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?
Hi amanda, an FNH is benign i.e not cancer. Is there a reason why you are having an operation to remove the nodule rather than leaving it?
I had a cancerous tumour removed by laparoscopic surgery which meant i was up and about in 12 hours and out of hospital in 4 days. Recovery at home took a while as i was sore and tired and i was off work for about 2-3 months i think.
It's a huge one. 3 inches. They are worried it would rupture if I ever experienced trauma (car accident, etc). I can also feel it and it causes pain. I just had my non functioning gallbladder removed last month. It's possible it was pressing on it and caused it to fail. Thankfully I don't need liver resectioning as it actually hangs off like a berry, a baseball size berry. I have to have it embolized first. It sounds like an easy procedure and having had laparoscopic surgery last month I know somewhat what I'm in for. I guess I'm just nervous as it's my liver.
Hola, acabo de encontrar tu hilo y me preguntaba si ya te habías sometido a la cirugía. Tengo programada una cirugía para eliminar un tumor de 5,4 cm que creen que es un adenoma o FNH. También quiero asegurame de que no sea maligno, aunque creen que probablemente no lo es. Es como el tuyo, colgando de un tallo, que creo que llaman pediculado. Afortunadamente solo tendrán que extraer media pulgada de mi hígado con él. Sin embargo, nunca me he sometido a una cirugía antes y no estoy seguro de qué esperar. Está en mi lóbulo izquierdo y la cirugía será laparoscópica. Cualquier información o consejos que puedas proporcionar serían muy apreciados. Muchas gracias y espero que estés bien.
Disculpa por los errores en mi publicación anterior que hacen que parte de ella sea ilegible LOL. Estaba usando el micrófono de mi teléfono y olvidé revisar si malinterpretó mis palabras antes de publicar.
Don't do surgery just yet!! First mine was confirmed fnh through biopsy. It was a tiny 18mm needle (like a long needle but the size they use to pierce your ears) and they used imaging to guide the needle. I had to stay in the hospital I think 4 hours after to make sure there wasn't any internal bleeding. Took the bandage off and could barely see it, that's how small the biopsy was! Okay so FNH confirmed and surgeon wanted to cut out! DO NOT DO THIS! Your liver can easily bleed out, it's dangerous, and you'll be in the hospital for at least a week due to the high risk factor of bleeding and infection. Anyways, my surgeon wanted me to get it embolized before surgery to minimize risk of bleeding. This is where they basically thread this tiny instrument up your artery from your groin area to your liver (image scan guided) and release a material that blocks the artery to the tumor. Search Heptic Embolization. I did a lot of research and found that they actually just use embolization as a way of treatment WITHOUT surgery. I had three arteries going into my tumor! I had another MRI done after 11 weeks and it shrunk 80%! This is a perfectly normal size as they usually do not even operate on FNH unless you are symptomatic and mine was hurting as it was the size of a baseball. So basically your surgeon should require (if competent) embolization before surgery, but embolization alone can be a means of reduction. There are serious risks with surgery. Hospitalized for a week and high risk of bleeding out and infection. The embolization had drawbacks too. Basically your starving the tumor to death and when they are large tumors that is a lot of toxins! Wow! I felt a stabbing pain, was vomiting, and running a fever for nearly a week. I just kept taking my pain pills, drank liver detox tea, and took epsom salt baths to help flush toxins. PLEASE get a biopsy, it's such a small procedure! If it's FNH research heptic embolization and also liver resection (surgery). The embolization was horrible but risk was low and recovery faster, and if you have surgery you'll have embolization anyways unless your doctor wants you to bleed out! Hope I'm making sense, so tired but passionate against surgery unless absolutely needed!
Also my surgeon made surgery sound like such a simple procedure! After reading about it I went and got 2 more opinions and the other two doctors agreed embolization was all that was needed and said the surgery was so dangerous that they would have to send me to a special surgeon two hours away and the surgeon scheduled for my surgery did not have the experience with this surgery! Only one hospital in the state could do it (and we have many).
¡Gracias por la información! El problema con el mío es que es tan atípico que no pueden determinar si realmente es FNH o un adenoma. Tienden más a pensar que es un adenoma. Y un adenoma tiene un alto riesgo de ruptura, especialmente si es mayor de 5 cm, como es el caso del mío. Por eso quieren extirparlo antes de que tenga un accidente de coche o algo así y tenga un sangrado abdominal que el servicio de urgencias no sepa por qué ocurre, lo que podría causar un gran problema (además, no están seguros al 100% de que no sea maligno, ya que, de nuevo, es atípico en todo). Además, si no se extirpa un adenoma y se intenta reducirlo, aparentemente existe la posibilidad de que se vuelva maligno más adelante frente a la extirpación y no tener ninguna posibilidad de eso. No sé qué pensar. En cuanto a mi cirujano, vivo justo fuera de Atlanta, Georgia, y hay un centro de trasplante de hígado en Atlanta donde trabaja mi cirujano. Es un especialista en hígado y realiza este tipo de cirugías con frecuencia; dice que solo va a extirpar una sección de media pulgada del hígado donde se encuentra el tallo y que lo va a hacer de forma laparoscópica, por lo que debería estar en el hospital uno o dos días como máximo. No sé muy bien qué pensar, ya que leí en algún sitio que una biopsia supuestamente no es una buena idea para un adenoma, ya que puede causar sangrado, pero de nuevo no sabemos muy bien qué es. Además, no he leído sobre la embolización; tendré que informarme al respecto. ¡Gracias de nuevo por la información!
If it's Adenoma then you probably want surgery. I'm glad you have a good surgeon who knows what he's doing and specializes in liver. I had a CT scan, MRI, and biopsy to confirm FNH. There is risk with anything you do whether biopsy or surgery. Do some research and trust your gut what is best for you.
Hice un escáner CT por otra cosa que encontró la masa, luego una ecografía que no pudo determinar qué era, luego una resonancia magnética que llevó al escenario de "o esto o lo otro". Supongo que no quería hacer una biopsia por si realmente era un adenoma, así que simplemente optó por la cirugía. Soy extremadamente afortunado de tener un centro de trasplante de hígado cerca. Creo que, según todo lo que he leído, si no tuviera un especialista como él para hacerlo, definitivamente no me sometería a la cirugía debido al riesgo. Muchas gracias por compartir su información conmigo.
Solo quería actualizar este hilo por si alguien lo encontraba y necesitaba la información. Tuve la cirugía laparoscópica y resultó ser mucho más fácil de lo esperado. Mi tumor era pediculado, lo que significa que colgaba del hígado. Por lo tanto, solo tuvieron que quitar medio centímetro del hígado para eliminarlo. Estaba en un buen lugar, aparentemente, por lo que también terminaron haciendo solo dos pequeñas incisiones en lugar de tres, lo que hizo un total de tres cuando se cuenta la más grande por la que retiraron el tumor. Permanecí una noche en el hospital y fui dada de alta a mediodía del día siguiente. Solo tuve dolor los primeros días y pude dejar la Oxicodona después de eso. El gas que usaron durante la cirugía fue molesto cuando intentaba salir. Te hacía eructar y luego expulsar gases, y a medida que avanzaba hacia arriba y hacia afuera, a veces te restringía un poco en la cavidad torácica y a veces incluso causaba un dolor de hombro extraño. El resto de la primera semana, tomé Tylenol extra fuerte según lo indicado por mi médico para la inflamación y cualquier dolor restante posible. La segunda semana solo lo tomé cuando pensé que quizás me había excedido un poco y anticipé alguna inflamación. Pero en realidad, después de la primera semana, estuvo bien. De todos modos, resultó que el tumor era FNH en lugar de adenoma, pero no me arrepiento de haber tenido la cirugía porque no podían decir nada de las pruebas debido a su ubicación y, por lo tanto, ni siquiera estaban seguros de si era no canceroso. Al menos ahora sabemos que no es cáncer y no hay nada en mi cuerpo que me preocupe constantemente que pueda reventar o volverse canceroso. Tuve un excelente especialista en hígado y, en general, toda la experiencia fue buena considerando.
So glad to hear it went well! I'm glad you had a great liver surgeon!
Thank you for posting an update! I have a large FNH (8x10cm) that was found during an MRI looking for the source of abdominal pain I've had for a year and a half. I know Doctors are reluctant to remove FNHs, but they've ruled out any other possible cause of my abdominal pain through extensive testing, and I can't imagine this huge mass isn't the the cause. Just met with a surgeon Monday and he said he doesn't do laparoscopic surgery, so the recovery would be tremendous with an open surgery - in addition to greater risk of infection. Plus, I have a young toddler I need to look after, so laparoscopy sounds much better! I'm wondering if you had any pain/symptoms before from the FNH and if they've subsided since the surgery? I have daily abdominal pain, so I'm really motivated to find a solution, though not keen on open surgery.
Sorry, meant to reply to this comment! Thank you for posting an update! I have a large FNH (8x10cm) that was found during an MRI looking for the source of abdominal pain I've had for a year and a half. I know Doctors are reluctant to remove FNHs, but they've ruled out any other possible cause of my abdominal pain through extensive testing, and I can't imagine this huge mass isn't the the cause. Just met with a surgeon Monday and he said he doesn't do laparoscopic surgery, so the recovery would be tremendous with an open surgery - in addition to greater risk of infection. Plus, I have a young toddler I need to look after, so laparoscopy sounds much better! I'm wondering if you had any pain/symptoms before from the FNH and if they've subsided since the surgery? I have daily abdominal pain, so I'm really motivated to find a solution, though not keen on open surgery.
No tuve dolor abdominal ni otros síntomas ni antes ni después. Supongo que todo depende de dónde esté en tu cuerpo.
No mencioné en mi publicación que si puedes hacerlo de forma laparoscópica, definitivamente hazlo. Por lo que escucho, el procedimiento abierto es mucho más difícil. Intentaría encontrar un cirujano/especialista que realice laparoscopia.
You can have open surgery to remove, or you can have it embolized. Mine was large and felt like a baseball stuck in my side. With embolization they thread a line up your artery and block the arteries supplying blood causing the tumor to die off. I had 3 arteries feeding mine. A Radiologist would preform this procedure. BUT, just a warning, since most doctors don’t normally operate on FNH they don’t know the after affects. I was terribly sick for a month from all the toxins being released into my body as it died. Ran a fever for weeks even though I took detox baths and drank detox tea and everything to help rid toxins. In the end, mine shrank 75% and pain free. It definitely was better than open surgery, but realize the toxins of it dying will make you sick if you just do embolization. Get a few opinions from different doctors.
Hello. I have just been diognosid with a FNH myself.
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?
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.
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.