The What

So as Megan has updated everyone, she has a rare form of liver cancer called fibrolamellar. It’s found in young women, is slow growing (in Dr. Finn’s words: has a long natural history – Megan has likely had this for years already) but it’s still serious because well, it’s cancer. As for the triplets, it seems that the Tims are definitely masses but if they are directly attached to the liver or free floating is still up in the air. As for Tiffany, it seems like she’s just a really irritated lymph node that’s just hanging out by the pancreas. That’s tricky stuff- it’s very hard to tell from the imaging and makes them hard to surgically remove.

The Why

Again to quote Dr. Finn, “It’s just bad luck”. It’s not genetic, this isn’t the form of liver cancer that you can get from birth control and it’s not because of her diet or lifestyle. It just plain bad luck. Fun.

The How

So when it comes to treatment it’s a bit of a conundrum (again, Dr. Finn’s words). There are big lymph nodes and masses and it’s a rare form of liver cancer. This means that they don’t have a whole lot of research or studies that show a certain treatment course is the proven route. In general when it comes to cancer, treatment is often basically a trial and error sort of process. They play with the amounts, how often, how long, and what type of chemo and check periodically to see if things are working. For Megan, this is a little hard because again, they don’t have a whole lot of info on it. Dr. Finn even said that there’s not a specific type of chemo or radiation that is known for directly combatting this type of cancer. So here’s the plan:

Genetic Testing – They’re going to send Megan’s biopsy out for testing. Considering that they don’t have a go to treatment for this, they’re hoping that by identifying it’s genetic markings they could find a corresponding treatment (a certain type of chemo is most likely) that works for that specific marker and go on from there.

Tumor Board – Dr. Finn and the whole UCLA cancer crew are meeting tomorrow to discuss Megan’s case. As noted in last posts, it has a couple of surgeons, radiologists and several other types of doctors that all weigh in. While they wait on the genetic testing to move forward with medicine, there is the possibility that a surgeon on the board might want to do something called “debulking”. Debulking basically means taking things out. It’s not clear if they would suggest whole pieces of liver, just a mass or two, or what, but that might be a possibility to help with the spread as well as make Megan more comfortable (because the Tims are getting a bit big and it’s not comfortable for Megan to do certain things anymore). Just to note, but kinda relevant, a liver transplant is not something that they are considering, at least not now. There are problem areas around the liver as well, just replacing it doesn’t fix the problem and because Megan is healthy and has a functioning liver it’s not something to consider now.

Just keep doing what we’re doing – Obviously, we feel like we are twiddling our thumbs because we aren’t smart enough to do our own genetic testing and it’s not like we get to sit in on the tumor board (or would even understand anything going on). We asked if we needed to change anything to her diet or daily regimen and Dr. Finn said “don’t try to go on any extreme kind of diet… people have good intentions, but it’s all kind of hokey.” (Haha! This guy’s bed side manner is ridiculous, right?!) She’s had it for this long and it’s not going to rapidly change anytime soon… So I guess we just keep eating healthy, working out regularly and going on with our day to day.

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Several of you have just found out via FB. For those of you who are new to this blog, we’ve made an email for words of encourage, love, anger (towards the cancer obviously), etc. so that we can keep track of responses and that there’s some privacy in things. I’m sure Megan would love to hear from you guys and we’ve got a long road ahead of us, so feel free to save a stamp and send a message instead!