Diagnosed with HCC in a non-cirrhotic chronic Hep B liver

Posted by danieldani @danieldani, Apr 25 5:55am

Hi everyone,

I'm happy I found these support groups. I find already support in reading all of your experiences in this journey.

I am 41 years old and I have been diagnosed with HCC now for a month (one single lesion of 6,5x5 in section 4B/5 with no metastases) I am struggling a lot with the acceptance of it. Also I have no symptoms.

The doctors are discussing resection or liver transplant and they want to discuss this with me tomorrow. I don't really know what to think of these two options but we'll see.

I am trying to make the situation (mentally and physically) around the HCC as good as possible.

I am open for any tips that I could benefit from.

Stay strong everybody!

Daniel

Interested in more discussions like this? Go to the Liver Cancer Support Group.

Hello @danieldani and welcome to Mayo Connect. I understand what you mean when you say, "I'm happy I found these support groups. I find already support in reading all of your experiences in this journey." That is the way I felt when I realized that I had another recurrence of a rare form of cancer. It was great to meet others who had walked down the same road and who had survived. A new cancer diagnosis can be frightening, and it helps to learn from others.

It is certainly not unusual to have cancer, but not to have any symptoms. I had the same experience. Many of us were told of a cancer diagnosis during a scan or test that was totally unrelated. Was this your experience as well?

Here is some information from Mayo Clinic's website about HCC. You can read about some of the treatment options that are available.
--Hepatocellular Carcinoma
https://www.mayoclinic.org/diseases-conditions/hepatocellular-carcinoma/cdc-20354552
Have you considered seeking a second opinion? Whenever you are facing a cancer diagnosis, getting a second opinion is a good idea. If you can get that second opinion from a well-known cancer center that is especially helpful. Do you have a cancer center of excellence in your area?

Mayo Clinic is a great place to go for a second opinion. If an in-person visit is not possible, perhaps a virtual visit would give you some good guidance and direction. Here is information on how to obtain an appointment at any of three Mayo facilities, http://mayocl.in/1mtmR63

I would encourage you to read the information, provided in the link above, so that you will have a frame of reference when you talk to your doctor tomorrow. Here is a link to a discussion on how to have a successful doctor's visit. I think you will find the suggestions as well as the video helpful to you,
https://connect.mayoclinic.org/discussion/keys-to-a-successful-doctors-appointment/
What are the questions you hope to have answered at your appointment?

REPLY

Hello Daniel,
Glad to meet you. HCC is a tough diagnosis to handle. It sounds like you have good options though. I am sure your docs will discuss the pros and cons of each choice. Hang in there. Glad you are not feeling ill.
Sue

REPLY

Thank you for your support!

I had my appointment today and the doctor said he wants to start surgery within 4 weeks through micro-invasive or via open surgery. They are a little bit worried though because my AFP levels are extremely high. They want to do an endoscopy first to double check if I don't have metastasis that they could not see on the MRI/CT.

I am happy that I'm eligble for resection but also a bit worried for the chance of recurrence due to the high AFP levels. I started last week with a medicin called 'Tenoforvir' to reduce my HBV DNA levels and it could lower the AFP levels.

Fingers crossed and have a good weekend,

Daniel

REPLY
@parrot53

Hello Daniel,
Glad to meet you. HCC is a tough diagnosis to handle. It sounds like you have good options though. I am sure your docs will discuss the pros and cons of each choice. Hang in there. Glad you are not feeling ill.
Sue

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Thank you for your support Sue! I am also happy that I am not feeling ill. Most part I 'm struggling now with the 'acceptance' and 'fear' part.

Have a good weekend.

Daniel

REPLY
@hopeful33250

Hello @danieldani and welcome to Mayo Connect. I understand what you mean when you say, "I'm happy I found these support groups. I find already support in reading all of your experiences in this journey." That is the way I felt when I realized that I had another recurrence of a rare form of cancer. It was great to meet others who had walked down the same road and who had survived. A new cancer diagnosis can be frightening, and it helps to learn from others.

It is certainly not unusual to have cancer, but not to have any symptoms. I had the same experience. Many of us were told of a cancer diagnosis during a scan or test that was totally unrelated. Was this your experience as well?

Here is some information from Mayo Clinic's website about HCC. You can read about some of the treatment options that are available.
--Hepatocellular Carcinoma
https://www.mayoclinic.org/diseases-conditions/hepatocellular-carcinoma/cdc-20354552
Have you considered seeking a second opinion? Whenever you are facing a cancer diagnosis, getting a second opinion is a good idea. If you can get that second opinion from a well-known cancer center that is especially helpful. Do you have a cancer center of excellence in your area?

Mayo Clinic is a great place to go for a second opinion. If an in-person visit is not possible, perhaps a virtual visit would give you some good guidance and direction. Here is information on how to obtain an appointment at any of three Mayo facilities, http://mayocl.in/1mtmR63

I would encourage you to read the information, provided in the link above, so that you will have a frame of reference when you talk to your doctor tomorrow. Here is a link to a discussion on how to have a successful doctor's visit. I think you will find the suggestions as well as the video helpful to you,
https://connect.mayoclinic.org/discussion/keys-to-a-successful-doctors-appointment/
What are the questions you hope to have answered at your appointment?

Jump to this post

Thank you Teresa for your reply. My GP asked me if I've ever had a Echography before. I never had one because I only had to screen my blood every 6 months due to my Chronic inactive Hep B infection.

She recommended it so I did. That's how I found out.

REPLY
@danieldani

Thank you for your support Sue! I am also happy that I am not feeling ill. Most part I 'm struggling now with the 'acceptance' and 'fear' part.

Have a good weekend.

Daniel

Jump to this post

Hello Again Daniel,
Yes, I know the feeling well. I was diagnosed with HCC after many years of Hep C infection. Finally cleared it with Epclusa in 2019 but not before my liver became Cirrhotic. I have been on the transplant list for a while now but I did have an ablation to remove the tumor and may be able to come off that list if I stay cancer free. It is a game changer for sure. I must say though, I cherish each day and all the wonderful people in my life more since my diagnosis. Acceptance and fear are good motivating forces to get your priorities straight. Hang in there.
Sue

REPLY
@parrot53

Hello Again Daniel,
Yes, I know the feeling well. I was diagnosed with HCC after many years of Hep C infection. Finally cleared it with Epclusa in 2019 but not before my liver became Cirrhotic. I have been on the transplant list for a while now but I did have an ablation to remove the tumor and may be able to come off that list if I stay cancer free. It is a game changer for sure. I must say though, I cherish each day and all the wonderful people in my life more since my diagnosis. Acceptance and fear are good motivating forces to get your priorities straight. Hang in there.
Sue

Jump to this post

Thank you! Good to hear that you are cancer free and I hope it stays like this! I agree, it totally changed my life perspective.

Did you had a lot of symptoms? or like me 'no symptoms'?

REPLY

Tired most of the time, but no ascites,edema, itchiness, etc.
I still do have issues with sleeplessness. I also have portal hypertension. But basically, I am good. Blood work is good, no HE or mild if it is HE. I did have esophageal varices but since taking Carvedilol according to last endoscopy they had cleared. I consider myself very fortunate. I am wishing the same for you. It was a shock for me to hear I might need a transplant. Will your doc do further testing to determine the best treatment? Are you at a teaching hospital? It is a journey for sure. I just take it each day one at a time when I get stressed.

REPLY

Hi Daniel. Welcome to Mayo Connect. It is very reasonable for a person to feel unsettled by a new diagnosis like this. It looks like you are getting good input already from the group and your doctors.
Finding someone to share all of this with, can be helpful in processing difficult news like this. Do you have a faith foundation you can turn to , a close friend who will listen and suppoort , or even consider a Chaplain at the hospital you are treated at? Talking about and talking through all of the emotions is important! Hoping things move forward with an improvement in your lab results.

REPLY
@lbrockme

Hi Daniel. Welcome to Mayo Connect. It is very reasonable for a person to feel unsettled by a new diagnosis like this. It looks like you are getting good input already from the group and your doctors.
Finding someone to share all of this with, can be helpful in processing difficult news like this. Do you have a faith foundation you can turn to , a close friend who will listen and suppoort , or even consider a Chaplain at the hospital you are treated at? Talking about and talking through all of the emotions is important! Hoping things move forward with an improvement in your lab results.

Jump to this post

Thank you for the support and yes I have a good support system around me where I can talk to. It is different though when I speak to my surroundings compared to support groups like this one. Here everyone understands 100% what you are going through when diagnosed with cancer. Sometimes the waiting and uncertainty can be challenging, I can't wait to go into surgery and fight this cancer.

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