rare form of cancer, and it is generally found in the digestive tract or the lung. So, when it is found in other areas, such as the cervix, it becomes even more unique.

I am a 20-year survivor of NETs, having had three surgeries for NETs in the upper digestive tract since 2003 (the last surgery was in 2016). So far, surgery has been the only treatment needed and there has not been any evidence of metastasis.

You mention that the NET was originally 10 cm and is now down to 1 cm with treatment. You must be very pleased with the good results. Would you be comfortable sharing what type of treatment you have had?

Each person's journey with this rare disorder is different and I would encourage you not to borrow trouble with worries about, "...metastasis in the future." Take each day at a time.

That said, I would encourage you to seek out a NET specialist, if even for just a onetime consultation (in-person or virtual). NETs specialists are highly trained in treating this rare cancer and are more aware of the best treatments available. Here is a list of NET specialists, I hope you can find one for a consultation:

--Find a Doctor
https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

I look forward to getting to know you better. If you are comfortable sharing more: how was your NET diagnosed (was it through a routine check-up); how long ago was the diagnosis made; is surgery being planned after the treatment is completed?

Colleen Young, Connect Director | @colleenyoung | Apr 2, 2023

Hi @paula7, I added your question and discussion to the Gynecological Cancers support group as well. @maria957 has a friend with neuroendocrine cervical cancer and @jenntx10 experiences cervical involvement with her NETs.

While neuroendocrine carcinoma of the cervix (NECC) is rare, there is treatment. Of course, you're concerned about recurrence or metastasis in the future. I think that is a fear you share with every cancer patient regardless of type or stage. I'm tagging @fabyram38 and @cancerback who also have cervical cancer to share with you as well.

Paula, that is so encouraging that the tumor has shrunk from 10 cm to 1 cm. Are you finished treatment now? What are the next steps for you?