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Metastatic or Terminal

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amontro
amontro Member Posts: 184

Some posters have pondered what to call it.

Many posters to this forum have wondered about this. When I tell people that I have Stage 4 Metastatic Breast Cancer, I get a whole range of reactions. Many do not know what Stage 4 means - to them, either you have cancer or you don't.

Metastatic (it's all Greek to me) is usually not in most people's vocabulary. Many cannot make the connection that metastasis is cancer that has spread to other parts of our body.

I've had Stage 4 for many years and people who have not seen me for a while since diagnosis think that I'm better so all I need is extra Vitamin C, herb teas, plenty of kale (ugh!), and you can add to the rest of this list the list of cures that you have heard.

Terminal sounds more "in your face". It will be a shock to some and you will be asked how is it you are still around. (From eating kale?) lol. I know it's a drastic word but people still think I can go to a get-together, visit or go shopping. We will all die from this disease sooner or later. We can sugar-coat it for our families and friends, but it will happen.

I don't know about you but, if I have any energy in the morning, I will do my light chores such as cooking and baking before the fatigue sets in at around 1:00 pm. Then it's nap, reading and crosswords for me. Meeting with someone for breakfast is like planning a trip to Europe (almost). I would have to go home right after and lie down for the rest of the day.

So what do you think? Metastatic or Terminal, or do you have another term?

This was written by me in the spirit of some amusement so please don't be sarcastic. It's a real question for those of us who are tired of hearing "crickets" when you say you still have "IT"!

With lots of love,

Anna

Comments

  • tina2
    tina2 Member Posts: 757
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    Anna,

    During the 12 years since my Stage IV diagnosis, I've told very few people about my health. When I do I say that I have Stage IV breast cancer that has metasticized to the lungs, then quickly add that it is stable. If they seem to be interested in knowing more, I tell them I have regular scans and am doing well. I never use the word terminal. I did once and the breathtakingly insensitive woman I told responded, 'We're all terminal."

    Not willing to spend the rest of my days in prison for homicide, I have since refrained from using that term.

    And yes, I start each day staggering around with a stiff arthritic body, get going to do a few things, and then start sagging in the early afternoon, when I often take a nap. Then I feel guilty because there are always things to be done. Always.

    Such as now!

    Tina

  • candy-678
    candy-678 Member Posts: 4,099
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    Good topic.

    I usually say I am Stage 4. But people don't really understand that. I can tell by their expression. So I may follow up with "it has spread to my liver and bones". That is usually where I stop. I don't usually say "it is terminal". Though I have said that to close friends/family.

    And, I too, get the "you look healthy" or "are you still on treatment". I have had this diagnosis for 5 years and most people think I am better or "in remission" when they see me. They don't understand it is a marathon, not a sprint. Most think that if you get cancer you die soon after diagnosis. They don't understand you can be actively fighting it for several years.

    I too do my household chores in the mornings when I have more energy. By afternoon I am worthless. And I am in bed by 8 or 9pm. My friends will say "I am tired too" if I say I am tired. REALLY??!! Honey, you don't understand "cancer tired", you are "healthy tired".

  • sondraf
    sondraf Member Posts: 1,601
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    Eh, I just dont tell people, and those who DO know (my immediate family and my OH) never refer to it by anything other than 'your situation'. There's complex reasons for that, but Im ok with it. I don't like to refer to it either, or if I do, I call it 'being sick' or 'ill', even though I dont really feel ill.

    I see how many times I wrote it above there, instead of cancer. I guess thats a good indication of my mentality towards all this bs. :D

    I figure ill call myself terminal when its the insurance-definition and I've had "the talk" (hopefully not for many years yet). Stage IV can mean different things for different cancers - like for pancreatic you may as well say terminal, but there is one (is it non-Hodgkins perhaps?) where its so slow growing that Stage IV is like Stage III with any other cancer. People never know what to say and BC is so sensationalised already in every day life that it just confuses them to consider its not the cute pink kind, its the deadly killer kind. Oddly, most of my issues come from health care workers who assume Im going through/finished early stage treatment and either have no reason to read part of my notes or didn't read them closely. They are so cheerful and supportive and its like yeah no, sorry this isnt going away but its stable for the moment so Ill take it.

  • olma61
    olma61 Member Posts: 1,024
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    Sondraf, my take on this is very similar to yours and I just had the “provider talking to me like I’m early stage” situation come up with a new nurse practitioner. Told me I have to stay on Arimidex 10 years because I had a positive node. I was just like yeah, no, I’m on it forever. Then the doctor came in and had to explain to her that I have bone mets. Better the doctor than me, I feel Iike I should not have to go through the explanation when all the notes are right there in front of them on a computer screen.

    But in my daily life, I don’t waste too much time trying to explain things to people. I am fortunate in that I am doing well for a pretty long time so far, and I just take it one day at a time. “Gonna live until I die” as another MBC lady once put it. And hopefully I will hang around long enough for some super innovation in cancer care to happen



  • exbrnxgrl
    exbrnxgrl Member Posts: 4,844
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    Well, if anything was going to pull me back to bco, it would definitely be this thread. And so … I love linguistics, semantics, and anything having to do with languages ( my Bachelors degree is in linguistics). I value precision in language but clearly understandthat between definitions, connotations, geo/cultural differences, etc. there is ample room for individual interpretation and lots of misunderstandings. And that doesn't even begin to address those amateur medical experts 🤦🏻. That being said, I am and have always been an open book about my bc situation. No, not the kind of open that means I tell cashiers in shops but if comes up in conversations, I often volunteer my circumstances. I think it's part of my educator personality as I appreciate the opportunity to educate folks about bc. I myself knew virtually nothing about bc prior to my dx and I'm ready to have folks understand bc beyond “awareness". Terminal, metastatic, stage IV??? I admit to choosing my terms based on my audience. I rarely say terminal because most people think that means death is in the near future. On the rare occasion I have used the word terminal it went something like this, “ I have terminal bc but have managed to evade the terminal part for over 11 years." I have only said that to people who know me well and are not given to freaking out. I often use metastatic (and often explain what that means) because I think that it's an important word to understand. It is also difficult for some to understand and they will insist I now have bone cancer because saying you have breast cancer in your bones is (or any mets from any type of cancer) is a bit of a weird concept if one has never had much experience with cancer.

    Appearance; there is probably no one who would look at me and guess I have mbc. This has been painful to explain to those who have questioned me about it. I have had more than one person ask if I'm sure about that. I won't entertain you with the details again but you know I will not hesitate to start exposing my bc effected body (Hey, how about those rads tats across my upper thighs near my bone met!) . In the end, I know that people are people who run the gamut of emotions/information and experience with cancer. Yes, it does frustrate me at times but I keep working on controlling myself😂. Tired? Yes, I am, thank you! I still work 2-3 days a week and help out with my younger grandchildren and then relish every minute of my time to rest!
    In the end, whatever we call it, the end result will likely be the same.

    HAPPY NEW YEAR TO ALL



  • olma61
    olma61 Member Posts: 1,024
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    Ah, I failed to answer the semantic part of the post, which might be the main point. I gravitate toward the word “incurable” to describe my MBC because I agree most people dont grasp the meaning of “metastatic” if they’re not part of cancer world. And “terminal” just doesnt seem to fit, because it does carry connotations of being near death even though that is not the definition in the strictest sense of the word.

    I think incurable gets the message across better, I’m in treatment for life no matter how good things seem right now.

    And “it’s incurable because it spread” is something most people can understand. “The medication, which I’ll be on for life, makes me feel tired and ill sometimes” seems simple enough for most people to understand.

  • chicagoan
    chicagoan Member Posts: 976
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    I just started using the phrase "terminal cancer" to describe my health situation this past year. Like many of you, I find that even close friends and family somehow think that I am "cured" and no longer under treatment. I'm grateful that I look okay and that I can still do most normal activities so I can understand why people block out or forget about my cancer. I found that most people did not understand "metastatic cancer" or "Stage 4" even if I explained it-they do get what terminal means. I usually say I have "terminal cancer" and then I laugh and say I've been so lucky because I have had this diagnosis for over 6 years. I don't mind people knowing that I have cancer. It has helped me form deeper connections with others who have cancer and may have been secretive about it or those who have been through other traumatic experiences such as caregiving for a spouse who died of ALS. Truth is we are all terminal and most people go through a lot of heavy stuff before they die.

  • sadiesservant
    sadiesservant Member Posts: 1,875
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    Interesting discussion. Olma, incurable doesn’t work for me as it implies that it’s chronic. Would love that to be the case but we are a long way from that point. Terminal is too heavy as it only seems to work closer to the end although interestingly, my insurance allows access to 50% of the policy amount if you are expected to go within two years. I agree, folks don’t get stage IV or metastatic. Ultimately I have found that no single term sums up my situation and so explanations are required. I’m okay with that as I’m very open.

  • dancemom
    dancemom Member Posts: 404
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    Sorry if this double posts, I had tech issues.. Interesting discussion. I've only told a handful of people that I have cancer when necessary, like for coverage at work. I didn't mention stage, too complicated. The word "cancer" is enough. Didnt go into details with my parents either, but when my NP sister asked about my meds, my mom called me, a little upset. I explained that right now, we are looking at this similar to a chronic condition. De novo oligometestatic, so I get ALL the treatments. Chronic things can get worse, its about keeping them stable. But I know everyone's diagnosis is different, and that affects what we say and what others see.

    Semantics: terminal is the end of the line, like Grand Central Terminal. I hope to be on this train a long while, passing through as many stations as needed, and that I won't get to the Terminal anytime soon.

    A woman I know lived w stage 4 for 20 years. She died recently, almost age 80, from complications of heart surgery.

    Happy stable new year

  • amontro
    amontro Member Posts: 184
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    Wow! These are great posts. They give me some things to think about. I tend to gravitate toward incurable, and chronic to me implies a rash or sinusitis. I guess all of you make sense. It depends on who you are speaking with.

    This isn't a contest, but it is interesting to think of how we are perceived by others.

  • sadiesservant
    sadiesservant Member Posts: 1,875
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    The issue of language and how we express ourselves in this situation is thought provoking. I read an interesting article this morning related to medical ethics but was intrigued by an analysis of the history of our views on illness, beginning with the view that it was the result of divine wrath or punishment. Apparently the word “patient” was coined to mean one who endures “trials and provocations”. Bit off topic but I laughed when I read that as I think most of us can relate in terms of what we have to endure with tests and procedures. 😊

  • olma61
    olma61 Member Posts: 1,024
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    amontro, it was a great topic so thank you. It is great hearing from everyone

  • weninwi
    weninwi Member Posts: 755
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    Yes, interesting discussion.

    For those few people who I have shared details with, I'm usually pretty concrete...I have cancer that has spread from the breast to other organs. I take medication to keep it from spreading further. I will always be on some type of medication until the medication stops working or until a cure is found.

    dancemom.....I like that image..."I hope to be on this train a long while, passing through as many stations as needed".

  • nopink2019
    nopink2019 Member Posts: 384
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    Good discussion! I don't think I understood the terms stage iv, metastatic, chronic or terminal before this diagnosis. And I do think the terms can mean different things for different diseases. All my friends know (and they have learned alot of stuff they probably never want to know from my "adventure".) When it comes up with someone around who might not be so familiar with me, I try to tell them in simple terms. I used "metastic" and if that doesn't work I say breast cancer spread to my lungs & liver. Then sometimes I have to clarify that it isn't curable and I'll be on one drug or another as long as there is something to try to slow it down. To me, this is information we wish we never had to learn, so I don't expect anyone to know it. Must say, I'm very lucky to not have run into folks who tell me to "think positive", "drink cranberry juice" etc. My friends are more likely to say "I'll ski the easy runs anytime you feel like it" (we used to be on the black runs). And my old hiking group (5-10 miles, I can't do it anymore) will still let me know when they are having lunch after a hike so I can join them!

  • amontro
    amontro Member Posts: 184
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    nopink-

    Bless you for having the patience to explain your situation to people. When I don't get a reaction to "metastatic", I usually change the subject.

    I'm afraid that if I go on to say that it has spread to my lung and spine, their faces would look horrified, and then I would have to make them comfortable and talk them down.

    I suppose you can say the same about "terminal" and "incurable", and that is what this thread is about. Do we want to tell them the prognosis so they will be sad or upset, or do we want to just say "metastatic" so they don't really react?

    The responses to this thread are really encouraging. I thought I was alone thinking about semantics while dealing with this horrible disease. (sort of like rearranging the deck chairs on the Titanic)

    Thank you all for your varied opinions.

    Love,

    Anna

  • divinemrsm
    divinemrsm Member Posts: 6,080
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    Back in the 1970s, when I was in my 20s, my teenage brother was diagnosed with testicular cancer that had spread to his stomach and throat. I heard the word terminal tossed around a lot. He had surgery and harsh chemo of the time as well as radiation. He'll celebrate his 63rd birthday next month. His many years since he was a teenager have been spent living a full life.

    It's been 12 years last month since I was diagnosed metastatic from the start. I'm thinking it was knowing my brother's experience with metastatic cancer that a teeny part of me held out hope that maybe my life wasn't quite over yet (most of me was quaking in my boots). I never cared for the word terminal. I think if I had described it that way to others after first being diagnosed, people might now be saying, “well she acted like she was gonna die any minute!"

    Most of us know someone who died quickly, less than 12 months after they got a cancer diagnosis. Yes, those people definitely had terminal cancer. But to me, using that word makes it seem as if all that matters is the end game, i.e., death.

    Tina, I want to comment on the hideously insensitive woman who tried to trivialize what you are going through by saying “we're all terminal." I, too, would have had to refrain from homicide. I never seem to come up with witty replies in the moment, but having had time to mull over it, my dream response would be something like “Oh, what you mean is all of us are going to die at some point, right? Sure, that's true, but between you and me, only one of us right now is being attacked by a deadly disease trying to kill her even as we speak. I'm sure you wouldn't want to trade places with me, now, would you?" And then I'd smile, look the woman in the eye, take her hand, give it a a nice long squeeze and say, “Well, the good thing is it's not contagious." and I'd let my hand linger on hers even in this age of Covid. Because f#*/ people like her!

    I don't often explain my medical diagnosis to others, but I think the word incurable is more easily understood by the general public. However, it has to be used with additional context. Saying something like “I'm living with incurable cancer that at some point will become completely resistant to any kind of treatment, and when it does, it will spread rapidly and cause death. And the thing is, no one, not even medical professionals, can say when that will happen, if it will be in two months, two years or whatever. So I live with a lot of uncertainty and ongoing treatment, never knowing when the other shoe is going to drop."


  • vlnrph
    vlnrph Member Posts: 490
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    Being a retired pharmacist, I also tried to educate people by using the term metastatic during the 4 years I had bone only disease. However, that mostly led to confusion which went on full display with the question “So when will you be done with treatment?" Uh, when I go on hospice…

    Now with liver involvement, the end seems much closer. In fact, although my photocopied Christmas letter just said the cancer had spread further, I wrote personal notes in cards to some folks explaining that my diagnosis was now terminal (not me personally because I'm not actively dying yet!).

    Recently, I'm using that phrase in emails going to certain friends as my 2nd line therapy gets underway. It has helped me get my head around the reality of the situation. For those who may still have difficulty understanding this, I might go with 'incurable' but that seems less precise.

  • sadiesservant
    sadiesservant Member Posts: 1,875
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    OMG divinemrsm! You are awesome. I could picture you holding that hand, letting it linger. Ha!

    vlnrph, I think you have hit on something crucial. A single word doesn’t cut it in describing metastatic disease as there will always be variations, shades of this illness. I wouldn’t have described my situation as terminal six years ago (well, not after my MO talked me off the ledge - based on Dr. Google I was convinced I had two years at best) and even when it spread to the liver that term didn’t resonate. Now, as my treatment options have dwindled and my liver continues its attempts to expand beyond the confines of my body, I’m having to make peace with that term. Perhaps not immediate but terminal none the less.

    I’m not sure there is a solution to the conundrum of explaining MBC to others. Even those closest to us struggle to understand, partly as a result of denial. And the concept of endless treatment just seems so foreign to most people, as does stopping treatment or no more treatments. I had that conversation with a dear friend the other day. It took three different “tellings” before the penny dropped. It was a hard conversation to have….

  • divinemrsm
    divinemrsm Member Posts: 6,080
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    vlnrph, I’m so sorry to learn you are dealing with more extensive metastases at this time. Your thoughts seem similar to mine on using the word terminal when disease progression is more apparently extensive and dire. Explaining to friends that your diagnosis is terminal, not you, is a smart way to phrase the situation.

    And I agree with you, sadie, that there are shades and variations of living with mbc that can’t be captured with a single word. That’s where providing additional context may help someone grasp the gravity of what metastatic, incurable, terminal breast cancer means.



  • amontro
    amontro Member Posts: 184
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    divinemrsm -

    Thank you for your insight. I also loved your response to "we"re all going to die". I hear it on many occasions and never had an answer for it.

    This is the quote from you that I may adopt: "only one of us right now is being attacked by a deadly disease trying to kill her". I hope that I'm not caught unprepared next time!


    - Anna

  • luvdbyhim
    luvdbyhim Member Posts: 187
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    vlnrph - So when will you be done with treatment?" Uh, when I go on hospice… OMG I literally laughed out loud and it is 3am where I am. I am totally using this! I get this alot so when will you be done with treatment? When you get the scan and it is all okay? I usually say I will be on this treatment the rest of my life or until the cancer out smarts it whichever comes first.

    Well I don't understand why your hair isn't falling out. Uhmmm because I am not on chemo. Why are you not on chemo I thought you had breast cancer?!?

    Sometimes I just feel like I am on a merry go round. And I just want to get off. No getting better, no hair falling out right now, and no it wont go away. It is like diabetes it is a chronic illness that is managed. Response, Well I am sure you are going to be just fine when treatments are finished. smh

    I do confess I think some of the responses are because they can just not process everything because they love us. My family is no stranger to cancer so some of the things that are said are just silly.

    My cousin was just diagnosed with Stage 3a pancreatic cancer. She said to me I was so glad I wasn't stage 4. I said yeah cause then you would be like me. There was dead silence on the phone. I just cracked up laughing as she stuttered through it.

  • mkestrel
    mkestrel Member Posts: 158
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    .I get the when will you finish treatment question a lot. My latest scans showed no progression. I said to MO it is an inactive volcano 🌋. He liked that and said he will try his best to keep it that way. I think I'll use that one for a while.


  • candy-678
    candy-678 Member Posts: 4,099
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    mkestrel- I like that--- "an inactive volcano". The volcano doesn't just "go away". We are not "cured" just because we are stable. And we never know when it will blow. No warning. Could be months.. years... or tomorrow.

  • nopink2019
    nopink2019 Member Posts: 384
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    I too plan to steal the phrase "inactive volcano". That's a great analogy.

  • simone60
    simone60 Member Posts: 952
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    Interesting topic. I struggle with what to say to people. I used to tell people I have Metastatic breast cancer but I got so many deer in the headlight looks that I stopped. I now tell them I have stage 4 breast cancer that spread to my bones and I take a couple of pills to keep me stable. They still don't understand as most people think you have to look thin, pale, and bald to have cancer. I like the "inactive volcano" analogy too. I'm going to try that next time someone asks.