Anyone have Pancreatic Acinar Cell Carcinoma?

Posted by thawk32 @thawk32, Jan 16, 2023

I looking to see if anyone has been diagnosed with Acinar cell pancreas cancer. My biopsy from Dana Faber in Boston had my cancer type Neuroendocrine/Acinar. The Acinar cancer is very rare.
I was hoping to connect with someone that has experience with Acinar cell cancer of the pancreas.

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

I met with my oncologist today and cleared up the confusion. My cancer is Acinar Pancreas Cancer. I thought I had a combo along with Neuroendocrine.

Acinar cell carcinoma (ACC) of the pancreas is a rare, malignant neoplasm that accounts for 1%-2% of all pancreatic neoplasms [1]. Acinar cells are the functional exocrine units of the pancreas and the carcinoma arises from malignant transformation of these cells.
If anyone has this cancer type please reach out. Thanks

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@thawk32

I met with my oncologist today and cleared up the confusion. My cancer is Acinar Pancreas Cancer. I thought I had a combo along with Neuroendocrine.

Acinar cell carcinoma (ACC) of the pancreas is a rare, malignant neoplasm that accounts for 1%-2% of all pancreatic neoplasms [1]. Acinar cells are the functional exocrine units of the pancreas and the carcinoma arises from malignant transformation of these cells.
If anyone has this cancer type please reach out. Thanks

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No mine was a neuroendocrine carcinoma utorial and the cysto (bladder). I wish there was something that I could tell you about this cancer that you have but the rarity of it chances are of anybody having something of that nature and maybe slim to none but you never know one of these circumstances. But one good plus that I could tell you is that we just heard the other day that people have been being approved for Long haul covid now we don't know if it's going to be a temporary disability or if it's going to turn into a long disability however they do that I'm not sure but here's looking up

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I’m looking to anyone who has been diagnosed with Acinar Pancreatic cancer. It a rare form of Pancreatic cancer so I’m having no luck with contacting with someone with this type of PC .
Thanks in advance and god bless all you PC warriors. 🙏🏻❤️🙏🏻

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@thawk32

I’m looking to anyone who has been diagnosed with Acinar Pancreatic cancer. It a rare form of Pancreatic cancer so I’m having no luck with contacting with someone with this type of PC .
Thanks in advance and god bless all you PC warriors. 🙏🏻❤️🙏🏻

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Hi,

I don't have any direct info, but I remembered reading something about it on reddit and I found it again. There are at least two other people in the discussion, plus a mention of a Facebook group. Here's the link:

https://www.reddit.com/r/pancreaticcancer/comments/12tc85c/so_this_is_a_bit_weird/

And here's another discussion from reddit:

https://www.reddit.com/r/pancreaticcancer/comments/usc6p7/acinar_cell_carcinoma/

And I *think* this is the link to the Facebook group:

https://www.facebook.com/groups/218900321971851

Anyway, good luck! Wishing you a happy outcome and that you find a good community of support.

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@thawk32

I’m looking to anyone who has been diagnosed with Acinar Pancreatic cancer. It a rare form of Pancreatic cancer so I’m having no luck with contacting with someone with this type of PC .
Thanks in advance and god bless all you PC warriors. 🙏🏻❤️🙏🏻

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@thawk32 I'm tagging @stageivsurvivor who also has pancreatic acinar cell carcinoma (PACC) and wrote more here: https://connect.mayoclinic.org/comment/726298/

How are you doing?

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I have acinar cell pancreatic cancer. I've been on chemotherapy, Folfirinox, since late Sept. of last year. I've been lucky, as Folfirinox has several possible bad side effects, to only be bothered by neuropathy. Tingling of the fingers, bottom of the feet, and the back of the throat with exposure to cold. Daily hard exercise has helped me more than anything with the chemo.

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