Newly diagnosed DCIS
Hi all, I am newly diagnosed with DCIS and have had a few dismissive and unsupportive responses to the news from family and friends. Wondering if others may have also experienced this in regards to DCIS and how they have managed it please? While I understand DCIS may have very positive outcomes, it is still overwhelming and abit to process. So glad to have found this forum. Thanks in advance.
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I think the word cancer plays games in people's heads. They get panicked when they hear it, and then relieved when it's DCIS, and then feel like they've been for a ride and don't know how to manage their own emotions fast enough to be supportive of you.
One option would be to use the term 'pre-cancer' when talking to people who don't really know the medical stuff. It's enough to let them know it's serious but also that they don't need to go into full alert mode. Then they'll be more likely to be able to hear you when you tell them what you want from them, whether it's supportive listening, help with getting to doctor's appointments, etc.
If the people being unsupportive are people who are generally not great at being supportive for other things either, then that's just who they are. Your cancer experience won't magically give them empathy or people skills. You might decide not to share with them or not to discuss it with them even if you do share.
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I have mixed feelings about this topic. Even within the breast cancer community comments can come off as dismissive (they aren’t meant to be but depending on the place you are in your own journey and what support board you use, what someone writes and what another person thinks they are saying can be different). Even within the medical community a former poster was told by her breast cancer surgeon that it really wasn’t cancer and she shouldn’t worry so much 🤦🏻♀️. My surgeon on the other hand (who firmly believes that DCIS is probably over treated because there is no way of knowing if any one individual persons DCIS is going to just hang out where it is forever or if it actually has the potential to become more,) if we are treating you the exact same way as a “cancer patient”, then you are a cancer patient. Lumpectomy, radiation, AI. That’s cancer treatment.
Like I said I have mixed feelings because for most people DCIS is treatable and they are one and done but you don’t know if you are going to be that person or not. On the other hand, you also know is if all you have is truly just DCIS , you don’t need chemo, you don’t have anything that is considered/is invasive. Your overall chances of reoccurring is lower BUT again it’s not zero.
But I’m not in your position I didn’t have any unsupportive or dismissive interactions. (That I can remember maybe I ignored them). But I think I also managed my interactions from the beginning and the information I shared. (I don’t think I ever used the term DCIS. I think I probably said something like early stage non-invasive breast cancer. Maybe I just have too many friends, family and coworkers who have been impacted by cancer of various types that if I was taking it in stride they were taking it in stride.
I think the hard part is that most people don’t know how to respond and when you yourself are new to the diagnosis and are still trying to process the information and what it means for you, you may not be in the best headspace to educate someone as to what you need from them. I guess one thing to do is find the people who are supportive whether that’s a family member or friend or a therapist that your medical team recommends or a nurse navigator or anyone in person that you can be not so strong with. That you feel comfortable being real with about how this still sucks. Yes you have something very treatable but it still has to be treated. You still have to go through a bunch of crap and that still is going to be overwhelming
and find your joy. Whether it’s great piece of chocolate to eat after radiation if you do that or a sound track of music to listen to as your drive to 80 dozen appointments or a trashy romance novel to read in waiting rooms. Because if you give yourself something to smile about then those who bring you down might be less of a factor
I am not sure any of this is helpful. I know I am being long and rambling. I wish I had a better answer
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Hi April:
What you are experiencing is very typical. DCIS is the best case scenario when it comes to breast cancer. And yes, the cells are cancer. Not to scare you as this is unlikely, but there have been very recent and tragic deaths of BCO members that were originally diagnosed with DCIS. My approach is to be thankful and diligent. I ended up with a mastectomy and radiation, again unusual, but not a treatment for a pimple. It needs to be taken seriously. Go on a DCIS forum and receive the support you need. After ten years, I do believe that I may have overreacted, but I hope I feel this way over the next 20! Your diagnosis is serious and needs to be taken seriously. Once you get accustomed to your treatment and outcomes, you will likely relax. But it is shocking and scary now and your feelings are real. Get support from those who get it. Like here ❤️
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Hi April
Said this a few times
Never ever underestimate DCIS diagnosis
Always be vigilant
Yes most have great outcomes but some have it come back in the breast
and some like me in rare cases have it return as Metastatic cancer
All the best bright in hope
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Thank you so much for all your responses.
You have left some wonderful insights, advice, and food for thought for me. I truly appreciate it. I am also so sorry to hear of recent and tragic deaths of BCO members and others who had DCIS return as Metastatic cancer. This definitely hits home.
It's very possible I may be overly sensitive at the moment whilst I am still processing. I may be misinterpreting some peoples responses as dismissive or downplaying things, when they just potentially don't know what to say or how to best support me. (It also makes me reflect on times in the past I may have been like this for others, and have tried to be super positive which may have come across as downplaying - when what they actually may have needed from me was someone to listen).
The first day of diagnosis was hard (one week ago) and I felt quite alone, but I am definitely trying to be more positive and hopeful. Next step is to book surgery date.
Can't thank you all enough for responding and reaching out. It means more than you will ever know. ❤️
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Hi @aprildays22. I hear you!! I’m sorry you are now having to accept this as part of your life … I don’t wish any of this on anyone! Whether it’s DCIS or more, it still requires a lot … and takes a toll. Of course we are incredibly grateful when it’s early stage and I know we have no clue (!!) how those with metastatic feel, but this is real for us and requires difficult decisions and changes our lives. I appreciate how kind those who have metastatic cancer are on here, gently reassuring all new ones!!!
I didn’t realize how carefree I was before my diagnosis, because now I’m aware of things I didn’t pay much attention to before, and carefree is gone. I still feel joyful but not as carefree (not that I ever would have described myself that way anyway). I probably make no sense. At first I had a hard time listening to positivity. But I’m absolutely guilty of that - whenever a friend is struggling, I try to be positive and cheer them up, but maybe not acknowledging how they truly feel. Sigh. I didn’t realize how dismissive that can feel. There’s a lot of personal reflection and self-awareness with this!!
Somewhere on this forum I came across this podcast recommendation and listened to her first season and found it enlightening and helpful … for what it’s worth …
Upfront About Breast Cancer What You Don’t Know Until You Do with Dr Charlotte Tottman podcast
Sorry that’s not an active link. I know I wasn’t ready for the emotional journey of a breast cancer diagnosis but hearing it described by someone who went through it and is also a psychologist who works with breast cancer patients was super helpful for me. She discusses being dismissed by positivity too.
I hope you feel calm about each decision and step of the way!! Best wishes!
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Thank you so much for your reply @needs.a.nap Thank you for the podcast recommendation too. I will definitely check that out. 😊
Thank you also @bright55 @tb90 @quietgirl @salamandra for your thoughtful responses (I could not figure out how to tag the other day in my earlier response 🙄 - apologies).
I am really glad to have found this community.
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