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Im not on a "journey" and Im not a "warrior." Who is with me?

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  • betrayal
    betrayal Member Posts: 2,200
    edited March 2021
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    When one of my BC doctors told me I was a survivor, I held my breath until I could collect myself (and not behead them) and replied "The only thing I have survived to date, is the barbaric treatment. I will need to die of something else to determine if I have survived BC". There was no reply. I am not a survivor, and do not wish for anyone to tell me I am. Having BC has changed the entire trajectory of my life and not for the best.

  • melissadallas
    melissadallas Member Posts: 929
    edited March 2021
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    I do not consider or refer to myself as an “ovarian cancer survivor”, yet I was very acutely ill-much more so than most of the breast cancer patients here, other than end-stage ones. I was having five to six liters of fluid pulled out of my belly with paracentesis every few days, requiring albumen infusions. I had pulmonary embolisms requiring injectable Lovenox every day for six months. I had an inferior vena cava filter inserted and removed. I had a twenty pound tumor that compressed all my organs, keeping my lungs from inflating and my heart from beating normally. I was cut from my pubis to my sternum and had a TAH, oophorectomy, appendectomy, and partial omentectomy. I was left profoundly anemic. I was told before all that that imaging indicated I had a poor prognosis and might wake up with a colostomy and a chemo port in my belly. I got through it. No “surviving” to it. I was very fortunate to have a weird tumor requiring no chemo or radiation

  • runor
    runor Member Posts: 1,613
    edited March 2021
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    Beesie, interesting point. I wonder if this saying "breast cancer survivor" is heard in countries that are not North America? We may use it when referring to cancer situations in other countries, but do they use it in reference to themselves? That is a very interesting question. Now I'm curious. But have no intention of doing any research of any sort. But I am going to put on my pink boa and feed the chickens. 

  • alicebastable
    alicebastable Member Posts: 1,944
    edited March 2021
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    MelissaDallas, how scary that must have been!

    I'm in a couple kidney cancer groups, and there are a few people who get t-shirts or bracelets or tattoos and like to sling words like survivor and warrior around. It's one of those cancers that's treated with surgery and only the worst cases (stage 4 and a few stage 3) get immunotherapy or occasionally, chemo, and a lot of those people see no further progression. The sizes sound scary, but what would wipe out a breast is just average or less on a kidney. Mine was 7 × 6 cm and still (barely) stage 1. It was, however, grade 4, which is potentially scary but not anything that affects my life in the here and now; I just have to go through a few more scans. So, surgery to remove a kidney in the 21st century means one night in the hospital, five or six small scars and about six weeks of soreness. Okay, one of pain and five of soreness. Still, hardly an "oh-my-stars-and-garters-look-what-I-survived !!!!!" situation, but some people can't resist buying the entire I HAD CANCER™ experience with a stop at the souvenir stand.

    I think the C-word needs to be de-mystified and de-dramafied for early stage situations so we don't hear the SURVIVOR!!!! crap from every one-and-done stage 1 grade 1 Oncotype score of 2 patients. It might also help the undiagnosed people who are freaking out over a heat rash or zit so they wouldn't have to go through (and inflict on others) the "OH MY GOD I'M SURE I HAVE CAAAANCER AND I'M GONNA DIE IN A MONTH!!!!!!!" level of misunderstanding.

  • beaverntx
    beaverntx Member Posts: 2,962
    edited March 2021
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    Does anyone know when the survivor term became attached to breast cancer? I do remember that back in the 60s (yes, I am that old!) a diagnosis of breast cancer was considered to be a terminal diagnosis and discussions of breast cancer were done mainly in whispers. We have come a long way since then but obviously there is a lot more to be learned.

  • traveltext
    traveltext Member Posts: 1,051
    edited March 2021
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    I can remember the 60s too! I was 12 in 1962 when my mom died from bc. I remember catching her stepping out of the shower, when the crude treatments of the pre-chemo days was radical surgery and intense radiation. Her left chest looked really dreadful. She only lived a couple of years post diagnosis and I'm guessing survivor was a term that most bc patients back them didn't expect to ever be applied to them.


  • olma61
    olma61 Member Posts: 1,021
    edited March 2021
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    Yes I was about to chime in with this point made in the last two posts. There was a time when even “catching it early" was no guarantee you were not dying from breast cancer. And today...the only reason early stagers are surviving and I'm not putting that in quotes, is because we have better treatments and you all are able to access them

    Before Tamoxifen which I think was developed in the 1970s (?) there were far fewer survivors.

    If the medical profession likes this word, it's probably because they remain aware of the alternatives.

    As I said a few pages back, it's rather ridiculous to call myself a “survivor" in Stage IV (although I do hope to die of something else so I can give cancer a big fuck you) HOWEVER I am very aware that I am surviv- ING each day that I wake up, thanks to Dr Dennis Slamons and his marvelous discovery.

    If I lived in third world countries, or was poor and uneducated in America, or had bone Mets 30 years ago,or was “afraid of chemo" and convinced that some quack could cure me with V8 juice, or if Dr Slamon did not get his funding, etc.....I would be less likely to be surviv-ING without suffering, for as long as I haveeven, which isn't really that long yet but still.

    And truth be told, neither would some of you early stagers. So maybe don't Pooh Pooh it so much if your doctor thinks it's an accomplishment that you are now cancer free through treatment .


    Just my two cents. You don't have to like or to adopt any lingo that you feel doesn't fit but sometimes, it comes from a good place and might even be based on truth.

  • alicebastable
    alicebastable Member Posts: 1,944
    edited March 2021
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    It's hard to know what was going on with early stage cancers several decades ago, just because it wasn't talked about. Hardly any cancers were; just whispers behind closed doors. I know mastectomies were much more invasive, even through at least the seventies, I think. But were there also lumpectomies that just weren't discussed? And I don't remember anyone discussing screening, even self-exams, so were cancers not caught until they had grown and frequently metastisized? Just anecdotal, but my aunt complained for years of bone pain and her doctor brushed it off with "bursitis, use Ben-Gay." I'm not sure how she finally got diagnosed, probably when the mets had gone into her organs and caused severe damage, but this was in the late 1980s or early 90s, so not so very long ago (and she died within a few years). I think if there was a cancer diagnosis, people were given a grim prognosis and if they did well, it was attributed to luck, or a miracle. My uncle had cancer in the 1960s - I guess head and neck type, but I don't know because people would just say The Cancer like it was a malevolent other-worldly spirit. He had almost half his face removed from just under his eye and against his nose, including the cheekbone and palate, and had extensive plastic surgery to rebuild it all. I remember talk of cobalt treatments, but don't know if that was a type of chemo then. Anyway, people kept expecting him to die, and he'd been told he might make five years if he was lucky, but he died about 30 years later of something completely unrelated. I've always wondered if everyone got the same prognosis then.

    I wonder if some of the Rah! Rah! Pinkboombah! was started once screenings were being encouraged, and as an attempt to put a positive spin on a cancer diagnosis after years of dismal fear? But in doing so, the people with metastatic disease got pushed to the side or at least weirdly misrepresented.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited March 2021
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    Yes, thankfully survival rates for breast cancer have improved a lot.

    I don't think that explains the "breast cancer survivor" thing, however. Breast cancer went from never being discussed in public to now being paraded out as though it's a badge of honour "I'm a breast cancer survivor!!" Cue the cutesy pink accessories.

    And as I said in my previous post, there is a difference between saying "I survived my bout with breast cancer" versus using the word "survivor" as part of your identity.

    I had breast cancer. It is a fact of my life but it is not who I am. And it is not anywhere close to being the most important piece of information about me.


  • olma61
    olma61 Member Posts: 1,021
    edited March 2021
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    AliceBastable - doctors would not even do lumpectomies until women's groups started to advocate for “breast conserving" surgeries and less invasive mastectomies in those cases where it was possible and feasible.

    Researchers finally started doing studies of less invasive surgeries in the 70s and 80s and the 1980s is when lumpectomy + radiation really became common.

    I do agree that much was not talked about before the mid 20th century. Betty Ford going public about her cancer in the 70s was a big deal. Also, Shirley Temple, in that same era.

    Beesie, for me, I too am bothered by the feeling of being forced into some role or identity by others so I can relate to what you said about identity. That,I guess, might be the gist of this whole thread. Too many assumptions and not enough really talking to “survivors"/people with cancer.

    Forced positivity is bad. I have gone off on peopke over that one, even though I generally am pretty “positive" Celebratory atmosphere is bad. Not talking to the actual people affected by the disease and the treatments is bad.

    However...there has to be some vocabulary for referring to people with cancer and for now they use “survivor". I personally like that better than “victim" and “patient". To me, that's not something worth worrying much about though. I would think it weird if a doctor called me a cancer victim, however.

    ..hah maybe I just coined a phrase there - “ people with cancer?" Maybe not though. Cant please everyone. ¯\_(ツ)_/¯

  • threetree
    threetree Member Posts: 1,349
    edited March 2021
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    Beesie - To me the term "survivor" and all the pink, etc. that goes with it seems like marketing hype, and I associate it with cancer organizations like Susan Komen, etc. I think they use all the "survivor" and pink stuff as marketing tools to raise money, etc., and now it's just become a part of the culture.

    Betrayal - I too have told doctors that the treatments involved are "barbaric" and that I'm surprised that in this day and age, there aren't more "gentle" ways to treat disease. Also agree, that I will need to die of something else years from now, before I can say, "I survived breast cancer".

    Re the 60's: I was about 10 in the early 60's when we learned that my paternal grandmother had breast cancer, but that's all we knew. She died in the mid 70's, so I've assumed she had about 10 years after her diagnosis. She and my father were on the outs for some time, so I never did hear any details; don't know if they did staging, ER/PR testing, or whatever back then. I only know that she had a double mastectomy. Some years ago I did see a copy of her death certificate and her official cause of death was a stroke, with "contributing factors" being metastasized breast cancer to skin and bones. I have no idea what kind of treatment might have been available to her at that time, or what occurred other than the double mastectomy, or again, if they did things like staging. It would really help to know what was available in those days, since some of us do have family histories and what happened to the older generations could offer insights into our own situations - beyond just genetic testing.

  • sf-cakes
    sf-cakes Member Posts: 538
    edited March 2021
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    Yes, Olma61, the forced positivity gets to me. Especially now that I have MBC, the "YOU GOT THIS! YOU'RE A WARRIOR PRINCESS!!" (thank you for the hilarious image, Beesie) comments feel surreal. I understand people are trying to be positive, and I'm also fairly positive myself most of the time so I don't think I'm putting energy out there that I need cheering up or cheerleading.

    Those comments remove the possibility of having a more authentic conversation, which, trust me, I'm not trying to do with everyone! However, I've been surprised at times by who has responded to me in this aggressively positive way, including women who've had breast cancer before. I can empathize that I may now represent their worst fear, ie cancer returning, and immediately shutting down the conversation with a loud "YOUGOTTHIS!" is undoubtedly a defense against that fear. And it still sucks.

    Now I'm going to go put on my princess outfit. Which consists of black jeans, black boots, a long black blazer, and a t-shirt that reads "Rebel Scum".

  • ceanna
    ceanna Member Posts: 3,120
    edited March 2021
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    Olma, your comments about a celebratory atmosphere brought back memories of being expected to "ring the bell" after I completed radiation!! At the time, I had not heard of this strange tradition, and I don't remember if I rang the bell or not!! I know I certainly didn't feel like ringing some bell and no one had explained this odd celebration to me!!! How did ringing a bell even get connected with completing radiation?!!!

  • threetree
    threetree Member Posts: 1,349
    edited March 2021
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    I didn't get the "ringing the bell" thing either. When I finished radiation, they said that my "class" (what class?) would have a "graduation ceremony" where we would be served lunch and could ring the bell. I declined to attend because it made no sense to me. I had no idea I was in a "class" for one thing, and what does ringing the bell have to do with anything?

    A woman I befriended there though (she and I would talk a lot while waiting), asked me to please come to her "graduation", and I did go because it obviously meant a lot to her. Apparently she and I had been in different "classes". Well, I enjoyed the lunch and meeting her family, and she got a lot out of going up to the front of the group and ringing the bell. At that time I realized that one's "class" were those who were also getting radiation at the same time you were. Almost all of them I'd never seen or talked to before so felt no particular "comradery" with any of them. They were nice people and it was nice to chat with some of them, but I hardly felt like I'd been in a "class" with them - I'd never seen them before. They also had various staff people come out and present "awards" to "survivors" who were "ringing the bell" and I'd never seen or heard of most of them either (were they the "faculty"?), but somehow we were all supposed to be having a group/class celebration for "graduation" from radiation and ringing the bell. Again, it seemed to really mean a lot to some, so it obviously brings comfort and meaning to some. Personally, I just don't connect.

  • minustwo
    minustwo Member Posts: 13,116
    edited March 2021
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    I like the mental picture of Runor feeding the chickens in a pink boa. And SF Cakes dressed in black with a rebel scum T-shirt. I'm still wearing the same black sweat pants I've worn all through COVID. (well yes, I have washed them)

    Alice - my father's uncle had cancer of the face/nose/etc. This would have been around 1930 and there really wasn't plastic surgery. After most of his face was cut off, he moved to the wilds of Alaska - never to be seen again. No one has any idea when he died.

    And in the late 1950s, the lady I used babysit for got breast cancer. I heard my Mother talking in whispers about her radical mastectomy. She didn't live very long.

    I'm of an age with Beaver & Travel Text. Certainly no one talked about cancer, let alone breast cancer. For heaven's sake, you couldn't even advertise bras on TV, not to mention Kotex or Tampax. The word "breast" was never spoken. I remember an older boy cousin "reading" the Sears catalog to see what a bra looked like. (oh, those awful torture, containment devices)

    This is such an illuminating thread - each with our own thoughts and things that make us cringe. I'm one that can't abide survivor, but I do agree everyone grapples with their own comfort level. And I do agree that the 'forced positivity' is the worst. My sister-in-law was always there with her damn camera to take "happy pictures" of me as a skeleton with a bald head (I'm 5'8" and got down to 100 lbs). Ugh.

  • alicebastable
    alicebastable Member Posts: 1,944
    edited March 2021
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    Luckily, my radiation facility had no goofy ceremony for completing radiation. The technicians wished me good luck as I got off the table, I met with the nurse one last time to see how my skin was doing, and since the radiologist was on vacation, I spent a few minutes with his Jabba the Hutt-like fill-in so he could complete the paperwork. I'd have been embarrassed by anything else. Some of those bell-ringing things sound like kindergarten graduations, which I also find useless.

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited March 2021
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    Catching up on this thread. Thanks for the laughs everyone! I really need to get one of those candles.

    Thankfully they don’t do the bell thing here. At least they didn’t when I went through adjuvant therapy. It just seems like such a bad idea on do many levels. And for those of us who will never be done with treatment? Perhaps wringing someone’s neck is an option....

    I also struggle with the whole survivor thing and must admit it’s gotten worse. There is that nasty voice in my head that says, when I hear someone with early stage BC excitedly claim they are a “survivor”, don’t count your chickens! Almost 16 years out I probably should have been able to take a big sigh of relief. But, as others have noted, we’re not survivors until we die of something else.

    Oh the cheerleaders. I try to remember it’s well meaning but it’s pretty damn dismissive to say, you’re doing great when, quite frankly, you’re not! I think my mother is the worst offender, trotting out platitudes and bold statements that simply aren’t supported by the science. Deep down I know she is panicking internally and it’s her coping mechanism but ... ahem... it’s my disease and occasionally I need someone to vindicate my worry.

  • olma61
    olma61 Member Posts: 1,021
    edited March 2021
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    SF-Cakes, I love your Princess outfit! I might go make myself a REBEL SCUM tshirt tonight. I wore my SCREW THE PINK GIVE ME THE CURE shirt to the infusion center one October. Quite a few other patients asked me where to get one. I also bought a shirt that said “Chemo Whore” from another survivor/patient/guy with cancer (lol) who sells them on his website. Not for everyone, I know, but I loved it, especially given how anxious I was to finally start treatment.

    On another note, and not to belabor the point about how much improved cancer treatment is...but before the 1970s we also didn’t have mammography and the screenings for other types of cancer that we have now, so when people were found to have cancer, it was usually in more advanced stages. Hence fewer “survivors “.

    I remember reading about a famous person who developed cancer pre 1960 and doctors did not tell him it was cancer until it got close to the end. The idea back then was not to burden the patient with that knowledge since there was little that could be done. It’s great to be alive in 2021, in comparison

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited March 2021
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    "there has to be some vocabulary for referring to people with cancer and for now they use "survivor"."

    Why? What special word do we have for people who've survived a heart attack? Or a stroke?

    What's wrong with "breast cancer patient" or "former breast cancer patient"?

    As I said before, if someone wants to use the word "survivor" to describe herself, that's perfectly fine. But it just seems that there is a desire to put breast cancer and all breast cancer patients into a pretty pink box, tied up with a box. And if you dare say that you don't want to climb into that box, you are treated as if something is wrong with you.

    image

  • olma61
    olma61 Member Posts: 1,021
    edited March 2021
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    Why does there have to be some vocabulary to refer to cancer patients? Because in certain situations , a word is needed to refer to us.

    If you prefer “patient” that is still “vocabulary to describe a person who has or formerly had cancer”. You prefer one word over another...you are still using a word. Patient is a label for a certain set of people, an so is survivor.

    I googled “heart attack survivor “ when I read your post, I see several sites referring to “heart attack survivors” ...so I think it’s used across the board. I’ve heard it used in other contexts as well.

    I found this paper, studies found “patient” is often a preferred term for the people it refers to, but “survivor” is also, depending on context.


    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6429876/

    I don’t find it a particularly pink word, but you are certainly entitled to feel how you feel about it.

    I am cool with being a patient during my medical appointments but I don’t feel like a “patient” when I’m not in the doctors office. I don’t think I would want my friends referring to me as a cancer patient. Again, to each their own.

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited March 2021
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    Hmmm... if we are being treated for a medical condition, we are patients. That's a statement of fact. "Survivor" is subjective.

    This discussion is veering off from the original issue. I have no problem with the word "survivor" and I doubt that any of us do. It's how it is used for breast cancer patients that bothers me, plus the fact that we are expected to see ourselves as survivors and we are looked at funny (or even told to get therapy) if we don't.

    To my early morning post, heart attack survivors are people who have actually survived a medical event which very well could have killed them. Pretty good use of the word "survivor", I'd say. And while someone who's had a heart attack might say "I'm a heart attack survivor", few will say "I'm a survivor" or call themselves "survivors", without including a reference to what they survived - yet that's common practice among breast cancer patients. It's like a secret breast cancer code... "I'm a survivor too!". In comparison to someone who's had a heart attack, early stage breast cancer patients have not lived through a life threatening event, but only face the potential of mortality in the future. That said, I understand someone who's gone through chemo (or other extremely taxing treatments) saying that they are a survivor, using the word to mean someone who's made it through a difficult situation. As I've said before, there are other events in my life for which I might say "I survived that" because these events were more difficult for me to get through than an early stage breast cancer. So it's not the word, it's the usage and context.

    I agree, to each her own. I'd appreciate therefore if society would stop expecting me to see myself as a survivor, just because I've had breast cancer. If someone else sees herself that way, no problem.




  • alicebastable
    alicebastable Member Posts: 1,944
    edited March 2021
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    How about a new word, HADDIT, a noun. I'm a breast cancer haddit.

    Sadiesservant, wringing a neck instead of ringing a bell is the best idea yet!

  • NotAsCalmAsILook
    NotAsCalmAsILook Member Posts: 133
    edited March 2021
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    I know I’m late to the conversation but...


    this is a journey for me. It’s a crappy journey (not a vacation!) but not all journeys are by choice or are fun. For me it is more than cancer. I was diagnosed with several comorbidities as a result of all the medical appointments (and they are still piling on). So it’s been a medical journey. Plus I’m likely to have ten years of AI... and feel like all the different treatments and tests have to all connect together somehow... so Journey has been the word I am using.


    I am not a warrior. I am the freaking battlefield. I’m a hostage. I’m, at times, feeling like a victim (though I’m not sure I want anyone else calling me that). I’m not a fighter either.

    As you’ve all stated, I survive day-to-day many things. I’m not expecting to ever get an “all clear” soI don’t see survivor as a useful label.

    Since I’m still new to this world of cancer it is likely my opinions will change.

    I’m not a fan of the pink crap. But I am collecting all kinds of swears. image

  • threetree
    threetree Member Posts: 1,349
    edited March 2021
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    That's another one in my book: If I am a "survivor" and I've now "survived cancer" (as I was told my some of the medical staff), why do I have to take this damn letrozole and have all sorts of follow-ups/check-ups for the foreseeable future? As far as I can tell, I still have cancer and always will until a real cure is found and these band aid solutions can be dispensed with - or until I die from something else.

  • alicebastable
    alicebastable Member Posts: 1,944
    edited March 2021
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    ThreeTree, there's a difference between taking a drug to prevent recurrence, like you are doing, and taking one to control an existing situation, as people with mets do. As far as scans, I compare them to taking my car in for an oil change. It doesn't mean my car is falling apart.

  • minustwo
    minustwo Member Posts: 13,116
    edited March 2021
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    I kind of like "cancer hostage" . Thanks Not-As-Calm.

  • threetree
    threetree Member Posts: 1,349
    edited March 2021
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    Hi Alice - It's my understanding that those cancer cells remain floating around in our bodies, and that some hide, lie dormant, and always have the potential to proliferate at some point for the remainder of our lives. To me that suggests still having cancer, even if "active treatment" has stopped. I think letrozole is supposed to suppress those cells' food supply if you will, and again that suggests to me that cancer cells are always there and at the ready to proliferate if they get the opportunity.

  • alicebastable
    alicebastable Member Posts: 1,944
    edited March 2021
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    ThreeTree, that could also be true of people who have never been diagnosed with cancer. I'm not planning to live in fear of "what if." I could get hit by a truck, but that doesn't make me an accident victim just because of the potential.

  • sadiesservant
    sadiesservant Member Posts: 1,875
    edited March 2021
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    The “hit by a truck” analogy makes me think of one of my favourite quotes from BCO. In response to those folks that say any one of us could be hit by a bus tomorrow, they responded “Yes, but with MBC it’s like the bus is going up and down our driveways”. That made me laugh!

  • alicebastable
    alicebastable Member Posts: 1,944
    edited March 2021
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    Sadiesservant

    And for MBC, that's true. But it's not for most people with early stage and low grade cancers.