Confidentiality-what to say at work

leaf

I will be returning to work tomorrow night. I work in a hospital. I have been off the last 6 weeks due to neck surgery (at another hospital). Before I left, I emailed everyone in my department that if they knew anything about my situation, I wanted it to be held confidential.

I do **not** want my workplace to know my medical history. A few people I trust, but most I do not. I had my excision to get my LCIS diagnosis in 2006 at the place I work. The radiology clerk, who is friends with some people in my department, saw my diagnosis when I gave him my mammos.

Most people in my department know my LCIS diagnosis, but I didn't tell them-it spread like wildfire. I had one come up to me and say "I must be the last to know." Gee, I wanted everyone to know, which is why I didn't tell you.

The night before my 2006 excision, a coworker told me that the radiology clerk "wished me well, and he recommends you have bilateral mastectomies because he had a coworker with LCIS." Gee, I love to have male strangers recommend I have my sexual organs removed when I'm busy at work.

I wrote him up for breach of confidentiality, The coworker who relayed the mastectomy remark to me said "I can't believe you did that <wrote an incident report>."

Soo, I know everyone in my department has heard a lot about my medical problems. I can't 'untell' them. I can hope they forgot, though I doubt if that will happen. I'm going to be working for these people for decades more.

So I'm going to be bombarded with inquiries when I return tomorrow night. I envision,
"Gee, I haven't seen you in months. Where were you?"
"I heard you had surgery. What kind did you have."

Should I reply to all inquiries "Thank you for your concern. I'm OK."
and if they push it further
"I don't want to talk about why I was off. Its private." which will enliven the rumor mill more.

"I was off for private reasons, and I have decided to deny everything I hear about my condition. I am fine."

Suggestions?

moogie

Whne I returned to my work environment---which was not an ideal place to begin with--I responded to all nosy queries with " Thank you for your concern. I'm feeling so much better and am glad to be back" When a few people pushed and asked what I had or if I had surgery ( which was obvious...I had a 36DD chest before my mastectomies)...I would just repeat the " it's so kind of you to be concerned " line.....but refued to answer . When one woman just would not quit , I simply said " I prefer to keep my life outside the office private..."...
It shocked me how forthright people can be, so I understand your concern. Don't give in though....teach the nosy some manners. And you coworker deserved to be written up!!! A person working in a situation where a knowledge of HIPPA is part of the setting should nothave to be told to maintain privacy.
Have a good return to work!
Moogie

leaf

Thank you so much, moogie. I certainly don't plan on having my medical info public.

(This is me, leaf, and I'm trying to recover my identity eventually :-).)



I did also read an interesting article that was a study by a social scientist about gossip. I don't want to post the URL as I don't know if it could contain worms, but it was to a lay paper or magazine. The social scientist found that when people gossip about others in a negative tone, that provides a stronger bond between the two gossipees. For example, if A gossips with B about C, then A and B will find a closer bond if they spread negative gossip than if they spread positive gossip. (For example, Isn't the boss awful?)



I think if I downplay the importance of my being out, it will help too.

CalGal

Hi Starlight -

Moogie made some good points.  I also preferred to keep my medical situation private from co-workers ... for many reasons, including not wanting the questions, trying to focus at work, not wanting to be the center of gossip, not wanting to be looked at differently.  I'm so glad I kept quiet ... once you tell, you can't go back.

First it was bi-lat mast, SNB & rad'tn.  Next, it was recurr bc, liver mets and probably kidney cancer.   That dx was so devastating, I figured it would be emotionally draining to tell c0-workers.

Stick to your guns ... as Moogie said, you can tell them you appreciate their concern and if they push it, you can tell them you're trying to focus on work and not want you've gone through.

Best wishes,

CalGal

Anonymous

Hope all went well upon your return to work today.  Thanks for posting support of my request for a separate catagory for those of us with LCIS (with no invasive bc)--I really feel strongly that we need our own catagory.  I hope they will consider it, as we have our  own set of issues and challenges.

Anne 

leaf

Thanks for your support, Calgal and awb. Its me, leaf-trying to recover my identity here :-). I've been told they're working on it :-).




I'm leaving in a few minutes for work, so I'll post how it goes, at least eventually.



CalGal. It means a lot to me to share your thoughts and wishes. Thank you so much.



Its not like your neck is a real private place-they'll be able to see the scar, but its the lack of respect of course.



Thank you so much. (And as you hopefully see, I'm supporting your wonderful idea of having a separate LCIS conference. Thanks for the idea, Anne.)

leaf

Yeah!! I got my identity back!! Thank you so much!



It started out bad because the evening crew wanted to leave the second I came in. I told them I have at least 15 minutes of paperwork to do before I can start to answer the phone. So I started out pretty touchy. It was quite busy.



Some of the people out of my department asked if I had been away. I said yes, and let it sit like that.



Thank you all for your wonderful support! I was going nuts between going back to work and trying to figure out this new website. I have gotten maybe 2 hrs of sleep in the last 24.

Indigoblue

Hi Leaf!

 I hope all your tests went well and you're feeling better.  The privacy of your illness is such a personal decision.  There was an article in first magazine last summer, I think it was then...about the choice women made and why regarding "not" telling anyone about their health issues; especially breast cancer.

Every person I know/knew has treated me as though I were a completely changed personality; in fact, some act as though I were already gone and buried.  Very hurtful, but I suppose it's rough to see a friend and/or family member suffer.  There are those whom I wish never found out, including people I worked with, and worst of all, my husband and his family.  Friends too.  But then again, they would have likely noticed something was up.  I waited many months before I told my closest friends; didn't want to upset them.

Also, it can screw up your employment opportunities in the future if you let it get around that you have had b.c.  Some people think it's contagious; ignorant, I know...but who knows? There are studies going on linking some b.c.'s to viruses in North Africa, and also some that are linked to a type of virus carried by mice.

What feels right to you, in your heart, is what you should do, always!  This one is tough, because the desease is bad enough, but the treatment and long term side effects can be even worse.

It's kind of difficult to hide, especially if you are too sick to function.  I know there are those who suffer in silence.  Fortunately, I quit my job before all this started, and was only working as a sub; fill in, on call...so it wasn't too bad.  They don't call me anymore; funny.

(((hugs)))

Be well, be loved, there are thunderstorms in Ohio tonight...love the rain and the wind. thunder and lightening; but my big doggy is scared and shaking.  She pretends to be so tough, but she's really just a little puppy on the inside.

 Indi

moogie

Some really good points have been raised in our discussion about the workplace. There are the legal " protections " that exist, but they are placed alongside the actual and very real realities of how human beings behave when they confront illness in someone they have aquaintance with.....

 In my own case, I was in a generally difficult work environment....with major surgical body changes. I chose not to say much, for good reason. I had heard coworkers gossip about a fellow worker who was a lovely woman, well -liked....with terrible luck in life. Loss through death of family members and prolonged life threatening therapies for a chronic life threatening illness. They were all publicly speculating on how long it would take for her marriage to crumble, how bad she looked, how her husband was younger...I said " there but for the grace of God go you..." and got some really strange stares. I was pre-surgical at that time, and learned the powerful lesson that people in fear and insecurity prefer to gawk at a car wreck instead of offerring a bandage.

Finding a few people at work who respected my silence on the subject was very helpful. We could have lunch and chat about American Idol, go picking through the racks at marshall's, or take a walk. They were people I respected before my mastectomies, and they were true friends in that stressful time afterwards.

Although many women disclose details of their journey, in some cases one's job security can be impacted and your own sense of well being compromised if your coworkers are very intrenched in the practice of gossip.

Moogie

Indigoblue

Moogie,

Where have you been on the breastcancer.org boards? You are so lovely, and your words are inspiring and impressive.  As one who has worked in many extremely different environments art, legal, medical, vets, accounting, building, sculpture, factories, music, literature, advertising, education; I have always encountered the nasty little gossip, backstabbing beast who seems to lurk in whatever environment you seek; human nature?

Even lived in the mountains in Northern Calif. and Oregon, working as a lookout, ranger, naturalist...still could not escape that "thing" in humanity; that seems to screw up the world and as my mother used to say:"cutting off your nose to spite your face!"

Everything is rather bloooey on the boards; sorry about my comments yesterday; as I was having a month of upset, and much of it due to that "gossip monger monster". 

 Be well, be loved.

Indi

Karyll

Hi, I am fairly new to these boards and awaiting test results. I chose to tell my co-workers and staff upfront about what was going on with me to hopefully stop the "gossip" and untruths that seem to run rampant in the workplace. Also, it has helped me with my co-managers, and GM to be able to suddenly take some time off for this test, or that appointment. I had a right mastectomy and as I went back to work two weeks post-op,(with one drain still in) I knew there would be obvious changes in my body structure. My staff and co workers have been extremely supportive, offering help and helping ME with my workload wherever possible. They are honest and upfront with me when they ask how I am doing, and what is next. I got tired of telling all the people one by one what was going on, and how I was feeling so I wrote up a little "Karyll's journey" page, and posted it for the care staff to see. (I even told them some of the funnies, like hallucinating on morphine). So far so good - I am not sure how it will play out in the future as I am still waiting on test results and they are all waiting with me and holding their collective breath for the results. It is a mini support team, and an educational opportunity for all us as we all learn about breast cancer. I worked in palliative/hospice care prior to this job as a Care Manager in a retirement facility and therefore, only saw cancer of any type in the end stages. I had no idea what the journey to that point was about. Now we are all learning and I bet you that 20 of those 40 women that are my staff have booked themselves for mammograms and other things because of this. Each place, person, situation different. I feel blessed to have the loving support of people who know the truth of my situation and are not afraid to ask for the truth. it beats the heck out of wondering if I have some communicable disease, or some emotional troubles, or or or. This way they know and can feel helpful as well as trusted and valuable themselves too.

Karyll

michmom

Reading these posts has really hit home for me.  I work in a hospital where gossip is rampant.  When I was first diagnosed and faced mastectomy I only told my supervisor and closest friend/co-worker.  While I was out after the surgery they had the difficult task of responding to others questions as to where I was.  Some realized to not ask further when given a simple answer but there was one worker that pressed on.  This worker eventually called me at home and when I was obviously evasive she still pursued questioning me.

When I returned to work and people asked I told them I had been on a medical leave and was fine.  Most left it at that.  I told very few people about the bc.  I felt they would look at me differently (which some did) and I kinda was embarassed and didn't want to deal with their reactions when I was still adjusting myself.

After my second surgery again I was out for a period of time but people bothered my co-worker less.  By that tiME I had told those I wanted to.  Returning to work after that surgery was different.  I felt better about how I looked (though you couldn't tell I had the mast even after the first surgery it was more my own perspective and self-conciousness).  Now I do tell some people when they ask .  Recently when I thought I had a handle on it I saw a co/worker that I hadn't seen in while and when I told her (a nurse) her eyes went straight to my chest.  That is the kind of reaction I want to avoid but you can't always gauge it.

I have a question for you gals.  When you see someone you haven't seen since your dx and they ask "How have you been?'" or What's been going on?" do you tell them the whole saga or just say all is fine (which it is NOW)????

lovestoteachnursing

Dear michmom, I am a bc survivor. When someone I havent seen in a while emails me or asks me how I am, I just say " doing well thank you". I don't feel a need to be evasive or nasty, just say how you are feeling as if you never had a past history. Keep smiling, it gets better . 3 years and counting.....

leaf

I suspect that gossip is worse in hospitals because we deal with these subjects everyday. I guess the thinking goes since we know Ms. X's history (if we are taking care of her), then why shouldn't we know all the details about our co-worker's history?



I don't have control who knows and doesn't know at this point, but I'm still really upset that someone would have the gall to suggest that I have my breasts removed, even though that was now 1.5 years ago.

It still makes me frightened of what someone will say next. (I have other issues too.)



It started out that I didn't want people to feel bad because I was crying at work and had red and swollen eyes when I was getting diagnosed. And the info spun out of control.



I'm more anxious today, because I just got a letter from one of my docs (neurologist) dated Sept 2, who opined I shouldn't have the neck surgery, at least not first. Well, I already had the neck surgery July 23, and he got these surgical consults that were in April and May. I had gone with what my neurosurgeon said, and what my 2nd opinion surgeon said. My surgeon said he would recommend it if I was his wife, and surgeon consult #2 also said I should have surgery- the sooner the better. So I did. Its so confusing when you have surgery and there's no way I can know as much as a neurologist or neurosurgeon. I don't want people at my workplace opining 'You shouldn't have had surgery.' It was really scary surgery - he was drilling right next to my spinal cord. I have carpal tunnel too.




I have these big splits in my hands because they are so dry. They look like they're callouses on my feet. I've been putting on hand lotion/cream almost every hour since late June. It hurts to wash my hands, and even more when I use the alcohol rub (I'm sure you that work in a hospital know what I am saying.) I suspect its all from anxiety.



And I have my 6mo mammos and ultrasounds this next Tues. Well, I'm getting 4 hours of sleep a night, which is better than 2h.

leaf (LCIS + ALH)

Indigoblue

Leaf,

Now that you put it that way, it would be rather like walking around naked, the fact that everybody not only knows your business but (butt!)lol, good golly miss molly!  Can't you go to/through a different hospital.  I know the hospital I go to seems to have a huge amount of employees who also receive all of their medical care in the same facility (doctors, nurses, etc). 

I would leave the state; yikes....no wonder my doctors can't keep employees...never thought about it, but working with those who know every cell and particle in your system has to be a drag; no wonder you feel the way you do. 

It's such a strange world, and the medical world is by far the strangest.  Blows my mind!

So does this new site...seeing "pink", not "red" or read.

Hugs to you, feel better...I must arrest this increasingly sour aggrivating mood...it all started after the breast double whammo bilateral digital, pain, pain, go away...what the heck did that mammodigital do to my boobs today?

Indi

leaf

I now get all my breast screening at the 'sister' hospital. (I had to get my 'problem' proceedure at my hospital because of ride issues.


Its always difficult for me to deal with change like changes in this website, especially when there are bugs to be worked out. It was very hard not to be able to post on last Wed, and I'm sure I'm not alone in having trouble making my way through this website. But that's what life is about-always change.



I'm so sorry about the pain on your mammodigital. I think some techs must really have a bad day and really squish you. I'm going to take some Tylenol beforehand. I know its absolute misery for some people, and I hope you feel better soon.



Thank you so much for your wonderful support, Indi. I do hope you have a speedy recovery!

moogie

Leaf: So sorry you have to deal with all this stress!! Don't worry over your neuro's opinion...you had 2 other doctors advocate the surgery, and surgeons view these things much differently than medical dr.'s. How are you feeling???

 Years ago when I was under great stress, and having to wash my hands often ( I was getting my degree in painting) I developed a galloping case of exema on my hands. Have you tried Aquaphor ointment??? I've had good results with it at night..

Hoping all your monitoring tests go well and without any event!!

Moogie

leaf

Thanks so much, moogie. i'm feeling better today, but I do need to get my exercise in and get some sleep.



I found the best thing that works for my hands is to wear plastic gloves almost 24/7. When I do this, my hands get very macerated, but the splits don't hurt when I wash my hands. They dry out within 5 minutes out of the gloves, even if I've put cream in the gloves.



My mammo and ultrasound came out fine, but, for the first time, no contact with the rad at all. Found out this was followup for my Feb 2007 biopsies. So if my next mammos (annual) come out neg, I don't know if they'll drop to annual mammos.



Will write more later. Thank you once again, all of you, for your wonderful support.

cp418

leaf - I just wanted to send you a hug and hope you are feeling better. Your feelings regarding your co-workers is identical to my feelings regarding certain relatives.  We are in a situation where we simply have to face and deal with individuals who are inconsiderate or rude.  I'm hoping to come up with some polite and direct answers to those individuals who cross the line. Maybe a polite thank you I'm doing fine and change the conversation to another topic. If the person persists and asks questions I think I'll play dumb and respond that it's my doctor's business.  I find the more words in my response is like quick sand and it only gets me in deeper where they persist with more questions or stories.  Kind of like the spider and the fly!  Joann

leaf

Longshot: I can certainly relate. I have not told anyone in my immediate family about my diagnosis (or about my neck surgery). (My genetics counselor said this would be a ethical choice for my LCIS + ALH under the circumstances. My condition should not require any additional breast screening beyond what my sister should be getting at her age.) I have multiple other involved issues with my immediate relatives. 5 cousins know as I had to contact them to get family history details for my genetics consult.



At work, a manager said she was 'going on medical leave for 2 weeks then 2 weeks of vacation', so maybe my experience has changed some attitudes. I wished her best wishes on her medical leave, obviously not inquiring any further details.



I think some people are coming from a kind place and are able to express this, some are coming from a kind place but it comes out wrong, some kind of care but are curious, and some don't care and are being voyeuristic.



The scheduler said we should have a party that I came back! (I work the very unpopular graveyard shift, and the regular staff had to fill in while I was gone.) Not exactly what I had in mind, but I think she was trying to be kind.



My experience has followed yours-the more words I say the worse it gets. But I have a hard time thinking fast enough to change the subject. It gets sticky with family members because you have fewer excuses. You usually have to deal with family longer. If I had a life-threatening situation, I don't know how I would handle some family members.



For my neck, as this neuro pointed out, I had 4 different opinions for neck surgery, ranging from 'this is not needed- at least not first' to 'do it-the sooner the better'. I know I don't have enough experience to say who is right and who is wrong. I did the best I could with the advice I had at the time. I did research the surgical options in this surgery, and my surgeon picked the options in the surgery the way I would have picked them. I'm not 100% recovered, but the surgery was *not* a disaster. Its difficult having a complicated problem that where there is no consensus.





Well, I have a lot of work to do. My car battery died on Wed because it was 9 years old, and I was not able to drive it when I was recovering from surgery. I couldn't get it fixed earlier because I have appointments every morning. It all turned out well, though. I just have a lot to do.

moogie

Leaf!!!!

Glad that you are feeling better! Wishing you a good weekend, and a good deal on a new battery. I'm dealing with a windsheild I probably have to replace any day now, and I miss the public transportation of my hometown NY!!! Last year, a rock hit it and I had to replace....now exactly a year from that time, a truck shot a tiny pebble at me on the highway..created a miniscule crack....and now I have got the San Andreas fault growing by the day!!!!! I think we all deserve limos with drivers!!!!

Moogie

leaf

Thank you moogie :-). How awful that you have to replace your windshield *again* - I hope your windshield is not jinxed. I know you won't be getting it fixed this weekend, but I hope you are able to drive safely until it is fixed. When you don't have transport, it just changes your life completely. I was very lucky that I'm close to public transport. If I was living in my hometown (in the 'burbs), it would have been much tougher.



I don't think I'm a lot less anxious - I do have an appt with my GP to get my hands checked out Sept 28- if they calm down I'll cancel. Employee health (taking care of my carpal tunnel) took a rheumatoid factor test on me which turned out normal (thank goodness.) But my fingers are so dry they feel like they are wrapped in stiff paper (though I'm typing OK.) They said wearing gloves can exacerbate eczema.

Anonymous

Leaf--I have a life long history of eczema.  The latex hospital gloves can definitely make your hands sweat, which can aggrevate eczema. But if you moisturize (or apply whatever your dermatologist recommends) and then apply white cotton gloves before going to bed, it really helps when the skin is really inflamed. Have you tried using Elidel? It's non-steroidal and really works well (we've tried everything topical steroid on the market in this family!!!)

Anne 

leaf

Thanks for the ideas, awb :-).



I am definitely not convinced it is eczema...the scaley/flakey parts are not more red than nonflakey areas of my hands, and are not more red than they were pre-flakeyness. I have had *zero* itching or burning of the skin. (I have had some burning, but it follows my carpal tunnel or ulnar nerve areas.) It sounds like itching/burning is very typical of eczema. http://www.emedicinehealth.com/eczema/page3_em.htm The redness is a solid background - there are no red lesions.



I haven't worn latex gloves at work for years. I bought new non-latex gloves. Its good to avoid possible irritation because my skin is not being exactly normal. I just hope its not something dreadful like scleroderma, though that is pretty rare. But so is LCIS. :-(.


My hands are very dry and I cannot make a full fist. Cannot do systemic non-steroidals for like a year due to my neck surgery (inflammation is needed for the bones to fuse.) I am doubting if inflammation is involved in my skin. I did get a few tubes of over-the-counter hydrocortisone cream, so I should give that a good try and see if it improves.



Thank you Anne - I think either I do not have eczema, or it is not typical eczema, though its probably stress related. All the skin splits heal up.



Your post has helped me be more tempted to keep the appt with the GP unless it really clears up.