How will his liver cancer end...?

April 10, 2007 4:33 AM

My grandfather has been diagnosed with a liver/pancreatic cancer that can't be operated on. How is this likely to play out? How do we deal with my grandmother afterwards?

I know none of you are doctors. I'm after experiences and suggestions not carefully guarded vague statements. We're all in the UK if that effects anything you're going to say.

The old goat is 86 years old and appears to be in superb health. Routine blood tests last year showed he had problems with his liver. Meds change did nothing so he was hit with a barrage of tests. The result was a diagnosis of cancer at the bottom of the liver bile duct in the liver/pancreas area.

Because of his age, risk and the state of my grandmother's health (more of that later) they've decided that the best course is to let the cancer run it's course.

The doctor implied that he had 3 to 12 months to live. He stated that once my grandfather get jaundiced he'd have a stent put in. He also stated that stents tend to get blocked after just three months. He implied that there would be no need to replace the stent, in turn implying that once jaundice starts, he's got 3 months tops.

He's in good spirits and generally seems to be of the opinion that he has to die some time, so why not now. He was considering having the risky operation on the grounds that he would rather die on the table than from cancer.

So... the questions...

1) How is this likely to play out for him? His eyes are starting to show grey/yellow but he's not had a stent fitted yet. Is the 3 month guess about right?

2) The doctor implied that he'll be fine until the last week or so, at which point the pain will become 'moderate'. Are we talking codrydamol or liquid morphine here?

To make things worse, my grandmother is an OldTimers case. Often she's fine apart from a lack of short term memory but then other times she talks nonsense, apparently stringing words and sentence fragments together at random, frequently based on events that happened decades ago. She mixes pronouns all the time, frequently has no idea who family members are but pretends she does and doesn't recognise her own house of 20 years.

3) How the hell do I explain this situation to her? Attempts to convince her she had alzheimers went badly enough (and weren't remembered).

4) What the hell happens after he dies? She can't live on her own, and my brother and I are completely unable to look after her. How does one put a family member in a home while they're lucid enough to be upset about it?

So, basically "OMG planning/emotional overload, what the hell do I do now?"

posted by twine42 to health & fitness (17 comments total)

It sounds like he has Stage IV pancreatic cancer. (Assuming that the "liver" cancer is metastasized pancreatic cancer.

If I read these statistics correctly, regardless of age, most patients die within one year, and less than 1% survive five years.

For pain management, you're probably talking about a morphine drip.

I wish you the best.
posted by Tacos Are Pretty Great at 5:21 AM on April 10, 2007

1) My grandmother was diagnosed with operable pancreatic cancer 2 years ago and we just found out that it has metasticized to her lungs. The stent she had installed was in for around 3 months, at which point they removed half of her pancreas and her gallbladder (whipple procedure). She had no problems with the stent clogging. We found the pancreatic cancer because she became jaundiced - VERY jaundiced. Her eyes became very yellow, her skin turned very yellow, her urine turned brownish, and she became super itchy all over. The pancreas and the gallbladder share a bile tube, when they become clogged, the bile salts pile up and cause the itching - that was probably the worst for her. Once the stent was in, it took approx. 6 days for the itching to go away - anti-histamines were useless. I would ask if they could do the procedure right now, there doesn't seem to be a reason to wait any longer than necessary.

As the tumor grows, the pain will feel a lot like passing a gallstone, similar to very painful gas build-up in the intestines - he will feel it in the upper right part of his abdomen and possibly in his back. That would be a good indicator that his time is running out.

2) Her pain never became severe enough to warrant medication, but they mentioned that morphine would be what they would give her.

3 & 4) I don't know much about alzheimers care, but it seems that a half-way home for patients with memory problems would be the way to go with your grandmother. There are different plans of care for these patients that can be altered based on their progression through the disease. They would also be a good resource for councilling her with regards to her husband.

I don't know if the info. I offered was at all helpful, but if you have further questions, my e-mail is in my profile. Good luck.
posted by blackkar at 5:39 AM on April 10, 2007

Wow, this is tough. One of my great-grandmothers had Alzheimer's, and she lived 3+ hours away from any caregivers in the family... and once she got to the point that she wasn't paying her bills, etc, it was clear she couldn't live on her own, so we moved her to an assisted living facility (it started as my grandparents telling her they'd go for a drive, and then ... they kept going). She was furious -- there was quite the shouting match -- and it was incredibly difficult for everyone, but in the end, it needed to happen. And if it's someone with an advancing case of Alzheimers, while they will periodically be lucid enough to be angry and upset, it is the best thing for everyone.

Many assisted living/nursing home type places understand this kind of process, so if you set something up with a nearby one in advance, they will likely be very supportive and helpful (if they aren't, run away fast -- they probably suck at caregiving, too). In the case of my great grandmother, while she was lucid enough to be furious when she was moved, within two months she had gone so downhill she no longer recognized anyone but her daughter. I wonder at times if she had just been "hanging on" that very last bit as long as she was still living on her own, trying to maintain independence; then once she didn't have to, she just let it go.

In the case of your grandmother, to make it as easy as possible, I'd just look for an assisted living place as close to you as possible so that you can visit her often and make sure she still understands that you haven't abandoned her. Visiting someone in an Alzheimer's care facility is really difficult, but as long as she can recognize who you are, it will be important for her.

I can't offer any advice with respect to your grandfather; but I'm very sorry for the situation your family is finding itself in right now. My best wishes to all of you as you work your way through this.
posted by olinerd at 5:40 AM on April 10, 2007

I suppose "I know none of you are doctors." should have been "I know none of you are my doctor"...

Thanks for the answers so far guys. I was half expecting three answers in total not three in an hour or so.

backkar - Whipple is what they were talking about for him, but the year of bed rest and the 4 year maximum life expectancy he was given didn't seem worth it to him. Can't overly say I blame him...
posted by twine42 at 5:59 AM on April 10, 2007

She was only 75 when she had the whipple (after chemo and radiation to shrink the tumor) and her recovery period was much shorter than a year of bed rest - I think it was a week in the hospital and a week with my mom on bedrest.

She did say after the surgery that she didn't think she would have had it if she knew what it would be like - and she has high pain tolerance.

We are joining another protocol for chemo therapies in May and they are saying 6-8 months. A 4-year expectancy for pancreatic cancer is pretty much unheard of - all of the research I did indicated 12-18 months (usually it has metasticized by the time they find the cancer). The majority of pancreatic cases (>85%) don't make 5 years.
posted by blackkar at 6:31 AM on April 10, 2007

First, call hospice. They can advise and support you and your family through this. The doctor can give you a referral once he/ she believes that your grandfather's life expectancy is months, rather than years. The hospice social workers can evalaute your grandmother and help you with a plan for her care after his death.

Pain medications are wonderful these days and whether he needs morphine or something else, he should be comfortable all the way along.

Good luck to you and your family.
posted by Jandasmo at 6:43 AM on April 10, 2007

I'm so sorry, twine42. I'm going through this myself right now with my grandmother, though my mother is her primary caretaker and having to do all the planning and decision-making. I don't envy you that work.

Ask for help, with regards to your grandmother. Your grandfather's doctor sounds like a good egg, perhaps his office can at least point you to a social worker or whatever entity is responsible for assisted living assessments, for your grandmother. She will hate going into care, but in that state it's so easy for her to fall, or burn herself, or just get very sick and not tell anyone.

Your grandfather's doctor seems fairly concerned with his comfort, and I guess he'll be responsible for palliative care. You should ask him, though, if there's a hospice group that you should get in contact with. I would imagine we are talking about morphine-grade pain, yes, but that's also kind of the go-to drug in palliative pain relief because one doesn't need to be concerned with long-term effects and nothing works better. It is usually liquid morphine drops, which means you can start with very small doses.

Nobody can really say how it's going to happen, and as much comfort as you would take in thinking you know, it's almost better not to have any preconceived ideas because the repeated shakeups when things don't go the way you've steeled yourself for can be pretty devastating. This is our second round through it; with my grandfather it went on for about 2 years and with my grandmother this time we're just through two weeks and at least two occasions of "surely not through the night" followed by rallies, so we're just rolling with it as best we can.
posted by Lyn Never at 7:04 AM on April 10, 2007

my father in law had it...
diagnosed just after xmas & he died at the end of february. It was very quick.... usually, Pancreatic cancer once found, it is too late.

We feel we were fortunately that he didn't suffer long. He was also very aware & coherent of his condition.
posted by foodybat at 7:05 AM on April 10, 2007

Where are your parents (and aunts and uncles, e.g. their children) during all of this?
posted by mkultra at 8:33 AM on April 10, 2007

My father had liver/pancreatic cancer and died three months after diagnosis. There was no stent put in or anything - he decided that he wanted only palliative care. Towards the end he was in quite a lot of pain and so was getting a lot of liquid morphine which we gave via a mouth syringe. Then he lapsed into a coma which lasted about two days and died at home, which is what he wanted.

The advice to call hospice is good; they can walk you through a lot of this. I'd also look around for any Alzheimers support groups in the area and find out what they know about housing/care for Alzheimers patients. The sooner you start that process the better. My mother lives in a retirement community that has a section dedicated to assisted living and a skilled nursing section; when I was there last I heard her talking about a woman whose husband had just died but, even though she had been at the memorial service a week before she didn't really know or understand that her husband was dead; she kept walking around asking why he hadn't come to see her. So there's a good chance that your grandmother is just not going to grasp what's going on no matter what you do.

You need help on that front and I think you need it fast, since at least in the states there is often a lengthy waiting list for Alzheimers care facilities, and the better the place, the longer the list. Call the local hospital, too - I know ours has Alzheimers support groups for families. Good luck.
posted by mygothlaundry at 10:23 AM on April 10, 2007

Pancreatic cancer is very difficult to detect until it's way too late, often only six weeks survival can be expected. My dad's tumor showed up exactly where your grandpa's did, and sort of pinched off the bile duct, which resulted in jaundice, which was the only reason they found it when they did; we were 'lucky' enough to have him for another year. He underwent what at the time was an experimental procedure called the Whipple (it's even shown up on 'ER' since then) but to no avail. Three other acquaintances of mine (one my high school music teacher, another my dad's much-older brother) were diagnosed with the same disease at about the same time as my dad (don't drink the water in my home town) and each had about six weeks or so.

Sometimes the cure is worse than the disease. Most of my dad's suffering came as a result of septic shock due to an infection from the surgery. He just sort of wasted away, became confused, and at the end his strong physical heart wouldn't let him slip away quietly - it was a struggle for him. He was 54, just three years older than I am now.

What amazed us was how, after the surgery and the long hospital stays (and repeated stays over the final few months), his emotions came to the fore. He was always a stoic sort of guy, but he'd cry at the drop of a hat. He milked all he could out of the time he had left, trying to undo the damage done in relationships with his kids and the rest of his family. Lots of regret, all the plans my parents were making regarding retirement went right out the window. It's tough to realize how young he really was until now, when I'm approaching the same stage of life.

Blessings on your grandpap and the rest of your family.
posted by DandyRandy at 10:57 AM on April 10, 2007

I have no experience with pancreatic cancer, and I wish your grandfather all the best during this difficult time.

In the case of your grandmother, is hiring a home health care worker to stay with her an option for you and your brother? That is, if no one else in the family is able to go and stay with her? My beloved mother-in-law is in the throes of early onset Alzheimer's Disease. She's still in her 60s, but no longer remembers the names of her children, can't find her way around her house (where she's lived for 40 years) without help, and needs assistance dressing, bathing, bathrooming, etc. I know from experience she'd be agitated and disoriented if she were placed somewhere other than her own home right now, and would be combative and probably have to be physically restrained so that she wouldn't wander away.

Perhaps your local Alzheimer's Association chapter can give you some assistance/direction regarding home health care, assisted living, and/or adult daycare. Good luck to you and your family.
posted by Oriole Adams at 2:05 PM on April 10, 2007

I can't say enough good things about hospice. Hospitals are structured around "fixing" things. When you're no longer trying to "fix" things, it's far better to be in a place that is focused on making each day as good as it can be. I really wish you all the best.
posted by the jam at 2:35 PM on April 10, 2007

i can't give you any insight into your grandfather's situation, but as for your grandmother, once alzheimer's really sets in, as it seems to have (she doesn't sound "fine" to me) the main thing to do is just go along with whatever reality she seems to be in. my instinct with my own grandmother was just to keep her happy and calm, and not distress her with things that she can't remember or handle. you can try explaining it to her, but check her reaction. if it's really distressing to her, and then she forgets and asks again, then i would just give some placating answer (grandpa's not feeling well, or after he's gone, grandpa's gone out of town/to the store/whatever). if she has as much memory loss as you describe, i would bet that she will never connect the dots and realize that grandpa's been grocery shopping for five weeks or whatever.

as for how to handle the transition to a nursing home, i would see if there are any alzheimer's care facilities in your area. your grandfather, while he's well, may be able to help you with this. you could visit them together and see how she reacts and how he feels about it. it may give him comfort to know where his wife will be living after he's gone, and to make sure it's a good place for her. alternatively, if there's a home nurse program you can sign up for, that may work until she really needs nursing care as well as minding.

she may be upset when the move happens, but it'll have to happen, for her safety. it will be hard for you, too, but remind yourself what state she would be in if no one was caring for her.
posted by thinkingwoman at 2:52 PM on April 10, 2007

Thanks for the answers guys... From this thread and the emails I've had off site (I'd forgotten my email address was on here) I know I'm not exactly alone here right now. Cheers for all your answers. I know a lot of things have been contradictory, but that's what I want in a way - the text book answers for these things give you no real idea of what the real situation is like.

I'm so glad that my grandfather has stupidly expensive health insurance - they spotted this coming from a hell of a distance compared to some others. This seems to be a real sneaky bastard of a cancer.

mkultra : "Where are your parents (and aunts and uncles, e.g. their children) during all of this?"
Well... my grandparents both lost their siblings (on each) not long after WWII, my father (an only child) died five years ago, my mother is christ knows where, but probably pissed out of her skull. For most of my life my grandparents have been my parents. Which is a long way of saying that it's the two old'uns, me, my wife and my brother.

thinkingwoman : she's not fine I agree, but every now and then she'll suddenly be perfectly clear and with it as if the last ten years of degeneration never happened. Then just as quickly she'll start talking about coating the window in marmalade because the her daughter (she had one son) says she makes the best in town.

From here and email I've found out a lot. The nursing home nearest my house is actually a specialist in Altzheimers. I'll stop in there tomorrow and see what they can tell me about things.

From an emailing mefite (who I'll assume wants to stay in the shadows) I've learnt that my local hospital has a superb department for looking after people such as my grandfather.

This is why Meta is a great place. Cheers guys. I'm going to head to bed to pretend I've got something in my eye. Cheers guys.
posted by twine42 at 4:05 PM on April 10, 2007

my mother was diagnosed with acute pancreatitis over a year before biopsies revealed malignant pancreatic cancer. she had her gallbladder removed when the pancreatitis was diagnosed, to relieve pressure on the area. that was in august of 2004, and around september of 2006 she had a valve put in which drained bile to an external bag. she'd had moderate jaundice for much of this intervening period, and it improved somewhat once they put the drain in. the jaundice returned sometime that fall/winter, and she died the following february. she was considerably younger (56), and the cause and character of the cancer may have been different, but i suspect that your doctor's prognosis is probably not, i'm very sorry to say, far off the mark.

i'll reiterate the previous suggestion about hospice care, if you're not already pursuing it. also, i'm sorry to tell you that, when mom did die, it was an incredibly painful ordeal (physically. for her). the night she died, she was transferred to a "hospice house," and, in retrospect, this was the wrong decision, as there was no intent to provide lifesaving care, and the ameliorative care they gave was ... not adequate. ultimately, what was already a horrible experience ended up being that much worse because of the move. obviously i can't know how things are going to go for your grandfather, but my suggestion is that , at least when/if things start getting really bad, you have the hospice folks come to wherever he's currently living and put in a hospital bed for him, and really, don't bother moving him when the time comes. it's not worth the additional stress of calling paramedics, and certainly not worth the additional pain that it may well cause him.

i'm sorry if my advice sounds a bit... brutal, it's just my experience of the disease. i wish you all the best of luck.
posted by wreckingball at 5:38 PM on April 10, 2007

My mom just retired from a long career managing hospice nurses, and I can't say enough about that organization. Pancreatic cancer is a bear-a friend's mom has it, and my mom says they have improved survival rates from something like one month from diagnosis to death, to four months.

Re your grandma's situation: good hospice social workers deal with situations like that, and things even more complicated, all the time. They are experts at problem-solving this sort of thing. THey are free. I'd start there, before doing a lot of calling around yourself. They tend to know the ins and outs of which care centers are good, who to hire for inhome care, etc.

I'm not sure if any of this varies in the UK, where I believe you said you are, but I know hospice is valued there.

I'm so sorry for your loss. What a crappy situation.
posted by purenitrous at 6:51 PM on April 10, 2007