Posted , 12 users are following.
I have a 6.9 cm focal nodule on my liver and scheduled for surgery in two weeks. Has anyone had surgery for this and can elaborate your experience with surgery and recovery?
0 likes, 26 replies
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amz01 amanda309
Posted
My doctors and specialist seem to think it has no symptoms and is safe to leave there with 6 monthly scans to eatch its growth.
Now i think my symptoms are real and im totaly s**tting myself because of a rupture.. im starting to wonder if they know much about this at all.
At what size is it dangerous?
What is everyones symptoms?
Is it safe to do EVERYTHING AND ANYTHING or do i need to be carefull?
serena1015 amz01
Posted
I just had laparoscopic surgery at the end of January to remove my grapefruit sized FNH, along with my gallbladder and 20% of my liver.
I SERIOUSLY had to research and advocate for myself. I think the research and current practice is totally obsolete, and with how many other sufferers I've seen posting on other forums and sites - this clearly needs to be restudied. FNH, particularly of a significant size, in my opinion and experience, absolutely causes pain. The first doctor I saw was going to leave it in there, and monitor every 6 months (to the tune of $1300 an MRI for me), because "FNH doesn't cause symptoms". The second doctor I saw said he didn't think it was causing symptoms either, but would remove it for me (via open surgery which carries more significant risk and recovery implications).
To be clear, I ruled out every other possible cause of abdominal pain - ulcers, Crohns, scarring, IBS, etc and now have basically maxed out my insurance two years in a row. It seems crazy to me that the obvious culprit of the pain was dismissed. I found out about the tumor during one of the diagnostic MRIs to determine the cause of my abdominal pain. (Side note, I think rupture is much less of a concern with FNH than with hepatocellular carcinomas or adenomas. You can find published medical journals online with good informaiton)
My grandpa has 35+ years of General Practice under his belt, and encouraged me to go straight to a surgeon. I'm so so glad he did. The surgeon was amazing, told me she could do it laparoscopically, and was so informative and affirming. I almost cried when she said "of course it's causing you pain, I get patients who notice it when theirs is much smaller than yours". I felt so vindicated. And she had plenty of experience to draw on.
I had to wait for insurance reasons, and it grew just slightly over the course of 6 months. I have to be honest, the recovery was incredibly painful. Worse than my c-section, especially those first couple days. And it was tough having the lift restriction and not being able to pick up my (heavy) toddler for 6 weeks. You can walk comfortably much sooner than a c-section, though.
But all I have to say is - it's worth it. It was for me. The pain and discomfort and bloating was affecting everything in my life. I had less energy, I didn't want to exercise or overexert myself because it was painful, and I'd sometimes be doubled over with the pain and pressure. Although I'm sure I'm still healing, it has changed my life. The surgeon said the tumor was inflaming and adhering to all the other organs around it. So, how could that not cause symptoms?
Honestly, a big reason why I wanted to get it out is to have more energy for my kid, and there was no way I wanted to get pregnant again with a massive tumor vying for space as well. I don't know if I had it during the first pregnancy, but it was really uncomfortable, and pregnancies can cause it to grow (growth hormones).
I wish you all the best, and please reach out if you have any questions. I'm so glad I listened to my instincts and kept looking for better answers and the right doctor. At the end of the day, they're all human, and can only go off of what research tells them. But you have to listen to your body.
ingleD serena1015
Posted
had it since 08 its 10 cm diameter ... every 6 monthes or so i have digestive or abdominal issues .. could it be the fnh
bree0023 serena1015
Posted
Hi Serena - I'm so glad I came across your reply. I have had upper right abdominal pain going on 2.5 years now. I'm at wits end. The pain has taken over my life and no doctor can give me a definite answer. Like you, I ruled out every possible cause of the pain. My gallbladder was removed, endo/colonoscopy showed no problems, CT scan finally showed a 6cm mass on my liver which they told me was a hemangioma and to go for an MRI to confirm. MRI showed it was not a hemangioma and it's either FNH or adenoma. Radiologist is pretty certain it's an FNH, but they are sending me for another MRI to confirm that. Every doctor keeps telling me this is just an incidental finding and cannot be the cause of my pain which makes me feel like I'm going crazy. I wanted to reach out and see what your symptoms were? I have a CONSTANT pain under my right rib cage. I can press in a specific spot and it takes my breath away because I hit something. Sometimes it's manageable pain and other times it's like a deep burning pain and I need to lay down. It seems to get worse with exercise too. The surgeon told me if they were to take it out they couldn't do laparoscopically which is weird to me if they were able to do yours and it was very large. I just feel so disheartened.
tonya68267 amanda309
Posted
My daughter whom is only 17 diagnosed with fnh a year ago with a mass the size of a softball.her specialist feels no surgery is needed at this time.however where it is located is between her heart and lung.they will not do a needle biopsy do to the location.she gallows up every 6 months to see if has grown in size.she is unable to be on any type of birth control as it will also make it grow.if ahe was to have surgery she would loose half of her liver.😟feeling lost as a parent and sad theirs nothing I can do.
mur06987 tonya68267
Posted
Hi I totally understand how you feel. My daughter is 9 and just was diagnosed with one 7.5cm. Her's is cause alot of pain and I feel so helpless.
larissa61968 amanda309
Posted
mur06987 amanda309
Posted
Hoping people are still active here I just need to vent. My 9 year old daughter was recently diagnosed with an fnh 7.5 x 5.6 ×6.5 cm. I don't know how doctors don't take this more seriously. I am so frustrated watching her cry and scream her self to sleep almost every night and she is in pain almost constantly. Where it is located on the left lobe the doctors are not willing to touch it as it would be a high risk surgery. So she is just on pain medications and I am at my wits end.
ingleD amanda309
Posted
i have a large fnh and i feel i have syptima no one wants to listen to me not even in medical field what where your symptoms!!??
jo-c amanda309
Posted
Has anyone had any luck with easing the pain through lifestyle changes? i sometimes make beetroot juice or green vegetable juices to help support the liver but sometimes they also make the pain more noticeable. I find that the pain is worse as i come up to my period and I assume that this is because of the oestrogen surge. The drs are not keen on surgery here so I'm trying to make adjustments that will help. I try yoga and walking but running or cycling always makes it throb. Any things that have helped you?