The State of Fatal Cancer Information Is Weak
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Anonymous
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I know this is a tough subject, but I think that cancer centers are so focused on patients with mild cancer who might get better that they don’t offer very good support for patients who are faring poorly.
I’ve found a few good posts on Quora. I found a brochure somewhere that was a pretty good intro to death. But even that brochure was very general, as if a book about babies said, “You should baby nutritious food.” Yeah, sure. But there’s more to it. If a web article about dying from cancer says your loved one might have a lot of pain, well, yeah, but there’s more to it. Just interpreting what my father is saying and figuring out how to separate out facts, delirium, dementia and the effects of aphasia is really hard. It’s hard to find anything about how to talk to people with cancer in the brain, at all. I have no idea whether the guides for talking to people with Alzheimer’s are even relevant. My dad’s in a good facility, so I can ask the aides, but I wish there were better resources for people caring for older loved ones when dementia isn’t the chief complaint. |
Anonymous
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I don't have any answers. We went through almost the opposite with my dad. He developed significant dementia relatively quickly that we were so focused on chasing supports for his delusions that we missed his pancreatic cancer. We only found out about his cancer a week before he passed. We had been dealing with the sudden onset of dementia for about 4 months. So, it was kind of a shock that he was gone so fast after finding the cancer. We decided not to treat the cancer/symptoms because his quality of life was so poor due to the dementia. Although, I don't think there was much to be done for cancer. And I don't know how much the dementia and the cancer were intertwined.
It is a touch road no matter what. |
Anonymous
The dementia may have been metastasis to the brain. Pancreatic cancer is such a fast killer. Sorry your dad went through all this. |
Anonymous
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What exactly are you looking for, OP? You should be very specific with the doctor about what you want to know. They will not evade a specific, direct, question, but can wiggle out of vague ones. Once your medical questions are answered, you can also ask for a social worker to explore hospice, where there will be people who are used to accompanying people at the end.
My BIL died of an inoperable brain tumor in his early 40s. It was traumatic because he was gone in 3 weeks and could not leave the hospital. The hospital focused on treatment, but when he started his last decline, there was no psychological support for anyone, just pain meds. It was traumatic for all involved because my BIL was lucid until the last day, and he couldn't believe it was the end. My husband, who is a doctor, tried to help as much as he could, but there was little he could do. |
Anonymous
| It sounds like you may be having trouble getting the true picture of things. Get the forms completed so you can speak directly to each of the physicians involved. When my mother was suffering from horrible lymphoma, the reports I got from her and the discussions I had directly with her oncologist were very different. Little of that had to do with any cognitive effects of the cancer treatment. It had much more to do with optimistic framing, a lack of sophistication about medical practice (and statistics), and just downright being scared out of her mind and blocking things out. I'm sorry. Take care. |
Anonymous
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Cancer centers should have social withers who deal with this directly. Also, have you tried the American Cancer Society?
(No one really has mild cancer. They may have a type or stage that is curable.) I am sorry that you are having to deal with end of life issues. Hospices are specialists in that… |
Anonymous
It seems as if, once I actually try to talk to the social workers about any resource that ought to be pretty easy to locate, it doesn’t exist, doesn’t exist in a useful form or isn’t something the social worker of other care coordinator can help with. Such as: Simply getting a parent who’s weak from chemo, and who isn’t normally in a wheelchair, in a chair to go home. I eventually figured out a workaround, but, at first I couldn’t figure out any way at all to get my father back home from chemo. The cancer center has made, maybe, $200,000 off my father, but because of legal concerns, it won’t send anyone to help with transferring someone or provide a list of gig workers who help with that. And I know that lots of people make that happen everyday, but this was my first time doing post-chemo transport, and I just couldn’t even imagine that a place that had earned $200,000 off my father wouldn’t have a big strong guy somewhere who could help out for a couple minutes. Discovering that blew my mind. |
Anonymous
| Try talking to the patient advocate. Perhaps more could be done. |
Anonymous
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OP has a reasonable point. When an elderly patient has spreading cancer, some doctors stop engaging.
They have a digital file full of information, but Lise I retesting when it’s time to stop treatments. It is helpful to know which organs are giving out, being pressed on, whatever, bc it helps to determine care. No one dared guess life expectancy, so the family can’t plan for how to visit or provide comfort. Thought hospice would help saying: now is the time to say good bye, etc. But hospice isn’t necessarily present on the crucial days. You think everything is all lined up, but in the end, it can be a cold ocean swim in the dark. |
Anonymous
| Lose interest* |
Anonymous
| Completely agree with OP. My 79 year old mom developed small cell lung cancer— very aggressive. The oncologist recommended the full course of chemo and radiation because “she seems like a fighter.” The chemo killed my mom. One week of it, and she immediately deteriorated to the point where she died in a few weeks. The oncologist just put her on the standard aggressive protocol without considering that she was pretty frail, and even with treatment, life expectancy for SCLC is very short. We were so in shock by her sudden diagnosis that we didn’t even have time to investigate or get a second opinion. (This was also in March 2020 so getting any kind of quality health care was impossible because of the onset of the pandemic..) |
Anonymous
| OP it has been my experience that since most medical practices are focused on curing disease, they don’t do palliative care well. Get connected to hospice. If it’s too soon for hospice care, they may have another level that meets your needs. I’m sorry, I know it’s so tough. |
Anonymous
They use patients like guinea pigs. The same happened with my dad and his terminal colon cancer. They kept telling him how great he was doing and how it was working as he visibly was quickly deteriorating before our eyes...to the point of not being able to talk above a whisper, stay awake or walk. Nobody was forthcoming. I still remember the liver doctor coming in and telling me how great my dad's labs looked after an ER doctor had basically looked at my mom, siblings and I and say he was riddle with cancer and his stomach was filled with ascites. My dad never complained to us, but it breaks my heart how alone he must have felt and how much he kept putting up a front for us. There is little compassion or directness in cancer care. The last round of chemo killed him. |
Anonymous
Sorry you went through this but I am shocked that it doesn't seem as if any drs told you it almost certainly was not dementia but instead metastasized pancreatic cancer. That is a hallmark of the quick spreading disease. It is a miserable cancer. When my mom was diagnosed with it, we were told to expect deliriums/dementia like symptoms within 2 months. She lived less than 2 months but the dementia like symptoms appeared at about week 4 after diagnosis. It is very, very common. Your dad most certainly had the cancer spread to his brain. |
Anonymous
A. Thank you to everyone who replied. There are just too many replies to reply to everyone without me overposting. B. I think a lot of the problem comes from the fact that cancer doctors and their support people have to compartmentalize to do their jobs, and they naturally want to focus more on trying to save people than describing how people decline. What it just boils down to is that, once large numbers of boomers near the end of life, then we’ll probably start getting what amounts to the deluxe Princeton Review guide to death. Now, what we have is the equivalent of the mimeographed college guide pamphlets the high schools handed out in 1952. |