I've been asked to present to BMS's Medical Affairs team in January. As always, I like to include your personal thoughts in my slides. Their questions are bolded. My version is in italics. I look forward to sharing your thoughts with them!
Who are the types of people reaching out to your organization? Are you a patient, caregiver, survivor, doctor, etc.?
What issues do you see/witness with patients? What issues have you faced (regardless of your role)?
What information do patients/caregivers need more help communicating with physicians about? To reframe the question, how can physicians communicate with you better? Where is their communication failing?
What can you share about the patient journey for HCC? What would you like to share about your patient/caregiver journey?
Thank you so much!
💙Andrea
Written by
AndreaWilson_Founder
Partner
To view profiles and participate in discussions please or .
1) I was a caregiver for my late husband Jimmy during his two year battle with HCC. Following his death on 2022 I've focused on sharing his story and advocating for other patients and caregivers facing HCC.
2) We faced delays in diagnosis and treatment is to insurance issues problems obtaining treatment n rural area and his cancer being advanced when diagnosed due to lack of surveillance/testing even though he had risk factors.
3) I would like to feel like the oncologist/specialist/physician is actually listening to me during the 5-10 minutes they are present during the appointment. Also feel like we were actually involved in the treatment decisions and have options discussed with us.
4) There needs to be more communication not only between patient/physician but also between the different specialists asking care of the patient. Every patient doesn't have access to a large cancer center or hospital where the physicians are all in one central location and in same hospital system. We had to see specialists in different cities and often different hospital systems which often resulted in one ordering a rx or test which another one cancelled because it was an issue with something they had ordered.
5) We need to work on getting rid of the stigma associated with HCC. No one deserves cancer no matter the probable cause of their life choices.
Who are the types of people reaching out to your organization? Are you a patient, caregiver, survivor, doctor, etc.?
1. I was a caregiver who is also an RN during the 27 months of my husband's battle with Stage 4 HCC.
2. My husband was diagnosed with very early cirrhosis one year before Stage 4 HCC diagnosis. We were told he had NO risk factors despite being an insulin dependent diabetic, overweight, and a beer drinker and we were not knowledgeable about NASH or HCC risks at the time. When his enzymes except Alkaline Phosphatase returned to normal after he stopped all alcohol, the GI MD minimized his cirrhosis and said we didn't need a GI MD and could f/u with his internal med PCP---despite the fact I was asking about what monitoring needed to be done. A GI MD recently told me obesity is now the #1 cause of NASH. Diabetes is a major factor. MD's need to be better educated about NAFLD, NASH, risk factors and actively doing surveillance of those with risk factors to be able to find HCC in early treatable stages.
3-With the advent of hospitalists and on call MD's in the ER, patients/caregivers need to be educated about info to convey if they ever have to go to the ER---Bring recent labs/scans with you. Provide info about the activity level of the patient so assumptions won't be made that affect treatment decisions because of the HCC diagnosis, especially if it's stage 4. Many people are living active, productive lives with Stage 4 cancer but the ER MD's don't know you or your family member's history/activity unless you are proactive with sharing that info.
If you are not being treated at a major cancer center that has a team approach it is critical for MD's to work together as a team and for the primary MD to seek info from the other MD's involved. Because I'm an RN, I knew what info they needed but many patients/families have no idea and the team approach is critical for maximizing treatment outcomes and use of treatment options.
4- The negatives of my husband's journey were a missed opportunity for early diagnosis by the GI MD not recognizing/informing us of risk factors or providing more diligent surveillance. The other negative was our ER experience which resulted in my husband passing away from a complication as his cancer was not yet last stages. The positives were a wonderful intervention radiologist and oncologist who shared info, brainstormed treatment options and were invested in providing the best, most current care they could which gave my husband more time despite stage 4 HCC diagnosis.
Andrea, hope this helps...like Sharon, I know this info isn't new to you! Bonnie
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
My husband has been battling liver cancer since 2016
Updated information causing confusion
My mom has HCC
