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The Stigma


Tom Galli

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"You have lung cancer. You don't belong here. You gave the disease to yourself!" Those words represent an admonishment bordering on scorn that greeted my first and only in-person cancer support group session. It was fortunately small, populated by ladies, all who had breast cancer. 

I smoked; my entire family smoked. I also served as a career US Army officer. I spent months breathing oil fire smoke during the First Gulf War; have instant olfactory recognition of "burn barrel smoke" so prevalent in Army encampments; and lived 9 years in places with high radon gas concentration. I am the only one in my family with lung cancer. Might environmental exposure be my cause?

We are entangled in a culture of blame. Devastation is not bad enough; we are compelled to make it worse by blaming. Then we shame! We do it over and over. To what end? What is solved? Here is one very sad casualty. Many who join our Forum these days are never smokers. Yet they are instantly branded by The Stigma! It starts early. Almost the first question asked by their medical team is: did you smoke? How does the answer change treatment or outcomes?

There is another causality. Blame is a blocker to low-dose CT screening participation, particularly in the US veteran community. Who, after honorable service, wants to submit to a CT scan when the outcome leads to scorn? The chance of doing nothing appears preferable to the limelight of diagnosis.

Even language used to characterize scan eligibility is blame-tinged. Who wants to admit to being a “20-pack year” smoker? No wonder less than 10% of the eligible population actually agree to a low dose scan. One must sign a piece of paper certifying smoking history, and that dresses the stage for blame and shame!

We need to be done with this!

Stay the course.

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I cannot believe these ladies were so heartless, in a cancer support group no less, what an atrocious thing to do!  

Casting blame on others gives many people a sense of power and superiority; I bet you they never blame themselves when they do something regrettable. My doctors asked me if I smoked but I believe that was part of the diagnosis process. They wanted to assess my risk and predict cancer sub type. Outside of healthy living recommendations, or smoking cessation therapy, there is no place for such discourse.

I am afraid the stigma is very real, and even as a never smoker, I learned pretty quickly that I should not volunteer my lung cancer diagnosis info unless I have to. Heck even having told people I merely have cancer caused them to promptly stop interacting with me (parents in my kid's new school). No empathy even from educators. What a world we live in.

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I discovered I had lung cancer in decemeber 2022. Once I told my sister she wanted me to start calling and informing a list of people so she could talk about it! I said no and she got mad. I then told her that I did not want her telling people at holiday parties. She again got mad. Ultimately she ghosted discussions about me and when my mother was asked about me by cousins, she shussed her. 

For one thing, I can understand why people don't disclose lung cancer. Part of the reason I did not want to be the topic of holiday gossip. Plus, at the time, I had not discussed it with all of my children and it upset me that my sister was all about having something juicy to talk about. For another thing, my family just completely ignored me instead of offering any support or empathy - at my sisters down-playing because I told her not to (while intending to tell close family only) and evident upset that I did not want her to use me as party gossip. I got absolutely zero support from family. Since I missed a holiday gathering - which was early due to sister being out of town and dinner centered around sibling's plane schedule as they all chose to leave on christmas eve and christmas - my brothers and sisters did not give gifts.  (I had actually bought gifts for family prior to surgery)  Seems they/she got mad that I did not travel in zero degree weather 30 miles on bad roads. Fun times. My children (adults) could not make it either because they were working during the week and as well, did not want to risk travel during the extreme weather.

I mean really? Choosing not to travel while in recovery from a lobectomy is something most people would understand, especially when the weather was dangerous.

Has anyone else had family just completely diss you, withholding any type of support, during a cancer crisis? 

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I hear you and am glad you can reach out here. Sometimes I think people just can’t handle it.  I have no children of my own but have always been close to my nieces and nephew, children nof my oldest sister. I know this situation is a bit different but my sister was very ill and died in November, the day I got the results of my Ct, which was taken for another purpose. I did not tell any of my family until I got the pet scan and biopsy. I called each of the kids and talked to two, who have been supportive from a distance. The niece I have been closest to over the years did not respond for a week and then was very distant. I have not heard from her since. I know those kids went through a lot with my sisters illness and she has had other things but it still hurts.  So I can relate.  I do think, as I said earlier that people may not be able to handle all that goes with this disease.   It sounds like your lobectomy went well and any further as well. My mass is contained in my upper left lobe, with one lymph node outside the lung so no surgery. I am having chemo and radiation (which I finished this week) and then immunotherapy.  I am optimistic and hope you are too.  There are many supporting folks on this site welcome

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Hi sharonkay 

I'm sorry I've only just seen your message ,my wife and I went through the same sort of thing as you with family issues it's been absolutely terrible if you want to talk about it you can always message me or just read my posts, goodluck with everything Take care Justin 

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To add my 2 cents:  I was a life-long smoker (loved it!!) and quit just a few months before cancer diagnosis, because of symptoms I was having.  Although I'd quit, it was still deeply -- DEEPLY -- embarrassing to realize that I'd smoked all my life and now had smoker's (small cell) lung cancer.  I wanted to crawl in a hole and die.  But I took some deep breaths, remembering that I HAD quit, had done all I could to rectify, that smoking is not 100% death sentence (only about 15%, I'd had bad luck, that's all), was doing quite well in treatment, was finding that I had a very good attitude toward the cancer, life and death -- and, little by little, I got my pride back!  Very important thing, pride.  It's important to be able to hold your head up, not least because quality living, if not survival itself, depends a lot on attitude.  No matter your cancer, nothing out there has say over your pride, claim it for yourself.

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Wow, I can hardly believe this. I find that when I tell someone I have cancer, they automatically think it's breast cancer. It's like lung cancer doesn't exist and yet it kills more people. How can that be? They have breast cancer support groups here, but nothing but a general session for all other cancers. I am finding tho that there are people out there in my situation coming out of the closet. :) 

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I agree. I recently posted on Facebook about this.  I am a many year breast cancer survivor and always appreciated the support. Now I have a separate lung cancer and feel isolated. I have a lot of support from my friends and family but I agree that the lack of public support is troubling.  I know that it affects funding as well. I’ve read that one of the reasons for lack of events,etc is because there are not as many survivors to promote them. Sad 

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People just don't know. I hate that it automatically offer me the chance to act as some kind of advocate-- I don't relish that, but I do try to be open about my cancer. I always say something about how I never smoked and I consider it grossly unfair to have gotten it. I mean, truth, right? We can find our own support. It takes time, but there are big communities out there. This one, for example. And if you have had molecular testing and the testing revealed mutations, there are lots of specialized groups. Lungevity has a bunch that meet monthly via video conference, as well as other services. I hope you'll consider checking them out!

 

K

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Thanks for the good thoughts.   As to mutations, I don’t have any that are currently being treated by the new drugs.  I was on durvulamab but it did not work. Feels odd to wish I had a stuff. 

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