16 Nov Cancer: The Harsh Story Of Lung Cancer vs Breast Cancer
{I will preface this post by saying that anyone that is diagnosed with cancer has their world changed forever. The clock begins to tick, world closes in on you, and your world is changed in a way that will never be the same. I am being provocative. I am challenging.}
For those of you that I have had the privilege of meeting, and for those of you I have not met, you know and will come to find that cancer is the story of my life. It is what I have dedicated my professional career to try and make an impact. I am fortunate enough to be able to combine my passion, my talent, and my wisdom all into one single focus.
In October I made a commitment to wear a bow tie the same color of the cancer awareness for that specific month. October was easy, it was Breast Cancer Awareness Month. I already had a few pink bow ties, so I found the right one, tied it, snapped a “selfie” and reposted as my profile picture to twitter.
However, in the middle of October I began to seek out the right bow tie for November’s awareness campaign, Lung Cancer. The official color for Lung Cancer Awareness month is clear, or pearl, since Lung Cancer is the “unseen” cancer. I began searching high and low and could not find anything that would be representative for the month. I couldn’t find anything that could carry the weight of representing me, Lung Cancer, or trying to bring more awareness to the disease.
Which made me begin to think about the differences between Breast Cancer Awareness and Lung Cancer Awareness. Why is there so much support, media coverage, focus, and “pink” apparel?
Why in the world of cancer are we segmented? Why is there classism? Why do we work on our own causes, in silos, versus working together to try and help to amplify the message for everyone? A boob, a lung, an anus, a brain should not dictate whether or not our voices are heard, they should all be heard, equally.
Seems to me that the fight for cancer awareness is just as fragmented as the rest of healthcare. Whomever shouts the loudest, gets the most attention, has the most money or celebrity status, or has the largest tribe gets what they want. It is not based on need necessarily.
However, there is a harsh reality when it comes to the differences between Breast Cancer and Lung Cancer. Have you ever done a Google image search on “breast cancer people“ and then done the same search on images for “lung cancer people.” Have you? Try it. (click on my links to see)
On the breast cancer side you see pink ribbons. You see women with smiles on their faces. You see people being active. You see many people coming together to band around and support one another on the topic of breast cancer. It is a club. A club that no one wants to join, but upon membership, it is a family of people that appear positive, healthy, supportive, both young and old, all races, all places. It is something that no one asks to get, but just happens to you because you happen to be a woman. Breast cancer and the pink ribbon has become a badge of honor. A badge of courage.
It is as if marketing has taken over and made Breast Cancer vogue and sexy.
Now look at the link for Lung Cancer. You do not see the same images. As a matter of fact, you see the exact opposite. You see patients that are in the worse scenarios imaginable. You see mostly men, that are so gaunt, skinny, suffering from cachexia, wasted away to almost nothing that they appear to look like the same images we see from the concentration camps of WWII. You see in almost all of the images a person with a cigarette in their hand. You see very graphic and gruesome images of what lungs look like from smoking. This is the club that no one wants to join as well, but upon a diagnosis, it is also a club that appears everyone wastes away. This isn’t the club where people are banding together, bonding over collaborating on events, or walks, or rides, or 3 day events, or having a dialogue out in the open in front of everyone. Everyone that is in this club is sick, on their death bed. The most disturbing is that the members in this club all asked to be in it by making the choice to smoke.
This isn’t the same badge of courage. This isn’t the same badge of honor. This is the badge of stigma that you asked to have this happen, that you paid for it to happen. This is the scarlet letter, the Clear Letter LC, the one that no one sees. No one discusses. The one that is locked up behind closed doors.
Maybe it is the harsh reality that the media has done so much to try and make all of us not want to smoke that it naturally labeled and gave a stigma to Lung Cancer. Perhaps it is the work of trying to make a big impact and stop smoking, that now there needs to be even more work tone done to first rectify the stigma of Lung Cancer, and then second, allow us to bring the dialogue to the forefront, to discuss it openly, and to try and amplify the message to get the same attention, research, dollars, and focus on Lung Cancer as we have had for Breast Cancer?
Maybe it is because due to Lung Cancer’s deadly nature that there are not any celebrities alive long enough to discuss it, to throw dollars at it, or to make it a national movement? Maybe it is that no one wants to “market” Lung Cancer because the face of it may not be as healthy or sexy? Maybe it is because people are not around long enough to begin a movement to have millions of dollars donated towards the cause? Maybe it is because once you are diagnosed with lung cancer the typical patient has a median survival of 6 months, and are too sick to walk/run/discuss/do a lecture series, and are worried about other arrangements?
Perhaps breast cancer can help lung cancer out? Maybe work together to help amplify the messages? Maybe bring the conversation to masses? Maybe it is a matter of having all of those people and families that have been impacted by breast cancer to ban together with the families that are experiencing or lost someone to lung cancer, and walk/run/talk for them?
Perhaps this is a function of reality, circumstance, and marketing?
1. Reality is that Lung Cancer kills 2X as many women per year as breast cancer will.
2. Reality is that Lung Cancer kills 3X as many men per year as prostate cancer.
3. Reality is 160,000 Americans will die of Lung Cancer this year.
4. 80% of those 160,000 deaths are in women and men that have never smoked or are non-smokers.
5. The 5 year survival rate for Lung Cancer is about 16%.
6. That survival rate has remained the same for the last 40 years.
7. It takes the average community hospital 30-45 days to make a diagnosis of Lung Cancer.
8. Once diagnosed with Lung Cancer, the median survival is only around 6 months.
It is my responsibility. It is your responsibility. It is the responsibility of every healthcare professional that touches or works with cancer. It is even the responsibility of those that actively and courageously wear pink with pride.
We all have a social responsibility to know the truth. To know the facts. To work together to help one another.
It is our responsibility to talk for all of those who have passed before, and for those that are battling today and do not have a voice. It is our duty to help amplify their story. To talk openly and freely about how the story of Lung Cancer is deadly, dreadful, and needs to have a razor focus so we can cut into it like we have with Breast Cancer.
Pink is the framework. Lung Cancer is the challenge.
What will your story be in this saga?
As always, you can feel free to contact me at: CANCERGEEK@GMAIL.COM
~CancerGeek
Tori
Posted at 16:13h, 16 NovemberExcellent post. The juxtaposition of the “lung cancer people” and “breast cancer people” was shocking and powerful. I thought I understood the stigma, but those images made it crystal clear. I am trying to get my story out there and bring attention to this disease and all the people affected by it; I hope that the funding will follow. Thanks for writing this.
cancergeek
Posted at 22:25h, 16 NovemberThank you for taking the time to read my post today. I am glad to hear that you found value in my post and my point of view. I always believe that together we can do more, be more, impact more.
Let me know if there is anything else I can do to help you, your cause, and your story.
Everyone has a story about cancer. Let’s amplify all of them and make a bigger impact.
Andy
grayconnections
Posted at 16:14h, 16 NovemberMay I reblog this on my grayconnetions.wordpress.com site ?
cancergeek
Posted at 22:27h, 16 NovemberDefinitely. Be my guest. I would be honored to have you reblog or report it. The fact that you find value in my point of view humbles me and touches me in a way that I am not able to put into words. As much amplification as we can get, the better.
If there is anything you need to help in reposting/reblogging this, please let me know.
Andy
@cancergeek
cancergeek@gmail.com
Andrea Borondy Kitts (@findlungcancer)
Posted at 19:55h, 16 NovemberI have been thinking lately about approaching the Susan G. Kolman Foundation and suggesting they start a lung cancer “division” as part of their Foundation. Do any of you know anyone working for them?
cancergeek
Posted at 22:29h, 16 NovemberI do have a couple of connections with Komen. Let me figure out who would be the best of the people I know, and send you their contract information.
You can email me at: cancergeek@gmail.com
I look forward to it. Let me know if there is anything else I can do to help you, your organization, or amplifying the stories.
Thank you
Andy
@cancergeek
cancergeek@gmail.com
grayconnections
Posted at 22:57h, 16 NovemberReblogged this on Gray Connections and commented:
This blog post highlights some of the reasons the stigma of lung cancer persists. Very well written, and worth the read.
MarybS
Posted at 00:53h, 17 NovemberVery well done!!! Thank you!!!
cancergeek
Posted at 02:04h, 17 NovemberI am glad you enjoyed it. I appreciate the compliment and feedback. Thank you. Andy
Cynthia
Posted at 01:07h, 17 NovemberWords cannot express my gratitude for such a courageous, factual, well written article.
Cynthia
cancergeek
Posted at 02:06h, 17 NovemberCynthia
Thank you for your words. I am glad I could provide value and write something that has meaning and impact to you and others. I hope to do as much as I can to help. This is my life and my passion. Together we can all amplify the stories of one another.
Thank you
Andy
@cancergeek
cancergeek@gmail.com
RoniLynn
Posted at 01:33h, 17 NovemberAndy thank you for taking time to write such a thoughtful and HONEST piece about the very real issues facing the cancer community. I’ve always known there was a vast difference between those with lung cancer and those with all of the ‘other’ cancers. But, after I decided to focus solely on lung cancer advocacy, I’ve seen it up close and it’s SO unnerving. When my mom got lung cancer she made it very clear that she was not going to hide from it. She WANTED everyone to know. Lung cancer, as a disease, is treated like a young, unwed girl who got pregnant back during the time when they ‘sent’ the girl away because of shame and ridicule. Crude analogy, but you get my point. The shame, the stigma, the disgust. I really wish I knew how we got here…when did we divide up into these little segments, like little kids fighting over the candy dish? How did we get here? And, will we ever be able to become ‘whole’ again? We’re so divided now that those who are in decision-making roles have to play favorites and make tough decisions regarding funding and support. I long for the day that we stop playing favorites and we support and care for everyone equally. (Laronica aka @louisianagirl91)
cancergeek
Posted at 02:12h, 17 NovemberLaronica
Thank you for your comments and message. I completely agree with you. It saddens me to see that in something that is so life changing to all, cancer, that we break up into all of our little clicks and groups. I am not sure what the combination of answers is, but I felt it was important to be honest and discus things that many people think, but no one wants to say at times. I think it is important to be open, honest, empathetic, and transparent. This is not about me or you, it isn’t about pink or blue or pearl or any other color. This is about the story of humans, the race of life, and how we battle an arch nemesis called cancer. We need to tell our stories. We need to share broadly. We need to amplify our voices so that we are all heard and have a seat at the table. Together we can all win.
Let me know what I can do to help. I am always open to collaboration and working to impact cancer.
Andy
@cancergeek
cancergeek@gmail.com
RoniLynn
Posted at 01:36h, 17 NovemberReblogged this on optimism and me and commented:
Please take a moment to read this very honest piece on the stark differences in treatment of those with lung cancer vs those with breast cancer. We can’t address the issue if we don’t admit that we have an issue.
Occupy Mars (@Futurist07)
Posted at 04:35h, 17 NovemberHi CG, Good article. With the recent innovative cancer detection method created by Jack Andraka, which is supposed to be able to detect lung cancer among the targeted pancreatic cancer for which Jack worked on, isn’t there a chance that this could be a tool used to detect lung cancer WAY before it becomes a threat to anyone? If this is the case, I believe there should be more attention given to Jack’s work, and there should be a push to make this new tool available, and testing for lung cancer should be given attention as well as to the other diseases it is meant to detect. (Personally, seeing him recently on Colbert and being given attention from others has been amazing to see, and I hope he gets even more exposure)
I think you’re right that more people need to speak out against any and ALL diseases, especially ones as harsh and damaging as cancer, and that we should invest in people like Jack to help pioneer new avenues to go down to find new, innovative techniques to detect and cure the most challenging of diseases of our time. Everyone, no matter where you come from, or who you are, is affected, so we should all work together to share in a better future for us all.
Thanks
Cat
Posted at 06:20h, 17 NovemberVery well written and unfortunately so very true. Thank you for taking the time and thought to make a difference. Since my LC dx I have learned so much. I couldn’t agree more with everything you have touched on. It’s time for a change. I speak of my disease often and openly to everyone. It is amazing how uncomfortable that makes people! But I will continue because it has been hidden, locked up and neglected far too long!
Colleen osborn
Posted at 09:35h, 17 NovemberSince last February, I have learned so much about this disease. I had breast cancer 3 years ago, and my BFF was there every step of the way, and I was proud to wear pink. Then came February. That beautiful, loving friend was diagnosed with stage 4 LC., she felt she deserved this dreaded disease, since she was a smoker. Did I deserve breast cancer, since I took birth control? Funny no one ever asked, as they have with her. “did she smoke?” they ask. Now I say to those, “why? Does it change how you feel about cancer?” she passed away after 6 months, I miss her every minute. Thank you for such a wonderful look at this unneeded stigma!
Colleen
Lpdncrosby
Posted at 11:29h, 17 NovemberThank you for speaking up.
Andrea Borondy Kitts (@findlungcancer)
Posted at 12:29h, 17 NovemberPlease see tweet I just did showing an image of the breast cancer VS lung cancer people side by side from your links. An advocate friend of mine did the image for all of us to use.
cancergeek
Posted at 14:06h, 17 NovemberI did check it out and I retweeted it myself. I thought it was awesome. Thank you for sharing with me, finding the value in my words, and for helping to amplify the message. Together we can achieve and do more for patients, families, loved ones, and our battle against cancer.
I am working on a clinical trial one w a patient. More to come.
Andy
@cancergeek
cancergeek@gmail.com
Ruth Rainwater
Posted at 13:18h, 17 NovemberThank you! I was diagnosed with Stage 4 lung cancer about a month ago and have been very open about discussing the statistics I have found. Smoking has been blamed for so many diseases that I wonder how much we are missing by not looking at the effects of things like air pollution, radon, asbestos, and other things that can cause lung issues as well as heart disease.
cancergeek
Posted at 14:09h, 17 NovemberFirst I want to say I am sorry to hear of your diagnosis and personal battle. Second I want to commend you on being so courageous and vocal about sharing your story and bringing the conversation out into the open. I know it is a difficult journey and experience, but I hope that as we all share our stories that it only brings more attention and insight into progress for Lung Cancer.
If there is anything I can do to help, in any way, please let me know.
Thank you
Andy
@cancergeek
cancergeek@gmail.com
Ruth Rainwater
Posted at 15:14h, 17 NovemberThank you. I have been blogging about my experiences as well as keeping a daily Gratitude Journal. I have had one chemo treatment so far and will have at least 2 more 3 weeks apart. I know my odds aren’t good, but I am a fighter and don’t intend to give up easily. I will retire in February and have a long list of things I want to do, so this minor setback is NOT going to beat me. 🙂
Ruth Rainwater
Posted at 13:21h, 17 NovemberReblogged this on A New Beginning and commented:
Thought provoking blog post…
Kristen Carlton
Posted at 23:23h, 17 NovemberI am in tears, but want to thank you for putting into words what so many of us affected by lung cancer are feeling. I am one of the fortunate ones. I was diagnosed with lung cancer this summer, had surgery to remove the tumor and left lower lobe, and I am now a survivor. There aren’t many of us. I am a 39-year-old never smoker who wants the world to see all cancers as equal. I hope that many, many people read your exceptionally well-written piece and change their thinking. Thank you.
cancergeek
Posted at 07:43h, 18 NovemberKristen
I first want to say that I am sorry for your diagnosis, but am happy to know that you are a survivor and are beating it.
Your words touch me and I am happy that I could do something that touched and impacted you, and so many others. It is so important for the world to know that lung cancer does not equate to smoking always, and that no one deserves cancer. It’s a shame of the stigma and it needs to be changed. We need to share stories broadly, have them heard, and bring the discussions out in the open.
You inspire me. I am humbled that my writing had the ability to impact you. I wish you all the best. If there is anything I can ever do, please let me know.
Andy
@cancergeek
cancergeek@gmail.com
Joyce M Lavey
Posted at 23:49h, 17 NovemberHi CancerGeek,
Thanks for this article. Yesterday I spoke as a 9-year LC survivor at a vigil in Walnut Creek sponsored by the Lung Canner Alliance. Part of my talk focused on standing up for ourselves and refusing to be in the closet or to be ashamed of having lung cancer and/or of being a former smoker. There were 3 doctors who also spoke. Half of the audience gave me a standing ovation-something which the doctors did not receive. I say more power to us for taking a stand for the cure and for our common humanity. Keep it up.
Best wishes,
Joyce M Lavey
cancergeek
Posted at 07:39h, 18 NovemberJoyce
I am deeply inspired by your words and find it so courageous of you to stand up, discuss openly, and for sharing your story. I agree, the discussions need to be front and center. There is no need for shame. We are all in this together. I think it is amazing that you can and do share your experience with others to help educate and bring this to the light.
If there is anything I can ever do, please let me know.
Thank you
Andy
@cancergeek
cancergeek@gmail.com
Germaine Acord
Posted at 14:49h, 20 NovemberWonderful article. With your permission may I send a copy to our local papers?
Thanks
Germaine
cancergeek
Posted at 15:05h, 20 NovemberGermaine
I first want to thank you for taking the time to read the post. I am glad to know that it had some value and meaning to you.
Yes you are more than welcome to send it to the paper. I would just ask that you cite the source and if it happens to get published, that you send me a copy or a photo of it.
If there is anything else you need from me, please let me know.
Thank you
Andy
@cancergeek
cancergeek@gmail.com
Mark Westphal
Posted at 19:45h, 20 NovemberThank you for this truth. My neighbor was diagnosed with stage 4 lung cancer in March of 2013. She is only 49. Thank you. I understand. Im learning. Thank you. May i share this on my Facebook page. Keep educating us all. Wondeful job…..
cancergeek
Posted at 19:47h, 20 NovemberMark
Yes, please feel free to share it on FB, email, broadly. All I ask is that you site where it originated from and if others have questions, to point them in my direction.
If there is anything else I can do to help you, family, friends, or loved ones, please let me know.
Thank you and best wishes.
Andy
@cancergeek
cancergeek@gmail.com
abdavison
Posted at 00:07h, 21 NovemberWell done! It is time to make lung cancer as culturally relevant as breast cancer. It is time to end the stigma. It is time for change.
cancergeek
Posted at 00:57h, 21 NovemberThank you. Makes me feel very fortunate that you enjoyed the post, my point of view, and saw some value in what I had to say.
It means a lot to me. I truly feel humbled that it had a bit of impact to you.
Thank you
Andy
@cancergeek
Cancergeek@gmail.com
abdavison
Posted at 00:08h, 21 NovemberReblogged this on Go An Extra Mile and commented:
It is time to change the perception of lung cancer in our popular culture. It is time to make lung cancer as culturally relevant as breast cancer.
cancergeek
Posted at 00:58h, 21 NovemberThank you for sharing & spreading the message! No stigma.
AnneMarie
Posted at 09:54h, 21 NovemberStanding beside you and Deana who has taken twitter by storm…. Proud to be a “pink person” who strongly supports the need for lung cancer to lose that stigma. Yes, it’s time…. it’s absolutely time….
cancergeek
Posted at 16:21h, 21 NovemberI greatly appreciate you taking the time to read and to comment. You are amazing and I am completely humbled that you found value in this particular post.
It really isn’t about the color of the ribbon, it’s about the ribbon. It’s cancer. It’s the story that impacts all of us.
Again, thank you for sharing.
Andy
@cancergeek
cancergeek@gmail.com
Casey Quinlan (@MightyCasey)
Posted at 16:07h, 23 NovemberI could not agree more – I battled breast cancer, and am beyond sick and tired of the pinkification that is “breast cancer awareness.”
More, MUCH more “awareness” – and ACTION – needs to be aimed at lung cancer. I won’t belabor the stats, since you’ve done a great job highlighting all of them.
I see great hope in the work of Jack Andraka, the teenage who’s developed an early detection test for pancreatic, lung, and ovarian cancer. Only downside is that it will likely take TEN YEARS for that test to be available in the US, but it will be available in the EU in ~3 years.
cancergeek
Posted at 16:11h, 23 NovemberAgree with you wholeheartedly. I’ve spoken to Jack and others via SoMe, and I believe we can push it and move it faster.
Andy
Janet W. Bumpus
Posted at 16:50h, 24 NovemberI am also another rare NSCLC survivor and not that it’s important, I never smoked. I participated in a few research studies at Mass. General Hospital in Boston where I had my rt. upper lobe removed in Aug. 2010. I was found to have an EGFR mutation from “something I was exposed to” in my lifetime. This mutation is much more prevalent in Japan in Asian women who never smoked with NSCLC. I am followed closely every 6 months @ MGH. I am an RN myself and have always been proactive with my health. Unfortunately, I lost my husband to esophageal cancer 8 yrs. ago, who like myself had no risk factors for cancers either. We were both in our 50’s when diagnosed. It makes me wonder what in the world could we have been exposed to…we lived in the country, fresh air, fresh water, no nearby factories or pollution. Radon??? We had built our house but new construction does not require an air test for radon. We’ll never know, we moved from there 18yrs. ago and the new owners also did not do an air test for radon.When I bought my condo 3 yrs. ago… yup, you quessed it, it tested positive for radon so a mitigation system was installed prior to the sale. I reposted this on my FB page because I have been dismayed over the disparity of attention and support different types of cancer receive. My mother died at age 68 of met. lung cancer and 2 uncles, one at age 50. I would love to see greater public awareness, research, support and funding for LC and the elimination of the horrible stigma attached to it. Bottom line: No one wants or deserves any type of cancer! Let’s unite and fight this deadly disease! The public apathy is appalling until it hits close to home, then it’s usually turns to grief.
Janet
Kennebunk, ME
cancergeek
Posted at 18:12h, 26 NovemberJanet
I am sorry for your loss of loved ones, as well as your own personal story in a cancer diagnosis. I agree with you wholeheartedly, a lot more needs to be done to eliminate the stigma and bring about more awareness about lung cancer, and the need to collaborate and work together on all cancer.
I am not sure if you saw it today, but I just wrote a piece on cancer as a common language. I think it gets to the heart of what you are saying.
I thank you for reading my post, for attaching a piece of yourself to the post, and for finding value in the words.
I wish you all the best and many wonderful thoughts your way.
Andy
@cancergeek
cancergeek@gmail.com
robin
Posted at 12:09h, 25 NovemberMy boyfriend passed away on October 23/13 of NSCLC (they believe) at the age of 49. He never smoked, was a multiple ironman/marathoner, in the best health. Lung cancer does not discriminate. He unfortunately passed away before they could begin targetted therapies that may have extended his life, and only made it 5 months past diagnosis.
cancergeek
Posted at 18:09h, 26 NovemberRobin
I am sorry for your loss and will keep you in my thoughts and prayers. You are so right when you say that lung cancer does not discriminate. It definitely does not.
I hope you know that if there is anything I or others in the community can do to help you, please let us know.
Andy
@cancergeek
cancergeek@gmail.com
William Olson
Posted at 13:48h, 25 NovemberExcellent article! My wife has Stg 4 NSCLC and is going on 2 years since diagnosis. She was on a targeted chemotherapy pill, Iressa, which worked great for 19 months but now she taking standard chemo. So they fight continues. We have been wondering how we can bring more awareness to LC in our area. Any suggestions anyone? We live just outside of Vancouver Canada and would like to get more involved. Send any ideas to William_g421@hotmail.com Thank you.
cancergeek
Posted at 18:08h, 26 NovemberWilliam
I do reach out to a few of my colleagues and friends and send you some additional information on things to do and help create additional awareness.
Andy
@cancergeek
cancergeek@gmail.com
William Olson
Posted at 04:43h, 27 NovemberThank you
Rebekah Callen
Posted at 22:58h, 26 NovemberHi!
My name is Rebekah, from New Zealand. My partner Charlie has lung cancer at only 38. We were both on and off again smokers but he also had major workplace exposures for the last 15 years. N.Z is EXACTLY the same with the dreadful stigma and de-humanising of lung cancer sufferers! I am holding a lung cancer awareness fundraiser tomorrow night, and I had to practiacally bully the N.Z cancer society into supporting it! There is NOTHING done for awareness here other than “stop smoking”. I have been lucky enough to get an interview this weekend for our major t.v news channel, and I would love you to tell me where you sourced your statistics in your article? I really want to quote some of them, particularly the numbers around non-smoker diagnosis. Any help greatly appreciated!
Kia Ora! Rebekah.
cancergeek
Posted at 23:01h, 26 NovemberIs it okay for me to email them to you tomorrow my time?
Rebekah Callen
Posted at 23:19h, 26 NovemberYes perfect! Thankyou so much!
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