Thank you for setting up this community forum. I have not yet figured out how to set up a new topic. I could not find a topic related to my experience.
I acquired HBV at birth from my mom and unfortunately it was passed onto my daughter despite her getting vaccinated at birth. Perhaps my viral load was too high and this was at the time when safe antivirals weren’t available for pregnant women. My daughter has been on Entecavir, Viread and now Vemlidy due to fibrosis found on her Fibroscan. She had a viral breakthrough on Entecavir but has been stable on Vemlidy since 2015. However recently a 3 mm liver nodule was discovered on her latest abdominal ultrasound. I am VERY worried and wonder if anyone has any experience with this diagnosis? Her GP advised to monitor it with more frequent ultrasounds and she will talk with her Hepatologist next week. She is only 26 years old. Thank you.
Thanks for joining the community and sharing your story. I’m sorry to hear about the understandably stressful situation you and your daughter are in. It sounds like you have done exactly the right things in maintaining regular monitoring and getting on antiviral therapy when you needed it.
The discovery of the nodule must be really disappointing and making you afraid, but it sounds like you caught it very early because 3mm is tiny and many treatment options will likely be available. It’s also important to note, while you may be already thinking cancer, there are also other benign things it could be (e.g. a cyst, adenoma or haemangioma). Benign nodules are actually a lot more common.
It sounds like you are approaching this situation appropriately. Please keep us all updated if you can and know that you’re not going through this alone!
Hope this helps.
Thank you @ThomasTu for the reassuring words. I have been quite active in the Hepatitis B foundation organization and was one of their story tellers. I was also part of the HBV email list. With all the information and questions about this disease, I can understand why this community is more streamlined and topic oriented.
I certainly am hoping and praying that this nodule is benign. My mom passed away from HCC when she was in her mid 60’s and she had not been monitored for her liver function or for the presence of HCC. Her tumor was inoperable by the time it was discovered so I agree regular monitoring is crucial in the management of this condition. Due to her family history and early onset of fibrosis I am of course very concerned about my daughter. I have read that liver nodules are fairly common in the general population but I was wondering if you know the how high the prevalence is of these nodules being malignant in the HBV population. I am afraid to know but I am trying to be aware of the possibility. Thank you again for your informative answer.
I too hope that this is not a serious nodule. I could not find anything about the proportion of benign to malignant nodules, but I did find that it is very common to have liver nodules that are benign. For example, 7% of ALL people have hemagiomas, 5% have liver cysts, 4% have focal nodular hyperplasia, all of which are benign and all of which occur more commonly in women compared to men (HCC occurs more commonly in men). Because you are monitoring, you’re just more likely to find these, but more than 15% of people (about 1 in 8) will have these lesions and never know they have them (they generally don’t cause any disease/symptoms whatsoever).
I hope this comforts you at least a bit.
Sending good thoughts your way,
Hi @wml, I am very concerned about your 29 year old daughter’s liver nodule as well. I am hoping that her doctor is going to recommend an MRI of her liver since an ultrasound doesn’t provide the same amount of detail and specificity as an MRI. When I was 59 years I switched hepatologists and the new specialist wanted a baseline MRI of my liver. Lo and behold they found a 3 mm nodule, so I underwent an MRI every 3 months for 9 months thereafter. It turned out to be a liver cyst, but since I am adopted and don’t know my family history, the doctor wanted to be extra vigilant. With your family history of HCC, it would seem imperative that your daughter be surveilled by MRI, not ultrasounds. Is that possible? And thank you for participating in the #justB storytelling project with the Hepatitis B Foundation!!! Please keep us posted. Always, Joan
Thank you Thomas for these stats. They are similar to the numbers that I have seen in my research.
However, I’m not sure if they distinguished between liver nodules found in HBV patients vs the general population. My husband read that nodules in people with HBV are assumed to be cancerous which of course deeply concerned me.
Thank you Joan for sharing your experience. It is a relief to hear that your similarly small nodule was a cyst and not something more threatening. My daughter has an appointment with her Hepatologist tomorrow. He is very knowledgeable about liver conditions and well recognized in the medical community but unfortunately I find he can be rather dismissive. He told me he was not concerned about my daughter’s ultrasound report and that he was surprised that her GP contacted her. Nevertheless, I will ask my daughter to request a MRI and an AFP test which for some strange reason she did not have for 5 years! Unfortunately, living in the land of universal health care (Canada) can have its advantages but it also sometimes means waiting a long time for procedures. I do have a friend who is a MRI tech so he might be able to help me out.
Fortunately her other tests have stabilized as her ALT and AST have been WNL and her viral load has been undetectable. However, I know that HCC can occur without cirrhosis of the liver with HBV.
Thanks again for your support and consult!!!
Yes @wml you must advocate for your daughter! With your mother’s death from HCC, it is imperative that your daughter’s liver nodule be followed up aggressively with MRI. Not realizing you live in Canada, I realize the challenges you may face. Although healthcare is available to everyone, it can be harder to get specialized services like MRI than in the U.S. But please make sure your daughter’s hepatologist knows that her maternal grandmother died from HCC. That information should change the equation for her hepatologist. Thanks, Joan
Thank you @Joan_Block for your wise words! You are a such a respected member in the Hep B community and I appreciate your advice.
My daughter and I share the same hepatologist after mine retired so he is aware of our family history but he seems reluctant to pursue more intense tests at this time. He feels that more frequent abdominal US (every 3 vs 6 months) are adequate for someone who is slender like my daughter. I might be able to persuade him otherwise but as you said, obtaining a MRI in Canada can be a challenge. He did order an AFP for her which might give us more information since it was very elevated in my mom’s case when she had HCC.
I have a lot in common with you so I really empathize with your situation! My mother and her sibilings all developed HCC in their 60s and my mom unexpectedly passed away while undergoing testing to see if she was eligible for a transplant. I contracted HBV from my mother at birth (my sister did not) and have been followed by a hepatologist for the past 10 years. I finally went on Vemlidy in 2018 without any issues, but on my latest ultrasound, they found a 2 cm nodule. My doctor commented due to the size and my history (ALT/AST/viral load) he was fairly certain that it was benign but sent me in for a MRI. It turned out to be a hemangioma and he feels that I only need to be followed going forward by ultrasound, not MRI. I am also on a clinical trial for HBV and the research doc agrees.
I hope all goes well with your daughter and everything turns out okay!
All my best,
Thank you for sharing your story! I really appreciate it. May I ask if your ALT/AST were within normal range? In my lab the upper limit normal is 36 U/L but I know that it’s been recommended that the range be reduced to 20 U/L for females. As well, did you achieve an undetectable viral load while on Vemlidy? My daugter’s ALT/AST levels are normal within our lab’s range and thankfully her viral load is undetectable but it took a few years to achieve this milestone. She is also on Vemlidy.
If you don’t feel comfortable sharing this personal information I understand. I am just trying to understand how potentially serious this nodule is based on the information I have on her situtation since she will not be getting an MRI yet and will just be on ultrasound surveillance.
I don’t mind sharing at all! On my most recent labs, before finding the nodule, my ALT was 24 and my AST was 26. I achieved an undetectable viral load very quickly after starting Vemlidy in 2018, I think it was within 3 months, and it’s been like that ever since. I’m 41 by the way. I think due to your daughter’s age, the size of the nodule and her lab results they are going to want to just watch her but I certainly understand wanting to get the MRI for peace of mind!
Thanks Rebecca for sharing your experiences and lab values, etc. It’s really great to hear from more people on this forum. We’re all experts because most of us are living with hep b. So sharing information is really helpful. And your advice is sound about staying calm and watching since @wml’s daughter will probably be monitored closely with ultrasound. But I still hope that an MRI will be possible at some point since no matter how thin or slender a person is, an ultrasound will never be able to image the liver in as much detail as an MRI. But yes, staying calm is the best advice in any difficult situation. Always, Joan
I agree that I would prefer an MRI be done on my daughter. I will wait for her AFP results to come back and her next US report. If any of them are concerning I will definitely request an MRI. Yes we are all experts in living with this condition as we must navigate through so many tests and appointments. As many of us have hoped for I certainly look forward to at least a functional cure being discovered as I know the Hep B foundation has been trying to find for years now. It is one of the reasons I decided to become involved with such a valuable organization.
Thank you for all the work that you and your colleagues are doing to promote this cause.
Thank you Rebecca for sharing this information!! I was feeling a bit more relieved after finding out that both you and Joan were not diagnosed with HCC after finding a liver nodule. My husband had read that if a liver nodule was found in a person with HBV it was assumed to be cancerous. That was certainly disconcerting information. It was also good to hear that your other lab results were similar to my daughter’s although it took her longer to achieve normal levels while on antivirals.
I wish you all the best of health!
8 posts were split to a new topic: How do you take your daily antivirals?
I was reading through the messages on this group today.
I have only recently been diagnosed with HepB accidentally when I was in the hospital for some other process.
My hepatologist has ordered a baseline MR Elastogram of my Liver and there was a tiny liver nodule of Size 6.4 mm in my liver. I must confess that I was unable to sleep the night as I was to meet the Hepatologist the next day while I had the reports to do all the research about what each of those words in the report meant. The next day as I met the Hepatologist with my reports she studied them and after talking to the radiologist who had conducted the MRI informed me that the Nodule was benign and a simple cyst that need not be followed up. I was relieved to hear that.
However, I see that despite a cyst in some cases regular MRI follow-ups have been done by some people as frequently as within 3 months of discovery. This concerns me a bit. Maybe I should ask my doctor if I should also follow up for the tests. In my case, I need to travel to a different country for the tests, and hence it kind of worries me.
We all live by hope each day. So, I hope all will be well with your daughter too.
I completely understand about not being unable to sleep while waiting to talk to your hepatologist about your results. I felt the same way!
Have you been scheduled for 6 months ultrasounds as a part of your regular care? I will admit I only got them annually in my younger days but ever since I started the anit-viral medication I am committed to the 6 month ultrasounds. I got my MRI to followup on the nodule that was seen on my regular ultrasound checkup, but after it was determined to be benign, I got switched back to ultrasound checkups at 6 month intervals as usual.
Hi @Rebecca ,
Interestingly the nodule didn’t come up in the ultrasounds as they only showed very little fat in my liver. My Hepatologist went for MRI to determine whether I should start the treatment or wait further. The liver came our fine so she has delayed the treatment by 1 more year.
Now that the nodule has been discovered in MRI maybe it should be detectable in Ultrasound too. It is a good idea to follow up with it in 6 months. As of now I have been asked for Liver Function and Lipid Profile every 6 months and a detailed testing for viral load, and other things along with Ultrasound every 12 months.
Thanks for the suggestion. Take care.