Hepatitis C Questions –
If you have any questions about hep c or liver disease, let me know and if I can’t find it through my own research, I have a lot of “expert” friends who can!
So go ahead and leave a comment or question. My email is ihelpc.com@gmail.com. Drop me a line.
If it’s private, hit the Contact Me button. Your best friend knows how to keep her mouth shut. Promise. Karen 🙂
For Hepatitis C Questions, there are so many resources that I can direct you to or I can at least point you in the right direction. Many of my blog posts have come from questions that I receive. My personal experiences have led to me dig out a lot of answers. I’m not an expert in many areas, but I am your Best Friend in the battle.
12 thoughts on “Hepatitis C Questions”
I have a golf-ball sized tumor in my liver on Ultrasound. It was documented about 5 yrs ago and just recently updated June 2013. The “cyst” still remains. How can you tell the difference between a “cyst” and “tumor” on Ultrasound? What are the consequences of a “cyst” and could this “cyst” possibly be a “tumor”. My physician has not asked for any other study or a recent biopsy (I had one approx 11 yrs ago), but had a fibroSURE test which gave the same results as the previous biopsy.
Carie – I posted your question on a forum that I moderate on Facebook called HCV Questions and Answers. I don’t always have all the answers, but am connected with those who do. I’ll pop you answer soon. I am looking into the Fibrosure test also. A biopsy is invasive, but they are great diagnostic tools.
1. Do you have HCV?
2. Do you have Cirrhosis?
Thanks girl. Great question. xoxo Karen:)
Hi Karen, Just got a wayward email that lead me here. Its 2019. Was dx with Hep C about 2000. Have not done tx recently though gave a go about 18 yrs ago when it involved shots, pills, followed by insomnia, high temperatures, hair loss, oral thrush, pneumonia and anemia. Had to quit after 3 mo. Tried 2 times to do more recent tx, but drs here couldn’t get it together. I’m on Soc Sec Dis any way for other issues, so I’ve given up on doing tx. In fact, I’ve given up on medicine and anything you have to obtain with a prescription. Being in CA and a chronic pain patient, you now have to be willing to be treated as a parolee or freshman out of drug rehab. You are urine tested and placed on a universal list of drug users. To me its downright insulting, so I’ve opted out of the medical system altogether.
I’ve recently been dxd with diabetes and read some studies linking hep c with diabetes. Have you heard of this?
Glad you are doing well and wish you continued good health.
Hello dear one,
I hate Hep C. Just hate what it’s done to our lives. I can honestly say that treating and getting rid of Hep C was the best thing that ever happened to me.
I understand you giving up on the health care system. That is your right. You’ve been through so much. There is a lot of evidence that points to extra hepatic manifestations, including autoimmune, diabetes, heart disease and so much more. I hope that you are able to control the diabetes now. Keep me posted on this. I do answer comments on here, although sometimes late. xo
Please reconsider talking to a counselor about getting treated. Please call Help4Hep and talk to one of their counselors. It’s a confidential toll free number. No one there will make you feel poorly. They get it. Here is Help4Hep number: 877-435-7443 and another place 877-532-5274 is the Patient Advocate Foundation.
Stay in touch sweet one. xo Karen
Lucina Porter R.N. moderates on the Facebook page. I knew she would have more insight on your situation Carie. PM me or FB me for more info. xo Lucina: “Ultrasounds can detect varying densities of tissue, which is how they can tell the main difference. There are: liver cysts, liver tumors, and cystic liver tumors. I assume yours is a simple cyst, basically because a) they are common, and b) it hasn’t grown. Liver tumors grow rapidly and if was documented 5 years ago, we are very unlikely to be communicating with you about this. HOWEVER – a cystic liver tumor can develop into a malignancy, and this may take time. Although I am reassured about the diagnosis, I am disturbed it was “recently updated.” Are you saying that you had an ultrasound 5 yrs ago, they found a cyst and did not repeat the test or follow-up with other types of scans? If so, this bothers me – with a cyst that size, I would assume an u/s would be ordered at least every 6 mos (maybe more often initially, but the initially part has past). Also, you need to be sure it isn’t a cystic liver tumor, which can develop into a milignancy. Perhaps ask your doc for an explanation of her/his follow-up protocol, and if you aren’t satisfied with the explanation, consider a 2nd opinion – not because the cyst is alarming, but because I don’t want you to fall through the cracks.”
I had a liver biopsy done in 2000. Results were Stage 1 fibrosis, Grade 2 inflammation. This was done before I attempted treatment which I could not complete. Since that time, have a regular GP. First liver ultrasound done in 2006 showed a simple cyst 3.4 x 3 cm right hepatic lobe. Asked GP if I could try treatment again while I still have family alive (live w/my mom age 75 and grandmother age 102). So my GP is working w/hep dr from UC Davis, via Telemedicine. Hep doc asked to have another ultrasound, which I did in June 2013. Second ultrasound (7 years after 1st study) showed 3.0 x 3.0 cyst, no ascites and unremarkable gallbladder. Ultrasound is part of my pretreatment studies. So was the June lab work that included a IL28 with a result of “TT” (I’m genotype 1a) and a FibroSURE test with a fibrosis score of 0.25 (Stage. F0-F1) and a necroinflammation activity score of (Grade A0-A1). FibroSURE test was done in place of another liver biopsy. Ultrasound would not have been repeated, if I were not going to do treatment. I am on SSDI, now for last 14 years. Only have Medicare, don’t qualify for anything else. Live in small town in Sierras inCA, population about 16,000. Access to healthcare is limited. Going to begin treatment in next couple months with 3 drug cocktail. Being on SSDI is not because of HCV. Am a chronic pain patient with numerous orthopedic issues and fibromyalgia. No 2nd opinions. Docs here will not take new chronic pain patients who have Medicare only. Thank you for your reply. It’s much appreciated.
Carie – I didn’t post your personal response. xo. I hope you will follow up on HCV Questions and Answers on Facebook. There are also great forums listed in the Best Websites blog. Even though you live in a small community the internet can take you anywhere. I wish you the best as you begin triple therapy. You know I will follow up. xoxo BFF. Karen:)
Thinking of you Karen, I hope you are doing ok. I am praying for you
Dorene
I love your sweet heart. Thanks so much for keeping me in your prayers. I pray for all of us too! xo Karen:)
Not sure on the blog where to best post this – so here it is. I have written in a couple of times and wanted to give an update.
First – a little background. A cancerous tumor was discoverd on my liver in April 2015 (this after living with Hep C for over 40 years with no real impact on my health – that I could feel.) The tumor was ablated, and I was put on a transplant list. Follow up scans were done at months one and three, and both were clear. In the meantime, I was doing all I knew how to do to live a clean, healthy lifestyle.
My 6 month scan was done the day after Thanksgiving. The next week I learned that my liver is “full of tumors” and I am ineligible for a transplant. I just started taking Nexavar, which is a cancer pill that can slow down growth and spreading, but not cure it. I am told it will buy me 3-6 months.
I am a 64 year old woman who was very active (even traveled to Haiti over 20 times) with a husband, four children and seven grandchildren. I am not afraid to die. I know, without a doubt, where I am going. I trust in God’s perfect plan, even in the midst of this. I know He has numbered my days from the beginning of time and I won’t leave here one second before or after He wants me to. But I am still a little sad. I’m not ready to leave the party yet….
❤️
Oh Lynn,
This just really sucks. I hear you though. I get it. When the tumor grew back after Tace, I accepted it. I turned inward and found this expansive place where faith, wisdom, and understanding abide. You have found that place too. Do we all – at diagnosis, just strain toward wisdom? In that place, fear is def along for the ride. Liz Gilbert suggest in her latest book that we should just acknowledge that fear and faith coexist. Like they are both within us, going on a road trip together. We just don’t let fear drive, or even push the buttons on the radio.
I can tell from your demeanor that you have made peace with your doctors decision of how to treat. The Milan criteria is strict regarding size and number of tumors.I tap danced on that line. Remember, anything can happen. Try everything. Pray, love, dance, laugh, and cry. It sounds like your family is close. You’re so blessed. I hope this makes sense. I logged on a n saw this. Every word was sent to give hope and comfort.
Please please keep in touch sweet love,
xoxo Karen
Hello, I remember you! I just read your post with tears in my eyes. I am so very sorry. I am also shocked that your liver could go from fine to full of tumors. Have you gotten a second opinion? I am so very sorry. You are so brave to share your story. I want to give you some comfort in the midst of all of this turmoil. I am just speechless, tears are running down my face now.
God Bless you for writing. Enjoy your family as much as you are able, make good memories for all of you. My best to you, Dee