How and when do you tell people about your lung cancer?

[Leslie221]

I thought this was interesting. After you read it, please answer this question:

How and when do you tell people you are (or someone you love is) a lung cancer survivor

Telling Others You are a Survivor: Detailed Information

Why is knowing when and how to tell others sometimes difficult for survivors?

During their survivorship, some survivors think about whether or not they want to tell people that they are cancer survivors. You may feel that your cancer experience is a big part of your life and that in order to know you people must know you are a survivor. Or you may think that cancer isn’t a part of your life anymore and that there is no reason to tell others about it. Being a survivor means different things to different people, and there is no right or wrong way to feel about telling others you are a survivor.

Examples of times you may wonder if you should tell others you are a survivor:

When you start a new job

When you go to a new school

When you start dating someone

When a new friend or colleague is diagnosed with cancer

When someone asks you about a scar or physical change caused by cancer

Some survivors find telling others helpful; others don’t think that it’s important for people to know. If you want to tell others you are a survivor but don’t know how, there are things you can do that may help you become more comfortable telling others. Understanding the different ways to talk to others about your cancer experience can help make it less awkward. Sharing your experience might help you gain support during your survivorship.

What are some signs that a survivor is thinking about whether or not to tell others?

The same questions about whether to tell others that you are a survivor may cross your mind every time you meet someone new. People may ask you questions about your physical changes or cancer in general, and you will have to decide whether you want to tell them you are a survivor.

Survivors that worry about telling others may ask themselves:

How do I introduce the new me?

Do I tell them I am a cancer survivor? When?

Will I scare them off?

Will they feel sorry for me and see me as a victim?

You may decide that you don’t want to tell others that you are a survivor. Although, if you have a physical change that happened during your treatment for cancer, people may ask you how it happened. Thinking about how you will respond to questions about your body or cancer before others ask may help you feel more prepared to answer their questions. Even strangers may ask about your appearance, and this can seem rude at times. However, some of these strangers may be survivors themselves, offering to lend their support.

Examples of physical changes caused by cancer treatment that people might ask you about:

You had an arm or leg amputated

You have visible scars

You have visible markings from radiation

It is your decision whether you want to explain to them about your physical change and your cancer experience. Some days you may feel like telling the whole story, other times you may just want to tell the people who ask you that it’s none of their business. You may go from one extreme to another – telling someone immediately or never bringing it up, feeling comfortable or feeling uncomfortable. You might respond in different ways to each new situation. Do what feels most comfortable to you in the moment.

What are some examples of times a survivor may think about whether to tell others?

You and your family have been invited to stay with friends at their cabin this weekend. You are scheduled to have your yearly check-up the following Monday. Usually, you are very overwhelmed and anxious the weekend before your check-up and prefer to stay at home and relax. Do you tell the friends about your check-up or make up an excuse?

You have a colleague at work with whom you now work closely on many projects, but you didn’t know him very well during your treatment. He asked why you were away from work so much a few years ago. Does he need to know that it’s because you had cancer?

You recently made a new friend whom you like very much. You are meeting her for coffee and want to share your survivorship with her. Do you tell her? How? Will she be scared off? Will you lose this new friend?

You recently started dating a new person. You really like her and are worried if you tell her you have cancer it might scare her off. How do you bring it up naturally? How do you explain your scars? How will she react?

You have to think about what response you are most comfortable with and decide at that particular time what you should or shouldn’t tell the other person.

Preparing yourself for the conversation may help you feel more confident. You might not be able to predict when you will tell someone. It might just happen – that’s OK. Each experience of cancer is as different as the people diagnosed with it. Each survivor who wants to tell others that s/he is a survivor may feel differently about the best time or the best way to tell others. You will decide what is right for you

What are some of the reasons it can sometimes seem difficult to tell others?

There are many reasons why it can be difficult tell others that you are a survivor. You may have your own personal reasons for not wanting to tell others. You may not want to tell others, because you are worried about how they will react.

Some of the reasons you may not want to tell others:

You may feel embarrassed talking about cancers of certain body parts, such as breast, anal or prostate cancers

You may not feel like telling the whole story or answering a lot of questions about your cancer experience

You may feel like your cancer experience is still too painful or upsetting to talk about

You may feel like your cancer experience is personal, and you only want to share it with a few people

Some of the negative reactions you may worry about:

They might feel sorry for you

They may tell you stories about people they knew who didn’t survive cancer

They may tell you how you should feel or cope with your cancer

They might just walk away

You may have told people in the past who reacted poorly, and you don’t want that to happen again. Other’s reactions to hearing that you are a cancer survivor may upset you. It may make you feel like you did something wrong. You did not do anything wrong. It’s important to understand that no matter how well you tell others or no matter how long you wait, some people may react poorly. If you want to continue to share your story, it might make it easier if you try not to let other people’s reactions bother you too much.

To make it easier on yourself and the people you tell, you might want to ask them to set aside some time so you can tell them something important. Then, you can share as little or as much as you want and allow them some time to understand what you are saying and ask any questions they may have.

Not everyone will react negatively. Some people who you thought would react negatively may surprise you and be understanding and open to hearing what you want to share. Telling someone that you are a survivor may give you another friend who can support you during the ups and downs of your survivorship.

What are some suggestions for survivors who want to feel more comfortable telling others?

Write in a journal about how it feels to be a survivor

Practice telling others

Learn ways to respond to an unexpected response from another person

Talk to a mental health professional if worrying about telling others you are a survivor causes you anxiety, depression or other feelings that overwhelm you.

This document was produced in collaboration with:

Lori Worden, MSW, LCSW

Association of Oncology Social Work

Works Cited

Sue P. Heiney, Joan F. Hermann, Katherine V. Bruss, et al (2001) American Cancer Society 2001 Cancer in the Family Helping Children Cope with a Parent’s Illness.

[Donna G]

Interesting. For myself I blab about my lung cancer to anyone. I talked about it this morning at the dog park. I refused to be "ashamed". I am an RN and I even tell my patients that I had lung cancer if it comes up, as they have been diagnosed with cancer. I believe I am a better person now after surviving lung cancer, I have been through "fire" and survived.

I was just about to start working a new job when I was diagnosed, I called my new supervisor and told her what was going on. She used to call and ask how I was doing. When I finished treatment and had the OK from the doctor she scheduled my orientation- in May ( I had been scheduled for December)

I imagine however that many have most or many of the above concerns.

Donna G

[elkiesmom]

Donna you sound alot like Gary. He told everyone including his employer as soon as he found out. He finds it very easy to talk about his lung cancer. He has no fear of who knows.

Lorrie

[Don M]

I told everyone and anyone who was willing to listen about my diagnosis. I held off on telling my mom until I knew for sure. If it comes up in conversation, I talk freely about my history.

Don M

[Debi]

This is such an important post and I really don't know how to answer it.

Unlike the others before me, I am pretty close-mouthed about my lung cancer, especially among people that I don't know well. As far as a new job, I don't think I would be comfortable discussing my cancer for quite awhile. I have seen people's eyes change when I tell them I have lung cancer; I never could quite identify pity in someone's eyes until now and I really don't like it. I want someone to know ME first, before they know the cancer part. Then, most of the time, it's okay to tell. So as much as I think I should advocate, I guess I need to face the fact that I'll never be a poster child, I just can't do it. My lung cancer is too personal for me.

The other point that hit home was the dating one. I don't date, although of course, I am a real catch particularly being 49 years old and not only having a 1st grader but lung cancer as well. Seriously though, I have always thought that if and when I do date, at what point would I tell someone? I mean if you wait too long, it's not fair to them but how do you tell them early on? "Hey, thanks for dinner..by the way, I have lung cancer." And I'm sure the longer you wait, the harder it is to say. OH well, living in this town, I don't even need to fret myself about dating...

Anyway, great topic Leslie!!

[Ry]

We told everyone we saw in those first few days. I mean there was no NOT telling it-- was apparent something was wrong. The day John told me he had to come to my office. It's not the most private place and so everyone I worked with were the first ones to know. We were so rushed through treatment (our story explains that part) that we couldn't really call his family. We told them a few days later. John told his employer the day he was diagnosed. We've told everyone we know and we're pretty open about it.

Recently John started taking a pottery class though and he hasn't told anyone there.

[dadstimeon]

I told my family, friends, work as I went along. I was lucky, I did not have to rush into (see my profile) anything. All I asked/ask out of everyone is no feeling sorry, no special treatment, no the world's going to end, just treat me like anyone else and yes we can laugh and joke about it. Works for me!

[Kaffie]

I told everyone who would listen, I think it was my way of making it real to myself.

My husband offered absolutely no support, in fact he had no reaction when I told him. His attitude did not improve during my treatment so I relied on my mother more than I should have, she is 73. After I finished chemo I filed for divorce. I've heard of this happening but I was surprised when it happened to me.

Kathy

[Addie]

It took me a few days to absorb it all myself...and so initially I just told family and my closest friends.

But in rather short order, I didn't care who knew. I knew I was gonna go bald with tx, and having no other "good reason" for showing up at the golf course without hair...I figured I'd best explain what the heck was going on!

The only time I feel "awkward" about it...for lack of a better word....is around little kids. They really don't understand a bald woman...and if they ASK me (I love that kids are so honest! ), I just say I had to take a very special kind of medicine that made my hair go away. I'm careful to say it's a kind of medicine that isn't "normally" given...because I don't want kids to fear getting an aspirin or cough medicine or something.

But otherwise...I don't care who knows. Like Rich I told everyone who seemed to have a sorrowful reaction to SHED NO TEARS FOR ME. That I'd tell them when the time came for tears...but for now...Onward and Upward. Strong positive thoughts that there was treatment and I was going to get thru it.

I still feel that way...altho hubby and I have shed a few tears in two very short pity parties, when the cancer came back twice. Still...I've beaten it back once and I just know this current radiation is taking care of the brain boogers. Played nine holes yesterday and am doing the same thing today, so a BIG OL' RASPBERRY ON CANCER!! LIVING is a lot more fun...right?

[Leslie221]

For me, the decision to tell family, friends and neighbors was eliminated because everyone (including Mark and I) found out because I was dying in the hospital.

But, even if everyone knew (even before I did actually, since I was unconscious for a long time), I've never felt any hesitency telling anyone. I don't attach any stigma to it - it's a medical issue to me, not a moral one.

What I don't want is pity or for anyone to walk on eggshells around me. I haven't had any problem with that kind of reaction, but that may be because I haven't had any physical symptoms that indicate I am sick at all. And I explain it matter-of-factly and am upbeat. I guess I give them a hint of how I want them to respond to me.

I tell strangers if it makes sense to in casual conversation. Otherwise, I don't feel any need to bring it up with them. I haven't applied for some jobs I might have wanted to try because I can't count on how long I'll feel well. I think I'd feel obligated to tell them and I'm sure that might cause some awkwardness.

Leslie

[Snowflake]

When I was diagnosed, I told everyone. I was still in shock and guess I didn't really believe it. The more I repeated the story, the more I felt it being hammered in.

Everyone at work knew the story - heck, I took off for over four months and I wasn't pregnant, it HAD to be cancer, so why not tell 'em what kind?

My surgery was announced at the luncheon for my grandmother's funeral - she had died on Friday and my surgery was scheduled mere hours after her funeral was planned. My extended family and much of the small town I live in learned of it at that time. There were prayers to guide the surgeon's hand...and I learned a few things about faith as well as strength through the experience.

Now, I don't tell everyone. I did mention it during job interviews, since time off for doctors' appointments is at the supervisor's discretion. If I couldn't be "excused" for my quarterly tests and appointments, I didn't want the job. About a month into my new job (yeah, they hired me), I ended up with a new supervisor in a management shuffle. His wife has LC, as well. Small world....

I tell medical personnel that I have a "compromised respiratory system" and that I'm missing 55% of my right lung. Then I answer that it's due to lung cancer, and then I answer that I never smoked... I know the questions, know the answers...

I guess after a while, ya just don't want to be reminded of it anymore. If you can make it through getting dressed and NOT see the scars and then get to the car without being short of breath, you deserve to be able to forget about it for a while and not breathe every breath with cancer in the back of the mind. I try to lock the monsters up every chance I get.

Oh yeah, and I'm not dating...