How well do you feel your family understands your diagnosis?
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? 22 votes
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14 votes
4 votes
Comments
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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!
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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.
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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. ❤️2 -
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.
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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.
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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
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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.
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Hugs to you, @kaynotrealname 💓
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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.
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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
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