Focal Nodular Hyperplasia, 38 year old male
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The facts:
38 year old male in good health
Caucasian, Western European
6’2/180 pounds
Fit and active
Ex smoker & drinker (quit both 6.5 yrs ago)
No evidence of cirrhosis or fibrosis
No hepatitis
No history of steroid use
No other known risk factors
All blood tests normal
No significant clinical history
Some occasional RUQ and substernal pains of unknown origin.
3.1cm solitary lesion in liver segment 8 discovered 10 weeks ago during unrelated Ultrasound. Assumed to be Hemangioma but sent for CT with contrast. Results excluded hemangioma instead indicating Fibrolamellar Hepatocelluar Carcinoma, or Metastisis. Sent for MRI with contrast, results suggested Focal Nodular Hyperplasia (FNH), Hepatic Adenoma, or Hepatoma. Biopsied last week, results points to FNH.
It’s been a long 10 weeks. We had 6 possibilities, 4 of which were cancer with a very grim prognosis, and 1 was benign but nasty. I appear to have gotten lucky and have the only safe one. However, throughout this journey everyone has observed that the tumour is very atypical. Not just in appearance but I also didn’t fit the demographic for any of the possible diagnoses. Something like 1% of all people have an FNH, of which over 90% are females of childbearing age (possible link to oral contraceptive use) meaning the incidence in males is something like 1/1000. Of those males most are relatively old. So to get one as a 38 year old male the odds are very low indeed. Throughout this journey I was preparing for the worst. The fact is that while I am very health and fit now I wasn’t always and I used to drink and smoke, a lot. Everyone told me that without cirrhosis there’s virtually no chance of it being an HCC (the classic drinkers liver cancer), but I know it still can and does happen.
I also felt like my surgeon was a little cagey about the biopsy results. I expected a black and white diagnosis but he still took my results back the review panel before he would discuss with me, then called me and said there is a strong consensus it is a FNH. I expected something more solid.
I’d much rather have the tumour removed but both surgeons I had been dealing with won’t do it stating there’s no need. So really I’m here to seek some input from others who may have experience or an opinion on my situation. I’m uneasy and I feel like I’ll remain anxious about this indefinitely until it’s removed.
All comments and responses welcome. Thanks in advance.
C
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Posted
This may be a shot in the dark, but I hope your doc's have ruled out hereditary hemochromatosis (HH/genetic iron overload).
HH has been associated with FNH (give it a google) and HH typically starts to become symptomatic in males who have it in their 30s.
Ferritin is a dirt cheap test which should effectively rule out HH. HH is definitely something you do NOT want to miss. It is frequently misdiagnosed for many years and can lead to advanced liver disease if it goes untreated for too long. When found early, it is easy to treat effectively.
Regarding "having it out"... If this is a dangerous neoplasm, it should grow fairly quickly, which should be seen on ultrasound, so it IS important to look at this often (with followup ultrasounds) every 3-6 months for a year or so. A more benign FNH, won't grow at the same rate as a dangerous carcinoma, & probably is best left alone as long as it's behaving itself. A liver resection for a benign tumor is a dangerous risk for something you may be able to live with.
Hope you keep getting good news on this!