Recently diagnosed with PNET Grade2

Posted by pavlina60 @pavlina60, Jan 19 3:21pm

Hi! During a stroke work up a CT scan on my chest discovered a 16 cm mass in my abdomen. Multiple MRI, CT, PET (Gadolinium) scans revealed a grade 2 PNET on the tail of the pancreas as well as uterine leiomyosarcoma. I am having Ga dototate PET scan on Jan.26 and surgery on Feb.1. Not sure if both can be removed simultaneously. But I am preparing for the worst, hoping for the best and leaving it in God's hands!🙏

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

Hi..same me but the tumor was 20 cm..i did the procedure since 1 month and they removed 2/3 i
Of the pancreas and the spleen also..after the procedure 1 day after you will walk you will have a drain and they will remove on 5 days..for me i stayed 21 days in the hospital because i had fluid leaking one of the complications of this surgery now after one month i feel better and it remains small pain..

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@snd

Hi..same me but the tumor was 20 cm..i did the procedure since 1 month and they removed 2/3 i
Of the pancreas and the spleen also..after the procedure 1 day after you will walk you will have a drain and they will remove on 5 days..for me i stayed 21 days in the hospital because i had fluid leaking one of the complications of this surgery now after one month i feel better and it remains small pain..

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Great to hear you are doing well! My tumor is too close, probably ' glued' to my stomach, so I will have that removed (hopefully not all of it)! And will have a hysterectomy for endometrial cancer… Not fun.

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Hi..since 2 months suddenly i discovered that i have PNET 20 cm so they removed 2/3 of the pancreas also the spleen..they told me that the tumor has metastased to some lymph nodes and they removed so no need for chemo ..my next follow up for MRI is after 5 months..please who had same case it can come again ?? Im just 30 no kids yet im so scared and i cannot plan any things for my future im just paralyzed and i stopped all my goals

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I will pray for you is not easy i know..everything on god and try to br strong

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@snd

I will pray for you is not easy i know..everything on god and try to br strong

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Thank you! All is in God's hands now!

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@snd

Hi..since 2 months suddenly i discovered that i have PNET 20 cm so they removed 2/3 of the pancreas also the spleen..they told me that the tumor has metastased to some lymph nodes and they removed so no need for chemo ..my next follow up for MRI is after 5 months..please who had same case it can come again ?? Im just 30 no kids yet im so scared and i cannot plan any things for my future im just paralyzed and i stopped all my goals

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Hello @snd. I am sorry you are feeling scared and totally understand feeling like you are paralyzed. The fact that your doctors think they were able to removed the tumor from the lymph nodes, sounds promising.

You will notice that I moved your post into an existing discussion on PNET Grade 2 so that you can connect with @pavlina60 again. You can find your post here:
– Recently diagnosed with PNET Grade2: https://connect.mayoclinic.org/discussion/recently-diagnosed-with-pnet-grade2/

Are there any short-term goals between now and your next MRI you can focus on so you can feel like you are moving forward, at least somewhat?

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My husband went in for heart valve surgery and the surgeon accidentally found 5cm NET on tip of his pancreas. A PET scan revealed multiple lymph nodes affected. It’s been a long wait since October and we are anxious to get the NET out in a few weeks. The surgeon at Cedars Sinai will perform surgery verses a biopsy first due to the size of the tumor. It’s been extremely stressful having to face this just after my husband lost his sister-in-law to pancreatic cancer in September. We are thankful he was diagnosed before it metastasized into other organs. Now that his heart has healed we are now faced with another challenge. I’m comforted knowing others are facing similar challenges. We don’t know if chemo will be prescribed after surgery.

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