"Telling" - how did you decide who to tell, when, and how?

Curlykat

So far, outside of my family, about a dozen people know of my diagnosis of DCIS and plan for radiation. That includes employers, a few close friends, and some church people. Because I'll be doing rads and not chemo, I expect to work as much as I possibly can, so there will be no extended absence from my full time job to explain. That said, I'm pretty open with people about what's going on in my life, and a lot of people both in "real life" and on Facebook have been supportive thru the past two years while my family has been dealing with my parents' health.

I find myself thinking about other people that I probably want to tell. I think about the other staff people at work - we call ourselves a "family" and like in any family, there are people you're close to and people you aren't as close to, but we all get along well. I think about my yoga students and explaining my absence when I wasn't gone from them very long when I had shoulder surgery. And, I think about people who might be offended if I don't tell them personally. (Their problem, not mine, I realize, but I don't really want to deal with other people's emotions at this point.)

How did you decide who to tell and how did you tell them? If you work outside the home, how have you handled it in the workplace?

Moderators

Hi Curlykat!

While you wait for the ever-helpful responses from your fellow community members, you may want to check out the main Breastcancer.org site's pages that touch on these subjects:

• Telling Your Boss and Co-Workers About Your Breast Cancer Diagnosis
• Talking to Your Family and Friends About Breast Cancer

We hope this helps!

--The Mods

Cheesequake

I was just recently diagnosed with IDC, not DCIS, but thought I'd reply. I'm kinda telling people on a need-to-know basis. Definitely not going the Facebook-announcement route

So far I've told my husband, closest family members, my managers, my direct staff, and a few other people I work with directly, a handful of close friends and my attorney. I have a few more friends I want to tell, but I'm in no hurry. I'm already starting to see the various ways people handle hearing the news, that will inform who and when I tell going forward.

The wife of one of my staff - I'd never met her - brought me flowers. Conversely, a good friend who is a coworker of my husband's practically ran in the other direction when my husband mentioned it to their boss at work, and he hasn't been in touch since. People are weird.

Annette47

Hmmm .... I told my family, and I did mention it on FB. My reasoning was that for most of my FB friends (I only friend people I know in real life), if it was happening to them, I would want to know so that I could send good thoughts, pray, whatever, so I decided to assume they might feel the same. My local friends who are mostly parents of my kids friends/teammates all knew, mostly because I needed help with giving rides to practices the week I had surgery.

I didn’t tell anyone at work, but I teach in a MA program and only go into the school one evening a week - the rest is all done at home - I might have done differently if I interacted with people more frequently. It was kind of nice having a “cancer free” zone at work, but for the most part, it was easier on me to have people know. That said, I’ve seen a lot of really dumb responses that people on this board have gotten when they “came out”, so it might depend on who you know, whether they would be helpful or annoying.

Mich71

If I were to do over, I would have kept it way more private at work. People think they are being comforting when they make silly comments (especially with DCIS if they feel close enough to you to tell you how lucky you are it's not worse). I wish only my supervisor knew in hindsight even tho I am close to a few ladies there

debiann

I was having chemo, so of couse I told everyone at school (I'm a teacher) and when my hair fell out and I started wearing scarves I told my students too. Everyone was very supportive.

A few years ago another teacher had DCIS and she told us all. In her case it was good, because knowing what she was through we all covered for her whenever we could. Many days she had to leave early for appointments. Towards the end of rads she was very tired so we pitched in to do what we could to help, including cooking meals for her family.

sandcastle

whoever, you tell whether family or friends. It, will change how they look at you...so, one will have to deal with that...it can be good or bad...but you will be forever changed.....good luck in your journey....there is no right or wrong way to do this...Liz

Curlykat

Thank you, all! I did decide to tell one coworker who is a breast cancer survivor this morning, but have decided not to tell anyone else until after my appointments with the RO/MO when I know more. Then I'll deal with it.

So far, everyone I've told has been wonderful, but that's why they know.

florida2015

Hi, interesting post. I just told my two sisters, my best friend (who lives out of state) and my husband and one 18 year old daughter. The other daughter, who is away at college I chose not to tell for now. My parents do not know, they live also out of state. Once I hear my treatment plan, I will probably tell them but have prolonged it because I don't want them stressing out over me. I just told the people I felt should know. Also a friend of many years who we keep in touch only by occasional facebook messaging. She had breast cancer in 2011 and I actually felt better after emailing her because she handled it very well and doesn't even think about it I am a private person to begin with, and frankly it has been hard just dealing with nurses, Dr.s and other professionals on the phone etc. I find them to be "overly sweet" and it is hard to take at times. I think it depends on your personality as to how many people you want to know.

florida2015

My sisters have been wonderful, but it was getting a bit much when they found out I had to get a lumpectomy. My one sister ended up sending me flowers on day of I found out I needed one and day I actually had it. My other sister sent a huge flower display and also an expensive gift card for a nice dinner (which I will use when I am done with treatment!) and my best friend has sent me countless cards and written letters and then bought me a Pandora bracelet and filled it with charms. All very sweet and wonderful....but my point is I wouldn't want anyone else to know because I guess in a weird way even though they are showing how much they care about me.... it makes me feel "sicker" than I actually feel. Which of course is not sick at all.

scvmom65

I ended out joining Facebook right before my surgery and it ended out being a great thing. Between family, mine and my hubbys work and friends, it made it easier on my hubby who was my primary caregiver. He had enough on his plate taking care of me and 2 teenage boys. Lots of people were calling often once my diagnosis got out there, very sweet and considerate, but sometimes we could not return phone calls, etc. Plus, I didn't want to hurt anyones feelings if someone got information before them. So Facebook was helpful, then everyone else I put their names in a mass email. I had another friend diagnosed with a different kind of cancer and I set up a "carepages" for her and that was a godsend for her. Carepages is also awesome since she needed physical help with her recovery and there is a way to set up care taking times , bringing food over times, etc besides being able to post updates. Just some ideas, hope they help.

Anna

Ariom

We had recently moved to a small coastal town, which is about 4 hours away from the big city, where we had always lived. I think I was just so shocked, by my Dx, that I just blurted it out to people. I didn't know anyone well, in this new place. Fortunately, it wasn't to my detriment, I met some amazing people, who are now friends, I even found a support group, which I am still, very involved in, over 2 years down the road.

As soon as I had my initial Dx, I told my adult Daughter and my closest friends and I printed out copies of Beesie's, really comprehensive explanation of DCIS for each of them. Beesie is a member here, whose knowledge about DCIS is extensive and her information, made it possible for everyone concerned, to be on the same page, with the Dx and treatment. I had decided to have my surgery here, rather than going back to the city, because I had discovered there was an internationally known breast surgeon, practicing at a Hospital, just an hour away.

All in all, I have been very fortunate. I wasn't working any more, which I know can certainly make the decision to share your Dx so much harder.

MombieZombie

I'm a stay-home mom, but my DH told work right away. They were amazing. We kind of had to tell them because I showed up at his work right after I got the news and I was a visible train wreck. EVERYONE saw. DH works for a government department. We have experienced an outpouring of care, concern and lenience so I'm not sorry for how that went down. Immediate family we told right away. I am religious and we wanted prayers and blessings. At church we only told leadership. We told no one else until we had all of our details and ducks in a row because we didn't want to be answering the same questions over and over with "I don't know yet". Once I got a full picture, I made a secret facebook site for family and close friends who were brought into the picture by us personally. We didn't want to have to constantly answer phonecalls and repeated questions. The facebook thing allowed me to share progress, feelings and details in a more controlled way. When it was time to lose my hair, I let anyone and everyone know.

I was nervous, and I didn't want pity, but in the end I was glad I told people. I was amazed and touched at how many people stepped up to help. Something else nice came of it too. People thanked me for sharing my journey with them. Some just felt like I made them important in my life and they appreciated that. Some were grateful because they didn't know what it was like to go through something like this and I helped them understand so they could have more empathy for others. Still others just felt comforted in knowing that they weren't alone in having struggles in life. I am always grateful when someone shares their troubles with me, so why wouldn't I share with them? We can all help carry each other along that way.

I don't know if that last paragraph fits with the original question but it felt right to add that. I do have a few friends who suffered through more quietly than I did, who now wish that they had been more open. Good luck with whatever path you decide upon. I'm not sure there is right or wrong in this, only what makes you feel like you can get through.

Curlykat

Thanks for all of your feedback, ladies! It's such an individual journey. I have started telling more people this week. I've still got one more work person who I want to tell personally, anyone I haven't told, I don't mind if they find out but I just don't feel the need to make the effort to tell them. I've got two family/church friends to tell yet.

Everyone has been wonderful. My BFF is wanting to fly down to spend some time with me. With her I know that it's ok if we just end up laying around all weekend. We haven't spent any significant time together with out DHs and/or her kids for way too long. Other local friends have offered to do "anything" I need, though I'm not likely to take them up on much. But their support, encouragement, and prayers are priceless!

This morning I sent an email to my immediate supervisor, our unit head, our department head, and the COO (and copied my coworker) letting them know about the schedule and my plan for managing any time away from the job. They were all very supportive and I was touched when my coworker (who is also my work best friend) sent me a note saying how impressed she is with my attitude.

I guess I'm inspired by having watched my parents go thru their health issues very publicly. They welcome prayers and were very comfortable with me posting updates on FB and asking for prayers for them. The past 18 months of their health traumas have brought us closer, strengthened all of our faith, taught me about being an advocate (for their health, as well as my own), and they've just been an inspiration.

Ha - like Mombie, I guess that last paragraph didn't go with my original question either, but oh well!

MombieZombie

Love your train of thought Curlykat.

Curlykat

Thanks!