Has anyone experienced this kind of reaction?

[Deb W]

Tomorrow it will be 6 weeks since my surgery.

I ran into a person from my previous office.  I hadn’t seen her since I moved my office to another location 9 months ago – not really a friend and barely an acquaintance.   She looked at me with this sad, overly empathetic expression. She kept hugging me and it seemed over the top.    I wondered if somehow she knew that I had been diagnosed with lung cancer.  It turned out  that she works with my client’s mother and she told her.   She said that no one could believe it when they heard that I had lung cancer, and they remembered seeing me running with my dog and it was so sad.  I thought maybe they were worried for themselves as some are smokers, and I am not so maybe they could get it too.  I can’t seem to get her look and expression of pity out of my head.   It seemed as if she thought I had a death sentence and she was just so sorry.  I don't feel the need to talk about medical issues with others.  I can talk about it here and to friends and family.  It's not that I want to hide it because I do plan on becoming active with Lungevity and Lung Force.  If you've had a similar experience, how do you process/deal with it? 

[Curt]

Good for you for getting involved with those organizations.  I’m also a never smoker, recent surgery and do get those reactions.  It’s always uncomfortable talking with people I barely know about personal health issues.  It’s also uncomfortable not knowing who knows what.  I find myself having to ask my wife how much different people know when I know we’ll be seeing them.  Most everyone knows I had surgery.  I have not shared with everyone the specific of why I had the surgery.  I had a dad on my sons baseball team ask me how I was doing the other day.  I couldn’t remember what specifics he knew so I just kept it to a simple “I’m feeling good, thank god.  Thank you for asking”.   I had a vendor through work ask me the other day.  He seemed to be more aware of the specifics so I got further into it.  I usually focus on how lucky I feel that it was diagnosed early and the  positive aspects of my prognosis going forward.  I do also have the complicating factor of three young kids, 10/8/6 year old boys.  They know I had surgery, they know I had part of my lung removed because there was something wrong with it.  We have not used the word cancer with them. I do need to be careful who I share that info with in their circles.  I do have a sense that I should be talking to as many people as possible about it.  There is a smokers stigma to this disease.  The more people who realize this disease can affect anyone, the better awareness of that and the better the chances it gets the funding it needs for a cure.  I’m not fully there there yet but I’m working on it.

[Rower Michelle]

Hi guys, 

Yes, I totally get what you are talking about Deb.  Initially when I had to let people know why I wouldn't be returning to work (like ever again), the look on their faces was what I would describe as shattered.   Since I'm seven months into this, I really don't have any qualms about sharing my diagnosis with anyone.  It was such a shock for me, my family friends, teammates and colleagues.   What I've done is develop a short "elevator" pitch (I used to head up a sales organization) that is matter of fact.  I don't tell anyone about the Stage IV part as then people have many preconceived and uninformed assumptions.  It's been my experience when people have that over the top reaction, it's really their own fears they are facing.  Sometimes I think I'm coping better than my friends.   So I focus on the positives, emphasize the advances in research then quickly move on to the regular life "stuff".    

It is my great hope that the "surgery" peeps can at some point serve as our collective voice and lobby for the severe underfunding of lung cancer research.  It's not until we start making a LOT of noise that we can begin to benefit from the cancer advances.  Now that we are living with lung cancer as a curable condition (in early stages) and chronic condition (with treatment) look out Capital Hill- pretty soon there will be a wave descending upon them.   

Michelle 

[Tom Galli]

Deb,

Lung Cancer is deadly! It is a real shame that our National Institute of Health and the Congress don’t translate deadly into research dollars. 

I remember the dead man walking stare I received from those that found out. Word traveled quickly in my case because I had an episode of coughing up blood while at work. Everyone knew and there was a great deal of surprise when I returned to work after a year of surgical mayhem. Then came the two recurrences and again the death stare. A lot of people told me my experience was the catalyst for stopping smoking. So being an awareness model is productive but my frustration is translating my experience into more research resources. When people talk to me now about lung cancer, my first words are research and LUNGevity. 

We’ve got to get past this “self induced” stigma our society has. HIV/AIDS, drug addiction, and even obesity are well researched despite being mostly self induced. And, very sadly, about 18% of us are never smokers. 

So, rather than avoiding the conversation, turn the event into a research advocacy moment. Targeted therapy and immunotherapy have made a huge difference for many of us but those advances are not enough. 

Stay the course. 

Tom

[BridgetO]

 I like Michelle's idea of an elevator speech.  I can  imagine her as a cheerleader for lung cancer awareness. Go Michelle!

I've been generally open about my cancer diagnoses, all 3 of them. I've also been pretty upbeat when talking to others about cancer, and i don't avoid the word. I'm acutely concious of the stigma associated  with some diseases, since I've  had a number of friends die of AIDS. Lung cancer has some of the same kind of stigma as HIV and I think a way to diminish this is to banish it for myself by talking about it if it was just any other illness.. Yep, I had surgery, it was fairly easy, and I'm fine now!  I do mention that I was fortunate that my cancer was discovered early and so I don't need other treatment. Just like my spouse might talk about her gall bladder surgery. I save any moaning and groaning and feeling sorry for myself  for people I'm closest to and for this forum  (lucky you!).  I generally answer questions anybody has (unless they are TOO personal). The question "did you smoke?" is problematic. I didn't, but I'm uncomfortable with the question because it tends to divide us into "the unfortunate- it's not fair!" and the "it's your own fault".  It's important for people to know that anybody who has lungs can get lung cancer and  we're all in this together.. Nobody choses this disease and nobody deserves to get it, whether they smoked, breathed asbestos, or lived in a place with high radon.

So thats how I deal with it, and I don't get a lot of those " death sentence "  pity type looks. Everybody  has to deal with this stuff in the way they're comfortable with. I know, as to lung cancer, that it may be easier for me because my cancer was diagnosed early and so was relatively  easy to treat. For my gynecologic cancer, that wasn't so. It was advanced, my surgery was big and had long recovery, followed by radiation, chemo, and  treatment side effects, some of which are permanent. My approach with others was generally the same as with the lung cancer, and I didn't get many sad, death sentence looks then either. I did get "you' re so brave" to which I generally responded with something like " I'm not brave, I just dd what I needed to do to save my livfe and now I'm living my life." 

So Deb, do what your comfortable with. Except for close family and others you depend on for support, it's really none of their business and what you chose to tell them is up to you!   Hang in there and live the life you want. 

Bridget O

[LexieCat]

A lot of people think it IS a death sentence.  They maybe know about people who died and haven't heard about the people who are perfectly well or have long lives after getting the latest treatments.  

As noted, it's totally up to you whether to talk about lung cancer--in general, or yours specifically--to anyone.  

But you might tell them that you are fortunate in that it was caught early, you had surgery, and you have every reason to believe that's the only treatment you will ever need.  Remind them that Ruth Bader Ginsburg had basically the exact same diagnosis and treatment, at 86, and she's back on the bench, hearing cases.  You can say you appreciate their concern, but you intend to be sticking around till YOU are 86--and beyond.   

[Deb W]

Thanks so much for all of your replies.  Right after my diagnosis I fell it was important  to tell my long term  clients because I was going to be out for 4 weeks.  One woman said, I'm so sorry, my mother died of lung cancer...and that was before I had surgery.  I think people do the best they can, and they don't know what to say.

I like the "elevator" pitch idea.  I've also made it a point to refer women to the Lung Force site as well as Lungevity.  The stats for women with lung cancer are alarming...up 87% over the last 40 years.  I am still educating myself as there is so much out there.  I tell my story to close friends.  I didn't realize that Ruth Bader Ginsburg had the same diagnosis...see what I mean about not knowing.  Prior to the diagnosis it's not like I would read about lung cancer.  

I'm preparing myself for a dinner next Saturday, and I know that people are going to ask me questions, and I really don't want to talk about it.  I just want to have a good meal, listen to great music and participate in light chit chat.  I can't bear to look at the sad faces. I never thought about how it might feel when people looked at me with pity.   I do believe as mentioned above, the people reacting very strongly are thinking if it can happen to her, it can happen to me.  That's really the point.  

Thanks for your comments everyone...so very helpful.

[Susanrae]

Hi Deb W:  I am a little over a month into my LC diagnosis and have had the sad, puppy dog eyes directed my way and it is very hard to look at the sad faces.  Like you said, I never thought about how it might feel when people look at me with pity.  All of the comments are really helpful and thanks for bringing up this issue.  

 

[LadyLynda0712]

Hi,

I don't even feel qualified to respond to anything yet as a newbie without even a diagnosis yet. All I can add is this site is SO welcoming and informative--I've worried so much over the years about my blood pressure, heart, weight, you know, the things we're "supposed" to be concerned with. My lungs?  Pfft...I was good, I never smoked. My grandpa smoked into his 80's with no issues. 

How alarming to read LC is up 87% for never smokers. It's like a tornado, so indiscriminate in its path, no rhyme or reason. While I have no official diagnosis, just the thought of having multiple nodules on both lungs, spitting up blood, coughing nonstop on its 15th now, sleepless nights, ribs feel I've been stomped on, intermittent fevers (101.0 now) and just so fatigued that I can't play with my dog is beyond scary.  I've got two jobs as I see it now:  be proactive in going forward and, no matter what the diagnosis will be, become involved, because it's just the right thing to do.  I was saddened to read someone say people treat LC patients differently; feeling sorry for you if you never smoked, or thinking you deserve it if you did/do smoke.

LC awareness needs to be just as important as heart disease, diabetes, alzheimers or any number of things (not trivializing any of them).  I'm thankful I found y'all, and I'll be around. TY ⚘

[Rower Michelle]

Well said!  I hope you start to feel better soon! Let us know how it goes tomorrow. 

[Deb W]

Ladylinda...I hope you feel better soon.

I hope you'll all bear with me as I attempt to describe another experience last night.  First of all I want to say that I am well aware of just how lucky I am in terms of getting a diagnosis at stage 1B and that I only needed surgery.  I've accepted that over the past couple of months life is just going to be different in terms of scanziety (1st scan scheduled for October), and I will need to manage those worries.  

I was walking the dog last night and saw a couple I knew from tennis.  As I was talking with them about an upcoming tournament (I have not yet returned to competitive tennis), I casually said that I had a surgery and my doctor said that I could return to tennis next week.  My concentration was not good as I was preoccupied with whether or not I would tell them it was lung cancer surgery.  Something came over me...thinking I owe it to these people to speak out and let them know about my diagnosis and that anyone can get lung cancer.  So, I did.  The look of shock on their faces was overwhelming.  I reassured them that I was o.k. and that they shouldn't go easy on me when I hit the court.  I woke up this morning remembering the shock on their faces...and then pity.   Through this experience I feel I must speak out now to make others aware that this could happen to anyone.

Thanks to everyone for sharing their stories and educating me on lung cancer.

[Rower Michelle]

Hi Deb-

Yes- I think at this point we’ve all had similar experiences with the “the death stare”.  I admire your instinct to use the opportunity to educate your tennis mates. In my opinion we all have to pitch in to raise awareness and reduce the stigma. No one blinks over breast cancer anymore!  Go get ‘em on the courts! 

I came up with an elevator pitch that’s very positive (I leave out my Stage IV part most times as that triggers the freak out meter). 

I’d like to think I’m having an impact. Last week when I saw my PCP for the annual physical, he said they recently had an in-service to be more aggressive with imaging when a cough isn’t resolving.  

LadyLynda- your first and only priority this week is to advocate for your pulmonary appointment. Once you’re on the pathway to wellness, we’ll gladly accept any help we can get! 

[Deb W]

Hi Michelle,

Thanks for your kind words.  I've made a decision that when asked, or when it comes up in conversation, I will talk about it.  It's uncomfortable and still hard to talk about, but I know it's so important to educate people about lung cancer.

That's wonderful that you're having an impact on your PCP's practice!  Glad that they'l be screening.  I am hoping one day we won't need a cough or sore throat to get an annual chest x-ray.  If I didn't have a pulled muscle in my back, I'm certain I wouldn't have had an x-ray because I had no cough and all my blood work was great.

Thanks for the words of encouragement on the courts.  I'll have my first mixed doubles match Wednesday at 5!  I've gotta say I am worried about stamina, but I've got to try it out and see how I do.

 

[Tom Galli]

Deb,

It may be personally helpful for you to keep a diary about people's reaction to your diagnosis. You seem to have quickly grasped the stigma. A diary that captures your encounters with people and your thoughts about their reaction to your diagnosis may be very comforting. Moreover, it could form the basis of a book or article you might want to write as you proceed through treatment.

My treatment diary turned into a book and I've been told it has helped many with their diagnosis and treatment struggle.

Stay the course.

Tom

[LadyLynda0712]

3 hours ago, Rower Michelle said:

Hi Deb-

Yes- I think at this point we’ve all had similar experiences with the “the death stare”.  I admire your instinct to use the opportunity to educate your tennis mates. In my opinion we all have to pitch in to raise awareness and reduce the stigma. No one blinks over breast cancer anymore!  Go get ‘em on the courts! 

I came up with an elevator pitch that’s very positive (I leave out my Stage IV part most times as that triggers the freak out meter). 

I’d like to think I’m having an impact. Last week when I saw my PCP for the annual physical, he said they recently had an in-service to be more aggressive with imaging when a cough isn’t resolving.  

LadyLynda- your first and only priority this week is to advocate for your pulmonary appointment. Once you’re on the pathway to wellness, we’ll gladly accept any help we can get! 

I have to see my PCP first I found out.  I'm still awaiting a call back to see if I can get a referral asap, which to me makes sense, so my PCP and I can then discuss things further on the 20th. 

16th day of wheezing & coughing. Ugh. The red tape begins...

[Deb W]

Great idea, Tom.  I had been writing a journal daily, and then I stopped about 4 weeks ago.  Tomorrow will be another challenge/opportunity for me.  I haven't seen this group since before my diagnosis.  I imagine some of them know.  I become extremely uncomfortable in anticipation of talking about  my diagnosis with others.  I am a psychotherapist, and I think I need to work on cognitive behavioral skills that I work on with my clients😉

What is the name of your book?

[Rower Michelle]

Hi Deb-

Once upon a time I was a LCSW - yeah those skills went out the window upon diagnosis. I did my post graduate work with Marsha Linehan I the early 90s.  So much for CBT!  Go easy on yourself. 

The day after my diagnosis I went to the boat yard and told my rowing team.  It was awful.  I couldn’t handle their shock, despair or tears.  After that, my mixed doubles partner volunteered to tell the rest of the community to save the roller coaster of emotions.  I’m glad we did that.  You might consider nominating a trusted team mate to get a brief message out.  

Today the team treats me as if it’s business as usual which is such an awesome distraction.  I’m betting the same will happen for you! 

Good luck- We’re rooting for you! 

[Deb W]

Hi Michelle,

Thanks for sharing your experience.  I'm also a LCSW.  I believe Marsha Linehan attended my alma mater Loyola Chicago.  I am still practicing and will do my best to apply those CBT skills.

It's going on 3 months since my diagnosis, I sort of feel extra pressure to play well to show them I  am the same person, and I can still be competitive (ridiculous, I know).  Honestly, I am  thankful just to feel strong again, and if I'm being honest, I didn't believe I'd be playing again.  Now if I could just get rid of the cloud of thoughts of recurrence, but maybe that cloud is what keeps me so thankful for every breath I take. 

Thank you!