Telling people the news
I am inclined right now not to tell anyone much. My immediate family knows; my boss knows, and HR knows since I'm using sick time to supplement my contract hours to allow me to got 1/4 time this semester(I teach at a University).
I haven't told many beyond that, since I don't have any outward symptoms (though I've lost weight and a few people have noticed—maybe the loss is due to this, but certainly because of an IBS dx this year, inability to find things to eat that don't bloat me, and worry—I can't eat when I'm anxious).
My inclination is to keep it to myself. It's isolating but more isolating when you tell people and they look at you with sympathy (and some with fear) from that point on.
I watched the Michael J. Fox documentary a few weeks ago, "Still". He said he didn't tell people about his dx for years. He was able to hide his symptoms, and he said "if he didn't tell anyone, then it wasn't real". I'm inclined to agree with him right now.
Claire
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Claire,
How or even if one tells people is a highly individual decision. There simply is no one right way to go about it except for the way you are most comfortable with.
I didn’t really care what others thought about cancer/my cancer. That’s not my problem. I wanted to make sure that there were no rumors or gossip about my condition and made it very clear that I would happily answer any questions folks had directly. No looks of pity nor anything that would add to my stress. The result? A loving, nurturing circle of support from beginning to end! I was a teacher (now retired) and my school community was beyond amazing. I literally had only one negative experience and even that wasn’t too bad (I had to comfort a colleague who was distraught over my dx!) .*
Again, what’s right is what’s comfortable for you!
*It’s been 12 years since my stage IV dx. I still sub in my former district and each year there are fewer and fewer folks who know about my dx (I look completely well but very skinny) and unless it happens to come up in conversation, I never mention it but wouldn’t hesitate to if it did come up.
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I get it exbr…I simply don't want anyone to view me as a victim. While most of my colleagues are great, I simply don't want to be asked "how are you doing" every single time they see me, which would happen. I'd like to be seen as myself-as they've always thought of me, and so being careful about who I share with (too much oversharing these days I feel) means that I get to live in non-cancer world most of the time unless I'm at Mayo getting tx. Kind of like any other disease, I guess. If I had diabetes or heart disease I wouldn't share that with a lot of people, either.
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Claire, I held off telling people my dx because I wanted time to process it, myself. Only one family member knew about it, and she attends the various appointments with me and is a cancer survivor. I have only now begun to tell friends and family. Unfortunately, the nosey next-door neighbour bugged me so much about why I stay inside that I lost it with her and blurted out the dx. To which she replied - well that (having stage 4 cancer) is ok at our age (I am 61). It doesn't matter to us. She then proceeded to inform me that bone mets are the most painful. I just shook my head. I figure I can only control my reactions - other people will do what they will do.😂
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Interesting. I don’t believe I have ever been viewed as a victim by anyone who found out about my stage IV dx, but I understood my community enough to know that wouldn’t be the case. As for folks asking how you’re doing, yes, I did get a lot of that initially. It’s only natural to inquire about someone’s health when you know they have had health issues. I also had to accept that if I wanted support from my community, I would have to accept their concern. I was honest with most people though a bit more circumspect with those who I sensed might not offer the kind of support I needed. I really think that my openness solved many of the issues that others feel might occur if people know they have bc. Everyone knew they could speak to me directly. No rumors, no speculation, no gossip, no pity. I set the tone and , for the most part, it went well. Now 12 years down the line and many people are not even aware that I’m stage IV and there is rarely need to mention it but if it comes up I’m completely honest. I guess I was fortunate and understood that I would be supported without pity or anything I didn’t want (however, you simply can’t control everyone’s reactions).
Most importantly? I did what was comfortable and appropriate for me! Remember, I’m the one who has let a few people cop a feel because they were curious about what implants felt like 😂 so I literally have no care about who knows. I also know I am probably a bit out there when it comes to this issue 🤷🏻♀️. You do what feels right to you!
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malleemiss251,
I made my previous post before I read your comment. That is the absolute truth! There will be some folks, like your neighbor, whose questions/comments are not comforting but that is their problem!
“I figure I can only control my reactions - other people will do what they will do.😂”
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I told everyone at my job, where I've worked for nearly 20 years. What was interesting was that most people had no idea what "metastatic" meant, they just heard breast cancer and assumed I'd be fine after I was done with treatment. People forgot about it after a while, as I continued to work and appeared to be doing okay.
Many were surprised when I announced, two and a half years later, that I was going out on extended medical leave. I had to remind folks that I still have stage 4 cancer, but I've known these people for such a long time and I felt comfortable telling them. Several of my colleagues told me they thought I was "so strong" but everyone was amazingly supportive and kept encouraging me to do whatever I needed to do to take care of myself, including take a long leave.
My family is aware, but i actually share less with most of them (except my Mum, who knows most everything). My sibling lives far away and is kind of uninterested in any details, which is fine by me. I have three good friends who I can share a lot with and they don't say dumb things! My husband was my best friend and only he knew how much I struggled at times, and since he died I just imagine what he would say if I'm having a hard day or hard moment.
I haven't told any of my neighbors, for the very reason that malleemiss brought up! They were really sweet when my husband passed, brought me flowers and helped fix my front gate that was loose, but I do like my privacy in my home, so nope to that.
It's totally up to each of us how much or how little we share, with each person, and at each moment. Sometimes I want to talk about it and other times not at all.
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Claire, as you can see there is no right or wrong answer . When dx stage IV I chose to wait to tell people, really to see how i felt on treatment and how I responded . This was the end of 2019. I am still working (selling real estate). I have told close friends , mainly out of state and my sisters plus parents . Of course my kids and husband know ;) I have been fortunate to feel pretty darn good and I have responded well to ibrance / fulvestrant . I honestly don't want the situation that mallemiss brought up - when I had stage 1 in 2008, I had people say the most bizarre things to me ."...drinking coffee causes breast cancer , my friend's mother died a horrible death from breast cancer, people who have lumpectomies are vain and guaranteed a recurrence, I'm so happy breast cancer doesn't happen in MY family " (it doesn't in mine , either ) and a few other random and/or very false statements which I found beyond frustrating. It was annoying, unnerving and I often felt like my stage 1 dx was a public service announcement that allowed people to spew false info AT me (2008 was well before the term "fake news" was often discussed). Like Divine said on this thread, I often found myself reassuring them.
Friends and family that know are super supportive and never treat me differently . I told my boss at the time of my recurrence that I had to have scans (I had to miss some meetings) and he asked me if he needed to worry about me . I told him "not yet , but I'll let you know if that changes ". He is no longer my boss (I am self employed so he is the Managing Broker that reviews contracts and advises me ). We are friends and he will occasionally ask me if things are good and I know he's checking on my stage IV.
If I change treatment and / or retire I'll be more vocal . For now , I really appreciate keeping my dx on the "down low" while I'm actively working .
Edited to add: I was very open about my 2008 stage 1 dx and am not shy about discussing breast cancer in general . Lots of women discuss menopause and hormone replacement and I am not shy about telling people I take hormone blockers to reduce estrogen due to my er/pr + breast cancer history.
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claire,
Tho everyone knew I was diagnosed with bc, I told only family about it being metastatic to the bones and asked them to keep the information private. I did not even tell close friends. I was overwhelmed by the diagnosis and did not want to spend energy I did not have trying to make others feel “better” about it. At the time, I was one of those people who consoled others while ignoring my own feelings (I have since developed better emotional boundaries). Controlling the news was a way for me to retain some power over a disease where I had little control. I also didn't want cancer to be the lead-in for every conversation I had with anyone. There are some people who act concerned but aren’t, and some who are clueless and thoughtless (as per aprilgirl’s above post). It just wasn’t my personality to put those people in their place. I didn’t want to deal with that, so confidentiality was my best approach.After having a good response to treatment for over 7-8 years, I experienced some progression and when I told my sisters, they started treating me like I was at death’s door. It pissed me off and I had to call them out on it. That was just before the pandemic started. I’ve also had a few medical professionals look at me with sad compassion as if I were gonna check out any minute. When I was taking the anti-hormone Arimidex (one pill a day), my pcp couldn’t believe that’s all I was doing for the cancer. Yet it kept me stable for years! Still, others in the medical field get it. My radiologist, whose services I recently needed twelve years after the first time, walked into the room saying to me, “miracle patient! miracle patient!” I appreciated his recognition that I was having a pretty good run.
These days, I’m more open about the stage iv mbc, but there are still many who don’t know. Some don’t understand. They think I should look sickly, wearing a hospital gown with my butt peaking out in the back hauling around an iv pole with a chemo iv in my arm. Because I don’t look sick, I think some people thought I was making things up, even tho it’s not my nature to be dramatic. It’s not an attention-seeking thing. It’s a reality I deal with daily and I accept that some will understand, some won’t.
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That is how I feel divinemrsm, I feel I have so little control and privacy - and this is incredibly frustrating for a self- confessed control freak who really likes her privacy. My sister is wonderful, but occasionally will ask probing questions - she is a nurse. I know it comes from a place of love, so I bite my tongue. I am taking this as an opportunity to learn how to "play nice" with people. But I value what little control I can keep and wonder if I will ever learn how to deal with well-meaning - and sometimes not so well-meaning gossips.😇
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@malleemiss251 I can relate; my mother was a nurse, and has all the probing questions. I've been filling her in on details as I go through this very recent diagnosis process (I'm still doing scans and tests).
Alas… she immediately passed all the info along to various relatives and family friends back in my hometown (which mercifully, is across the country from me). It hadn't even occurred to me to ask her to keep it under her hat until I knew more. I didn't dream she'd spread it all over town. I'm not thrilled about the loss of control there. No use crying over spilt milk, though. I suppose she needs her support network of her own. I'll try looking at it that way.
I am mulling over if or when or how to tell my coworkers. So far, I'm saying nothing. But they are very aware that I've had a ton of appointments all of a sudden. I think when I have a treatment plan, I'll consider saying something. My manager knows and is good at keeping things confidential so far. I know that eventually things get around though. Some people there I've known for quite a few years. There's really no easy answer to this situation.
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Claire-Trust your gut. You can always tell people later on but you can never "untell" them, although I find many people will forget if you stick around long enough.
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Chicagoan-LOL! Too true! I started with chemo therapy when I was diagnosed, so I had to tell since the bald head would be a dead giveaway. I didn’t immediately tell people that I was stage iv, only if they asked certain questions and IF I wanted to share that. It’s been over 2 years now, and it seems like most people (except those closest to me) have forgotten all about it. Mostly that’s fine with me, but I’ll admit to being a little annoyed sometimes. It’s especially irritating when coworkers make comments about my frequent vacations. I feel like saying “try a terminal diagnosis on for size and see how that changes the way you live your life!”
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mozuke, you raise another good point. While some people think a person must appear sickly and frail when diagnosed with metastatic cancer, others can be flippant about it. You might get comments like, “We all gotta go sometime!” “I could be hit by a bus!” “No one has a guarantee of tomorrow.” and so on. People sharing news about having a stage iv cancer diagnosis deserve compassion and understanding but won’t always get it.
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Claire, I totally agree with you on not telling everyone. I retired from teaching in June. For me, I did not want my stage 4 diagnosis to be part of my legacy. Only two people at work knew and they kept it to themselves. I have had to remind friends that know not to keep asking me how I am feeling. If I am doing something wonderful and enjoying myself in that moment, the questions manage to bring me back to a life I had escaped, even for a moment. My first scan brought well wishers and many questions before I had the results. The questions made me anxious. Now, just my husband and I know what will take place. I think we all have to do what makes us feel comfortable.
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Great perspectives, all. I can relate to a lot of this, especially the stories I would hear when I told people in 2011 about my initial dx. I had one person say, Oh, yeah, my wife had that..I asked how she was doing , and he said "she died". So right now the less said the better.
Casey714, you read my mind. That happened to me during my original dx, and that is why I'm being much more careful about it this time around. I had a friend, good friend, who wanted me to reassure her a lot that I wasn't going to die soon. It was burdensome. I have enough energy to do that for my daughter, but really not anyone else at this point, though I have compassion for my friend who worries a lot.
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claireinaz,
Funny that you mentioned the friend that wanted reassurance about your health. I had one reaction from a colleague, who was much younger than I was, that was challenging She flung herself on me, kind of forcing me to hug her, and cried hysterically. I spent quite a few minutes consoling her and knew I would never mention my bc to her again. While I am glad that she was caring, it was strange to be consoling her .
Always the odd one, am I the only person who is totally open about my stage IV dx? Shoot, I can’t even do bc typically 🤷🏻♀️
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Casey,
I am stage IV de novo. I taught for a bit over 10 years post dx. My school community was one of my greatest sources of support and save for one colleague (see post above) they were beyond amazing, both staff and families. My daughters had both attended the school before I taught there so my roots in the district are deep (small school district). I still sub about 2-3 days a week and it hardly ever comes up.
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Exbrnxgrl,
I appreciate your insight and I glad that for you disclosure was positive. This time I felt more of a need to not divulge information. For me, I wanted to be the teacher that retired. Period. I didn’t want cancer attached to my career. Having a limited number of people know let's me control the narrative. It also makes me realize that everyone has a story We don’t really know what is happening in anyone else’s life.
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Hi Claire!
as said above there is no right or wrong. Do whatever feels good for you. And it is ok to change your mind later on if you feel like it.
when I was first diagnosed with early BC 6 years ago I was totally open. Everyone knew. I never stopped working and was wearing a scarf instead of a wig so not much to hide there . Back then being open really helped as people that I never thought we were close became my support system.
this time, in stage IV diagnosis only a few good friends , family members and colleagues know.
this should be no more than 7 people.
this is how I feel right now,
mostly cause I am not in the mood to answer questions or get everyone’s opinions .
I guess I need time to find my footsteps in my new normal . It’s been only 2 months since me dx and keeping in this in a closed circle seems to work better for me right know.
Feeling good and being able to keep doing all my normal activities gives me the option to not share beyond this circle.
however if I feel I wanna share more I will do so.
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Lady.hope,
I am the same. Again, it just seems like it's a "need to know" thing for me. Outwardly I look the same; inwardly I feel the same (mostly, so far the side effects of Verzenio and Fulvestrant have been manageable) and I simply want to continue feeling and being treated as though I don't have anything threatening. It feels right for my mind and spirit. My hiking girlfriends know; one colleague at work knows (we've been friends for years), my Dean/boss knows, and immediate family knows.
Exbrown, I wonder if you felt comfortable telling more people because you were de novo at the beginning? I told everyone when I was initially dx, too.
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Claire,
My story ran a bit of an unusual course. After my bmx, I was staged IIB. I had a single positive sentinel node with no reason to suspect mets. I had a port installed and over the course of two weeks, after an unrelated PET , they found not only a complete pneumothorax but the spot that was later biopsied and a twin to my breast tumor. It was also 2 cm so given that it was grade 1, it had been there for a while. So… all of that happened while I was still on medical leave . By the time I returned I was already stage IV but some people had gotten the earlier stage IIB info (only accurate for about six weeks) so I did have a bit of explaining to do but I wanted everyone to know that I would be as honest as possible and welcomed those who had questions/concerns so there were no rumors or false info floating around. The response was not 100% perfect but nothing ever is. It was an honor and very touching to have experienced such caring from them.
Oh gosh! I just remembered one difficult parent. I went on medical leave about ten days into the school year and informed the parents in person at back to school night. I was out for 3 1/2 months. My dd was pregnant with my first grandchild and so I took ONE day off when she was born about two months after my return. A parent complained to the principal and demanded that her child be transferred to another class. That wonderful principal denied her request and noted that I did not voluntarily get cancer and she couldn’t imagine why anyone would begrudge me a day off to meet a first grandchild! Some people 🤷🏻♀️
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OMgosh exbrwn, I can't believe people can't be that thoughtless. You just can't fix stupid sometimes. You are quite the role model for us, though, and I appreciate it… a lot.
I have a friend who was dx Stage IV ovarian cancer…twice. She's been NED for a decade now. I figure if it can happen to her, why not more of us? At least it's a more positive way to see things.
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Thank you. If I have learned anything in the past 12 years it’s that I have no control over the behavior of others. That parent was definitely over the top. If I’m a role model at all, and I don’t think I am, it’s by accident and without any reasonable explanation. No one knows why I’ve done well so unfortunately there’s no advice or anything I can share to help others. Every bit of good luck I’ve had since my stage IV dx is simply that, plain old luck, which I find frustrating.
exbrnxgrl=ex-Bronx girl
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