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STEAM ROOM FOR ANGER

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  • bcfightr24
    bcfightr24 Member Posts: 56
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    Greetings!

    First time on this thread. I'm on other threads but I wanted to find one that talks about absurd comments people and/or family have said to you about your diagnosis.

    This one has been told to me twice by the same person—my mother. To summarize my dx: 2-21-24-Stage 1A IDC, DCIS, Negative lymph node, ER/PR/HER2 +, lumpectomy on left breast, in process of starting rads. Back to mother. Since day one she consistently tells me to "stop worrying, everything is going to be ok", and the like. To mention, I have anxiety, depression, and ptsd. So worrying and being anxious is part of who I am. I struggle daily. Then she tells me, "Oh your treatment won't be that bad because you don't have cancer unlike your dad (who is Stage 3 rectal cancer survivor). I stopped her and told her I did have cancer! She responded, "Oh well that is baby cancer." Baby cancer??? WTH? Cancer is cancer, right?

    I was so frustrated at her I just started to agree with her to avoid confrontation. Well those comments were at the beginning of my journey. Well, today, she said it again! UGHHHHHH! I had to tell her again and she responded the same way as before. I can't anymore. This type of gaslighting is infuriating.

    She does not understand how and what I am feeling and downplays everything I say. I try to explain it to her but yet she doesn't get it. I love her to death but enough is enough.

    Thanks for letting me rant.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,950
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    bcfightr,

    Yes,people, even those closest to us, sometimes say some awfully naive things. The reality is that we can’t control how other people behave or respond to our dx. Most people, including many of us, had no clue that bc was such a complex disease so some of those out there comments simply come from lack of understanding. I also think that some try to downplay the seriousness of bc in an attempt to comfort the patient.

    That being said, DCIS comes with some controversy as it is not invasive. It puts you in a very favorable position as opposed to those who are metastatic or late stage de novo. There are doctors, oncologists even, who do not consider it to be cancer and believe it’s over treated. The vast majority of those with DCIS are treated and never recur but that isn’t always the case so some worrying is understandable. Cancer is cancer, is an oversimplification and simply untrue. Some cancers are invasive, others aren’t. Cancers can be treated very differently depending on what type of cancer you have and there can be many possible variations in treatment for even the same cancer, depending on the type/characteristics of the cancer. You put a smile on my face because my late father always said, “Cancer is cancer” as he sent me many articles about prostate, pancreatic and any type of cancer you can think of. I never could convince him otherwise 🤷🏻‍♀️but it was very sweet and caring.

    Anyway, I hope things get easier with your mom but the biggest thing I’ve learned is that we have no control over the reactions of others. Take care

  • betrayal
    betrayal Member Posts: 2,280
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    I think your IDC dx was overlooked in a comment above. IDC is sometimes accompanied by DCIS and having had margins that were positive for DCIS requiring a second lumpectomy, which then also revealed DCIS in margins, thus requiring the max in radiation. Do not despair. I was frightened by my dx, chose not to disclose to family and to only supportive others, and want you to know you have yet to get your treatment plan firmed up. Once you have that in hand, you will be able to experience less anxiety. Treatment will be based on your findings.

    As far as your mother, she will not accept your dx and while this is difficult, try to block her from future updates on your cancer. There are others, including the women on these forums who can provide you with support, knowledge and a place to rant as needed.

  • malleemiss251
    malleemiss251 Member Posts: 364
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    @bcfightr24, I find it is easier not to waste my energy trying to change people's misconceptions - it can get very tiring and, a lot of the time, not be successful. As @exbrnxgrl said - you can't control how others react. I either try to avoid those well-meaning individuals and focus on what is important to me. I don't have the time to waste getting angry about the idiocy of others and I do my best to focus on positive things. But you know that you will get understanding and support on these boards and not judgement. We know about the fear and the uncertainty even if others do not understand the impact on us.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,950
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    Hey, apologies bcfightr. I skimmed over the part that mentioned IDC. Definitely more concerning than DCIS but it is very common for both to be present when IDC is found.

    Not that I am defending any of the less than helpful comments we sometimes get, but I think back to how totally uninformed I was about bc prior to my dx and it’s likely that I made some naive comments too. It really is a situation that is far outside most folks’ comfort zone, the whole idea of cancer is disturbing, so comments can come across in ways that were not intended.

    I am willing to cut most people slack in this area but I draw the line when someone continues to make off the wall remarks even after they been given the facts and/or been explicitly told their comments are not helpful! I’ve had one or two of those…

  • divinemrsm
    divinemrsm Member Posts: 6,151
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    bcfighter, I just want to kick your mother in the shin for making a comment to you about baby cancer! That is massive minimizing what you are going through. She is trivializing a very serious health issue you are dealing with. It is unfortunate that she feels the need to compare your issue with your dad’s, as if it is some kind of friggin’ competition to see who has it worse! If it were me, I would have to avoid talking to her for a good while. Then I would have to have a heart to heart talk with her and “mom, I love you, but it really hurt my feelings when you said I only had baby cancer, as if it was unimportant. It may not be important to you, but it very much is to me.” The sad fact is that too often, women are expected to quietly handle a health crisis. Your mom may be the type who thinks men are more important than women. I’m so sorry you don’t have her support.

  • m0mmyof3
    m0mmyof3 Member Posts: 9,517
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    In my case when it comes to the misconceptions by some people may be well intentioned but they need to be reminded that what they say is not very helpful. I’ve run into this and I just shake my head and say to myself

  • betrayal
    betrayal Member Posts: 2,280
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    Okay, it is not only the general public that make crass remarks. My former rheumatologist (who I had been seeing for years) when she learned my dx told me "I was lucky, because I had the "good" cancer" and then proceeded to tell me a horror story about a family member who died of BC. I was so shell-shocked I could not collect my thoughts to come back with a response, made a follow-up appointment to see her and then the day after called to cancel. I never saw her again and did send her a message as to how inappropriate her comment was because there is no such thing as a good "BC" or any cancer for that matter. Cancer is cancer but there are so many variants.

  • malleemiss251
    malleemiss251 Member Posts: 364
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    I have had a GP and Surgical Oncologist tell me I was lucky cos it had only metastasized to my bones, even if it is all through my skeletal system. I could only think - "i guess it is all relative". That said, my GP is lovely, and I know she was only trying to give me something positive to hold on to, but this trip I am on is definitely giving me some opportunities to see how others think. I am not always sure I like what I see, though.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,950
    edited June 14
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    One incident stands out for me. Although I knew I was stage IV when I returned to work, I hadn’t told anyone, yet as I wanted to be able to speak with colleagues and answer questions face to face. Let me also say that at the first staff meeting I attended, my principal said something to the effect of , she’s done with treatment and it’s never coming back! Can’t fault her for wanting to be positive and I hadn’t told her about the mbc. Anyway, I told a colleague (sweet young woman, same age as my older dd) that I was stage IV . She flung her arms around me, laid her head on my shoulder and started to sob uncontrollably. I was momentarily surprised by her reaction but then did the only thing I could think of… I comforted her 🤷🏻‍♀️. Yes, it was very strange given that I was the one with mbc but I couldn’t fault her and although a bit awkward in its delivery, her emotions were an expression of caring.
    Cancer, the word cancer, the thought of cancer and all its mysteries brings out the strangest reactions and ideas from people. Remember my father? He believed that my sister , who died from a uterine sarcoma, got cancer because she used the same office chair as a previous employee who also had cancer (but not in any way related to my sister’s!). There’s so much fear, as well as shame and guilt for some, with respect to cancer. There’s also a lot of misinformation and over generalizations which diminishes the complexity of cancer. We talk about it in whispers or we don’t talk about it at all. It’s no wonder that so many have no idea what to say to a cancer patient. As common as cancer is, there is still a stigma surrounding it. Now, throw in the word breast, another word that still makes people uncomfortable, and it’s amazing we don’t have even more questionable comments!

  • m0mmyof3
    m0mmyof3 Member Posts: 9,517
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    So true. A former colleague of my hubby’s made the statement when she learned I was having reconstruction “that I was only doing the reconstruction for my hubby” (face meet palm). He quickly turned it around and said, “it’s not because of me that my wife is doing this, it’s because she wants to look like as close to normal as possible”.

  • ctmbsikia
    ctmbsikia Member Posts: 757
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    Had someone ask me just last week how long I would continue seeing the oncologist. I said probably the rest of my life. She thought "cured" after 5 years. I don't consider myself cured of bc until something else kills me. So many don't get that.

    This month marks year 6 of being on anastrozole. I'm meeting a new MO later this summer. My old one retired. Hope I like her.

  • m0mmyof3
    m0mmyof3 Member Posts: 9,517
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    Tell me about ctm! Some people engage their mouths before the brain kicks in!

  • bcincolorado
    bcincolorado Member Posts: 4,701
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    Happy anniversary . It is a big one as well. I know with my own parents my dad's parents never celebrated anything other than Christmas. They did not even do a birthday cake or anything. When they got married my dad thought she was strange when she wanted to something for his birthday.

  • maggiehopley
    maggiehopley Member Posts: 116
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    When I was diagnosed, I made a comment to my husband about my fear of dying. He said, "What are you talking about? You have breast cancer; that's not like real cancer." I was devastated and never brought it up again. As I have gone through treatment, I am pretty sure that his understanding of the subject has changed.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,950
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    For as much as the pinking of breast cancer has brought attention, and research dollars, to the disease, the unintended consequence is that many, too many, believe it’s no big deal. Fluffy pink boas, save the tatas, sequined bras, etc. have inadvertently trivialized and minimized the seriousness and deadliness (for far too many) of bc. When I was first dx’ed stage IV de novo, a few people were shocked and asked if I skipped my mammograms. Nope. They actually thought that if one just had an annual mammo, and early tx, it wasn’t a big deal and… no one dies from bc anymore unless you have neglected things somehow. I also had two pm’s, here on bco, asking me what I might have done “wrong” to be stage IV de novo (i.e. How can I avoid making the mistake you made?) While grateful for all the money this has brought to the bc arena, those unintended consequences are very real.
    Although I would have been less than thrilled with your husband’s comment, it’s clear that there are sizable numbers of folks who have a deep misunderstanding about bc. Ah, the downside to pinkwashing.