Telling People?

pclaradactyl

I'm normally a pretty open book. And as scared as I am, I still feel very willing and open to sharing my diagnosis. But knowing that many people choose to keep the info private, I'm wondering if I should be less willing. Are there major downsides to people knowing I have breast cancer that I'm not thinking of? Or does the support that comes from people knowing outweigh the risks?

Everyone I've asked has told me it's just a personal choice how much I chose to share, but if I disclose I know I can't take it back. Is sharing something I'll regret? Or if I feel comfortable telling people should I trust my instincts as it has pros and cons either way and at least I won't have to stress about hiding it or telling people slowly over a long period of time?

Fairydragonfly

I'm sorry to hear you've joined our ranks. Here's a funny story about how my colleagues found out.

On April 17 my GP told me my biopsy came back positive for cancer. It was a Wednesday and I wasn't due back at work until Tuesday (Easter long weekend). A couple people at work knew prior to diagnosis because the stress and multiple appointments were impacting my work. I went in on Tuesday and had a private conversation with the two who knew. I was pretty devestated, but their support was amazing. Together we decided to hold off on telling the rest of the team, as I really didn't have much information at that point (wasn't meeting the surgeon until Friday).

Then my surgeon called. She told me it was stage 1 and highly treatable/curable. Needless to say, my relief and joy at finding out was apparent. I went to tell my manager. She kept hugging me, sharing in my happiness.

Here's where things went awry. My colleagues, seeing the happiness and excitement between me and my manager, asked me to share my good news. So, they found out about my cancer diagnosis when they were expecting something completely different.

I am an open book. I have probably overshared my cancer experience, but the love and support that has come out of it has kept me sane.

I agree it is a personal choice, but I have no regrets about sharing my diagnosis. I say trust your instincts. ❤️❤️❤️

Oya80

I chose to share because I knew I would need the support. My diagnosis left me completely govsmacked. So I knew that I wasn't going to handle it emotionally on my own without the love from friends and family. Not only did I tell the folks at work, I even posted it on Facebook. Survivors shared their stories, uplifted me in prayers. My spirits are so high &I know I wouldn't have such a positive outlook if I wouldn't have had the space to process the emotions.

I'm an executive and I was reluctant to tell the folks at work but I've gotten so much support from them too. While some folks may think that sharing a cancer diagnosis makes them look weak, the completely opposite effect happened for me. My colleagues are amazed at my attitude and resiliency. I feel that people respect me even more now. Best of luck to you in whatever you choose.

Moderators

Hi Pclaradactyl-

We're glad you've joined our community, although we're so sorry for what brings you here. This is a safe place to share and get support, and you're among people who know what you're going through.

You'll likely get a variety of answers, and all of them will be valid. How you tell people or who you decide to tell is a very personal decision, and only you can know when it feels right. Some people, as Oya80 mentioned, tell people in their life because they need to be and feel supported. Others have considerations to make when it comes to their jobs or kids, so they may take a different path. Trust your instincts, and do what feels right to you. And remember, just because you share your diagnosis with some, doesn't mean you have to share it with all! Who you decide to let into your space as you deal with breast cancer is entirely up to you.

The Mods

AliceBastable

I keep in touch with family and friends through Facebook. I don't friend anyone I don't know and like already. So, I waited until the day before surgery to announce it. I kept it upbeat and even humorous. I got some responses of the "You've got this!" variety (tempted to reply, "Why, yes, I do, I just told you." but why start unnecessary wars?). Also did a quick update after surgery. Guess I was too upbeat, because nobody asked how I was after that. Same when I had re-excision the next month. Mostly same when I had a nephrectomy the month after, except for a brand new niece-in-law who offered to do anything and everything, but I turned her down because she's already swamped with a young baby - but what a great addition she is to the family! I think my hubby talked to one or two of his brothers because he needed to vent. So it REALLY depends on what kind of family and friends you have. But one person I knew from work has become one of my best friends because she constantly checked on me via text - and she's been living with Stage 4 cancer for years. She KNOWS we need that "how ya doing today?". Hope you get just the amount of support you need.

MountainMia

My diagnosis came nearly 3 months ago. First husband and I told our 3 adult children, and then our own siblings. We told them they could share that info with other family members, but that we didn't want any info/speculation batted around on facebook. I told my best friend, and so did he. Gradually we added in others, depending on our relationships with them.

We each have volunteer duties and needed to let people know that there would be times we'd be unavailable. It's totally okay to be vague or uninformative if you do that. NO ONE needs to know why you can't do volunteer work, unless you want them to. However, being more clear also can reduce their sense of frustration if your participation suddenly drops off, and they'll be more supported and supportive if they know a bit more. "A health problem" or even "a personal situation" may be enough to say. Or you can tell them all about it. Again, your choice. Paid work relationships can be managed in a similar way, though you'll probably have to give more complete explanation to your boss and/or HR.

Originally I planned NOT to announce things more generally in facebook. I'm like AliceBastable above -- my friends list is short and is people I know, or are important to me personally. Finally yesterday, again almost 3 months into this, I decided to tell them. A bunch, maybe most, already knew because of my relationships with them. But some did not.

I told them my current status, post-surgery and having problems getting chemo started. And then I wrote this:

"I said at the top that I don't want to talk about this here. Honestly I don't. I appreciate your concern and good wishes beyond all words. But please don't randomly in facebook ask me how treatment is going, how I'm feeling, etc. If you want to ask, please email me. It's much easier for me to hold your email until *I* feel like answering that way. Email, please. NOT facebook messenger. NOT random facebook questions. Email. You can email me at _____ if you want.

That said, now and then when I do post something here about it, you're welcome to ask me anything you want."

Because I know these people, I know that for the most part, that will work.

I don't really have any reason to keep it a secret. What I don't want is having to manage how other people feel or react. I don't want people gossiping and speculating. If they have a question, they should ask ME, so I can tell them clearly what the scoop is.

One thing I've noticed is that people ask "How are you?" as people do. And I don't always remember who knows or not. And I don't know how to answer. So I answer mostly how I feel at the moment. Do I feel fine? Then I say, "I'm fine! How are you?" Fortunately right now that's most of the time. But it feels a little surprising and confusing with every encounter. Weird.

Good luck with navigating this. This part is one of the many stresses that we face. For the most part, you can't do it wrong, as long as YOU are comfortable with it.

Salamandra

Hey plcaradactyl (LOVE the user name),

I'm also generally an open book, I don't have the energy to think about gatekeeping information, and I was very open about my diagnosis - including posting it on FB. That approach worked for me.

I would say that the only downside was when people's ignorance about cancer led them to make assumption that were untrue. Like, that since it's early stage, when I came back to work after radiation I was completely fine and should be able to resume like nothing happened - even though I still have many monitoring/MD appointments and tamoxifen is doing a number on me side effects wise.

I'm not sure I could have done things any differently. But if I were doing it again, I might try to be more thoughtful about managing supervisors' expectations at work. Like Fairydragonfly, I think I was so very relieved that it was early stage - and shared it with my supervisor - that it ended up minimizing things a little. But it wasn't a big deal either way, actually, just required me to do the expectations management later.

Scrafgal

I echo everyone here in that I was an open book, once I had my treatment plan in place. I also started a Caringbridge blog and let people know that I would post updates there. I was too tired to answer calls, emails and texts randomly from everyone that I know.

I work in a public role where the rumor would be worse than the truth....even still...when I told people it was early stage yet needed chemo, a rumor started that my cancer was"worse than previously thought." I had to post a blog to reassure people that early stage does not free one from chemo and that my prognosis was actually quite good.

Did people start giving me clean eating advice as though I caused my own cancer? Yes. That's just the way some people are and you have to take the good with the bad when you share the news broadly. ...but....net net..No regrets. I got more love in my life overall. A few old friends disappointed me but new ones surprised me.

Remember...people can't fully support you if they don't know.

Caveat: If you don't want co workers to find out, then don't tell any of them...don't blog or Facebook...tell anyone that you tell NOT to disclose just to be clear. When people tell me things like this, I err on the side of not telling...once I found out that the person actually wanted me to tell our friends on their behalf. So, just be clear whatever you do.

mustlovepoodles

I shared with people who know me well and with whom I interact frequently--my family, my Sunday School, my co-workers. I do not regret telling those trusted friends and family. They supported us with meals, kind words, and practical household help while I was under the weather with chemo. I did not put it out on Facebook until I was finished with all treatments and surgeries. I didn't want to be a topic of online gossip and I really didn't need the "expert advice" on how to treat BC from my friends in the class of '74.

AliceBastable

The oddest situation for me was at the church my son attends. I'd forgotten he'd mentioned it there. When Hubby and I went to a social event there, I was swooped down upon by people I barely knew. They meant well, but damn. I really coulda used a flyswatter. I don't handle gushers well under the best of circumstances. So cold nothings from most family and friends, and overwhelming concern from strangers. Weird world we live in.

edj3

Scrafgal, you wrote "Remember...people can't fully support you if they don't know." Wow, I needed to read that today.

I was diagnosed April 9 and have selectively shared. It's been emotionally draining handling other people's reactions about my disease and I get worn out fielding well intentioned questions about how I'm feeling.

But.

You are right. If I don't tell a lot of my friends, then they can't support me. And I'm probably sending an unintended message about our friendship.

Lots to ponder, thank you so much for posting that today.

Scrafgal

You are welcome edj3... I wish you well.

MountainMia

AliceB, that made me laugh a bit. Similar here. My sister's church friends have been sending me cards. It's lovely in a way, but also makes me slightly squeamish. I'm a comfortable agnostic, so don't believe that their prayers are "helpful" to me, in an interventionist way. But it makes them feel better, and it makes my sister feel better, and it doesn't hurt anything, so, okay... Just don't make me obligated to acknowledge all of those cards, because then it's a burden.

And REALLY, that's the main thing I don't want with telling other people: I don't want to carry a burden of managing how they feel about my cancer and treatment. But NOT telling people is also a means of managing that, and there is burden with that, too. Hard to know which way to go sometimes.

mom2bunky

This is a great thread. I really have nothing useful to add except to follow your instincts. I told some people right away, including my 18 year old son and my immediate supervisors. I could never keep it from my son, he’s almost a man and very intuitive. Telling my supervisors allowed me to do what I needed to do and be gone from work with their full support. I told my closest friends and a couple of less close friends who are BC survivors because I wanted/needed their support, and I found it. I told a couple of colleagues at work, but that’s it. If it spreads I don’t particularly mind.

My mother is gone, but I did not tell my 89 year old father and never will. He must never know. I waited to tell my brother until I had my pathology report so I could give him details which in my case were positive and comforting.

I told my aunt & uncle, with whom I’m very close, immediately. My husband and BFF, also immediately and they rode the early emotional tidal wave with me.

The rest of our large circle of friends/acquaintances will find out whenever. It’s not that I don’t care about their reactions or how they’ll feel. It’s just that I can’t be responsible for that right now. If/when we discuss it, I’ll be open with them then

I will say this, the beauty that my diagnosis has brought out in people has been overwhelming. So much kindness and genuine concern. It’s been a remarkable positive during this entire ordeal.

Follow your gut.

DiagnosisDisruption

I work at a school, so staff knew (I was out for 3-5 days every three weeks due to chemo so it sort of had to be done) but students did not know. Not that it was a secret, there was just no big announcement.

Caringbridge all the way, though. I started that and kept it faithfully updated. The absolute last thing I wanted was to come home from chemo feeling like crap, have the phone ring and have to hear my husband repeating, "She's tired, had a bit of a reaction to the port needle, but she's okay," over and over while I was trying to nap. Front and center on caringbridge was "DON'T CALL ME!" Yes, jerk-move, but this time was not about someone else's feelings, it was about mine (probably another jerk-move, but couldn't muster the "care" aspect).

moth

I tell everyone. I think some people are probably taken aback - like when I just met someone walking her dog while I was walking mine & we're having a normal dog person conversation (which is not really normal if you know serious dog people LOL) but then I mentioned that I got my latest dog while I was on chemo for breast cancer. I think she kind of stepped back

but hey, I'm matter of fact about it. It happened, it sucked, I'm still dealing with it. If I'd broken a leg skiing just when I got a dog and it had made intergrating a new dog into my home tricky, I would have mentioned that so I don't really see a reason to avoid it just because it's cancer.

Also, I found my cancer myself just a few months after a clean mammo so I like to get out my PSA to do your bse and poke around your breasts yourself in addition to regular screenings.

mustlovepoodles

moth, I had similar experiences. I found that some people just were jolted when I mentioned anything about cancer or chemo. Like, they were afraid to say anything or that they might say the wrong thing, so they avoided any conversation that might be hard. I even had some close family members do this.

Interestingly, my cancer was found on a routine mammogram only 3 WEEKS after a thoroughlly normal manual exam done by my doctor. Go figure.

kber

Hi - I also didn't keep my diagnosis or treatment a secret.  My husband was there for me throughout, and we told our kids, parents and siblings first.  I asked them to spread the word because the emotional toll of telling people and, as posted above, managing their reactions, was getting to be exhausting.  

I started a caring bridge site, which has been very useful and I posted a quick update on Facebook, but honestly don't trust their privacy policies enough to share much information there widely.  

At work, I told my boss that I was waiting for biopsy results and then updated her when I heard for sure.  Besides that, my admin, who had had cancer herself, was able to tell from my calendar that something was up.  She came into my office one day to ask / offer her support.  She had been an unexpected and wonderful source of strength.

I didn't hide my diagnosis at work, but basically let the rumor mill do it's work.  I'm an executive and had to have some reason for temporarily stepping back.  However, I didn't share my caring bridge site with anyone I work with.  They don't need to know the gritty details.  

edj3

I started the ball rolling with sharing with the rest of my friends so thanks, Scrafgal!

I've had a blog since 2009 so I use that to communicate more detailed updates, been texting a lot and emailing too.

Sharing with my adult children was by far the hardest. They are worried about me, even though I have a great prognosis. In fact, my older son and his wife are driving here this weekend and I think it's to lay eyes on me and make sure I'm doing well. Makes my heart swell to be honest!

AliceBastable

I may be facing an awkward situation in a few weeks. One of my other cancers may have reared its butt-ugly head, and I will find out the results of my biopsy on Friday. IF it's back, it will pop me into a different category, stage 3 or 4. All my family and friends assume everything is just hunky-dory after my medical adventures last year. I'll be seeing most of them in a couple weeks, but at the worst possible gatherings for sharing any news of this type. One is an interment and memorial for a dear friend who died of cancer last month. It would be incredibly rude to make any of that time about me. The following two days are family events celebrating a high school and a college graduation. Oy. Do I sign the card "Love from your possibly-soon-to-be-late Great-Aunt and your pre-grieving Great-Uncle?" I just can't bring it up then. But I hate going through a later "By the way, folks..." Hell, I'm not even sure about telling Hubby. He's supportive, but tends to be a weeper.

Ugh. The etiquette of this shit is gonna kill me first.

Betrayal

AliceBastable:

This situation is what I would call the horns of a dilemma; damned if you do and damned if you don't. My BC decided to make its presence known right before Christmas via a repeat breast mammo and U/S on 12/17. The radiologist read Birads 5 and demanded that I consult with a BS for a bx order on 12/21. I had my core bx on 12/31 and finally received a definitive dx on 1/7.

I was so pissed at the radiologist for his lack of empathy at this scary time. I made the decision then that I could not deprive my family of the holiday since it was one we all enjoyed; even though for me it was shot. I was struggling to hold myself together and really could not have supported anyone else at that time. So I made the decision to not discuss with my family until I could handle it. My husband is supportive but doesn't do well in situations such as this and I could not handle his grieving as well as mine.

You do not need to be Ms. Manners or whoever the queen of etiquette is at this point in time. Only you can decide when is the best time for you to share this with others. Withholding the information may put a damper on your plans but it may also relieve you of having to deal with "others needs" at this family event. Did you do a face to face before with family or a by the way? You strike me as being a deliberative person, so you will know when the time is right.

I am hoping that the news you get on Friday is not what you are anticipating.

AliceBastable

Betrayal, the problem is that I don't see any of them very often, so this will be the only face time for who knows how long. I'll just wing it like I do most things.

MountainMia

Alice, that's really tough. I'm sorry. I think as you see people at these events, and they check in with you, you go with something neutral like, "I'm looking forward to catching up with you when things are calmer..." And then when you do let people know, if your news is news, perhaps you could facetime or skype with some of them? It's not the same thing as in person, but it might be better than basic phone calls. Even facebook has a video call option in its messenger system.

AliceBastable

MountainMia, that's an idea - except I'm such a Luddite, I've never Skyped or any of that. Ugh. Oh well, the big family we're seeing is Hubby's, so maybe he can tell them.

What freaking bizarre things we have to think about.