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NFT: Relative with Stage IV lung cancer that has spread to brain

Bold Ruler : Mod : 9/10/2019 12:34 pm
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.
So sorry for what you are going through  
Ron from Ninerland : 9/10/2019 12:52 pm : link
I had an aunt that passed away at age 85 from cancer about three years ago. As she got worse I had resolved to fly back east every two months to see her. The last time I saw her she seemed in reasonable shape given her condition. Then before I could get back too see her again she took a sudden turn for the worse, went into hospice and died within days before I could get to see her.

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.
I'm sorry to hear of the circumstances.  
Diver_Down : 9/10/2019 12:53 pm : link
I had a friend who just recently passed away from the initial diagnosis of stage IV lung cancer. It eventually spread throughout his body before his passing. He sought treatment and had some success under medical trial. The gut punch was of course that they are only trials to gather data to support a medicine's efficacy. They do not serve as an actual treatment. When the trial(s) ended, so did the medicine along with a progression of the cancer.

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 really appreciate you both writing  
Bold Ruler : Mod : 9/10/2019 12:59 pm : link
my thoughts are with you both for your own losses. This is very difficult.
So sorry for your situation  
BillT : 9/10/2019 1:06 pm : link
That kind of illness at that stage doesn't present many options for successful treatment no matter what.

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.
As Ron said, the symptoms affecting the brain  
Diver_Down : 9/10/2019 1:10 pm : link
will likely manifest with debilitating headaches, blurred vision, speech difficulty, and loss of train of thought.

Does she have anyone (friends) that can check in on her?
I have no worthwhile advice for you.  
Mr. Bungle : 9/10/2019 1:10 pm : link
But I'm very, very sorry your aunt and you are going through this. I can't imagine how difficult it is for you both right now.
Sorry to read that  
steve in ky : 9/10/2019 1:13 pm : link
.
She has a neighbor and she has a local friend  
Bold Ruler : Mod : 9/10/2019 1:16 pm : link
But we are looking into palliative care and hospice care. I feel rather helpless being so far away.
I had a grandparent (smoker for 50 years)  
Chris684 : 9/10/2019 1:17 pm : link
was diagnosed with lung cancer, caught it rather early however and was living with it, going to chemo treatments, etc. Doing quite well actually.

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.
Chris...thanks for this  
Bold Ruler : Mod : 9/10/2019 1:22 pm : link
I know there is no way of knowing but I'm trying to get my head around what I might be looking at. I'm sorry for you loss my friend.
RE: She has a neighbor and she has a local friend  
Diver_Down : 9/10/2019 1:25 pm : link
In comment 14570373 Bold Ruler said:
Quote:
But we are looking into palliative care and hospice care. I feel rather helpless being so far away.


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.
Good points and when she lost my uncle we put her affairs in order  
Bold Ruler : Mod : 9/10/2019 1:26 pm : link
I think we are largely set there. And I want her to have some bucket list items. Right now she just wants to stay at home where she feels secure.
RE: Chris...thanks for this  
jvm52106 : 9/10/2019 1:27 pm : link
In comment 14570389 Bold Ruler said:
Quote:
I know there is no way of knowing but I'm trying to get my head around what I might be looking at. I'm sorry for you loss my friend.


Thoughts with you bud!
Very sorry to hear  
SFGFNCGiantsFan : 9/10/2019 1:29 pm : link
Bold. Thoughts & prayers to you & your loved ones.
I  
AcidTest : 9/10/2019 1:39 pm : link
am very sorry for your aunt. God bless you for seeing her through this ordeal. Prayers to both of you.
Social media is changing the way  
NoPeanutz : 9/10/2019 1:51 pm : link
that patients and their families are living with the disease and its effects.
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 something similar  
ltbeatsall56 : 9/10/2019 2:34 pm : link
I don't have a medical background but it sounds similar to what my Mom went through earlier this year. Her breast cancer metastasized to her brain spine and lungs. She had two surgeries and radiation treatments but it looks like she's doing well now (fingers crossed) and carrying on with her life. Only a few years younger than your aunt. You should not give up trying to convince your aunt that it is treatable even if it sounds scary.
Went through something similar with my mother.  
81_Great_Dane : 9/10/2019 3:04 pm : link
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."
RE: I'm sorry to hear of the circumstances.  
Les in TO : 9/10/2019 3:18 pm : link
In comment 14570327 Diver_Down said:
Quote:
I had a friend who just recently passed away from the initial diagnosis of stage IV lung cancer. It eventually spread throughout his body before his passing. He sought treatment and had some success under medical trial. The gut punch was of course that they are only trials to gather data to support a medicine's efficacy. They do not serve as an actual treatment. When the trial(s) ended, so did the medicine along with a progression of the cancer.

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.
super sad, especially as he was doing all the right things. Cancer sucks
RE: Went through something similar with my mother.  
Bold Ruler : Mod : 9/10/2019 3:20 pm : link
In comment 14570563 81_Great_Dane said:
Quote:


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.
My Dad  
Fred in Atlanta : 9/10/2019 3:25 pm : link
had small cell lung cancer. He found out when he was having pain in the hip. That was around Easter, he passed in July. Once it started to effect him mentally it was just a few weeks.
I would talk to her  
Fred in Atlanta : 9/10/2019 3:27 pm : link
about Hospice care, but they would probably need a diagnostic. At least to be able to get pain medication.
RE: I would talk to her  
Bold Ruler : Mod : 9/10/2019 3:46 pm : link
In comment 14570599 Fred in Atlanta said:
Quote:
about Hospice care, but they would probably need a diagnostic. At least to be able to get pain medication.


Good point here Fred. I'm surprised they didn't diagnose without the biopsies...or maybe that's obvious. I don't know.
Treatment options are better than ever.  
WideRight : 9/10/2019 4:04 pm : link
Brain mets are now well controlled with radiosurgery, and the lung cancer can be treated with immunotherapy. Quality of life is surprisingly good, particularly in someone under 65 who has been caring for themselves. And NJ has state-of-the art care at many locations.

Its worth looking into
I hear you Wide Right  
Bold Ruler : Mod : 9/10/2019 4:25 pm : link
Issue is she doesn't want any treatment. At all. And she doesnt take care of herself. She smokes a lot...eats poorly is 5' tall and about 90 lbs. I wish this was different but she doesnt want any treatment. I'm guessing she won't be able to last long.
Cancer sucks and can surprise anyone  
jamison884 : 9/10/2019 5:34 pm : link
I had renal cell carcinoma (diagnosed at age 28) for many years based on the physical size of the tumor on my kidney, and yet I had no symptoms. It was stage 3, but didn't have any impact on me. Luckily is was a rare subtype (chromophobe), which is less likely to metastasize.

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.
To OP  
Festina Lente : 9/10/2019 5:57 pm : link
ON Diagnosis: based on the little that you've mentioned all anyone has is a strong suspsicion of Stage IV Cancer. The type of cancer, if it even is a cancer vs some rare dissmenitating disease, and subtypes of cancer can only be adequately diagnoses in most cases with tissue sample (biopsy). Not only is it needed to confirm the origin of the cancer (e.g. that it is indeed from the lung instead of somewhere else not easily detected radiological) it gives information about the kind of lung cancer and the biomolecular markers involved all of which affect treatment options and prognosis.

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.
Horrible to hear Bold.  
BigBlue in Keys : 9/10/2019 6:02 pm : link
Does she have any type of support where she is? Friends to talk to, a pastor or Dr she trusts even? It's got to be a lot to wrap her head around and just internalizing it won't help. I'm sure it's a major inconvenience but if you could even get away for a few days to go see her I'm sure that'd be a huge comfort. If you can't keep checking in with her, and not just 'how are you feeling today?' Tell her what's going on with your day, things your going through, or other things she's interested in. Find out what she likes on TV and start watching and discuss that. Try and keep her mind out of the constant "cancer bubble". It really sucks and it's really scary man.

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.
You guys are truly wonderful  
Bold Ruler : Mod : 9/10/2019 6:37 pm : link
I have read each word carefully. I appreciate this. She is pretty much alone in this quasi-cabin in Randolph, NJ. I spoke with her again today. She just wants to sit in her home, she doesnt want treatment. She has a few friends and hospice was there today. She is having trouble walking (now using a walker), has blurred vision, had the seizure last week. So I dunno..its hard to watch it happen.
I'm so sorry Bold  
hocuspocus : 9/10/2019 7:34 pm : link
I just went through this with my mom. She was diagnosed with Stage IV small cell lung cancer in July 2018. She did chemo from August to December and was doing very well. In March of this year, they found 4 spots on her brain. She had whole brain radiation. In April her doctor told her she could try immunotherapy or he could call in hospice. She tried the immunotherapy, but it didn't work for her, so she stopped all treatment in late May. Hospice was called in and she died about 10 days later.

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.
RE: To OP  
hocuspocus : 9/10/2019 7:37 pm : link
In comment 14570838 Festina Lente said:


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.
These are truly thoughtful and caring responses  
Bold Ruler : Mod : 9/10/2019 9:01 pm : link
thank you all. Truly grateful for all of you. Yes, she has started the process of palliative and hospice care. Hospice was there today. I'm not pushing anything at all...its just upset.
Best wishes to you Bold  
ChathamMark : 9/10/2019 9:11 pm : link
My Mom had lung cancer, fought it for 7 months, then went quickly. Hoping the best for you and your Aunt in this troubling time.
Wow Bold it sounds really bad.  
BigBlue in Keys : 9/10/2019 10:31 pm : link
Ask her about good times in her life/childhood. Favorite gifts she got as a kid, happy memories she has. Ask for stories about your mom/dad and her parents/grandparents. If she responds positively ask her to write them down to preserve your families history. Or find a way to record her stories, you seem to be good with technology :) You described the experience perfectly in your OP, it is OVERWHELMING. Keep your own mind positive, and take it as a good reminder to live your life to the fullest.
Hey Bold  
GiantSteps : 9/11/2019 12:54 pm : link
Sending you a post of support. Looks like you're doing all you can, and kudos to you for it.

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!
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