Are you a public or private person?

bcjournals

When I was diagnosed with breast cancer in May 2015, I was faced with the decision of whether or not I wanted everyone to know, or only a few select people to know. I didn't want people whispering behind my back, or wondering why I didn't look well. I decided to make my journey with breast cancer very public. It was important to me to do something good with my diagnosis. I posted that I had breast cancer on Facebook, and I am putting my journals online for others to read. I have found that the public route is a wonderful way to get support from everyone in my life (even strangers!). It was also very therapeutic to write out what I've been going through, and hopefully it can help others who are wondering what it would be like to get the diagnosis.

If you would be interested in reading my journals they are here:

breastcancerjournals.com

Which route have you taken?

Julie

Moderators

Thank you for sharing your journey, Julie!!

farmerlucy

I told just about everyone I met about it - somehow I think I was in such a panic I was looking for answers everywhere. Later on I pulled back but still don't hesitate to bring it up if it can assist someone else. I think it shakes my family up a bit when I talk about it so I do avoid it a bit with the kids

ksusan

I'm pretty public where it's relevant (with friends, at work, with my community), and private where it's not (for example, I talked with my ongoing students about it, but not my summer students with whom I don't have an ongoing relationship).

Englishmummy

I have chosen to be fairly private only telling people I thought would have a positive impact and why my husband hasn't even told his dad or sister.Those who need to know, do know.  We are wary of talking in front of the children too, only because I don't want them fretting day and night (I can do that enough for us all). They do know, but don't really discuss too much in front of them.

With my friends, I come to find out, I was wrong in a couple of cases about their positivity  In the beginning I was private because I was  'ashamed' - I have spent my whole adult life living in a super healthy manner to avoid health issues. I was the person people came to for advice on diet, weightloss, excercise, stress relief or healthy living; I am past that now as I see on here, how indiscriminate BC is and that there are very few, if any, reasons or answers. At this time it is just easier to be quiet and avoid uncomfortable moments of them not knowing what to say and to definitely avoid the 'oh, at least you got a free boob job' comments which I have received several times . It is way easier for me to talk to strangers... and like farmerlucy said, those who you may help.

Ksusan summed it up well, relevant where it's relevant, private where it's not! Perfect...

DivineMrsM

My family, friends and co-workers knew I was dealing with bc. The part I only told my family was that it was stage iv. Coworkers and friends were not told; I didn't need to make everyone else feel 'okay' about it. I didn't want to field all the well-intentioned yet insensitive comments, nor did I want the latest fad cures. I also wanted to process that part privately, and I'm glad I did.

It was so beneficial from the start to have the stage iv forum on this website to connect with others in my shoes. At the beginning of this year, after dealing with stage iv bc for four going on five years, I started to let friends and coworkers know. Many are confused. They think the cancer 'came back', not realizing it never left. They wonder why I'm not doing chemo, as if I'm not getting the proper treatment or am lying about the diagnosis. Oh, well. I don't spend much time explaining to them. Sometimes things are over their head

Hopeful82014

DivineMrsM - it's really too bad how much bc is talked about and yet how superficial most people's understanding of it is, I think. Most people just don't have a clue about the stages, much less stage IV. I guess if people haven't been around cancer much they just don't think/learn about it.

I've been pretty private about my dx. I was in the middle of planning a major party for my dad's 90th when diagnosed and really didn't want to dampen that celebration by telling anyone until after that was past. I basically got in the habit of not talking about it. My husband's been pretty open with his friends/partners about it and that's fine - he needs their support and understanding of his time out of the office, etc. Frequently they have been more genuinely supportive of both of us than my own friends.

My manager and those co-workers who know have been hugely kind and supportive. Those friends outside of work who do know, not so consistently; the ratio of real caring to superficiality has been about 1/10, which makes me glad I've kept it low-key.

There are still members of both my family and my husband's who don't know and I don't see any reason to bring it up at this point.

Again, I discuss it when relevant, otherwise it's private.

bcjournals

Thanks for all your replies! The one thing I have found about being so public is that I feel like I have to console the consolers. I'll be minding my own business and someone will come up to me and want to hug me with tears in their eyes. I feel like I have to console them because they look so sad. I try to cheer them up, "I'll be ok", "they found it early", etc. etc. I understand that it's hard to learn that someone you know has breast cancer, but I'm getting a little tired of everyone feeling sorry for me. When I had my eye exam done I had to write breast cancer under health concerns. I swear that technician had tears in her eyes my whole appt. UGH!

Hopeful82014

I've found that many people will automatically say "they found it early, right. That's good - you'll be fine, right?" and then they rush on with their platitudes.

The fact is throat it wasn't found all that early; while the tumor wasn't too large the lymph modes were already involved and that had all sorts of difficult implications. But people DON'T want to know this, they just don't.

Englishmummy

bcjournals, I hear you on the 'pity eyes'everyone throws...sometimes I think they are welling up for themselves, what they would do if it happened to them? The fear is too great... But, perhaps I am too skeptical? I hate having/seeing/writing 'breast cancer' on my otherwise empty medical records, it really breaks my heart. BTW, I love the format of your blog: easy to read, informative and real.

Hopeful, this whole experience has opened my eyes to the ignorance surrounding breast cancer (my own included). Many/most do not understand the cloud you now get to live under for the rest of your life hopefully a long time, I'm 41.Wondering, waiting, expecting?...They think, oh you had a mastectomy, you must be cured or at least at the 5 year mark you are/will be. But they don't want to know about or they really don't understand the specifics, the nuances that change the dynamics and that they may change again at any given point. I want to tell them "Well, I sure hope I am cured, but I ( and hundreds of thousands of others) would like to KNOW we are cured." I have a friend who is pink ribbon mad - apologies, no offense meant as I know many love pink ribbons and they are instantly identifiable....I am a kind, placid person by nature, but I want to rip off of her, all the junk she's purchased (of which 0.005% goes to 'the cause') and shove it where the sun don't shine. There! Let them retrieve that on your next colonoscopy!! She refuses to give money to a proper research facility. Instead she goes to KFC and buys a pink ribbon coke!! Uggghh, I give up. We are all 'aware' of Breast Cancer these days, but it seems very few are aware of how little money is spent on narrowing down real prevention, for our children as well as the general population, or actually finding a true, known cure or at least being able to distinguish who IS cured so focus can stay on those who are not.....Rant over.

DivineMrsM

Englishmummy, research over ribbons every time. People who don't get it seem to think bc is like a football game, and those owning/wearing the most team gear (pink everything) win. How utterly misinformed and ignorant they are.

Hopeful, your comments on superficiality are quite insightful. Many people don't want to think anything bad might actually occur in these situations. A couple of years ago, the school nurse at the elementary where I worked learned her seven year old son, a student at the school, had leukemia. The entire school rallied behind him as he endured treatment and over many months, it was always touch and go. The nurse's father would bring her younger child to preschool, and I would hear what some of the employees said to him. One teacher was all gushing, saying,"I just know he will be all right. I just know he's going to be fine." I cringed at these comments that the grandfather had to listen to because the situation honestly didn't sound good to me. But people think their "positive thoughts" are going to heal someone. And I'm sad to report that the young boy passed away one year after diagnosis. People need to understand that this isn't a sporting event where the side with the most team spirit wins.

farmladync

I am a very private person . Only told my family and pastor . A few select friends . I don't want pity or everyones opinion on my cancer . I have chosen not to take any treatments and don't want to hear everyone ridicule me of that decision . My faith is strong and whatever I have left will be spent serving our Lord and others . Live every day to the fullest !

justmaximom15

I kept my diagnosis very private in the beginning. I didn't tell my Mom or my youngest son until after I'd seen both BS and got a good idea of what to tell them. I personally told close family and friends as well as co-workers that I deal with on a daily basis. Because I wasn't sure about how much I could work during treatment, I wanted folks to know what was going on rather than guessing and spreading rumors.

About a week before surgery, I made a Facebook announcement that was specific enough to let folks know that I had a breast cancer diagnosis and that I believe in the power of mammograms but vague enough to not give my Stage and exact treatment details. I ignored the comments of those blatantly asking my stage and if I was getting a mastectomy.

Now that I'm halfway into AC and my head is covered in a scarf daily then it's pretty obvious to everyone I meet on the street that I have cancer and I'm going through chemo. I have noticed that I get a much different treatment by complete strangers. People are friendlier, hold doors open more and strike up random conversations with me than ever before. Sometimes it's nice, other times I just get annoyed by it because I know they just feel sorry for me.

glennie19

MrsM:  Your words are so spot on.   People need to understand that this isn't a sporting event where the side with the most team spirit wins.   That is the truth.

bcjournals

I too have noticed that people are nicer when they find out you have cancer. I was scheduling a pre-op physical for my lumpectomy and the scheduler was all rushed and factual until she asked, "Reason for visit". I told her why I needed a pre-op physical and suddenly her voice softened and she slowed down and she became much nicer. It was nice in a way, but it made me think, doesn't everyone deserve to be treated with kindness?

ml143333

I think I am middle of the road.  When I first found out, we gathered the kids and let them know because they sensed something wasn't right anyway.  After that, we told family and select friends.  Once I had surgery and then went on to chemo treatments, I really didn't talk about it unless asked.  I was just tired of being "the cancer patient".  Now, I talk about it if someone asks or if I think I can help someone else with what I have to say.

 

Trvler

BC: I agree with you but how about when even people at the cancer center DON'T treat you with kindness? I was an hour late once for one of my chemos and it was an honest mistake because they set you up for multiple appointments and I read the time wrong. So I was explaining that to the girl who was going to take my blood and she didn't listen to a word I said and told me that if this time didn't work, they could make it later and how I throw off their entire day by being late. I complained about her so much, I haven't seen her since.

I am pretty private. I told people who I either figured would find out anyway or might find out through my kids or husband. I didn't announce it on FB. I don't have a job so that wasn't an issue. But I live in a neighborhood where people know everything about everyone and I wanted to be the one to tell certain people instead of them hearing if from a third party.

I hate the 'you have to be positive' platitudes, too. Or my personal favorite 'Sugar FEEEEEEDDDSSSS cancer'.

I should say that when people say to me they are thinking of me or praying for me, it makes me feel good. I know some people aren't happy about people saying praying but I take it in the context in which is it meant, I believe. I had my drapes cleaned and the guy came to pick them up. I just mentioned I needed them back by a certain time because I was having major surgery. I don't know if he figured out cancer to not but as he was leaving he said he was going to pray for me and I appreciated it.

Anonymous

Divine: I just love your end-line in your post. BC is not a sporting event where the side with the most team spirit wins ! People always say how we "will be fine" --that somehow they hold a crystal ball for the future. If only it were that simple ! There is far too much fund-raising dollars that do NOT go to actually finding new treatments or long-term cures. That is the main reason I've decided to not send money to foundations. There is too much corruption.

mells31

I am a very private person as well. I only told close family members and friends. Didn't post it on social media or tell anyone at work.

TNNurse

I told family and close friends immediately. I had to tell my employer of course and my coworkers. I asked that nothing be put on social media. We made an email chain to give those that were important the info they needed. I asked that no one shave their head (there were offers) in solidarity. Essentially I did not hide but I did not make a big show of it either, There was a high school class reunion that summer and I was too sick to attend. I told one of the organizers in an email.

The first time I mentioned it on Facebook was in support of the Lymphedema Treatment Act.

I do not wear fancy compression sleeves that draw attention and I answer the reason for mine differently each time. It depends on the day and the manner of the question. There may be times when I am a little rude to strangers.

Icietla

Private. Except for the health care professionals necessarily involved in my care, I have confided -- in strictest confidence -- in only five persons -- my husband and four other close friends (three of whom are health care professionals, and one of whom is clergy).

As a long-time sufferer of serious chronic illness and (mostly) invisible disabilities, I had already learned that sharing even very general health information -- with any others having no need to know -- could draw all manner of unsolicited and unwanted "advice," much of it ridiculous, much of it blaming, bashing, harassing, even making argument about any and every point. I was always very tired anyway, and I was very much more wearied -- besides frustrated -- by those experiences. I shut those people out of my life and resolved never to set myself up for any more such abuse.

My breast cancer treatment has been easy enough to conceal, even from friends, neighbors, and acquaintances I see fairly regularly. Because I was always sick and tired, I did not get out so much anyway. My usual dressing style has long been fairly modest and loose, and I have many scarves -- mostly head-scarves under which I ordinarily hide my hair, but also many pashmina, dupatta, and other long rectangular type scarves that lend themselves well for wear on the upper body. Except for my also wearing longer scarves over my chest these days when I can expect to be in the company of persons familiar to me, there has been no change in my dressing style. As far as we can tell, nobody has noticed the difference in my appearance.

exbrnxgrl

I am quite public about my stage IV bc, but my openness evolved over the past 5 years. In the beginning, I simply did not have the time or energy to explain a disease which is far more complicated than most people imagine. Over time, and especially since I wanted to set the tone and set the record straight, I have become comfortable with being open. No gossip or rumors, since everyone knows they can come to me and ask directly about bc or how I am. Several newly dx'ed women or family members have come to me for advice, guidance or simply a shoulder to cry on. I am happy to be able to pay it forward and lucky that I haven't encountered much unwelcome advice or comments.

The main thing is that this is what makes me comfortable (and I don't care if it makes others uncomfortable) but every one must choose what's right for them.

AnnieMae

I am somewhere between public and private. However, when I was first diagnosed, I told only my husband and an online friend I met first, but briefly, in person. A few days later I told someone of the clergy. I wasn't ready to tell anyone else right away, but to be honest, those close to me at Church were not pleased about me keeping the details from them (I had been out sick and missed things because of dr. appts.). I finally told my aunt. I have other family members I need to tell. I think I'm going to just let them know at Church now that I've had a chance to get over the shock. But I don't intend (at this point) to announce it on FB. I might though. I can see potential benefit. But one reason I was slow to tell those closest to me is that I didn't feel able to comfort THEM, and in some cases that has happened.

I will probably be more forthcoming as I get used to the idea. Though there are aspects of that I don't look forward to. I'm especially not looking forward to "health advice". I was involved in natural medicine myself, and if took a great many precautions to hopefully prevent something like this, but it happened anyway. I know people can try to be well-meaning though. I tend to bite my tongue and not offer unsolicited health advice, but sometimes it is difficult in situations where I do know a very tried-and-true thing that will help (that is true for only certain ailments). So if I do get it, hopefully I can remind myself that they are only wanting to help.

voraciousreader

as exbrn explained...breast cancer is too complicated of a disease to discuss, let alone to explain one's treatment and prognosis, so I pretty much stand clear of telling people about my experience. I have no regrets. That said, with all of the enlightening Komen claims to be doing, the ignorance surrounding the disease is mind blowing. If I hear one more celebrity say that they thank their lucky stars they caught it early and they are a fighter, I will barf. Contrary to what Komen claims that population based screening mammograms save lives, the reality is that diagnostic mammograms save many more lives. I dont want to be a Debbie Downer, but if more people were truly educated properly about the disease, then I might be more comfortable discussing my experience. Sadly, in the last 6 1/2 years since my diagnosis, I have seen little progress in setting the record straight. End of rant.

Meow13

My friends were shocked when I told them my early catch on cancer required a mastectomy, chemo and hormone therapy. What I thought you caught in early! The treatment is scary and shockingly barbaric. Thank God plastic surgery has come along way in comparison. I just couldn't do the chemo.

Meow13

My friends were shocked when I told them my early catch on cancer required a mastectomy, chemo and hormone therapy. What I thought you caught in early! The treatment is scary and shockingly barbaric. Thank God plastic surgery has come along way in comparison. I just couldn't do the chemo.

artistatheart

When I was first diagnosed, I had little knowledge of BC myself. Since I was Stage IV right out of the box, I panicked and sent an immediate EMail to all of my coworkers and told every friend I ran into. In hindsight, I wish I had thought it out a little more carefully. If I had had known I would still feel pretty well a year later I would have parceled out the info as needed to avoid a lot of what everyone else here has experienced. Ignorant comments, annoying unsolicited advice, abandonment by friends. I just really thought I had been handed a pretty immediate death sentence and had so much to consider my mind was spinning. Oh well, now that the cat is out of the bag I try and handle all of these repercussions straightforward and with dignity.

sandcastle

I, was diagnosed 6 years ago and kept it quiet the BIG reason was I wanted to keep my Dignity...people have a way of crossing the line with their comments and feeling sorry.  I am glad I did...Liz

solfeo

I have a very large and dysfunctional family. I didn't want anyone to know right away while I was still getting used to the idea but I planned to tell them eventually. Then I told my sister and her reaction was something like, "I don't need this right now after all I have been through." SHE didn't need it? OK, that dampened any desire I had to tell anyone else. No chemo meant no outward signs. Besides her my husband and son know, my mom and an aunt who had breast cancer, and one friend. I get my support here and as far as anyone else knows I am always fine. It's all about dignity for me as well. If the cancer takes me out it is going to be a big surprise to a lot of people and I don't want to know what they have to say about it.

ChiSandy

I am normally a very private person, but I’m also a performer with a small but dedicated fan base (and larger circle of colleagues) and I wanted to stave off speculation that might have started regarding my sudden drop-off in frequency of shows and delays in releasing the two recordings on which I’ve been working. Rumors and gossip can spread fast in even the supportive folk music community (with venues and airplay opportunities decreasing even as more artists are getting into the game, it’s more competitive than it used to be), and the last impression I wanted to create was that the reason for my cutback might have been either financial, or worse, qualitative as to my skills. So I bit the bullet and started a CaringBridge page (as two of my colleagues did for their own cancer journeys). I told my immediate family right away (yet my cousins found out only inadvertently from Facebook well-wishes by mutual friends). I also told my colleagues in the annual Chicago Bar Assn. revue (the Bar Show) because I didn’t think it would be fair to the show and the cast for me to proceed and then either have to drop out or do a half-assed job on stage. At the time, I had no idea as to my treatment plan except that I was having at least a lumpectomy, radiation and eventually endocrine therapy. My working diagnosis was stage IA, but I couldn’t be sure of that till the surgical path report came back. Fortunately, that held true.

Many friends I hadn’t seen for awhile expressed surprise that I had cancer because I still have both breasts and all my hair. The general perception about bc is that it always requires mastectomy and chemo. And because I don’t have outward signs (except some weight gain from first my ill-advised personal pity-party and then letrozole), I don’t even mention it on stage (except if I’m playing a bc benefit). Most people in the audience don’t know me personally--and they are there to be entertained, not educated or solicited for sympathy. I did develop mild lymphedema, and I do wear sleeves to match my outfits (I don’t wear compression daily, but must do so when I play guitar because of both repetitive motion and having to drape my arm over my guitar which creates some pressure). I never mention why I’m wearing the sleeves unless asked (and only off-stage after the show)--and some have just thought they were cool fashion accessories. And more and more men are wearing arm-sleeves to protect their guitar finishes from sweat and insect repellent anyway. And no skeeter alive can penetrate that armor!

But neither do I have any desire to hide my LE. I hope that offstage the compression sleeves elicit some curiosity, because LE is far more common than most people realize (more so than MS, MD, Parkinson’s and AIDS combined) and not even many health care workers know about it. (I get more comments on my MedicAlert faux-Pandora bracelet than on my compression wear). We need to bring LE out of the shadows so that more women can get insurance or Medicare to cover compression wear and other treatments. (Did you know that even lumpectomy patients must, by Federal law, be allowed to get one pair of “foobs” every other year and two mastectomy bras per year without a co-pay, yet neither Medicare nor most insurance companies will cover even one sleeve & gauntlet, ever)? And the Lymphedema Treatment Act, despite multiple bipartisan sponsors, is still stuck in committee, being held hostage by the majority who won’t consider bringing it to the floor without irrelevant ideologically-driven “poison-pill” amendments.

People ask if mine was caught early. I tell them, truthfully, that it was. Some express delight that I’ve been “cured,” but I don’t want to pop that balloon to explain that Luminal A (hormone-positive/HER2-negative) bc, even if “caught” early has a 33% chance of distant recurrence after a decade or two, despite every appropriate treatment. The best we can hope for is that we live long enough to die of whatever else kills elderly women before it can come back--or that research will find effective ways to outwit tumor cells’ distressing ability to evolve to adapt to estrogen deprivation.

Kessala

I'm an introvert and very private person. Diagnosed Stage IV de novo and no one but medical people and Husband knows I have cancer, much less that it's terminal.

I've kept my secret for over 10 years. I wouldn't have handled it any differently.

Of course my living circumstances and treatment circumstances have helped me accomplish this. I have no family in this state, haven't lost my hair. I appear healthy and normal and strive to act more upbeat than I feel when I'm around others.

This has nothing to do with feeling "ashamed" or "embarrassed". I simply don't want to deal with reactions from well-meaning but foolish friends and family. What they don't know is to my advantage.

My silence about my health makes my life much less stressful. When I am no longer able to hide the fact I'm ill is when I'll begin telling people the truth. In the meantime I've had over a decade of living my life as I wish - as an apparently healthy person.

I don't want to hear about anyone else's health issues (I'm talking about family and real-world friends) and I don't want to tell them about mine. However I feel very good sharing with my online forum friends.

Kessala