Liver disease or cancer? Please help ... - Living with Fatty...

Living with Fatty Liver and NASH
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Liver disease or cancer? Please help 😭 CT & Ultrasound results below

KrissyRawrz
KrissyRawrz

Okay so to cut the long story short, since January I’ve lost 52lbs (I’m a larger woman to begin with but this is obviously a significant drop in weight) and it doesn’t seem to stop falling off me. I honestly believe that I have cancer, but I don’t know where, so my GP sent me for a CT scan of the abdomen, pelvis and thorax as my symptoms are widespread. My main symptoms drastic weight loss, change in stools (yellow/orange colour, floating, diarrhoea), constant nausea, feeling full, fatigue, vague pains on right of abdomen which still feel prominently in the right of my colon rather than higher up, and peripheral neuropathy.. over the past couple of months I’ve developed swollen lymph nodes on the right of my neck including my right supraclavicular lymph node, which I know is not a good sign at all. Before they were visibly enlarged I would often feel burning pain in the lymph nodes in the right of my neck, chest and head. I would get burning from the base of the right of my skull down my neck, shoulder and right arm and nobody believed there was a lymph node issue until they’re now visible. All of my blood liver function tests have always been normal.

The CT scan results are as follows:

Ill-defined heterogenous hypodense area is noted in right hepatic lobe

parenchyma along falciform ligament on series 5 image 19.

Ultrasound/dedicated MRI liver may be considered for further

evaluation. No further focal or diffuse hepatic pathology seen.

Uncomplicated cholelithiasis noted. Intra and extrahepatic biliary

channels are not dilated.

So I was referred for an MRI, but the hospital wanted to do an ultrasound rather than an MRI. I had the ultrasound and these are the results:

US scan of liver Heterogenous lesion seen in right lobe on CT

The liver is normal in size and echogenicity. There is increased

echogenicity noted around the falciform ligament which can be a normal

variant. No focal abnormality seen. The intrahepatic ducts and CBD

are not dilated.

Normal directional flow demonstrated within the portal vein.

The gallbladder is contracted around calculi.

The pancreas is of normal appearance.

The spleen is enlarged and measures 13.3cm.

I see the haematologist on Monday regarding the enlarged right lymph nodes in my neck area and also the enlarged spleen. The gastroenterologist doesn’t want to bother with me and the dr doesn’t want to do an MRI now and I’m highly concerned because I have no idea what on Earth is wrong with me. The right of my brain doesn’t feel right, it’s like the right hand side of my body isn’t the same as the left of my body. I feel really disorientated and the mental state and shoulder and neck pain is worse than the abdominal problems.

Please can someone shed insight, does anyone relate to anything I’ve said? I really need answers and help, I’m really scared. Thank you

7 Replies
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Krissy,

Wish you the best. I had similar symptoms. AFP bloodwork was definitive for HCC with PVTT. Have you had an AFP? My doctors now say everyone with NASH should have AFP.

Good luck.

Wayne

KrissyRawrz
KrissyRawrz in reply to WayCas

I haven’t had AFP that’s the only liver test I don’t believe I have had. I will be seeing the haematologist on Monday and will ask them to test this thank you. I’ve not been told I have NASH is this something that you think I have from my results? I’m really sorry to hear about your diagnosis. Can I ask when you were diagnosed and what treatment you’ve had available? Did your supraclavicular node swell?

WayCas
WayCas in reply to KrissyRawrz

Krissy, I had no supraclavicular swelling. NAFLD and NASH are the new go to words by doctors. Really have to let them decide.

I was diagnosed with Stage 4 HCC in June 2017. So far, a 3 year survivor when originally given 6 months. Treatment has been Y90 radiation, Nexavar chemo and Opdivo immunotherapy for 53 treatments.

Not an easy road but here I am.

Wish you the best. Don't hesitate to ask questions. You are your best advocate. Let me know how it goes.

Wayne

KrissyRawrz
KrissyRawrz in reply to WayCas

Thank you so much I really appreciate that. Can I ask did you have neuropathy and how long it took for you to get a diagnosis? The doctors don’t want to investigate my liver further as the ultrasound said the liver seems okay and they’ve turned their attention to my spleen. But if there’s an issue with my liver then my spleen would be enlarged. Im really unhappy with a CT showing a mass and then an ultrasound not. I’m honestly petrified. I’m only 28 and have 2 very young children 😭

You’re an inspiration honestly. That’s amazing and I’m so pleased for you. You’re obviously a very strong man. I will make sure that the haematologist does an AFP blood test, is there any others I should push for?

WayCas
WayCas in reply to KrissyRawrz

Krissy, all of this is very scary. Mine was in such late stages that diagnosis was easy almost too late. A very silent disease. Whatever you have will be caught early. My neuropathy was diabetes but who knows. Stay strong, hug those kids and keep the faith.

Wayne

Hellp Krissy. I'm new to my diagnosis of NASH. All I had was an ultrasound. I wish I could get further medical help but I was waved off with an instruction of losing weight and changing my diet. The go to it seems for Liver disease. I have not felt very well. Everyday I never know how I am gonna wake up. Some days I am nauseous all day, others I am so fatigued I feel I could fall asleep standing up. I have a pain in my left hand side that the doctor said is likely scar tissue on just pushing on it....scar tissue from what...who knows...but even though it gets worse my dr is unwilling to refer me to a specialist until my next blood work in August. I am unable to get a fibroscan or biopsy even though I've pleaded so that I can know where I am. I'm also young ish. 37....I have a 6 year old daughter who tells me all the time how she could never live without me. During this period of the last 2 months I have suffered severely with fear, panic attacks, and constant worry that there is more second with me than just my liver. My stool has also turned yellow, I feel my heart beating in my chest all the time. I am so anxious and I can really relate to how you must be feeling. Wanting to know what is going on and wanting to understand everything that is happening to your body and the inside. My post is not written to provide any advice as I dont have any unfortunatley. I myself am seeking advice constantly as I feel so alone in this. I just want you to know that you are not alone. I am also scared and I have always been known as the Viking amongst my friends and family. The tough guy. The one who can take anything but for the first time in my life I have felt fear that I have never felt before. All consuming fear that I might not be around to see my daughter grow up. I am fighting as hard as I can to try overcome this as I am sure you will too. Hopefully your appointments coming up will shed more light and give you more answers. For what is in your control though, try to find your centre. A way to find the positivity you are going to need to have the right frame of mind for your fight. If you win the battle with your mind you will give yourself a better chance of winning the battle with your body. Good luck Krissy. I wish you all best.

Krissy. Just checking to see how you are doing.

Wayne

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