What to expect when diagnosed with pancreatic cancer and not getting treatment
January 1, 2011 2:20 PM   Subscribe

My wife's grandmother has pancreatic cancer and is not getting treated. What can she (the grandmother) expect?

Now, my wife doesn't exactly know what PC stage Grandma is. I think in general with PC they have to do exploratory surgery to find out and since she's 87, they're not going to. Also, it's fair to assume that someone told Grandma what to expect but Grandma may have decided to forget what they told her.

What we do know: She's 87. She found out she had PC after she became jaundiced because of a blocked bile duct and has since had a stent put in. Before being diagnosed, she had been losing weight, lost her appetite, etc. She's a former smoker but hasn't smoked in decades. She's a diabetic and had problems recently controlling her insulin levels.

What we want to know: What happens next?
posted by meta_eli to Health & Fitness (15 answers total) 1 user marked this as a favorite
When you say "is not getting treated," do you mean that she's not under the care of medical professionals, or simply that she has declined to pursue life-sustaining treatment for the cancer? If she's refusing to see doctors, that's a different situation than if she just doesn't want to aggressively go after the cancer.
posted by decathecting at 2:24 PM on January 1, 2011

In my experience (my grandpa died of it 9 years ago), it's fast and painful. They gave him 6-12 months, he lasted 18 - but he wasn't really there for the last year. He did have treatment, which is probably why he kept going for so long, but PC is one of the least treatable cancers as far as I'm aware.

Look into hospice care and pain management.

I'm very sorry about your wife's grandma.
posted by elsietheeel at 2:25 PM on January 1, 2011

Here's how it went with my mom, who was 79 when diagnosed - also because of jaundice.

She had surgery to clear up the jaundice, but nothing could be done for the cancer itself. The oncologist recommended no chemo or radiation, which made sense to all of the family, given what we'd read.

My mom lived for about another year, at her apartment in a senior complex, independently - until 9 days before she died. When the end came, it was quick and nearly painless. She went through the typical end-of-life steps that hospice laid out in a booklet that I didn't see until AFTER her death: She stopped leaving her apartment, stopped eating - and drinking.

She was briefly hospitalized because she was totally dehydrated, but soon got moved to a nursing home that we chose - the one where she had recovered from the jaundice surgery - which was pretty darn great. Hospice was called in for those last few days, and I can't say enough good things about hospice. (But again, get recommendations as to WHICH hospice group to use, if there's more than one in your area.) But Mom took minimal pain meds - she kept insisting that nothing hurt.
posted by jeri at 2:55 PM on January 1, 2011

She has doctors and is seeing doctors but isn't doing chemo (or any other direct treatment) that I'm aware of. It's pretty much just palliative care.
posted by meta_eli at 3:05 PM on January 1, 2011

Ohh, my sympathies. Pancreatic cancer is rough. And fast. Six months is pretty typical.

If she's not ready for hospice care or if she's not yet at the point where she meets the criteria, see if the local hospitals have a palliative care program, which would provide humane pain management and end-of-life medical care for your wife's grandmother, and would help her and the extended family understand/cope with what's coming next, including transition to hospice care.
posted by desuetude at 3:15 PM on January 1, 2011

I know this isn't exactly what you're asking, but there was a recent article in the New Yorker about hospice care and its impact on the patient and caretakers. It brought me to tears and gave me great perspective during a rough time.
posted by squasher at 3:48 PM on January 1, 2011

My sympathies. Both my mother and brother died of pancreatic cancer. I was too young to remember much about my Mom's treatment, but she died within 5 months of the diagnosis. My brother died two years ago. Despite being in Boston and having access to some of the best medical centers in the country, he also died within 6 months of his diagnosis. So while some do better, the 6 month prognosis is fairly accurate for a lot of folks. I don't want to sound insensitive, but given your grandmother's age, she may not have even that much time.

Both my mother and brother had problems with blood clots after their diagnosis. I honestly don't know if this was something related to the pancreatic cancer itself or just being bed-ridden for long periods of time. My brother also had a stroke, but I think that he was in the hospital at the time so it was caught quickly and was relatively mild. Aside from being weak and understandably depressed about his diagnosis, he did not seem to be in a lot of pain. He underwent at least one round of chemo and if I remember correctly, it did seem to make him feel better (more energy and better appetite) after he completed treatment. I imagine if the pain got worse in his last few weeks, he may have been on morphine, but I saw him about a week before he died and he was very lucid and in much better spirits, as if he'd totally accepted that he was going to die, and wanted to make the most of the time that he had left with his family. He was able to die in his own home surrounded by his family and he seemed to be in relative peace and not in a lot of pain (or at least it was able to be controlled though medication).

My brother never really regained his appetite and supplemented his diet with Ensure and other meal replacement type shakes so you might want to stock up on those for your grandmother.

He and his wife did go through therapy with a professional who deals with terminally ill cancer patients. They are also devout Catholics. I only mention the latter, because many people find comfort and support from their religion especially during these times. If your grandmother is religious, she might benefit from visits from the leader of her particular church/synagogue/mosque.

Again, you have my sympathies.
posted by kaybdc at 4:31 PM on January 1, 2011

My father died from pancreatic cancer when he was 53. Back then, pancreatic cancer had among the highest fatality rates after diagnosis mainly because it was nearly always discovered after it was long since too late to treat. In my dad's case, they did an exploratory surgery, but when they had him opened up, all they did was take some biopsies and then close him back up again. The cancer had spread to his liver and elsewhere, and there was pretty much nothing that could be done.

He spent the rest of his life (about nine months) in a hospital bed, doped up on demerol. This was before the "War on Drugs", and these days, sad to say, they're a lot less free with use of opiates for pain control.
posted by Chocolate Pickle at 5:54 PM on January 1, 2011 [1 favorite]

First, I'm so, so sorry. Pancreatic cancer is a horrible, horrible cancer. My mother was diagnosed with it a year ago and I felt (and still feel) overwhelmed with it all.

Pancreatic Cancer Awareness Network is fantastic. They have a section for the recently diagnosed. You can sometimes find local people to talk to, if there is a volunteer group in your area.

Get the education packet. You will get a folder with a whole bunch of stuff in there that is somewhat overwhelming, but really beneficial.

They also have a support channel for any of you to talk with someone and ask questions. Make use of this. This is where you'd ask your questions about what to expect and get some answers from people who have been there and who know what resources you have available.

Send me a message if you'd like, too.

I'm not affiliated with Pancan at all - I've just made use of their resources a lot over the past year and found them very helpful when we needed them as a family.
posted by schnee at 9:23 PM on January 1, 2011

Hospice! If she isn't getting active treatment, hospice will come in and provide DME, meds. And CNA care if she wants it. The RN who visits will keep an eye on her overall health, any infections will get treated (I hate that people think we just let people die with no treatment). I dunno about other hospices but we are VERY generous with pain meds, no need for her to be in any pain she doesn't want. There is a balance between pain control and alertness that folks need to decide for themselves. Anyhow, my pancreatic CA pts usually pass in 6 weeks, less if there's lots of liver involvement. I'm so sorry.
posted by yodelingisfun at 1:07 AM on January 2, 2011 [1 favorite]

My brother just died of pancreatic cancer. It probably started in the beginning of the year, but was undiagnosed until late November. Because the cancer had spread to numerous organs, it was too late for chemotherapy to be a meaningful option.

Cancer causes changes in the blood that make stroke more likely. This happened to my brother, but he got good fast care and rebounded pretty well, regaining most speech and mental acuity. A lot depends on where the cancer spreads. My brother's cancer spread widely and he died soon after coming home from the stroke hospital stay. Hospice care is wonderful, and made it possible for my brother to die at home, not in great pain, not hooked up to any IV or aggressive medical support.

Someone should talk to you and your grandparent about your choices. You need to know what treatments will provide comfort and what will lead to medical intervention. It's a difficult conversation, and hospice workers are very good at this.

Talk to Grammie about her favorite music. Ask her to tell you family stories. Make her favorite foods if she can tolerate them. It's okay, she knows she's dying. Let her lead the tone, but most old people love to talk about their life; and you won't get another chance to hear her stories.

I'm so sorry your grandmother and your family are going through this. It's sad and painful. Hospice will make it as bearable as possible. Yodelingisfun, bless you for your work in hospice; it's a true blessing. And fuck you, cancer.
posted by Mom at 9:59 AM on January 2, 2011

Hi, wife here, I wanted to thank everyone for your kind thoughts and suggestions (and husband for use of a question). My real question is, how do people actually die of cancer, specifically pancreatic cancer? I understand that when people have a heart attack, they die because their blood stopped moving oxygen around their body. Or that people rarely die of AIDS but more likely die from opportunistic infections like pneumonia that don't usually kill people with healthy immune systems.

I don't understand what goes on with someone who has cancer, specifically pancreatic cancer. My aunt had pancreatic cancer but we were kept out of the loop so I don't know how she died. My grandmother lost her appetite but she moved to a nice independent living facility so she's eating more. She has a nurse that comes several times a day to take her blood sugar.

So if someone could explain to someone who has minimal understanding of things related to science and medicine how people die of cancer, specifically pancreatic cancer, I would really appreciate it.
posted by kat518 at 1:07 PM on January 2, 2011

how do people actually die of cancer, specifically pancreatic cancer?

In my Dad's case, it was actually liver failure which killed him. His cancer had spread to his liver and destroyed it. For all practical purposes, he starved to death because he no longer was able to process food. Down to the end, the only nutrition he got was from an IV, and that isn't enough.
posted by Chocolate Pickle at 11:33 AM on January 3, 2011

Look into hospice. It will be the best thing your grandmother-in-law and her family would otherwise discover way way too late in the process.
posted by gramcracker at 6:24 PM on January 3, 2011

how do people actually die of cancer, specifically pancreatic cancer?

Continuing with this: there is no single way. The cancer spreads and causes progressive damage in other locations in the body, and eventually there's enough damage so that life processes can't be maintained. The exact cause of death in any particular case will be a function of what got destroyed.
posted by Chocolate Pickle at 6:30 PM on January 3, 2011

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