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Solid pseudopapillary tumour - Pancreas. Or - Mucinous cystadenoma/Cystadenocarcinoma?

Posts: 2
Joined: Sep 2013

So, I am a 27 year old female that recently had an Pelvic MRI performed to search for deep lesions caused by Endometriosis - and what did they find? A 6x7x5cm "mass" originating out of the tail of my Pancreas. (At first they thought it was a renal mass, but after another MRI, ultrasound and CT scan - they positively identified it's origin as pancreatic.) Two seperate radiologist read the last MRI I had (abdominal MRI) and said the most likely diagnosis was a solid pseudopapillary tumour - or a possibly malignant (need fine needle aspiration which they won't do because of the size of the tumour) Mucinous cystademona.

Needless to say - this is not an ideal situation. I am having extreme anxiety. The surgeon I went to was referred to me by my outstanding gynecologist. The surgeon is very bright, and spends a lot of time explaining everything. I have a lot of faith in him - the surgery he decided on doing to remove this "mass" is a distal pancreatectomy and a splenectomy. It will be an open surgery - as the size of the tumor (in my surgeon's opinion) does not lend itself to robotic or minimally invasive procedures.

So I will lose the tail of the pancreas, my spleen and surrounding lymph nodes. I just had a pneumonia vaccine to prepare for the removal of the spleen. Apparently this is all very rare - so, aren't I special snowflake? Ha. In all honesty - I am insanely nervous. Mostly because this tumor is not small - and I am wondering if it is malignant (the survival rates for a pseudopapillary tumor are wonderful) - and it is Mucinous cystadenocarcinoma - what does my future hold?

It's been a long road (or feels like it, even though everything had happened so fast after the discovery.)

Has anyone had any experience with anything like this? How was your surgery? Tell me anything and everything. I know anxiety is natural with these sort of things - but I am REALLY having a hard time shaking it. Not to mention the Endometriosis (Stage 3) diagnosis was rather recent, and I also have goiter which led to my having a Thyroid Ultrasound performed today - to see what could be causing the enlarged Thryoid. SIGH. Again, trying to be positive and keep telling myself - everything will be okay! But right now, I am so overwhelmed. And sort of in a state of shock.

Thank you for any replies. All my good thoughts are with all of you, as well.

-Kris aka theMouse.

Posts: 2
Joined: Sep 2013

Mostly because this tumor is not small - and I am wondering if it is malignant (the survival rates for a pseudopapillary tumor are wonderful, so that would be the preferable form of malignancy) - I am more worried about Mucinous cystadenocarcinoma - what does my future hold?  (I mistyped all of that - probably due to my brain being completely wrecked right now!)

Jojo61's picture
Posts: 1072
Joined: Oct 2013

I am so sorry for what you are facing. I have kidney cancer, and have been reading and learning so much on this site. I came looking at this division because my tumor is attached to my liver and pancreas... I read your message and I just wanted to reach out to you and tell you that you are in my thoughts and prayers. I hope all goes well (maybe you have had the surgery by now?).

Wishing you good health!