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How well do you feel your family understands your diagnosis?

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Please take our poll and share your experiences below on navigating a breast cancer diagnosis at any stage with your family!

How well do you feel your family understands your diagnosis? 32 votes

Very well understood, I feel supported
25%
jodyjartesasorellaseeqtxloreleinekosanritafulmer14annieincognito 8 votes
Somewhat understood, but there are still misconceptions
56%
clavelleelderberrycookie54abigailjmkestrelkotchajsimplysueluvdbyhimritakayneeds.a.napamel_83zen1028bcfightr24shellrubinbailey.booklstaylorimagesbyvalhopeful4us 18 votes
Not well understood, leading to feelings of loneliness and isolation
18%
sheymaclackietrishyla1karizsue380leesutton99 6 votes
Not understood at all, leading to significant challenges for me
0%
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Comments

  • needs.a.nap
    needs.a.nap Member Posts: 188
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    Somewhat understood, but there are still misconceptions

    I’m learning myself as I go. My family tries to support me as best they can but there are some aspects of all of this that they cannot possibly understand without having experienced it. I love them so much for trying and I’ve gotten to a place where I don’t mind them not fully understanding. I hope they never have to experience it personally!

  • kariz
    kariz Member Posts: 17
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    Not well understood, leading to feelings of loneliness and isolation

    This is probably a rant, for whoever has the patience to read thru it<3

    I feel so frustrated sometimes by my family's actions…

    As a context - I'm 43, diagnosed de novo metastatic BC in Jan'23 after initial BC stage 2A in 2017. Both my parents are alive, I am an expat in another EU country, living with my husband. I'm on my 8th line of treatment in 14 months (doxorubicine at the moment and it will probably be my last), treatments have either not been working or working for very short time.

    I really don't like this obsession with positive attitude. I understand it to some point but I feel it's more like denying the reality and not acknowledging death at all. When I try to say something, I'm met with feedback like "there's so many cases who lived dozens of years with cancer". Insane to hear when my treatments are not working, I'm getting worse and my medical team discussing end of life options. They just don't want to hear it.

    I was also surprised by lack of common knowledge e.g. white blood cells can be negatively affected by chemo and this can delay further treatment. Imagine my mother being surprised by that information last month. She choses to spend her time in church with all sorts of magic aspects (which is fine, good for her she found something soothing), wouldn't mind if she would spend some time informing herself.

    I feel suffocated by the amount of Good morning, Good evening messages on chat, literally every morning and every evening on separate chats from mother, from father, sometimes on family chat with both of them, from other extended family chat (where mother didn't want to join so I have to respond to her separately), some cheesy declarations of love while in "normal" before life we had contact maximum once a week with mother, twice a year with father, haven't heard any I love you all my childhood, I have been beaten and silent treatment from mother.

    At this point I don't want any of them except my husband near me or my deathbed. I'm trying to find a way so I don't inflict this trauma on them and I suffer thinking of both variants, it's just so difficult to deal with their crap and my grief at the same time.

  • moderators
    moderators Posts: 8,089
    edited April 22
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    Oh, @kariz we're really so sorry that you are going through all this 😔 ❤️. Cancer is a full education, and then the person with cancer becomes the educator AND a support person to the others who are trying. It's alot. It sounds like they are trying to "be there", but that it's too much for you. Perhaps you could set some boundaries around this? Have you shared with them how you feel, in general?

    @needs.a.nap , thank you for sharing. ❤️

  • kariz
    kariz Member Posts: 17
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    Not well understood, leading to feelings of loneliness and isolation

    Thank you for your kind message @moderators. I'm trying to deal with this in therapy and hope to get some acceptance over all this.

  • sedonadreaming
    sedonadreaming Member Posts: 12
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    Support…yes. I have lots of that.

    Understanding of disease process? Somewhat, but not really.

    What family hears is the generic "caught it early, great news (it is), you are cancer-free". Had SMX with reconstruction. To family, this translates to great, they cut it out and you're done! Move along now.

    For me, the initial impact is over, but the fight moves ahead. In the back of my head, I will always have a tad of concern for possible recurrence in native breast or elsewhere in body (ILC) and a relative distrust that imaging will see anything if it is there. I will also face the unknown effects of the medication(s) that I will need to take to keep the thing that is "gone" from reappearing because according to the medical oncologist, the two ways cancer can spread is through lymph (not my situation) and blood. Her exact words were, "We can never know whether some cells escaped and that's the reason for the medications." So, nope, not done. Not for a very long time.

    All this said, I sincerely hope that my family and friends never, ever, have to go through hearing "you have cancer" and all that goes with it. I cherish their support, even if they don't/can't truly understand.

  • moderators
    moderators Posts: 8,089
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    @sedonadreaming, thank you for your insight. The constant fear of recurrence is a very real and scary worry that can seem so invisible to those around us, but felt so clearly by oneself. Just know you're not alone in these feelings, and we're all here for you throughout your experience. We've got you!

    —The Mods

  • kaynotrealname
    kaynotrealname Member Posts: 407
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    I think my family understands the basics. What they don't get is the psychological effects nor the long term recurrence problems with my diagnosis. Most are still under the five year rule like with other cancers. So that part is frustrating and I nicely try to educate so that they understand the continued vigilance I have to always be under and the stress from it. They are responsive but don't really know how to help. Which is fine I guess since I don't think there is anyway to help. It just is what it is.

  • moderators
    moderators Posts: 8,089
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    Hugs to you, @kaynotrealname 💓

  • artwish
    artwish Member Posts: 9
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    My Mother died last August 2023 2 months short of her 100 birthday. I had been taking care of her for 12 years. My sister moved here in 2020 to help. I was diagnosed with 1A DCIS, invasive in nods Sept. 2022. We never told Mom and my sister stepped in to help. I stopped going to see her as much. I really did not understand how serious this was till I did my own research. Family thinks this is just a Stage 1 and everything will be fine, but it is not.

    On a 4 night get away last week my sister witness my eating issues when I got ill after eating a home cooked hamburger. Really put a damper on our get away, found it" hard to watch". I also stopped being part of the party since food is a group activity I could not partake in. Drank all my meals after that, Orgain and Purple Drink (5fruits and 5 veg. smoothy that I make) Did my best to enjoy the rest of the trip.

    My husband does not know how to handle all of this. He does not make any effort to learn about my cancer or how to get help to help me. Waits for me to tell him what's what. Very frustrating.

    In fact I do not feel supported by anyone now. Sister move to be closer to her children and grandchild. It is only a hour away but her focus is on them not me. I have 1 part time neighbor (snow bird) that lost her husband to cancer, but I think she is also tired of me. Rest of friends mostly are "don't worry be happy" attitude which is fine but hard to accomplish when I only have a computer to guide and help me.

    Even the Dr. and Nurses think I am a difficult patient because I am not fitting the norm on side effects that persist to this day with no improvement.

    The DR. gave me an antidepressant but I am not depressed, frustrated and angry yes. The side effects of that med. were many and I did not take it.

    In conclusion, they do not understand my diagnosis at all, but it is my fault. I did not understand it either. I think it was Dr. Given who was the issue on poor communication of the diagnosis.

  • moderators
    moderators Posts: 8,089
    edited April 28
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    It's tough not feeling supported, @artwish. Remember, you're not alone here!

    However, do you think that maybe you should consult your doctor and even your medical oncologist to see what else may be going on? It sounds like you've completed all your treatments and the side effects persist? Wondering if there are other potential reasons. We're definitely here for you, but would love to hear you're feeling better in general. And maybe able to get out and about to meet some new people.

    Keep us all posted!

    The Mods

  • lovelau
    lovelau Member Posts: 41
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    I feel the same, I just don't know where to go for help. I went to mental health program for anxiety ( not breast cancer- do they have any like that?) I still have anxiety today ( 6 years) they have after care program, lots of time so many people are doing well. My doctors refused to say they think I will be ok because said they "are :superstitious and didn't want to jinx anything. " They need to have classes so the doctors can learn how to convey bad news with the least amount of distress..

    the mental health docs said the cancer won't come back cause it was small I saw psychiatrist and therapist and I don't know how to find someone to help. The doctors need to learn how to help people with this dx. The emotional aspect.

    There are other of people that don't have recurrance, but we only hear about the ones that do. I'm not even sure if the majority have no recurrance or not? I'm just scared.

    Does anyone wake up with anxiety and know how to get rid of it. It gets less in afternoon. I want to get rid of it cause I want to travel see family and enjoy life, I'm not doing that now.

    Anyone who figured out how to manage morning anxiety, please elaborate in detail to, its my biggest fear. t

  • artesa
    artesa Member Posts: 2
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    Very well understood, I feel supported

    Hi Lovelau,

    yes, morning anxiety makes me wish I didn't have to face the light of day. My stomach feels crampy and 'nervous'. It is more or less is with me throughout the day but taking walks or short hikes on some preserve trails for about an hour seem to help. My anxiety definitely lessens by early evening. In terms of specific strategies of decreasing anxiety I know the busier or more active I am the less I have it. I don't know your level of activity but walking 2 miles takes the edge off. Sometimes I take hikes and tire myself out. I take ativan in the afternoon and I think this helps with rumination and sleep. I love when it starts to get dark outside and by 8:30 or so I am reading in bed. Anxiety is gone. Most early breast cancer does not return. Mine did but I have dealt with other cancers since the initial diagnosis in 2011.

    I try to make peace with the diagnosis and outcome. I dread the regular scans, blood draws, medical visits, it's way too much for me. I would give anything to have my old health back. I'm thinking of joining a support group through the cancer center I go to. I'm not clear on what I'm looking for but I guess it's not to feel so alone and to have a calm stomach. For many people regular physical activity will help with anxiety.

  • luvdbyhim
    luvdbyhim Member Posts: 187
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    Somewhat understood, but there are still misconceptions

    I think my family is supportive but also a bit indifferent since they see me bopping around like normal. The emotional part is difficult for me to express to them. One because I don't want them to be upset and two they really have no idea how I am feeling. There was one point in the beginning of diagnosis where I was crying to my husband and he said it is going to be alright. I said stop saying that. It isnt going to be alright. He looked at me and said Oh my gosh, you are right! I don't know why I said that. I think people are sometimes at a loss of words which in my opinon is okay…then just stay silent.

    People(not family) tell me to be happy, be positive. This isn't even realistic. Were you positive when you got a flat tire? Were you positive when someone irritated you at work? Well okay, so you want me to stay positive and be the happy cancer pixie from cancerland. No not always am I going to be positive! You are not always positive and you don't have cancer or having side effects from meds.

    Don't stress is another nonsense saying. Don't stress. Do you stress cause you can't pay your bills? Do you stress over where your teenager is on Friday night? How about over family gatherings? Stress is bad for cancer. But then you don't want me to stress? Uhm okay, So its okay to stress about these above things but now I can't stress over having cancer? I can't stress over not seeing my first grandchild? Or my youngest be settled in her life? This makes me so crazy.

  • artwish
    artwish Member Posts: 9
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    Thanks moderator,

    A year ago I did go to my GP. She found high blood pressure ,sever allergies and felt my kidneys were at stage 1failure. Oncologist said my kidneys were fine and I got my blood pressure down through diet changes, breathing practices and exercising. Water fitness has been very helpful.

    After returning from our little trip, I messaged the oncologist. Complaining once again about my eating and bowl issues. She was very calming. Said I was doing the best I could with the diet and my body was probable adjusting to all the changes. We also decided to try an antidepressant. Started sleeping much better.

    Just tired of wasting what time I may have left stressing and being angry. Can not worry about how others are handling my issues. Mostly because they are also facing aging and health issues as well. After watching my Mother decline for 12 years, know what it is like to exist not live. Must stop being angry and enjoy life again.

  • elderberry
    elderberry Member Posts: 1,064
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    Somewhat understood, but there are still misconceptions

    Mostly supportive. I actually think they have kind of forgotten I am Stage IV. I apparently look good, my weight is ideal for my height, I am physically active. One actually said "oh, it is getting on five years, doesn't that mean you are cured?" Uh. No. It just means this line of treatment is working and I feel quite well most of the time. I hope it continues to work for many more years or there is an AMAZING breakthrough and a cure is found.

    When I told my closest friends I was Stage 4 most reacted with "How awful for you and your husband. You must be feeling devastated and afraid" I also got "I'll come over and clean your bird feeders if you are taking immune suppressing drugs" and other kind offers. One friend drove over sixty miles to bring me some homemade frozen meals in case I got tired.

    But this "friend" said "So, I am curious. What is on your bucket list?" WTF!!??? That was all she wrote. The first item on my list is living long enough and feeling well enough to even considers..I dunno…a camel ride to the pyramids? I am still feeling crushed by that. I have to remember that she is very self centered, vain and not very empathetic. When I wrote about having my hair stylist give me a GI-Jane buzz cut to get used to the idea of not having any locks and then returning to having even more shaved off so there was about a 1/8 of an inch left, this "friend' said "think of the money you'll save on hair products" My hair was wash and wear. My only product was shampoo. How could she, as woman and a vain one at that, , not imagine the trauma of going bald as a boiled egg? No eyebrows, no eyelashes. We still e-mail but I don't talk about anything deeply personal.

    Yes. There are many who just don't know what to say and for fear of saying the wrong thing say nothing. But I do have friends and relations who will ask "How are you feeling these days? Are things still going well?"

  • moderators
    moderators Posts: 8,089
    edited May 6
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    @elderberry, wow, yes very disappointing comments from this "friend" who seems indeed not like someone who is able to "get it". It's very difficult to be the person with cancer, AND the educator for those in your lives! There are always those people who say things not realizing the sting. We're here for you.