What to tell people

bethq

After BMX for IDC do I say I "had" cancer,"have cancer", ??? I mean since there is a chance we will have a recurrence what do most of you tell people? 

Thanks

voraciousreader

Why not say what you feel most comfortable saying?  If I would bring it up,  I would say, "I had breast cancer surgery.". I never felt nor do I feel now comfortable talking about my health issues with others in public.  So it really doesn't come up in conversation.  Practice in front of a mirror what feels comfortable and then let it rip.  And if you choose not to say anything and people are nosy and ask questions, just say, " Excuse me?"....and let the silence speak volumes.

Good luck!

Blessings2011

Yeah! What voraciousreader said!  

I find that I most often say - when it comes up - that I was diagnosed with breast cancer in 2011. Most folks have no interest in any medical conditions but their own.

But some want gruesome details, or want to tell you horrific stories, or are just plain inappropriately nosy, and I can think of no better response to that than exactly what voraciousreader wrote. But make sure you accompany that question with a piercing stare.

(There's always the Ann Landers/Dear Abby answer of "If that were any of your business, you would already know the answer....")

For the record, I consider myself cancer-free as of my BMX almost three years ago. No one can predict the future. I just tell it like it is right now.

coraleliz

It will come up less as time goes by. You'll move on. Early on I gave up explaining things to people(some I thought should be fairly knowledgeable). Outside of these boards, I don't talk about it.

bethq

Great answers as usual, thanks! Since I have started venturing out I have gotten so many "how are you doing" with the sad face and hand on my shoulder. Ugh gross! I know people mean well but it is such a private thing and while there are a few people I don't mind even showing my chest, most I would prefer not talk to about it.

On another note, went to a retirement party yesterday and discussion came up about a colleague who was just diagnosed with brain cancer. Many at the table did not know my situation and one man kept saying "yep, I guess it's time for him to just walk into the ocean"....OMG I teared up and shut up, did not know what to say. My husbands best friend kept making the "cut it" sign but the guy didn't get it.

StillWater

I am really new to all of this but I usually do not bring it up. At first because there were so many unknowns at the time. Now I just want to slowly get back to the new "normal". Having put scary weeks behind me, I want to move on and as it is in casual situations (at the gym, kid's school) it really isn't the place to bring it up unless necessary. I will explain if someone wants to know, but not everybody does and I am a bit of a private person to begin with. 

Moderators

Stillwater, Welcome to the BCO community. You have joined a group of compassionate and knowledgable others who offer much support through the cancer journey and beyond. We look forward to hearing from you. You will find many here who are in the process of getting back to their new normal. Let us know if we can be of help. The Mods

Juliecc

I really don't bring it up with anyone anymore.  The people close to me already know.  If I were to mention it, I think I'd say, "I had breast cancer" or "I was diagnosed with breast cancer in February," etc.  I'll still have my recurrence rate hanging over my head, regardless.  In the meantime, I'd like to think of myself as cancer free.

When I was diagnosed and going through my BMX surgery, my mother told all of her friends and acquaintances.  Many of them had gone through breast cancer themselves.  She lives 2 hours from me  and I really didn't mind much.  But last Saturday, we had a big 70th birthday party and 5 of her friends approached me at different times to ask how I was doing, etc.  One said, "Tamoxifen will kill your sex life.  I would reconsider it."  Ugh.  I responded, "So far so good!"  I feel comfortable talking to friends and family about breast cancer but not with people I hardly know.

Nan54

When I was diagnosed, we had just moved into a new community - a rather small community where many people know each other. My husband told one friend, who told his wife,  and suddenly I had people emailing me, calling, texting, bringing over casseroles... I was overwhelmed by the kindness, but - honestly - I wish most of these people never knew. I am a very private person and I don't like to be the center of attention or the topic of discussion (unless it's about how fabulous I am of course!). 

Now that I am desperately trying to move forward, I feel uncomfortable with questions about how I am doing or feeling from anyone other than very close friends or family. I struggle with explaining how I am feeling because, most days, it is all over the board, both emotionally and physically. I struggle with the thoughts of what my future will hold and that it will never be truly behind me. And I cringe at the idea that people think of cancer when they hear my name! Vain, perhaps, but it's true...

So, for me, I regret that people outside of my very inner circle know. I know most people mean well and I will always appreciate the prayers and support, but I regret not insisting on more privacy. I think this is so individual and we all have to find what we are comfortable with! 

voraciousreader

nan...I feel your awkwardness....it speaks volumes about how I once felt.  There is no going back, so you have to move forward toward a place where you start feeling a tiny bit more comfortable.  I tell the DH all the time, who incidentally, has way more medical issues than I have, that people fall into four categories when it comes to discussing illness.  There are the crazies, the curious and the concerned....none of who make me comfortable.  And then there is the category of people who really could get my blood pressure up if I didn't ignore them and that is the biggest category of all...the people who you think are fairly intelligent and just don't get "it."

Before I was diagnosed, I had, under my belt, 20 years of explaining to family and friends the DH's orphan illness. Knowing what I learned from explaining his illness, once I was diagnosed, I made the conscious decision to keep my rare breast cancer under wraps.  Sure, a handful or maybe a few more than that found out, but not more than a few that I have to say, "Excuse me?" to.

I've come to a place in my psyche where I control "it"... Rather than " it" control me.  Makes the journey a little less bumpy....

I wish all my sisters well!

edwards750

Nan - your feelings are exactly the same as my sister. Both of us were DX with BC. Our mother also had it. She died 10 years ago but not from BC. I have IDC, Stage II, Grade 1 and 3 1/2 years out; my sister has ILC and 2 years out. We are polar opposites about the need to know. I relied on close friends and family and 1 friend in particular who is a nurse at St. Jude who also had BC and is 6 years out. 

My sister is very close to the vest and in fact it was months before she even told the family. I'm sure very few people she works with even know. Her closest friend lives out of state but I'm sure she shared her DX with her but only the basics. She would think all the people quizzing you were invading your privacy and would b ticked if her DH told anyone - even a friend. 

Thing is you have a right to your privacy. A neighbor of mine spread the word about my DX to the point everywhere I went- someone knew. I know she didn't do that to be mean but frankly it was my story to tell if I so chose to do that - not hers. She is like the town crier about her personal life so I guess she figured everyone else's was too. Not. 

I joined a support group at my church which helps. There I can vent and we can compare notes. It's very therapeutic. DH is a loving husband but he's not demonstrative but he cares. I save my fears and feelings for the group. He goes to my appts with me which I appreciate. I know he worries but he keeps those fears to himself. 

We all deal with this in our own way but make no mistake it is and should be our way. Our life, our decision. 

Good luck and keep the faith!

Diane 

Blessings2011

Arghhhh.... those first few weeks after dx.... I was actually pretty up front about it to the women in my Bible Study. I knew that I wanted prayer for what I would be going through.

But then they announced it in church (with our approval), and afterwards, my pastor's wife ran up and threw herself on me and started WEEPING  and SOBBING! Good grief, I thought I was going to die right then and there!

I did get a lot of questions, and my pat answer was always "We would appreciate your prayers."

We got a lot of offers for casseroles and meals for after my surgery, and I told DH to just say yes. That's just the way our church reaches out. Most of the food was so rich and greasy and awful, we passed it along to other family members who enjoyed it.

One thing that I am forever grateful for is the fact that I turned over all the "spokesman" duties to DH. I had gotten very sick (unrelated to BC), and had my surgery rescheduled twice, so as I got closer to my BMX, I went into "Quarantine". Whenever anyone just showed up at the house, DH would explain that I was unable to have any visitors as it would compromise my immune system. It worked.

He would also intervene with phone calls, telling folks that I was resting, or unavailable, but that he would pass along a message to me. It felt great not to be in charge of any of that!

The other thing I did was create a "Caring Bridge" page for updates on my condition. If I was up to posting, I did, otherwise, DH did. We made up small business cards with the website (and the password I created) and if anyone got nosy, they got the card and were told to check there for updates.

But those were the early days. As time goes by, it becomes less of an issue.

coraleliz

I have a good friend that I never shared my diagnosis with. When I saw her soon after my diagnosis(B4 treatment), she was really concerned about finding the right dog for her family. She told me she was praying everyday that God would help her with this decision. I'm sure bringing the wrong pet into your home can be disastrous. It paled in comparison to what I was going through/potentially going through at the time. I was annoyed by her seemingly petty concerned. In hind sight, perhaps I should have shared with her. She probably would have been supportive. If I hadn't just been diagnosed with cancer, I might have wanted to participate in a this dog vs that dog conversation. I still see her. Went to a BBQ at her house recently, I'm her daughter's godmother..........but she doesn't know about my cancer.

bethq

Wow I guess I talk too much to keep it from everyone. So probably my fault that everyone knows and then I get upset with all of the questions, etc!

For example (I have plenty of them)....my husband's female co-worker was on speaker phone with him while we were coming back from a fill yesterday. She said "tell Beth I know how she feels, I pulled a pec muscle yesterday".....OMG....my husband quickly changed the subject!

StacyBrian

No, Bethq - NOT your fault!  I have been VERY open about my DX and path, so far (4 wks and 2 dys since I found the lump - 4 days since full right mastectomy).  That does NOT give others the right to say whatever they want to you.  I believe you must respond however you are most comfortable.  Take a look at this link - http://www.etiquettehell.com/?p=3770 - now, you can't teach EVERYONE in your life this all at once, but the basic rule is - the person with the DX is in the center circle.  That person's immediate family/children/spouse is in the next circle.  Closest friends are in the next circle, etc.  You can say anything you want, any TIME you want - BUT - only to people in a LARGER circle than you.  That means you have the right to say whatever, whenever.  Your partner has that right, as well, just not to you.  I don't know how you might get the word out, but maybe this will give you something to think about - and DO NOT FEEL BAD for ANY negative reactions you have to others.  I always remind myself that they MEAN well, but it's also MY illness and I can't manage other people's reactions, emotions, etc.  It's not my job.  My job is to manage mine, the best I can, for myself, my partner, and my kids.  Someone else will have to take care of the rest ;-).  Just don't blame yourself, if you can help it.  I did, for a little bit, then I really started looking at some of the comments that were impacting me - for example, a post from a female friend the day I was coming home from the hospital, asking if I felt lopsided.  I just cried and cried and cried.  I don't blame her for saying it, but I won't blame myself for having a hard time with this, either...  ;-) - take care of you...

jetgal23

I only told some close friends and family after my DX but eventually it was hard for me to not bring it up.  Initially I was overwhelmed and had so many questions that I did not want to talk to anyone about it.  I did not tell others until the night before my surgery, and I was nervous about reaction.  But I am an educator by nature, and I realized there was so much I did not know about BC (even though my mom had it 15 years ago) and others probably don't know either.  So I respond to questions and keep it short, and I want others to know that you can get through this.  I would also turn it around and ask others if they know someone with BC (most do). Sure it has its difficulties and everyone is different but I hope that I give hope to someone else who may go through it soon.  Because you know there are so many women who get BC...we are all in this together.

Sparkle2014

I would try to limit # people who know to your closest family, friends and those at work you are close to - that way you won

't be always considered the "one with cancer" and asked "so how are you FEELING?" with the pity eyes from whomever,,,  you may be fine in years ahead now, and - or say I had Breast Surgery, they found something suspicious so had to remove it but it turned out to be fine...  more precautionary - things are good - how have you been?  are you excited for the kids to go back to school?  change the subject and keep asking them questions...  some people like getting gossip on other people's misfortune - just be careful to protect yourself - you are sensitive and going (and gone) through a LOT - we all have - this is no picnic - but you don't need everyone in town or community knowing and ASKING you how you feel - that will make you upset to hear from everyone - but the boards are great place to vent too and I wish you my best - I guess I will say

 

I may say  -  I had Breast Cancer, they took it out and I'll be ok, thanks...  Gosh, O haven't seen you in ages, what have you been up to..

kamm

I had the same thought intitally and the reality is even though there is always risk for recurrence, the lesion was removed. So it's had for me. In my experience I find women wanting to ask me questions because a lot of them are scared and have had lots of the same experiences with the anxiety of screening, false postives and biopsies as I've had. I mostly feel like it's a way for them to get some of their own questions answered and fears allayed so I have no problem discussing. I mean isn't that what we all do for each other here just after the fact? To be honest, I feel like all women are in it together because nobody escapes the anxiety that the subject brings. The only thing I make sure is that the convo doesn't takeover. Needs to be in the appropriate place and if I feel like someone is particularily worried and had more questions, I just tell them to call me later and am happy to answer there questions. I've rarely come across anyone who is just being nosy.