Liver cancer- Complicated Scenario

kmac20 · Guest

My father about 10-12 months ago was diagnosed with liver cancer. Originally they thought it was colon cancer due to his mother having died from that, but when they checked it turned out to be liver cancer. not surprising, it was mostly from cirrhosis. in addition, at roughly the same time he was diagnosed with type 1 diabetes, and hemochromatosis (which is an "Iron accumulation which can eventually cause end organ damage, most importantly in the pancreas manifesting as diabetes, and liver failure").

needless to say, there were many complications of this scenario. however, it was thought to be somewhat fightable due to the fact that the tumors (3) were all fairly small. after several rounds of TACE, which did in fact help a great bit to halt the tumors and even shrink some, he received a new liver about 4 weeks ago. needless to say, we were thrilled with how quickly this happened, and how his prognosis was looking extremely good. he had been given a high priority for transplantation due to the fact that it had looked like it was non invasive or metastatic tumors, he quit drinking (has been sober since) and that he is in otherwise good health.

after the transplantation, they biopsied the old liver, and today he went to the oncologist. it turned out that one of the tumors was in fact invasive and his outlook is now not so good once again. they believe that one of the tumors had in fact spread from elsewhere, whereas the other ones were just HCC from drinking and were not invasive by themselves (or at all, i'm not sure).

there are two sides to this coin: on one side, if they had discovered this earlier, he would have never in a million years received a liver transplant, due to the high re-occurence rates of what he has now. so its good that that organ was healed and there is no old, barely working cirrhosed liver inside of him. he even visibly looks better since the transplantation. however, i know the other side of the coin: because now he is on anti rejection drugs, he is immuno-compromised and as a result his chances of survival if the cancer returns is not good. he now will have to get chemo (not TACE i believe, but a different type) once a week for 3 weeks, then break one week, then 3 weeks again and another break, in that manner.

we have used the best doctors around (Columbian Presbyterian hospital in NYC) for both diagnosis, oncology and the actual surgery. they have been great and thought that everything was going well. now this curveball hits us. Today we learned about this and my parents told me that the oncologist herself has extremely little data for this situation: effects of the invasive cancer AFTER liver transplantation, since this usually is an absolute reason that one does NOT receive a liver transplantation . while there was no other cancers found outside the liver as far as they knew (months of CT scans and MRIs), they know that there is a very real possibility it can return. Does anyone have any ideas or advice for me and my family? as i said, this is an extremely rare, if not unique situation that we're hoping works out well. any help, advice, or even comfort would be great

Muttsmom

Did they do a PET Scan to see where the primary cancer was?
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

kmac20 · Guest

as far as they have seen from scans and what not, the only cancers that were in his body were in his liver. there is no other cancer in his body. but they believe that cells may still be in or around the liver area.

kmac20 · Guest

We thought that we had this beat. a man who ruined his liver was given another chance. the odds were extremely rare that he would end up with the cancers they thought he had, and the prognosis was extremely good as a result. i guess we thought too optimistically and believed (and hoped) that they were 100% right in their diagnosis. i mean the odds of 2 ( i said 3 earlier, it was actually 2) tumors in the liver that were non evasive and caught early even through drinking his life (A NOTE: HE NEVER DRANK HARD LIQUOR! ONLY BEER! so if you think you're all good because you don't touch the hard stuff think hard again). and now this just slap to the face. its surreal. after all that hard work and time and everything into a cancer that has bad survival rates...

he cant go back now. just on top of things, i myself would not let him give up and stop chemo. thinking of the person that liver could have gone to instead, someone who wouldn't have had this complicated situation. its terrible thinking it shouldn't have gone to my father now, but realistically who would give a new liver to a person with recurring liver cancer? no one, thats why there is no data on it. its just hard having to deal with it all once again even after all this.

we were luck though. our insurance was INCREDIBLE. its a weird thought to me, that some people wouldn't have been able to even get a liver transplant even if they were in a better spot than my dad. my mom as a teacher for NY state, has simply amazing benefits. looking at the medical bills, the treatment and surgery should have cost about 1 million dollars+. and we paid barely any of that. i'm just realizing this now, and my heart is with those without money in a better situation than us.

i know this may seem like rambling and sorry, but i just need to get all of this off my chest really. thanks to anyone who reads all my posts

Muttsmom

Vent any time you need to. I'm sure you have a lot of emotions going on at the same time. A dx of cancer is hard enough, and add other situations going on at the same time and other obstacles, it's mind boggling.

One of my neighbors is 40 and she drinks about a case of beer a day. Her liver enzymes have been messed up for several years, but she blames everything except the drinking. I don't drink at all and haven't since my early 20's and that was very little, so I can't understand, but I did use to smoke and quitting was So hard, even though I wanted to so bad. I'm happy that your dad was able to quit drinking after his dx and transplant. I hope he's able to go to meetings or get support. He's got a lot of fighting to do. I only now about liver mets from friends, but I know that I had Invasive breast cancer with a large tumor and a lot of nodes positive, and I'm doing great. I hope your dad does the same !!!!
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

Keizer · Regular Joined: 23 Jul 2007 Posts: 11

[quote="kmac20"]NOTE: HE NEVER DRANK HARD LIQUOR! ONLY BEER! so if you think you're all good because you don't touch the hard stuff think hard again). [/quote]

You think that is bad, My wife has bile duct cancer, and has never drank any kind of alcohol ever. Her last tumor developed outside the liver, so she was denied any type of liver transplant. I have a hard time with the fact that some people deliberately destroy their organs, and then want doctors to fix it when things go bad. Your dad got a transplant even though he destroyed his liver. My wife can't get one, even though she took incredible care of herself all these years. I can't sympathize with your situation. Good luck is all I will say.

azzurigirl · New User Joined: 17 Oct 2007 Posts: 2

Hi Kmac20,

My father too has gone through many of the same things your father has. However my father developped Hep C through an operation he received many years ago, which developped into Cirrhosis about 10 years ago. As soon as he found out, he stopped drinking (he didn't drink much to begin with) and hasn't touched a drop of alcohol since. Even with regular checkups and blood tests, the cirrhosis turned into Liver Cancer. In 2002, he had a liver resection done as the tumors were contained to one part of the liver. We had all reasons to believe that everything was fine and continued on in life. A couple of years ago, we found out that the cancer was back with a vengance. Another resection was out of the question because the cancer was throughout his whole liver, but a transplant was a great option.

They put him on the transplant list (We live in Canada) and we waited and waited. Finally the doctors suggested that we do chemo to keep the tumors as they were or else they wouldn't be able to do the transplant. They started chemo on March 7th, 2006. On April 30th they called saying that they had a liver for him, he was rushed to the hospital only to be disappointed because they realized that since he had done the chemo, he was no longer a candidate for the transplant until a couple of months had gone by. This was heart breaking for all of us.

We kept waiting, hoping that another liver would come soon, seeing as how he seemed to be close to the top of the list. Well the months kept on going and he started going downhill. At the beginning of November, my mother requested that they do another CT Scan, as something didn't seem right with my father. The doctors warned us, if the cancer had spread they would have to take him off the list. We decided to go ahead with it because we wanted to help him. 3 days before we were supposed to have the CT Scan, the hospital called, they had a liver. Again he was rushed down and this time it was a go. After the transplant, the doctors came and talked to us and told us that we were right, the cancer had started to spread, it was around his diaphragm, but they removed a piece of it and hoped that they had gotten it all.

6 months (May 2007) went by and my dad was finally starting to go back to normal, he was feeling so much better and then on one of his routine CT scans, they told us that the cancer had spread and it was in his diaphragm again. The doctor and hospital visits started again and before we knew it, 3 more months had gone by (August 07) and another scan was done and we were told that the cancer was full blown. It was in his lungs, diaphragm and even had gone back to his liver - this was the hardest part to digest, it just didn't seem fair. The doctors finally told us last month that he had approx. 6 months to live, but my dad is a fighter and won't give up until the end.

He is still with us and it's been about 1.5 months since we got the 6 month notice and we're starting to notice changes. My father is tired more often (although he's 68 years old), his feet and lower legs are extremely swollen due to the water retention that he's experiencing, but he opted not to do chemo. After the information that he got from the drs. who told him that chemo would only prolong the inevitable and he would feel very sick from the chemo, he felt that he would rather have a good quality of life for his remaining time and enjoy his family and his new first grandchild.

Spend as much time as you can with your father, cherish him and enjoy him, because unfortunately we don't know how long they are going to be around. I wish I had more information, for both you and me, but as you said there is not much out there.

M

Muttsmom

I can't sympathize with your situation.

I understand your bitterness towards cancer, but it's not her fault that her dad is an alcoholic. I've never been a drinker, and I took care of myself. I ended up with Stage III breast cancer. NO ONE and I mean NO ONE deserves to get cancer and since I've been through it, I can sympathize with her. It's her dad no matter what he did to his body.
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

azzurigirl · New User Joined: 17 Oct 2007 Posts: 2

Muttsmom, were you talking to me?

In know way did I imply that because her dad drank that he deserved anything that he's going through, I just felt like the situations were similar and expressed my feelings. I feel sorry for Kmac and her family.

kmac20 · Guest

just off the bat, i'm a he not a she. as in male, not female, guy dude, etc. i don't really know why everyone thought i was a girl. unless i had a typo or something then my bad.

keizer, you think its harder for you? imagine being me, 16 years old and my dad was an alcoholic for the past 15 years. wow i guess we should trade situations, its not like that didn't fuck up the rest of our family emotionally and mentally as it is. at least you had each other. my whole childhood was basically fucked up. i don't even wanna type the shit i went through, it would probably take years.

do you think that i don't think about that? why my dad was able to get a liver even though he drank? i already mentioned that in one of my prior posts, and feel bad enough as it is. i have mixed emotions on the whole thing, as to whether to feel joy that my dad got a new organ even though its possible it won't help, or whether to feel badly that someone like your wife didn't get it. wow i didn't realize that my dad was destroying his own body, youre the first one to point it out to me. i can only imagine the thoughts in my dads head about the situation, i don't believe he would honestly take a liver over giving it to someone like a child who did nothing wrong to themselves, or someone like your wife (although i think differently about you for that cold ass comment you left, and just know that if you ever get sick, that was probably karma biting you yourself on the ass for such a nasty ass remark).

i never said i thought it was terrible that he got liver cancer from drinking beer, on the complete contrary, i was fully expecting something like this at some point in my life. perhaps not as soon as it happened, but at some point it was logical to assume liver failure and possible cancer.

but wow what a kind hearted thing to say on a forum where people look for support. thank you. i send my best to your wife and family, as for you, i'm leaving you noticeably absent.

have some forethought about what you say. if you dont have anything nice to say, shut the fuck up, unless you're putting someone in their place for doing just that (i.e. you).

EDIT:
And just for the record, your story was one of the ones i read before even signing up to this forum, thinking people are going through a similarly bad situation and were looking for support and ways to cope. way to completely shatter any respect i had for you as a decent person. you're lucky you have your wife, not the other way around.

for all you know you could've ended up in the exact same boat if your wifes cancer had come back after a transplant. i don't see you picking on any of the other hundreds of people on this forum who know someone who drank and ended up with liver cancer, or anyone for that matter.

Muttsmom

Muttsmom, were you talking to me?

In know way did I imply that because her dad drank that he deserved anything that he's going through, I just felt like the situations were similar and expressed my feelings. I feel sorry for Kmac and her family

No, I was talking about Keizer's post that said he didn't sympathize with the poster who's dad has liver cancer and was an alcoholic. No one deserves cancer. If someone smokes, it's an addiction and quitting isn't easy, and they don't deserve lung cancer. My point was that no one deserves this disease and saying they didn't sympathize with the poster to me was cruel. A father is always a father, and just because he had an addiction, that I'm sure made the family life rough, doesn't mean they still don't love their father.
_________________
Nancy
2/14/02 ILC 43 - 5.5 cm 9+/16 nodes
Stage IIIA er/pr+ Her2-
2/02 MRM
FECx6 radsx33
Tamoxifen - Arimidex (chemo induced menopause)
4/03 SM w/bilat. recon.
9/03 expanders removed
5/04 repair reconst. disaster
10/04 Actonel for bone/joint pain from Arimidex
NED - 5 years
3/07 Diabetes
In memory of Kim 12/1/04

brainman

Guys and Galls, take a deep breath and count to 10. I sense that feelings are getting hurt and I would hate for this to continue. Maybe a cool down period is a good idea??

Thanks.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

kmac20 · Guest

my feelings werent hurt anymore than they already are. i just feel like someone who talks like that deserves to be told how ashamed they should be of what they said.

and i'm still curious as to why everyone thought i was a woman. and still as i see, muttsmom still refers to me as female lol. i'm definitely not angry about that just curious.

hes an emotional parasite. he came on a forum where people are supposed to help and support each other, asks only about his situation and what HE needs, doesn't give 1 bit of advice to anyone else, and the one post he had on a topic about anything but his own situation was a nasty, cruel, morally repugnant attack. its funny, he has 10 posts, 9 are about his topic, asking people for their input to help him, the other 1 is here; which pisses me off even more because people have posted on his pages about drinking and cancer and he didn't say one thing. i have 8 posts and 4 are what i believe to be supportive comments and insights into other peoples situations.

i hope his wife gets better, i truly and honestly do. but i hope he remembers what he said and that karma will come back to him. and just for the record, my dads bad karma for drinking came back and bit him in the form of liver cancer. don't think i don't know how stuff works buddy, i may be 16, but i might as well have lived 160 years.

and this is off topic but let me give you just one tiny tiny nugget of insight into events in my life, and what might have fueled my dads alcoholism; i am not saying that it wasn't around well before this, but this in my opinion did not help in any way shape or form, and probably accelerated him down the path he is now on: he used to work in the very top floor of the North Twin Tower World Trade Center building. he survived the 1993 bombing, and received a plaque for helping tourists off the observation deck during it. he got laid off literally less than 6 months prior to the 9/11 terrorist attacks, and on that day many of his closest friends died, one of whom he probably considered just as much of a son as he does me. as if he didn't have enough survivors guilt, hes got the whole drinking new liver issue now, that i've already mentioned i feel for him and am fully aware of: that why should he end up with a new liver when he destroyed his own. maybe helping those people was the karma he needed to end up with this. i am in no way saying that everyone who does a bad thing should end up sick and dying, but i am saying that nasty people like yourself will get what they have coming.

i really hope your wife makes. and i still am giving her my best

brainman

kmac20, I don't have an answer to your question... maybe for the same reason the I refer to people that do not make it clear if they are male or female as "he". Sexist, I know, but it is just a habit Very Happy

.

Everyone on the Cancer Forums has experienced a lot of pain in their lives or we would not be here. I certainly hope that no one is intentionally flaming others Sad

. I tend to be a peacemaker. My heart goes out to each of you who have posted to this thread.

kmac30, you have certainly suffered a lot in the 16 years of your life.

Keizer, you too have lost a lot. Even though your wife is still living, all the hopes and dreams of growing old together are gone, I would imagine.

Azzurigirl, I am so sorry about your father’s poor prognosis… and yet you are here sharing your story with others.

Nancy, what can I say? You have been through so much pain in your life. I am glade to have you as a friend.

I am thinking about and praying for each of you tonight.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

kmac20 · Guest

i'm sorry if you think i'm flaming (especially after my last edit) but his comment, while not hurtful, really hit me in the right way: he really said some nasty stuff and if he says that online to someone whos father is in just as bad a boat as his wife, i can only imagine some of the stuff he's said to others.

brainman, i thank you for praying for everyone here. no one in my family believes in god, myself included (i am 100% atheist), but i do believe in the kindness of strangers and you sir are someone who is being very selfless in what they do, even with what you have gone through. my best goes to you and your family, and keep on praying if thats what helps you.

also i just noticed, i read your story fully, i had read what you had posted on the topics of many others, and had the basic idea of what type of cancer you had, what it was, what it was like for you, etc. but hadn't read your topic about yourself, and can just say it was interesting to note you wrote it exactly two years ago on oct 18, and today was oct 18. fate perhaps? like i said i don't believe in god, but i believe in fate, and basically the ying and yang, an informal taoist outlook. just something interesting i noticed.

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