I'm sorry to share such a depressing post. I'm in an odd spot in life where in my mid 40's I am the sole family member connected to my Aunt. She is 63 and fell last week, resulting from a seizure. She was brought to the hospital and had chest scans and brain scans. It found masses in her lungs and brain. They wanted to take biopsies and she refused. Without 'confirmation' they can't officially diagnose her. But the nurse told me on the phone it is almost certainly lung cancer and the lesions in her brain are most likely connected. My aunt is home now and only taking a steroid to held deal with edema resulting from lesions in the brain.
She doesn't want any further treatment. I'm not sure how to even approach this other than to honor her wishes and try and support her. I'm in Vermont and she is in NJ. She has already created a living will, given me power of attorney etc... Does anyone have a realistic guess on how long she might have if she has metastasized stage IV lung cancer in the brain and is not taking any real treatment other than steroids?
I have never been through this and am frankly overwhelmed.
The bottom line is that there is no way to be sure how much time she has left, especially since she's refusing treatment. The end may come suddenly Since the cancer has spread to the brain, she may also lose the power of speech and her other senses before she finally passes.
He never smoked and was the model of healthy living. He wrote numerous college textbooks on exercise and kinesiology. He practiced what he preached. His diagnosis began as an irritating cough that he couldn't shake. His wife forced him to go to the doctor. Blood tests revealed elevated white blood cell count and triggered the chest xrays. Stage IV was the initial diagnosis with an initial prognosis of 6 months to live. He fought like hell and put his body through numerous bouts of chemo, experimental drugs, brain surgery, and more. He entered hospice in April of this year and passed away 2 years after the initial diagnosis. He was only 39.
I don't see there is much you can do except honor her wishes, plan for the inevitable with some good way to honor the life she has lived.
Does she have anyone (friends) that can check in on her?
The beginning of the end was when the cancer finally spread to the brain. The first symptom was pain/trouble making a fist. The spread to the brain was discovered, and it only took about 2 months from that point.
Sorry to hear and good luck to you.
Despite her independence, she will need help. The seizures and blurred vision will likely increase. Injuries from the falls will only compound this difficult final journey. Make it as comforting as possible.
With regards to her estate, try and resolve (close out) as many assets beforehand. It will be much easier while she is alive than trying to navigate the estate process yourself. Perhaps, use those assets to assist her on bucket-list goals.
Thoughts with you bud!
One app I know of is below. Don't be afraid to check out a meetup (meetup.com) or look for a support group for families and caregivers, maybe through your local hospital or your insurance company.
Belong.life "The world's largest social network for patients, caregivers and their families." - ( New Window )
My mother had been involved with the Hemlock Society and was a great believer in death with dignity. Didn't want to ever be on life support or live her life impaired. For entirely logical good reasons we made decisions for her treatment that ended up with her in a coma on life support and eventually living the last months of her life impaired. Which sort of left us all very sad and puzzled. How did we get here?
I think our biggest error was not being willing enough to let her go.
My advice, based on that experience, would be to honor her wishes and err on the side of less treatment, less intervention. There will be logical, good reasons to do more to prolong her life; if her instructions are clear that she doesn't want that, resist that impulse.
It's probably going to get bad. You can look up sites that warn family and caregivers what to expect with end-stage brain cancer. It's pretty awful. But treatment may not really help much. This is what she wants and the alternatives could well be worse.
If it were me, I would have one conversation with her about the new treatments that have come online. They're more effective and less toxic than past treatments. But she may not care, and it's her decision to make. Maybe she's ready to "go."
He never smoked and was the model of healthy living. He wrote numerous college textbooks on exercise and kinesiology. He practiced what he preached. His diagnosis began as an irritating cough that he couldn't shake. His wife forced him to go to the doctor. Blood tests revealed elevated white blood cell count and triggered the chest xrays. Stage IV was the initial diagnosis with an initial prognosis of 6 months to live. He fought like hell and put his body through numerous bouts of chemo, experimental drugs, brain surgery, and more. He entered hospice in April of this year and passed away 2 years after the initial diagnosis. He was only 39.
Quote:
She doesn't want any further treatment. I'm not sure how to even approach this other than to honor her wishes and try and support her. I'm in Vermont and she is in NJ. She has already created a living will, given me power of attorney etc... Does anyone have a realistic guess on how long she might have if she has metastasized stage IV lung cancer in the brain and is not taking any real treatment other than steroids?
My mother had been involved with the Hemlock Society and was a great believer in death with dignity. Didn't want to ever be on life support or live her life impaired. For entirely logical good reasons we made decisions for her treatment that ended up with her in a coma on life support and eventually living the last months of her life impaired. Which sort of left us all very sad and puzzled. How did we get here?
I think our biggest error was not being willing enough to let her go.
My advice, based on that experience, would be to honor her wishes and err on the side of less treatment, less intervention. There will be logical, good reasons to do more to prolong her life; if her instructions are clear that she doesn't want that, resist that impulse.
It's probably going to get bad. You can look up sites that warn family and caregivers what to expect with end-stage brain cancer. It's pretty awful. But treatment may not really help much. This is what she wants and the alternatives could well be worse.
If it were me, I would have one conversation with her about the new treatments that have come online. They're more effective and less toxic than past treatments. But she may not care, and it's her decision to make. Maybe she's ready to "go."
I think ultimately this is where she's at. Thank you for sharing.
Good point here Fred. I'm surprised they didn't diagnose without the biopsies...or maybe that's obvious. I don't know.
Its worth looking into
On the other hand, my grandfather went from melanoma skin cancer, but still relatively healthy, until one night he fell down from muscle weakness. He went to the ER; two days later he was comatose, and in three more days he had passed with a prior unknown diagnosis of leukemia on top of the melanoma.
Regarding Your Aunt:
First off, I commend you for trying to navigate this difficult situation in a way that is respectful of your aunt's wishes. Western Society, especially the United States, has had real difficulty dealing with end of life issues and the idea of "dying with dignity".
81_Great_Dane post is a routine example of the struggle between patient autonomy and the propensity of family members/physicians "trying to do everything no matter what". I think we should thank him for hsaring his experience and hopefully it will help guide me.
MY opinion is that you really ought to have a clear conversation with your aunt regarding her reasoning for why she doesn't want to pursue further testing/treatment. Understand her wishes and goals for how she envisions the rest of her life. Doing so will give you more insight than anything we might have to offer. Please be mindful to LISTEN. It is her life and patient autonomy is of paramount importance. This will ultimately help you and her clarify her goals and give you a greater sense of peace.
I agree with the other posters that if she forgoes therapy i would recommend she get involved with hospice/palliative care. Explain that their goal is not to hasten her demise (as is erroneously believed by many) but instead help to make her live in a way that she wants.
There is definitely something to be said about foregoing treatment and just living it out. If that's how she wants it to be encourage her to get out and do things. Not just bucket list things (but yes, do those things now) anything to keep her active and her mind off it. I'd imagine there's a level of depression she's going through. This could take years and she shouldn't live like she's going to die any day. All the best to you and Aunty.
Obviously, Stage IV is bad. There are two types of lung cancer - small cell and non-small cell. Small cell is the more aggressive. It responds well to chemo the first time, but is more resistant after that. With non-small cell, the life expectancy is longer because the cancer is slower growing.
Based on what I researched, Stage IV, small cell with no treatment, you are generally looking at 2 to 4 months. With chemo, it can be 9 to 12 months. My mom died about 11 months after diagnosis. I don't know the stats for non-small cell offhand because we weren't dealing with that.
It sounds like she has her affairs in order. And that is very good. Although it is difficult, I would ask her about any final wishes she may have (funeral/cremation/burial) so that you can honor those wishes as well. I did that with my mom--she was living in Georgia and wanted to buried with my dad in NJ. She even picked out the outfit she wanted to be buried in. It seems a bit morbid, but it made it easier for me when the time came because I knew exactly what she wanted.
As for hospice -- they are a wonderful resource. The nurses who cared for my mother were amazing. And they supported me as well (I was my mom's caregiver for her final days). Your aunt's doctor will have to do the referral for hospice. And something to note: Medicare pays ALL costs involved with hospice--including a hospital bed, wheelchair, oxygen, medicine, etc.
Again, I'm so sorry you and your aunt are going through this. I won't lie, you have a tough road ahead. But it sounds like you have the right attitude of supporting her and respecting her wishes. Let her lead the way. I will keep you both in my thoughts.
MY opinion is that you really ought to have a clear conversation with your aunt regarding her reasoning for why she doesn't want to pursue further testing/treatment. Understand her wishes and goals for how she envisions the rest of her life. Doing so will give you more insight than anything we might have to offer. Please be mindful to LISTEN. It is her life and patient autonomy is of paramount importance. This will ultimately help you and her clarify her goals and give you a greater sense of peace.
I agree with the other posters that if she forgoes therapy i would recommend she get involved with hospice/palliative care. Explain that their goal is not to hasten her demise (as is erroneously believed by many) but instead help to make her live in a way that she wants. [/quote]
YES to all of this.
Cancer is such a mutha**cker. My oldest and best friend has stage three brain cancer and I've been heavily involved in that since day one. Surgery, checkups, treatments, etc. That's all fine, it's really just the worry and stress that gets me.
My business partner is now dealing with advanced prostate cancer as well. It's terrible, and his future [and the future of our 10 year endeavor] is all up in the air.
It's alot, and it's relentless, and it sucks, and that's the nature of the beast. You do the best you can when you can, and let the rest go...if you can.
If I have any piece of practical advice, I found a great site that helps make keeping anyone who might be concerned or interested stay connected, and you can also set up a gofundme easily through the site if you want to do any crowdfunding to help out with palliative or hospice care costs. It's caringbridge.org. It's free and very easy to use if you it's something that you think might be helpful. It's been a great tool for me to help raise funds for my friend and keep people who can't be in NYC in the loop.
Best of luck, bud. Here's hoping the Gmen can win a few for us during the rough times!