Pancreatic cancer screening in PJS

This is important because pancreatic cancer screening guidelines for PJS people vary dramatically by expert, center and country. The experts agree we need screening, but don't agree on what type, age to begin or frequency of screening. 

Still, it's an important start.

PJS Meet & Greet in Pennsylvania, USA

OUTDATED! FOR ARCHIVE ONLY! Fourth PJS Meet and Greet  July 28 and 29, 2012 Pennsylvania, USA

My other family - Peutz-Jeghers people

Photo of me as young adult

Check out those freckled lips, I have classic Peutz-Jeghers syndrome.

xoxoxox

Dear guests,

Thank you for visiting the Peutz-Jeghers News Blog.

If you've come seeking information, you'll find some here.

Unfortunately, due to my advancing breast cancer, I can't keep this blog updated now.

If you've come seeking support, please don't write to me one-to-one.

For information and support please do join the Peutz-Jeghers Syndrome & Juvenile Polyposis syndrome Online Support Group. It's free and run by volunteers. There are currently over 300 members from around the world

https://www.smartpatients.com/communities/peutz-jeghers-syndrome

I wrote the following story about my PJS adventures and how the online support group has changed my life for the better.

If you want to learn more about PJS or JPS and meet others, I hope you'll join that group and benefit too.

warmest, healing regards,

Stephanie Sugars

Role of PJS gene in breast cancer spread

Last month I got very excited by the following news (two press releases and link to free full text article) about the PJS/LKB1 and breast cancer connection. My excitement multiplied when I realized that the research came from near-to-me UCSF, a place I’ve been treated for metastatic breast cancer for over a decade. I was able to speak with Zena Werb and found that the study has moved to Finland where there are lots of PJS patients. And that they don’t need pathology or cytology donations from anyone local.

Darn! My book club just finished Rebecca Skloot’s Immortal Life of Henrietta Lacks and I was ready to sign up as an informed and willing lab rat. Or at least sign a tissue release form.

Btw, my cancer has progressed dramatically recently and I may need to abandon this semi-neglected blog.

TIA for your healing thoughts and well wishes.

Keep on learning, keep on sharing,

Love,

Stephanie Sugars

For those who want to learn much, much more about PJS

The British Medical Journal has an incredibly detailed Peutz-Jeghers syndrome entry. To access it, you'll need to scroll down the page and sign up for the free 30-day trial. Peutz-Jeghers syndrome Highlights - Best Practice - BMJ bestpractice.bmj.com/best-practice/monograph/1128.html