I apologize in advance for a long post....I need to spell it all out for my sanity and with the hopes that anyone has any insight-especially on such a rare form of cancer.
My 20yo step-son T's cancer has returned. The first go round was a whirlwind. We did not know he had cancer until after the resection. His surgeon matter-of-fact told us he had a tumor, it was not cancerous, he was going to remove the tumor, and after a month or so of recovery, he'd lead a normal life. HA--- That world reknowed surgeon can still kiss my @ss (I'm still angry if it wasn't clear!).
Anyway- we found out he had a tumor on his liver in Feb 2007- he was elbowed playing basket ball and became sick so we took him to the hospital where they scanned his abdomen to make sure he hadn't perforated his intestins. Good news- intestines were fine and likely just bruised. Bad news- he has a liver mass. We live in a rural area, and the local surgeon was not confortable with the possible complications of a liver surgery (even if it was in the lower left lobe)--so he forwarded us to this top notch surgeon at UCSF-- We waited for him to go on his vacation and for T to finish his semester at college. He had his surgery in May '07. It was deemed a success, but they admited that once they saw the mass, they suspected cancer and that the "quick-test" was positive for cancer--followed by--quick tests have a lot of false positives! 5days later we were informed it was Fibrolamellar Carcinoma and we were immediately forwarded to pediatric oncology.
His THREE pediatric oncologists admitted it's a rare form of cancer and that they didn't know very much about it....they presented the case to an interdisciplinary cancer intervention team and after verifying that he was tumor/cancer free that he would get scanned every three months. We were in a wait an see mode, but he was technically in remission.
I searched the internet for as much info as possible....but found very little and being that he was in remission- I admit we sort of just got on to living life and not thinking of the cancer anymore (except for a few days before his scans). No one told us there is an over 50% Recurrence rate within 1year! Doctors never want to tell it to you straight! They seem to want to gloss it over for you...and tell you to be realistic---but THEY are the one's that gloss it over in the first place! argh!
So he had one of his 3month scans last monday- they called on Tuesday to say they saw 5-6 nodes in the remainng part of the left lobe and they wanted more scans on Wednesday to present to the cancer team. YIKES!!! Only 10months after the resection. Now we're on full alert and life has stopped and become a whirlwind all over again. So much for the resection being a cure (I know now how unrealistic thinking cure was!)
The pediatric team met on Thursday and on Thursday night we were told that they are confident that the tumors are only in the liver, but that they wanted to present T's case to the Adult cancer intervention team because T is in the medical transition to adulthood and also that they would have more experience with this type of cancer (oh...so WHY did they not consult with them last year????????????). Anyway- They met on Monday.We were updated monday night and instantly have a new surgeon, and an interventional radiologist.
The plan- Chemoembolization (probably next week). It will be preceded by putting a dye in the catheter to verify that all the nodes are located in the left lobe only. In a month- A resection of the remaining left lobe.
This new surgeon has been wonderful so far. He has been very open to our questions (unlinke the last surgeon). He called last night at 7pm after his full day just to talk to us and explain the procedures, the risks, the alternatives, etc. He even gave us his email and told us to use it! He is also a top liver surgeon--but does not have the high and mighty attitude- and that is very refreshing.
I've been doing MUCH more research, and successfully finding much more information than last time (that's relative of course, as I have to parse the information between Hepatocellular Carcinoma (HCC) and the fibrolamellar form (FLC). The most daunting recurring theme is that life expentancy of this cancer is 3-13 years. It's basically a keep ahead of the cancer battle. Find the tumor, cut it out if possible- else chemo which has had limited success, live life getting regularly scanned to find the next tumor early enough to hopefully operate on that..... There's no guarantee that if he could get on a liver transplant list that he still wouldn't get more tumors! That's to deal with possibly in the future.
so that's the basics of what I know.
Anyone here with FLC?
Anyone here have experience with Chemo-embo?
T has the attitude of "tell me how to fix it, fix it, and let's get on with life! He doesn't want to talk about it, research it. I think this is a good thing in the sense that his attitude is positive---but we worry that he's keeping it all in... any suggestions? I'm communicating with him what I find out, doing a lot by email so he can ignore it if he wishes. I've told him I'll respect whatever boundaries he sets- it's up to him.
Sandra, I am so very sorry about your step-son's FHC. I have never heard of this type of cancer, but then there are many cancers with which I am not familiar. I am also not too sure anyone on this forum has ever had any personal experience with this cancer. But we still can help you do some research and give you support.
I can understand your anger and frustration at your current medical team. I would recommend that you go to a major medical center but UCSF is one. You might want to call other centers and find out if there is one that is doing any specific work with FHC. Sometimes, one medical center will have research in a specific area of cancer. You would not necessarily look for one doing research with FHC. You would look for one that specializes in hepatic cancers.
You and your step-son are in my thoughts and prayers.
Re: Fibrolamellar Hepatocellular Carcinoma- it's back
Thank you brainman-
We're pleased with the cancer teams over all...as usual it's really a few doctors and it seems to be the one's with either the don't question my judgement attitude or the ones that never have the time- not even 5min. to break-down what they're going to do for you. Additionally there's the same issue with their assistants- they're good ones, bad ones, and ones that seem to be helping you and all of a sudden you realize they just look like they're helping.
The current surgeon who will be performing the resection has been great. Gave me his email and said USE IT. Any questions- just email. He's been very responsive. I also did some research on him and he's one of the best in the country. He has a new assistant- she's learning fast. Best thing is that when she's not sure- she tells me and then calls me back with the answer!!!
Today we found out that on top of the Chemo embo not being done for another 2weeks, we won't be meeting the doctor beforehand, AND it might not be done by the original Dr. that we were forwarded to but one of his colleagues. Can't find nearly as much info on this new doctor. All I get to talk to are assistants and "schedulers" who just don't understand the time is of the essence with this cancer. As a matter of fact, the asst. didn't want to send me to the scheduler right away because the Dr. was gone for a couple days. I had to call back and say the resection is scheduled---I MUST have the chemo-embo scheduled ASAP! (time is so of the essence, that the resection surgeon booked the O.R. himself while I was on the phone with him, and he said he'd keep checking the schedule to see if anyone canceled a surgery so we could move it up....not an assistant...be THE SURGEON did it himself)--Now the option of moving up the resection is not possible, because there has to be at least two weeks between the procedures.
So we kindly emailed the resection surgeon and the original chemo embo surgeon and T's original Cancer Team Lead and laid it all out. We're happy with the resection Dr., communications and explanations have been great. We're not happy with the progress of Chemo-embo, we realized there's only so much space, but that assistants seem to be changing the "plan" - both changing doctors and timing....The plan was decided upon by a TEAM of doctors and we trusted the TEAM's decision. We wanted to make sure the doctors were all on the same page.
We went over the email several times before actually sending it. Making sure we also thanked them for what they've already done. We stressed that we were very uneasy with the way it was going and that we wanted reassurance. We just hope we didn't piss anyone off---don't want to piss off a doctor that's going to be doing life altering procedures on your son!
Well- thanks for letting me vent.
Any suggestions on how to deal with my son not wanting to find out more about his cancer? Do I keep it status quo and let him ask when he's ready? Do I push a little, and give him what I got?
Re: Fibrolamellar Hepatocellular Carcinoma- it's back
THAT WAS A QUICK RESPONSE!!!!
The original doctor just called me back (I'd say within 1hr of emailing)--He appoligized for his staff--saying they gave me the "standard line" they give all their regular patients. They are told that all the doctors are a team.
Anyway- he assured me that HE was going to do the procedure. That if I had any questions at all to contact him. If we want to meet with him or have a conference call with the whole family- we just needed to tell him when and he would make it happen. WOW! He answered a couple questions on the spot and reassured me that he's been speaking to the other doctor and they're on the same page. They discussed the timeline and decided it was fine as is.
The relief is unbelievable- I bet the phone call was less than 5minutes!
I too am a step-mom whose daughter was diagnosed with Fibrolamellar Hepatocellular Carcinoma last Oct. She had a liver resection in Nov and is scheduled to go back for her 1st post-operative scan in early March.
Although her doctors, both here and in Houston, have been great about moving heaven and earth to get her treatment and about answering any/all questions asked, she is also in the same place as your son - assuming cured by surgery, doesn't want to think/talk about it otherwise. I would love to share stories, support off-line, if you are interested and willing. Being the stepmother puts one in a very different, and difficult, role - act like a mother/parent but not the mother.
I look forward to hearing from you soon (and anyone else who can share info/hope)!