When a person “accepts” metastatic cancer and declines intervention

[Laura Corin]

21 minutes ago, JFSinIL2.0 said:

Note, my MIL, who declined trying to extend life, was very devout Catholic ( one of my SIL is a Dominican sister), while the neighbor who had to try and make it for her young family did not believe in an after life.  So maybe whether or not one believes they will see loved ones later is part of the decision?

I'm sure it can be.  My father was an atheist who just made the a rational decision to enjoy his last months as far as he could, rather then pursue further treatment.

[maize]

My brother in law just got the word on Friday that his doctors have nothing more to offer in treatment for his cancer. 

He did fight, he is only in his fourties and has young children still. The treatment though likely shortened his life.

Not an easy decision under any circumstances.

[Catwoman]

4 hours ago, Pawz4me said:

The oncologists we spoke with, including the one we chose, all handled it with a variation of this: They explained his first line treatment options and followed up with some version of "And if you don't want any treatment--and some patients with this type of cancer certainly do choose to not have treatment--then you probably have about a year before you start experiencing life altering symptoms."

Followed by patient silence that they waited for DH to fill.

And then the oncologist we chose went on to explain the statistics for the first line treatment--how many people have some statistically significant shrinkage of their mets, how many have stability, and how many have to quit that treatment because their cancer worsens or they experience intolerable side effects. He told us about his own patients' experiences with the drug, including the shortest and longest times it had worked, the most common side effects, etc.

It was all very fact based with little/no emotion and certainly no talk of "fighting" or being overly positive, and certainly no rah rah cheerleading. None of the oncologists did that. Pretty much the polar opposite of what you seem to have experienced.

We've also had the polar opposite experience in terms of palliative care. Perhaps it's been awhile since your experiences? Or perhaps your experiences were at a not-so-great cancer center? Now it's ALL about the palliative care. And no, being under treatment doesn't rule out palliative care. It's pushed hard. Maintaining quality of life is a huge priority.

FWIW, the cancer forum I belong to probably has a couple of hundred active participants, and our experience is not unique at all. Sure people report "bad apple" oncologists sometimes, but it's much more the exception than the rule. But this is a relatively rare type of cancer, and most patients have specialist oncologists. It's not like the much more common cancers (breast, colon, etc.) where any run-of-the-mill, generalist oncologist will have the experience to treat. So that may be a factor, too. 

 

This has been our family’s experience as well. 

One thing I am wondering about the people who say they weren’t given realistic information and were told to keep fighting even when the situation was actually quite hopeless... did they actually ask their doctors for the statistics about their disease and what their odds of survival were for different treatment options? When they pressed the doctors for details, did the doctors refuse to answer their questions?

I only ask this because it seems odd to me that oncologists and surgeons would flat-out lie to their patients if the patients and their family members directly asked for information. Maybe we have just been very lucky, but between my dh and other close family members, we have dealt with many, many doctors and several hospitals in different states, and we have never experienced the issues I’m reading about on this thread. I wonder if our assertiveness, proactive attitude, and insistence on detailed explanations have made a big difference for us. 

I know there are bad doctors out there, and certainly some people have the bad luck of getting those doctors, but I would think that the majority of them truly want to help their patients and don’t want to deceive them or see them suffer needlessly. 

[wathe]

4 hours ago, Pawz4me said:

The oncologists we spoke with, including the one we chose, all handled it with a variation of this: They explained his first line treatment options and followed up with some version of "And if you don't want any treatment--and some patients with this type of cancer certainly do choose to not have treatment--then you probably have about a year before you start experiencing life altering symptoms."

Followed by patient silence that they waited for DH to fill.

And then the oncologist we chose went on to explain the statistics for the first line treatment--how many people have some statistically significant shrinkage of their mets, how many have stability, and how many have to quit that treatment because their cancer worsens or they experience intolerable side effects. He told us about his own patients' experiences with the drug, including the shortest and longest times it had worked, the most common side effects, etc.

It was all very fact based with little/no emotion and certainly no talk of "fighting" or being overly positive, and certainly no rah rah cheerleading. None of the oncologists did that. Pretty much the polar opposite of what you seem to have experienced.

We've also had the polar opposite experience in terms of palliative care. Perhaps it's been awhile since your experiences? Or perhaps your experiences were at a not-so-great cancer center? Now it's ALL about the palliative care. And no, being under treatment doesn't rule out palliative care. It's pushed hard. Maintaining quality of life is a huge priority.

FWIW, the cancer forum I belong to probably has a couple of hundred active participants, and our experience is not unique at all. Sure people report "bad apple" oncologists sometimes, but it's much more the exception than the rule. But this is a relatively rare type of cancer, and most patients have specialist oncologists. It's not like the much more common cancers (breast, colon, etc.) where any run-of-the-mill, generalist oncologist will have the experience to treat. So that may be a factor, too. 

I know this is the sort of discussion that happens routinely at our cancer centre.  I also know that many patients and families just don't or can't really hear it, or just can't or don't or process the information somehow, and come away with a very distorted understanding of their illness.  The heavy emotional burden of the illness can make good communication and understanding very difficult.

Quill, I second (and third and fourth) the recommendation to read "Being Mortal".  It should be required reading for all cancer patients and their families. 

[vonfirmath]

I hope if I was diagnosed with cancer I could hear what the doctor was saying, but I'm afraid I might not be able to. And in that case, I'm not sure my husband would be much better, though normally he's the one I take along to help me process what is actually said versus what I think is being said.

[Liz CA]

19 hours ago, Æthelthryth the Texan said:

I know this has to be a sensitive place for you with your recent treatment.......but I worked in oncology and genomics for many many years. And I have seen advanced stage breast cancer treatment very often lead to quite more torment, pain, and suffering for the same outcome at the end, and that's death. Except for you (not youyou, but them) didn't get to enjoy the last bit because you were in the hospital for a last ditch effort the entire time. 

Everyone dies eventually and some would rather do it on their terms, so to speak, rather than wrung out, drugged out, and in a hospital anyway. So I don't think someone making that decision to not treat is nuts at all- regardless of what stage. Physicians are really great at some things- they are not always great at communicating the downsides and risks of cancer treatment, and often the treatment is more brutal than the disease. That is something that has gotten really obfuscated in the US and it bothers me on a really deep level. And sometimes the disabilities caused by the treatment mean a not wonderful life left to suffer through after treatment. So I think in this case, you have to let it go and trust them to be an adult over their life. Be supportive and make your peace if you can., but honestly, since you're asking our opinion, my opinion is you need to stay out of it. It's their battle to chose or walk away from, and there is no cancer treatment on this earth that is not without sizable risks and adverse events, so it's not an equitable thing to suicide. It's not like there's a magic treatment that ensures all will be okay and they're simply choosing not to do it. To some people, it's the graceful decision that allows them some sort of control instead of handing it over to a bunch of doctors. Just my 2 cents, being intimately involved in the field, though not on the same level as you as a patient. 

 

I was going to write this in its very essence but The Texan already expressed it better than I could have.

[GoVanGogh]

I had two very close family members die from aggressive cancers, both fought with aggressive treatments until the very end. They had no quality of life at all. It comes down to quality over quantity, I think. Watching their journey has left me with very specific ideas about what I myself would do and that is to decline treatment.  I have talked with others in our family and they all have said the same thing. The added days, weeks are not worth the loss of quality of life.  It comes down to dying on your own terms and that is powerful in the end  

When my FIL was diagnosed with terminal cancer two years ago, his family wanted him to continue treatments, even past the point where the doctors were saying they had nothing left. My DH wouldn’t accept not fighting the cancer.  It was much harder on him, even though he was by my side when my family members had cancer, he could not grasp not fighting. But it isn’t not fighting, it is deciding to fight it from a different angle. 

Blessings to you, Quill. 

[Pawz4me]

14 minutes ago, vonfirmath said:

I hope if I was diagnosed with cancer I could hear what the doctor was saying, but I'm afraid I might not be able to. And in that case, I'm not sure my husband would be much better, though normally he's the one I take along to help me process what is actually said versus what I think is being said.

It would be great if every cancer patient had an advocate who could and would do the research necessary and be ready to step in when necessary. I think I make a very good advocate, and honestly DH needs it. He's done zero research, wouldn't know the right questions to ask if I didn't prompt him before each appointment, etc. He's not in denial by any stretch of the imagination, but he likes his doctor and he's happy to do what he's told and live each day w/o worrying about the what ifs or whether every little pain might be ominous. And that's great for him. I can do the research and worry about all the other stuff, and I'm glad I can take on that role for him.

 

7 minutes ago, GoVanGogh said:

Watching their journey has left me with very specific ideas about what I myself would do and that is to decline treatment. 

What everyone should remember, though (IMO of course) is that not all cancers are alike, even the aggressive ones. There are different treatments for different cancers, some of which have pretty much zero impact on quality of life other than the time it takes to get the treatment. Also, to treat or not treat is not a one time decision. It's not as if a patient can't try treatment and see how it goes. You can stop at any time. At every single appointment DH has the doctor asks about quality of life.

[EKS]

My elderly FIL decided to fight lung cancer.  Now, looking back on it, it is pretty apparent that the treatment not only made the quality of his remaining time on earth far lower, but that it most likely *shortened* his life.  Interestingly, his original oncologist suggested going with palliative care but all the family heard was "Your life is not worth fighting for."  They dropped that oncologist like a hot potato, and went with one who suggested an aggressive treatment plan, which, everyone now agrees, was a huge mistake.

Cancer sucks, and once it has metastasized, it sucks even more.  

Like the others, I highly recommend the book Being Mortal--not just for cancer patients, but for *everyone*.

 

[Liz CA]

19 hours ago, happysmileylady said:

I know 2 people who "gave up." 

 

 

I don't view it as "giving up." Sometimes you gain months of comfortable living versus post treatment agony. And I have witnessed this first hand with someone who chose to decline intervention and passed very peacefully. Her cancer did not cause her any pain but even in those cases when it does cause pain, there are other options to alleviate the pain so you can still have some quality of life.

19 hours ago, Quill said:

Thank you for your whole post. It does help me a lot. And yes, I do think it’s touchy for me because of what I just went through. 

One thing that bothers me is I don’t think the ill person has been direct with medical personel. Appointments get cancelled and no rescheduled, and then this person expresses worry that the doctor is going to chastize them. I feel like, if the choice is not to do battle, then maybe this person should be discussing this POV with medical personel instead of just behaving sort of unreliably. I’m also sure there is emotional support available for this decision, but not if they don’t actually make it known. 

 

Sounds like this person may have made up her mind but is dreading to confront doctors. Some of the docs can be very aggressive (in the way they think they are helping you) and if a person is less assertive or just still trying to come to terms with the diagnosis, it may not be a conversation s/he wants to have right now.

I do understand that it's frustrating to guess for you and to watch this unfold without absolute clarity. In your case, you had an excellent prognosis and outcome and surgery sometimes has fewer after effects than the harsh treatment of chemo. I know people who have opted for the surgery but not the chemo afterwards.

[DesertBlossom]

I have mentioned it before in this forum, and don't have time for all the details-- my mom had cancer and in hindsight we realized her cancer had already mestastized (sp?) before she began her original chemo treatment. She never had a chance, really. I am so jaded by her experience, the misguided optimism of her oncologist, endless treatments that aggravated her cancer and made it come back worse, and her ultimate death that if *I* am ever diagnosed with cancer, but gut reaction would be to leave it alone.

But that's just me.

[DesertBlossom]

33 minutes ago, EKS said:

My elderly FIL decided to fight lung cancer.  Now, looking back on it, it is pretty apparent that the treatment not only made the quality of his remaining time on earth far lower, but that it most likely *shortened* his life.  Interestingly, his original oncologist suggested going with palliative care but all the family heard was "Your life is not worth fighting for."  They dropped that oncologist like a hot potato, and went with one who suggested an aggressive treatment plan, which, everyone now agrees, was a huge mistake.

Cancer sucks, and once it has metastasized, it sucks even more.  

Like the others, I highly recommend the book Being Mortal--not just for cancer patients, but for *everyone*.

 

I absolutely believe that cancer treatments killed my mother faster than the cancer would have killed her.

[happi duck]

I am angry.

Those of you who are so pleased with yourselves that you were so assertive and proactive...those who can so quickly blame the patient and care givers for choosing not to hear the truth...can you please instead feel lucky that you had decent doctors?  It wasn't you.  You just lucked out.  Seriously.  You lucked out.

I was my sister's poa.  I was the one making appointments, phone calls etc.  I have a notebook full of everything.  None of my assertiveness or proactiveness yielded the right information.  Straight forward questions about prognosis and stage were met with "we don't talk about that".  She ended up in a different hospital and those doctors couldn't get info from that office.  It was a mess.

my other sister died of the same cancer 15 months prior.  No one was in denial of the seriousness.  I literally begged for information. 

Don't blame those who've been hurt because you've had good luck with doctors being decent.

Jawm.  

[Pawz4me]

24 minutes ago, Æthelthryth the Texan said:

This is very important I think and wish it was better explained in general. A person's individual genetics can be a deal breaker on who responds to which treatment or medication even within a similar tumor type. In some cases the standard protocols only make the situation worse, which is why there has been such a push towards individualized medicine. As genomic sequencing has dropped in price- going from well over a million just over a decade+ ago to bargain basement now (which is why you can have 23andme etc.)- and it has shown some spectacular errors in what was assumed previously as gold standard of treatments. That's going to continue to change, but they still haven't cracked the codes. It's not that simple. 

We definitely need to get better on figuring out which treatments work for which cancers (and ditto for other illnesses, too). But part of what I was getting at are things we already do know --

Subtype matters. Some are much more treatable than others.

Grade matters. There is grading even within stage IV cancer, and a grade 1 or 2 metastatic cancer is much more likely to be fairly easy to control for a longer period of time than a grade 4 cancer.

It's very much a big picture decision, not a small, simple picture.

[happi duck]

I took notes, practically transcripts.  Medical staff were surprised and pleased.  

[Cecropia]

There's a PBS Frontline documentary on "Being Mortal" that I believe is still available for streaming to anyone.  (Note: I can't watch it without tissues ready)

https://www.pbs.org/wgbh/frontline/film/being-mortal/

[Catwoman]

2 hours ago, happi duck said:

I am angry.

Those of you who are so pleased with yourselves that you were so assertive and proactive...those who can so quickly blame the patient and care givers for choosing not to hear the truth...can you please instead feel lucky that you had decent doctors?  It wasn't you.  You just lucked out.  Seriously.  You lucked out.

I was my sister's poa.  I was the one making appointments, phone calls etc.  I have a notebook full of everything.  None of my assertiveness or proactiveness yielded the right information.  Straight forward questions about prognosis and stage were met with "we don't talk about that".  She ended up in a different hospital and those doctors couldn't get info from that office.  It was a mess.

my other sister died of the same cancer 15 months prior.  No one was in denial of the seriousness.  I literally begged for information. 

Don't blame those who've been hurt because you've had good luck with doctors being decent.

Jawm.  

 

I really think you read our posts with too much raw emotion, because I am certain none of us meant to sound smug or to be hurtful in any way. It sounds like everything went wrong for your sister, despite your having done everything right. I don’t think anyone said that there aren’t bad doctors. I think what we were saying is that we have known people who didn’t ask followup questions when they spoke with their doctors, and who didn’t really want to know the truth about their prognosis, or who simply weren’t either emotionally or intellectually able to deal with all of it, and/or they didn't have good advocates to stand up for them, so it may not always be fair to blame the doctors and hospitals.

As for luck, I absolutely agree that it’s a big part of the equation, particularly when things are moving very quickly and there simply isn’t time to go from place to place and get several opinions. You’re stuck because time is of the essence and there is no time to waste. And even with the best doctors, like the team my dad had, sometimes people still die like my dad did. Sometimes, even having great doctors and all of the latest and greatest treatments still just don’t work. Cancer sucks.

[Tree Frog]

3 hours ago, Æthelthryth the Texan said:

If you were on a clinical trial, then yes- not completing the treatment exactly as prescribed could result in your data being thrown out from the analysis. If that happens enough at a particular site it can make them unattractive for future studies, both research and pharmaceutically based. So they definitely have a vested interest in getting you to complete if at all possible- but for both your treatment, to give you the best known chance at survival, and for their numbers.

Shouldn't she have known if she was in a clinical trial? Wouldn't the doctor need to notify her? Not knowing you're in a trial would make me suspicious and could be a conflict of interest for the doctor.

Quill, I'm sorry to hear this about someone who's close to you. 

[Murphy101]

3 hours ago, happi duck said:

I am angry.

Those of you who are so pleased with yourselves that you were so assertive and proactive...those who can so quickly blame the patient and care givers for choosing not to hear the truth...can you please instead feel lucky that you had decent doctors?  It wasn't you.  You just lucked out.  Seriously.  You lucked out.

I was my sister's poa.  I was the one making appointments, phone calls etc.  I have a notebook full of everything.  None of my assertiveness or proactiveness yielded the right information.  Straight forward questions about prognosis and stage were met with "we don't talk about that".  She ended up in a different hospital and those doctors couldn't get info from that office.  It was a mess.

my other sister died of the same cancer 15 months prior.  No one was in denial of the seriousness.  I literally begged for information. 

Don't blame those who've been hurt because you've had good luck with doctors being decent.

Jawm.  

 

I 100% agree with you. 

I’m pretty sure I’d lose my ever lovin’ sh!t if staff was so condescending as to tell me “we don’t talk about that” because I did with my mom. I’m so angry for you.

When staff refuse to communicate or can’t seem to achieve basic organizational skills - there’s almost nothing a patient or their advocates can do about it. What ya gonna do - sue? Yeah. Right. Like anyone can afford that after the medical bills or can do it before they die. 

 

Eta - While I do think happi is emotionally tender on this, with good cause, that s doesn’t make her points invalid. It ties to that whole “fight” rhetoric. I don’t think anyone does it intentionally, but that doesn’t change the damage.

Edited June 25, 2019 by Murphy101

[Tree Frog]

9 minutes ago, Æthelthryth the Texan said:

She should yes, as there would have been a zillion consent forms and things outlined by the staff involved before she could be enrolled. But she had it in question marks, so I don't know what the specific situation was. There are basically two primary types of clinical trials, which would be interventional and observational, and  some people use terms interchangeably (or use the vague word "study") so without specifics, I can't tell. You can be in an observational study and it simply be longitudinal without any type of experimental/trial drug aspect. You'd still need to sign a consent to use your trial for medical research, but with all of the paperwork people sign throughout treatment I can see how that can pass by if it's not something like an intervention based trial. 

 

5 minutes ago, Æthelthryth the Texan said:

Oh and if a doctor ever enrolled someone in a trial without consent, they risk their medical license, debarment, and that's not to mention having their site blacklisted by the FDA which is not a minor matter. 

Thank you. 

[Laura Corin]

This is interesting, I think

https://www.theguardian.com/society/2019/jun/25/soul-midwives-felicity-warner-end-of-life-care?CMP=Share_AndroidApp_Copy_to_clipboard

[Guest]

1 hour ago, Arctic Mama said:

Well that just made me ugly cry.  So good, though, and given that I lost two members of my church family to cancer in the last two weeks, timely.  One was a homeschooling mama who was my age - 33.  They’re with the Lord now, but it was very difficult, still.

I’m sure it would me, too. I am reading Being Mortal and some parts are almost unbearable to read. Like the elderly doctor, retired from getiatrics, taking care of his wife, Bella, (such a beautiful name) as she goes blind, loses her mental bearings, goes deaf and then breaks both legs in a fall. Then, four days after her casts come off she dies! I can hardly bear to read it. I’m thinking of my person and it’s very hard for me to come to grips with anyone suffering like that. 

[HS Mom in NC]

I didn't read the responses.  I will later.

My husband's sister was diagnosed with breast cancer in her mid 30s when her kids were 1 and 5.  She died of "everything" cancer a couple of years ago when her kids were 12 and 16. She fought hard, but people have limits.  Treatment has limits.  She was really suffering there at the end and while the treatment had done wonders for her for a decade, buying her every minute it could with her kids, further treatment would only prolong her misery.  She told everyone she was done fighting it and just wanted to try to enjoy what little she could at the end. We all supported her in it. 

Cancer sucks.

Edited June 26, 2019 by Homeschool Mom in AZ

[Tree Frog]

22 hours ago, Farrar said:

Of course they don't have crystal balls. And of course there is often a chance. Cancer is not a death sentence anymore, not for most patients. I'm really glad for that. But they do often have a sense of what the real chances are. And in my experience with a number of relatives with cancer, they do not share those. Whether it's a really good prognosis or a really bad one or somewhere in between, the recommendation and conversation is a flat same - most aggressive treatment, lots of hope. 

In the case of one relative, it was completely obvious after a cancer recurred that there was no treatment. None. But some doctors still wanted to try new things and keep going. Thank goodness this relative had a medical advocate who got them to understand that the odds were nothing. There were no odds.

I'm trying to picture how the conversation you're talking about would even go or make any sense. Like, the doctor is going to say, do you really want to know? And the patient is going to say, no, not really, so then the doctor says, there's a lot of hope? I mean, what person would then think there really was a lot of hope? How does that make any sense? Or the patient says, I don't really want to know and the doctor says, I won't tell you, but let's do the most aggressive treatments possible and really put you through the wringer. How is that humane if the person has an advanced, aggressive cancer with no real hope? So then it's really just their "gut" feeling. Well, I think we know what the doctor's gut feeling is every time - try to save the patient. Because, after all, they are not the ones who will suffer. I'm sorry, but doctors have a huge bias in this arena. And they actively discourage things that would help, like calling in palliative care consults for pain and comfort - because they're encouraging patients to be "warriors." And studies show this shortens patients' lives on average, not to mention that the remaining lives they have are filled with pain, because the treatments we have are just painful, as you know.

If someone wants to, in the middle of a discussion about treatments and prognoses, actually call out, stop talking, I don't want to know, do whatever you want, then fine. I'd respect that relinquishing of agency. But short of that, doctors should be honest. And part of a diagnosis for a late stage cancer should always, always include a discussion of these issues in a frank way.

My sister's MIL is that way. She was diagnosed with breast cancer, but denies it. She talks about the pain increasing and her increasingly limited arm movements and shows my sister her mis-shapen breast, but she doesn't have cancer. She refuses to return to the doctor because he will tell her she has cancer. And she doesn't. She is sure of it. She also won't go on palliative care because she's not dying. Sometimes it's easier to ignore the diagnosis. 

[teachermom2834]

My mom had glioblastoma. Zero hope of recovery. We were told twelve months without treatment or 18 months with surgery/radiation/chemo. Easy call for our family. Why go through all that for six months? 

It was so difficult to choose not to treat. They kept scheduling physical therapy, biopsies, etc etc: We had to keep explaining that we were not pursuing treatment. My mom was already so compromised mentally. We weren’t putting her through physical therapy let alone brain surgery and radiation and chemo. We had a difficult time getting hospice because we had to have the surgeon sign off that she would not recover and he wouldn’t return our calls. 

It was unbelievable how difficult it was to not treat an aggressive brain tumor that had already taken many mental faculties and for which there was zero chance of recovery.

She was gone a month from the first time we noticed something was “off”. It was bad.

I know this is not the same as the OP situation but it was an eye opening experience. It shouldn’t have been so hard to just get her palliative and/or hospice. 

[Arcadia]

10 hours ago, vonfirmath said:

I hope if I was diagnosed with cancer I could hear what the doctor was saying, but I'm afraid I might not be able to. And in that case, I'm not sure my husband would be much better, though normally he's the one I take along to help me process what is actually said versus what I think is being said.

 

I can accessed oncologist visit notes on my online health account. I could also access all my test records as well. It’s so helpful when we ask my oncologist lots of questions and can check back the visit notes for his answers. More than twenty of my middle school classmates are doctors so sometimes I ask them to clarify.

[Arcadia]

My relatives gave up when there was negligible chance of remission. For them it’s a case of 

1) not wanting their last months to be endless rounds of hospital stays and doctors visits

2) needing their children to help with care because home aide is costly and feeling bad about burdening their children 

3) wanting to leave some life savings for their surviving spouse or children instead of depleting all life savings on medical bills

My late younger cousin (Roman catholic) was suffering during the last months of leukemia. It’s heartbreaking but we have to make peace that God has other plans.

[Liz CA]

7 hours ago, happysmileylady said:

Well, I put "gave up" in quotes because I was using a very general term, when in reality all the situations are all different.   I don't think that deliberately choosing not to treat an aggressive illness where the treatment can be as bad or worse than not treating is a "bad" thing necessarily, so I don't want my use of "give up" to imply that.  I think that all situations are different and the different circumstances need to all be considered on the individual basis that they have....because every single case is different.  

 

I figured as much as I saw the quotation marks. But I wanted to say something anyway because I always have this visceral reaction when I read an obit saying something like "...lost his/ her battle with cancer." I want to scream "lost what? Because they didn't fight hard enough?" This is not something that all of us can survive if we only fight long and hard because as you said every situation is different.

1 hour ago, teachermom2834 said:

My mom had glioblastoma. Zero hope of recovery. We were told twelve months without treatment or 18 months with surgery/radiation/chemo. Easy call for our family. Why go through all that for six months? 

It was so difficult to choose not to treat. They kept scheduling physical therapy, biopsies, etc etc: We had to keep explaining that we were not pursuing treatment. My mom was already so compromised mentally. We weren’t putting her through physical therapy let alone brain surgery and radiation and chemo. We had a difficult time getting hospice because we had to have the surgeon sign off that she would not recover and he wouldn’t return our calls. 

It was unbelievable how difficult it was to not treat an aggressive brain tumor that had already taken many mental faculties and for which there was zero chance of recovery.

She was gone a month from the first time we noticed something was “off”. It was bad.

I know this is not the same as the OP situation but it was an eye opening experience. It shouldn’t have been so hard to just get her palliative and/or hospice. 

 

BIL had also glioblastoma. They sent him through countless rounds of chemo. At the time of diagnosis they said "not curable but treatable." I immediately said to dh and oour niece "What is this supposed to mean? We can treat it for a while until we cannot anymore?" It just didn't sound like it was a maintenance thing that you cannot cure but live with indefinitely if taken care of. He lived about 18 months, went through the horrors of treatment, his wife and children suffered alongside with him and then he passed away. 

Edited June 26, 2019 by Liz CA

[DesertBlossom]

One thing that still upsets me about my mom's oncologist's optimism is that none of us were willing to be the Debbie Downer and ask, "well, what if you die?" Nobody wanted to be the one to say out loud that she might not get better, even though many of us were thinking it.   I wish we had spent those years helping her tell her life story or explaining to us the stories and sentiments behind jewelry and her ancestors' artifacts. There are so many things I wish I could have asked her, but I didn't have the heart to let on that I thought she would die. By the time my sister sat down with her with a tape recorder to ask her stories about her life, she was in a lot of pain and it was difficult for her to remember things. But I am so glad we have at least those few recordings. 

I just wish the doctor had been honest with her because I felt like he let her believe that every next treatment would be the one to cure her. She battled for years. And when he finally admitted that it was over, she only had a few pain-filled weeks to live.

[Liz CA]

18 minutes ago, DesertBlossom said:

One thing that still upsets me about my mom's oncologist's optimism is that none of us were willing to be the Debbie Downer and ask, "well, what if you die?" Nobody wanted to be the one to say out loud that she might not get better, even though many of us were thinking it.   I wish we had spent those years helping her tell her life story or explaining to us the stories and sentiments behind jewelry and her ancestors' artifacts. There are so many things I wish I could have asked her, but I didn't have the heart to let on that I thought she would die. By the time my sister sat down with her with a tape recorder to ask her stories about her life, she was in a lot of pain and it was difficult for her to remember things. But I am so glad we have at least those few recordings. 

I just wish the doctor had been honest with her because I felt like he let her believe that every next treatment would be the one to cure her. She battled for years. And when he finally admitted that it was over, she only had a few pain-filled weeks to live.

 

Oh, this had to be hard. I am so sorry. HUGS!

[YaelAldrich]

I hear the people who say they don't want to prolong their lives with treatment if their life will be compromised, but no one knows if there will be negative consequences with treatment and you might live longer.  My mother's cancer (cholangiocarcinoma) is only Stage II but the prognosis with treatment is still 12-18 months (and we are more than six months into it) or six months to a year without treatment.  She reluctantly tried chemo (gem-cis) because she watched my sister suffer through chemo twice with BC. She's had no outward issues with the treatment (she still volunteers/goes to church multiple times a week, walks an hour a day, gardens, etc).  Her blood counts are going down though and she caught pneumonia three weeks ago.  But this allowed us to go to LA on a mother-daughter trip in May and I hope I can convince her to go to visit her family in Korea next month and a beach vacation in August.  Honestly, Stage IV cancer or a cancer like my mother's will kill and most likely the death will not be "pretty".  I'm happy she tried the chemo and understand that the minute it makes her life unhappy she will stop, but knowing we've gotten a couple more months together without undue pain makes me happier.

[Ausmumof3]

16 hours ago, Catwoman said:

 

This has been our family’s experience as well. 

One thing I am wondering about the people who say they weren’t given realistic information and were told to keep fighting even when the situation was actually quite hopeless... did they actually ask their doctors for the statistics about their disease and what their odds of survival were for different treatment options? When they pressed the doctors for details, did the doctors refuse to answer their questions?

I only ask this because it seems odd to me that oncologists and surgeons would flat-out lie to their patients if the patients and their family members directly asked for information. Maybe we have just been very lucky, but between my dh and other close family members, we have dealt with many, many doctors and several hospitals in different states, and we have never experienced the issues I’m reading about on this thread. I wonder if our assertiveness, proactive attitude, and insistence on detailed explanations have made a big difference for us. 

I know there are bad doctors out there, and certainly some people have the bad luck of getting those doctors, but I would think that the majority of them truly want to help their patients and don’t want to deceive them or see them suffer needlessly. 

In my mums case it was 25 years ago and I don’t believe it was deliberate misleading just that not a lot was known about it at that time.  The surgeon also most likely made an error but refused to release medical files.

im going off family lore to some degree because I was too young at the time to know everything going on. 

I do believe that in recent times the discussion has advance from just “cure” to ongoing quality of life.  There’s a lot more understanding.

[Guest]

6 hours ago, Liz CA said:

figured as much as I saw the quotation marks. But I wanted to say something anyway because I always have this visceral reaction when I read an obit saying something like "...lost his/ her battle with cancer." I want to scream "lost what? Because they didn't fight hard enough?" This is not something that all of us can survive if we only fight long and hard because as you said every situation is diffe

It’s interesting to me that you and other members feel this way about “lost the battle.”  I have not ever experienced that as an implication that the person didn’t fight hard enough, long enough or quit. Some illnesses are deadly; that’s just the reality. 

One young girl around here died after eight recurrences of cancer, a rare sarcoma whose name I don’t remember. During the time she was undergoing treatment, her father used her quote, “I’m not a give-upper” on shirts and blog posts as a source of inspiration. When she did ultimately die, it didn’t seem to me like, “well, I guess she gave up after all.” No; it was just more than her body could do any further. 

Maybe part of the problem in modern societies is the notion some seem to have that medical assistance can fix any problem. We aren’t very good at accepting that people die, we all die, and sometimes, that cannot be helped. 

When my FIL went through cancer after it had metasticized, dh and several of his siblings felt the chemo is what actually killed him. They may have chosen differently if they had understood how improbable it was he would recover and how sick and emaciated the chemo would make him. 

[Guest]

5 hours ago, DesertBlossom said:

One thing that still upsets me about my mom's oncologist's optimism is that none of us were willing to be the Debbie Downer and ask, "well, what if you die?" Nobody wanted to be the one to say out loud that she might not get better, even though many of us were thinking it.   I wish we had spent those years helping her tell her life story or explaining to us the stories and sentiments behind jewelry and her ancestors' artifacts. There are so many things I wish I could have asked her, but I didn't have the heart to let on that I thought she would die. By the time my sister sat down with her with a tape recorder to ask her stories about her life, she was in a lot of pain and it was difficult for her to remember things. But I am so glad we have at least those few recordings. 

I just wish the doctor had been honest with her because I felt like he let her believe that every next treatment would be the one to cure her. She battled for years. And when he finally admitted that it was over, she only had a few pain-filled weeks to live.

This is part of what upsets me about my circumstance. The person is not saying or telling people death is on the near horizon. So we’re losing time to do or say things we might want to have done. This person is not a fact-facer under the best of circumstances. Part of me wants to level and ask directly. But I’m chicken. 

[Jean in Newcastle]

Now I did know two people who had early stage very treatable cancers who treated them with crystals and herbs. Both went for “treatment “ in Mexico (nothing wrong with good treatment there but these were unregulated clinics). Both were convinced that they were utterly healed until they discovered that it had actually progressed to the point of being stage  IV and metastasized and there was absolutely nothing that could be done. This was heartbreaking for them and their family. The families had begged them not to go this route and it was very different from an informed approach because it was based on deception (I use a holistic approach to my own chronic illness so I am not against all herbal treatments etc).  

[Arcadia]

3 hours ago, Quill said:

 The person is not saying or telling people death is on the near horizon. So we’re losing time to do or say things we might want to have done. 

 

Can you or your siblings phrase some stuff as gathering family history and some stuff as normal old age planning? 

While some of my relatives died of terminal illness, some died of old age. My side of the family talks about estate planning when they are in their 60s. My brother and I know our parents wishes with regards to medical care and estate planning.

My husband’s grandma is nearly a hundred years old but she has dementia for two decades already. My FIL is 80 and hopefully he has made known his wishes by now because my husband has no idea what care he would prefer if he has dementia like his mom. 

My side of the family tends to die of old age around their 80s and thankfully are mentally sharp all the way. We are gathering family history and I hope we could do a short relaxing tour with my parents next year before my mom’s mobility further decrease (rheumatoid arthritis). My in-laws are physically stout so we have more time to do a trip with them if we can find somewhere with a casino (for them) and stuff my kids don’t mind doing. 

My maternal grandfather was my last grandparent to pass away. He was in ill health but mentally sharp. I had many great memories of him telling me stories of his times and he was very encouraging. He would sit in his favorite armchair and I would perch on the armchair’s arm rest when I come back from school (he stayed at my aunt’s home and my aunt “babysit” me). My paternal grandpa died before I was born, my maternal grandma died when I was a toddler, paternal grandma died when I was 6. I’m so glad I have that time with my maternal grandpa. He passed when I was 11.

[Valley Girl]

May I just say you guys are breaking my heart (and giving me a lot to consider)? I haven't dealt with the cancer issue, specifically, although we've had to deal with other terminal conditions. My deepest sympathy for all the heartache in these posts.

[AK_Mom4]

I’m so sorry, Qull.

My mom chose this.  And she was adamant about not telling my siblings it was terminal even though she was living with me and on hospice care.  She was only in her 60s and she and my dad refused to discuss any type of arrangements for her either.  And since it was her death in question, I had to respect her choices not to plan and not to tell.  When asked, I just told my sibs they needed to talk to the parents about it.

it hurt my siblings a great deal to have been shut out.  And damaged my relationship with them at some level because they felt I should have told.  I still don’t know whether that was the right thing to have done, but I do wish I had argued with my parents more to be honest with my siblings.  But they “didn’t want any fuss”.

 

ETA- I did win the palliative care argument, but it took playing the “so you won’t be a burden” card on her, which was icky.  But that WAS the right thing to do as it made her final days comfortable and pain free.

Edited June 26, 2019 by AK_Mom4

[Farrar]

5 hours ago, Quill said:

This is part of what upsets me about my circumstance. The person is not saying or telling people death is on the near horizon. So we’re losing time to do or say things we might want to have done. This person is not a fact-facer under the best of circumstances. Part of me wants to level and ask directly. But I’m chicken. 

That's the part that's the hardest for me. I still feel some anger - that I know I need to let go of, and mostly have, but it's still there and definitely colors how I see things - toward my father and his wife that they refused to let us come and see him until the very, bitter end, because they felt they were handling it so well and he was going to be fine and even if he wasn't, then they didn't want to share that time. Deep breath. I had a sense that it was worse than they would admit. I wish I'd just gone. But it was the treatment that killed him and he died much faster than I think anyone could have predicted, so I didn't really have time to.

[Farrar]

A friend's mother just passed away this week and I ended up rehashing this conversation in various ways. The thing that was hardest for my friend was that his mother refused to do anything because of a fear of doctors - no treatments, but also no palliative care or pain management. In the end, they basically forced one chemo treatment on her and then she died almost immediately thereafter. He was convinced that if only she had done the treatment, that she would have definitely had years left. And I'm sitting there thinking, she died within three weeks of the diagnosis. She couldn't even endure one chemo treatment. She was not going to live for years. Maybe if she had lived her life incredibly differently and had screenings much, much earlier, but... come on. This is what I mean about people wanting to see what they want. Her starting treatment a couple of weeks earlier was not going to make a huge difference. In the moment, yes, it can be hard to know. But in retrospect, it should be super clear. But instead, he's left angry at her for robbing them of this time. And that really was hard to watch. I hope when the grief isn't as raw that they can all realize that.

It also makes me sad that there was apparently so little respect for her wishes. Like, she choose this path. And yes, maybe it was irrational (though with the way she died so quickly once treatment began, I don't know that that was true), but it was her decision. My friend said he wished he'd had medical power of attorney so they could have made the decisions for her, against her wishes, to try and prolong her life. 😥

[Katy]

1 hour ago, Farrar said:

A friend's mother just passed away this week and I ended up rehashing this conversation in various ways. The thing that was hardest for my friend was that his mother refused to do anything because of a fear of doctors - no treatments, but also no palliative care or pain management. In the end, they basically forced one chemo treatment on her and then she died almost immediately thereafter. He was convinced that if only she had done the treatment, that she would have definitely had years left. And I'm sitting there thinking, she died within three weeks of the diagnosis. She couldn't even endure one chemo treatment. She was not going to live for years. Maybe if she had lived her life incredibly differently and had screenings much, much earlier, but... come on. This is what I mean about people wanting to see what they want. Her starting treatment a couple of weeks earlier was not going to make a huge difference. In the moment, yes, it can be hard to know. But in retrospect, it should be super clear. But instead, he's left angry at her for robbing them of this time. And that really was hard to watch. I hope when the grief isn't as raw that they can all realize that.

It also makes me sad that there was apparently so little respect for her wishes. Like, she choose this path. And yes, maybe it was irrational (though with the way she died so quickly once treatment began, I don't know that that was true), but it was her decision. My friend said he wished he'd had medical power of attorney so they could have made the decisions for her, against her wishes, to try and prolong her life. 😥

 

Anger, even anger at the deceased, is a normal stage of grief.  Try not to get too upset at him for being angry until he's had time to process all of the grief and move into acceptance.

Also in my nursing work, having watched many families make decisions to prolong the suffering of their parents because they weren't ready to let go of someone who was dying, it's typical.  It's so common and so upsetting to medical personnel that's why hospitals push you to complete living wills any time you are admitted.

[Katy]

6 hours ago, Quill said:

This is part of what upsets me about my circumstance. The person is not saying or telling people death is on the near horizon. So we’re losing time to do or say things we might want to have done. This person is not a fact-facer under the best of circumstances. Part of me wants to level and ask directly. But I’m chicken. 

 

I think if this were happening in my family I would share with all of the family that you're worried about this as a possibility.  But then again my family doesn't have a bunch of drama and narcissism, really just one mentally ill person who doesn't live within 500 miles of the rest of us, so only you know if discussing this with everyone would help or hurt the situation.

[TravelingChris]

On 6/24/2019 at 3:32 PM, happysmileylady said:

I know 2 people who "gave up." 

The first had no one specific diagnosis, but a whole bunch of little ones.  All were chronic and she had been treating for years, and I think she just got tired.  She had a doc appointment or two each week (on average) and she wasn't undergoing multiple heavy duty treatments or anything.  She had been living with relatives for years, who were helping her keep track of her appointments and pills, driving her around, but generally she was pretty mobile, active at the senior center etc.  And then she suddenly decided no more meds, moved into an assisted living facility several hours away and passed away a few months later.  I know she hadn't received any sort of life threatening diagnosis, but the effect of not treating the chronic little ones caused the very swift declined.  Her entire family felt totally abandoned....once she reached that point of passing, they couldn't get to her fast enough because she was so far away.  I think she thought she was doing something beneficial because the facility was very near the burial plot she shared with her husband who had passed many years before.  But between leaving them to move away and then deciding to leave the earth, they felt very abandoned.  I don't know that one of her sons ever got over it.

The second also didn't have a diagnosis but looking back, he *knew*.  He had lost his wife years before, she was his first and only real love and I can see now that he was tired of living without her.  I believe he knew what was going on with his health, but deliberately chose not to pursue anything specifically so that he wouldn't have to undergo any treatments.  And as above, I am not sure his son will ever actually resolve his feelings surrounding the circumstances.  

 

I suggest that whoever might be the people left behind, they gather their courage up and try to discuss their feelings ahead of time.  It is so much harder to accept a person's decision in this sort of thing when that person is no longer around to discuss and explain.  It still may not resolve anything, but I think it's harder to resolve once the person is gone.  

This is me before the decline.  I can totally understand why the son can't get over it.  It is because often the parent decides they are too much of a burden.  The kids may not think so-but the patient feels guilty.

[TravelingChris]

On 6/24/2019 at 4:40 PM, Quill said:

Living in a place where health care makes sense. Jealous! 

UUUH- unless you have conditions that are treatable with medications in this country and not available in places like UK and NZ.

[TravelingChris]

On 6/24/2019 at 4:42 PM, Murphy101 said:

I don't think it is "giving up" to acknowledge that the limits of current medical/financial options for finding healing as been reached and that energy is better spent loving than fighting.

Some people want to "go down fighting" either out of fear or obligation or hope or just because that's their personality.

But I hate the entire "fighting" mentality wrt illnesses of any kind.

As  a person who does live the life of never ending medical visits and lots of medical problems, I do like the phrase fighting the illness. I am fighting my own immune system.  It is a fight----it takes lots of effort.  It is one that I have been fighting for over 35 years.  It is one that I hope to keep fighting for many more years. 

[Guest]

3 minutes ago, TravelingChris said:

UUUH- unless you have conditions that are treatable with medications in this country and not available in places like UK and NZ.

Sorry; I hope that didn’t sound flippant. I’m just so frustrated about our health insurance and medical care circumstances in this country. It’s something I so much want to see improved. 

[TravelingChris]

On 6/24/2019 at 3:51 PM, Pawz4me said:

DH has metastatic cancer, so this is close to me.

There is no cure for any cancer that has metastasized. Doctors may refer to remission, or getting to "NVED" (no visible evidence of disease), but at this point the word "cure" is not one that is used by medical professionals in relation to stage IV cancer.

I strongly dislike the terms "gave up" or "giving up." Ugh. it sounds like the person is just passively fading away. Sure, some choose never to pursue treatment. But some stop after realizing that staying in treatment to keep the disease under control is too costly in terms of quality of life. Not only from side effects of medication, but the never ending doctor appointments, scans, surgeries, blood work, managing prescriptions and insurance, and on and on.

And just about everyone, unfortunately, has to consider finances. Even with good insurance cancer (and many other chronic illnesses) is incredibly expensive. A very high percentage of people with stage IV cancer declare bankruptcy within a couple of years. There are a few people on the cancer board I belong to (same type of cancer that DH has) who have made the decision to stop treatment, or to never pursue treatment, because of the toll it takes on the family.

Long way of saying -- there is much to consider, and unless one has walked in the shoes I wouldn't judge.  Unless it's you or someone you are very, very close to then it's not up to you to decide.

But plenty of people are surviving long, long term after metastatis.  LIke 20 years long and still alive.  Think of Lance Armstrong- who had stage 3 testicular cancer in 1996 that had spread to his brain and liver and elsewhere.  He is still alive  and doing well physically, at least.

[Pawz4me]

16 minutes ago, TravelingChris said:

But plenty of people are surviving long, long term after metastatis.  LIke 20 years long and still alive.  Think of Lance Armstrong- who had stage 3 testicular cancer in 1996 that had spread to his brain and liver and elsewhere.  He is still alive  and doing well physically, at least.

Yes, that's kind of what I've been attempting to express. Stage IV cancer isn't necessarily a quick death sentence, nor does it absolutely mean living with little/no quality of life. Every single cancer is different and IMO treatment decisions (or not) should be considered on a case by case basis. There are so many people here saying they know, or at least feel certain, that they wouldn't undergo treatment. But to me making a decision like that w/o evaluating all the data and the pros and cons is just as bad as doctors who don't make all the data and facts plain before urging a patient to pursue treatment. One way or another, I'd want ALL the info before making a decision. Walking this walk with DH and knowing what I know there's no way I could make a blanket statement that I would or wouldn't pursue treatment until I knew it all. I can't help but wonder if some of the people saying they wouldn't pursue treatment have any experience beyond traditional chemo? Like with the newer treatments like targeted drugs and immunotherapy.

[Jean in Newcastle]

My husband does palliative care and works with patients and families through the death process.  It has helped me too as we've walked our own family members through some of these decisions.  I think that good providers (and there are those out there as well as the bad) take a very individualized approach that looks at all angles.  Those families or even patients who are rigid (in any direction) are the ones who have the most trouble and often are the ones who leave heartache in their wake because they often run roughshod over others.  I don't blame them for that, we've seen it over and over again and understand how often these decisions are rooted in things going way back long before the illness ever took hold, but it also makes me sad to see.  I think this is why I have had a hard time filling out my own Living Will documents when asked to do so.  There are so many "it depends" situations. 

[TravelingChris]

22 hours ago, Arcadia said:

My relatives gave up when there was negligible chance of remission. For them it’s a case of 

1) not wanting their last months to be endless rounds of hospital stays and doctors visits

2) needing their children to help with care because home aide is costly and feeling bad about burdening their children 

3) wanting to leave some life savings for their surviving spouse or children instead of depleting all life savings on medical bills

My late younger cousin (Roman catholic) was suffering during the last months of leukemia. It’s heartbreaking but we have to make peace that God has other plans.

I said I like the fight term. BUt in my mind, fighting a disease does not have to mean medical treatment.  I think what your relatives have done and others on this thread described is fighting.   What really bothers me is with Autoimmune diseases are people who decide to just give up on living a life because of fear of medicines and/or belief in one of the crazy beliefs out there=  lose weight and you will be cured, acai berries, pyramids, exercise (as a cure), essential oils, etc.etc.