Driving Change in Hepatocellular Carcinoma (HCC)

[AndreaWilson_Founder]

Hello everyone,

This is a bit last minute, but I'm attending an early morning meeting tomorrow (7:30 a.m. CST) about HCC and patient advocacy. If there's anything you would like me to share in the two-hour meeting (sponsored by AstraZeneca), please let me know in the comments. I want to ensure your voice is heard!

💙Andrea

[e-mail]

[DancingEyes63 Moderator Caregiver]

I'm sure that you may already be sharing some of this but here goes...... Be an advocate for your person. Always research and ask questions. Never assume that the Doctor is always right. Trust your instincts and your gut and never be afraid to speak up, seek a second opinion or stop a current treatment. After all it's YOUR life or your person's life at stake. Listen to your person and follow their wishes. Ultimately it's their choice as to what they want to do. Live each day to the fullest and cherish each moment. New treatments are coming every day so anytime that a current treatment buts you may keep you alive until the next treatment is released. Never give up on living. Speak out and share your story as much as possible. The squeaky wheel gets the grease and HCC needs lots of grease. ❤️❤️❤️Sharon Dixon ❣️

[scbauer77 Caregiver]

Thank you for your incredible advocacy work, Andrea. A question I would have involves efforts toward the development of screening guidelines and risk stratification for liver disease and HCC in individuals with diabetes. Given the prevalence of obesity and diabetes, this seems like an area that should be a priority.

The prevalence statistics for diabetes in the U.S. (diagnosed and undiagnosed, prediabetes):

cdc.gov/diabetes/data/stati...

Article on diabetes, NAFLD, and HCC:

ncbi.nlm.nih.gov/pmc/articl...

Of note, my dad had diabetes but did not have NAFLD. His liver biopsy did not show any pre-cursors, highlighting what is not known about this connection develops.

Andrea, thank you for all you do!

Sarah

[AndreaWilson_Founder Partner Editor Caregiver]

DancingEyes63 and scbauer77 Thank you for your feedback. While the meeting was open to hearing from advocates, it wasn't as productive as I had hoped. The group was so focused on the Multi-Disciplinary Team with little acknowledgment that most people don't have that luxury. As for your specific question about risk stratification, they blew it off. Sigh ... we have so much work to do! 🙄

💙Andrea

[Foxy1977 Moderator Patient in reply to AndreaWilson_Founder]

Thank you so much for headlining/spearheading this essential work! We are all so grateful!

[AndreaWilson_Founder Partner Editor Caregiver in reply to Foxy1977]

You're very welcome. It can be maddening at times! 😀

[bwpickard Caregiver]

Andrea Thankyou for continuing to educate and promote the needs in HCC despite the hurdles and brick walls. The treatment evolution in HCC is so encouraging with new treatments being advanced but the risk stratification and early detection is such a huge hole. Diabetes as a risk factor is not discussed with most patients and a GI MD recently told me the leading cause of cirrhosis is now obesity…also not well known!!! It is critical to get ahead of HCC which you do so well with the Love your Liver education. I know there are days you must want to throw up your hands, but those of us affected by HCC as a patient or family member are so grateful for your efforts!!!! ♥️🙏🏻

[AndreaWilson_Founder Partner Editor Caregiver in reply to bwpickard]

Thank you bwpickard 😊