Terrified mom

Posted by sealaurel @sealaurel, Jan 17, 2022

Hello everyone, I am a mother of an adult daughter. She is 31 years old and had been recently diagnosed with WFNET. It is a low grade tumor, her primary care doctor said it should be considered a benign tumor. Though her surgeon insists that he treats all of these tumors as cancerous . She lives in Alaska and as you might guess medical options are really scarce there. Her surgeon suggested a Whipple procedure. It is absolutely terrifying to everyone in our family. She has been a healthy person, likes to hike, run, swim. Eats right. Married. They want to have kids. And now that. Whipple procedure is basically a life changing event. It has high mortality rate, very difficult to recover from and puts an end to most of her dreams and plans. And the tumor is not even big or aggressive. The MN clinic called her with the questions and said they would review her caee and let her know in a few days if they going to take it. We, her parents, her husband and out girl herself, are absolutely terrified by a possibility of a rejection. Mayo had the best specialists in minimally invasive procedures, surgeries that preserves most of the organ and enucleation in particular. Robotic surgery is also an option. If not them then who? She is so young, with the whole life ahead of her.

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

I am 74 and had the Whipple last February. Open procedure. Had a terrific surgeon; used spinal block and was able to start walking around the hospital unit the next morning. Went home in 5 days instead of the usual 8-10. My surgery was 3.5-4 hrs instead of the usual 6-8. I now have metastases to the liver as I have a rare genotype and had one positive node that has reared it's head. BUT I would do it again and probably earlier by a month or so. Get a second opinion but Mayo has experience for sure. It should impact her future of family but ask all those questions. The main thing is her life...Pancreatic cancer is still uncurable and avoid if possible. Let us know how this progress. Positivity is a MUST.

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I meant to say the surgery should Not impact her future family plans.

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In order to find other options, start with National Cancer Institute rated facilities.
https://www.cancer.gov/research/infrastructure/cancer-centers/find
Certainly ask any surgeon how many pancreatic surgeries they've performed. It's complex surgery and experience counts.

Good luck and prayers for your daughter and family.

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Hi @sealaurel, it's been a few days and I'm wondering if you learned anything new about the treatment options for your daughter? How are you doing?

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