In my 20's and living with HCC

Hi everyone. I'm from Australia, am a carrier or hep b and was diagnosed with HCC in 2008 at the age of 22. I was told that it was very rare for a female at my age to be diagnosed with this type of cancer.

I was diagnosed after what we thought would be a liver resection, which turned into an open close surgery. They found that I had a 14 cm tumour protruding from the left side of my liver, with a few nodes on the ride side also, which made it impossible to resect. My AFP was 140,000 also.

Few months later I had the TACE treatment, that helped shrink it a little. I had that twice, until they found that my tumour wasn't responding anymore and my only other hope would be to start on the trial that was on at the time. I was started on a medication called Nexavar (sorafenib). I have been on this medication since 2009. This medication lowered my AFP from 140,000 to just 74. It was tough at the start and I suffered some side effect from this drug. I suffered and still do from hand and foot syndrome and ulcers on my tongue. Although its not as bad as it was back then.

I've been in great Health apart from the permanent blisters on my fingers and feet. This year we noticed my AFP creeping up again... It's now at 900. Although its no where near as high as it was, I'm still worried that it means the medication I'm on wont help control the tumour anymore. I am also experiencing tightness, pains and discomfort on the left side of my abdominal area, under my ribs...which I'm positive is my tumour. They're not sure what's causing it as it only happens once a month and lasts for 3-4 days. I'm guess it has something to do with my menstrual cycle as it happens right before I'm due. I wanted to know if anyone else has experienced this before? Also wanted to know if there is anyone else on the forum that's been diagnosed in their early 20's.

Thank in advance for taking the time to read my post, it's taken me years to find something on the net like this.

Post Edited By Moderator (hep93) : 6/1/2013 8:25:50 PM (GMT-6)

Thanx for replying and sharing you treatment with me, hoping all goes well for you.

I have ask my doctors about other treatments and the reply I get is that no one wants to touch me! They don't want to try anything new while I'm still benefiting from this medication. They fear that by trying something else right now, they could potentially cause my heath to deteriorate faster. None of my doctors are willing to give anything new a go. I am told transplant is not an option at all as they had found nodes in my brain and lungs at the time of diagnoses, but don't know if they were a spread from my liver or they were there before. Both lungs and brain cleared up right after starting Nexavar. So right now i feel as though I am stuck! It's depressing me because I'm turning 28 this year. My sister, cousins and friends my age and younger have all started a family of their own. I am patient and content with my illness and am happy with the progress I have made. But it is very hard to have to sit back and watch the years pass you. It's also upsetting because I feel normal, majority of the time I feel no pain at all and you wouldn't know I have anything wrong with me by looking at me. I feel like I'm wasting valuable time after being so sick for 2 years. I am happily married and going on to 2 years, but I am longing to be a mother :( I feel like I'm either going to go through menopause before I get that opportunity or my health will deteriorate. I never talk about this with anyone as I feel silly and feel that everyone would think I'm weird for even having the hope that it could happen one day.

I apologize if I sound selfish or crazy for waiting to start a family whilst having this illness, but can't help the way I'm feeling and wanted to get that off my chest.

Thanks David, wishing you all the best of health

Hi Themiz, yes I have been lurking for a few days. Still reading through everyone's stories. I wish your husband success with this transplant and hope that it comes as a form of a cure and put an end to he's suffering.

I cannot describe how I feel at the moment. I spent many years feeling as though no one understands or will know what you could be feeling. I'm so glad I found this forum <3

20's Welcome to our lil part of the Healing Well Forum. As the others said, you are expressing wishes that mos young women who are married do. Dealing with chronic life threatening diseases is not easy. Dealing with it at such a young age seems to me to be even tougher. Looking at the positives will help you get through the negatives. Looking at what is going right will help you. As one member said don't let the disease become YOU. Focus on the here and the now and not the what if and what could be. Yes, you have found the right place. We care and will provide information, support, and much more. I was a caretaker for a person who had HCC. Each one of us provides a unique perspective and we help each other over the rough spots as we can.
Hang in there. Keep reading. Information is power. Sandia

20s, sounds good! And yes, we all have our days.

Hugs,
Connie