Anyone Can Get Lung Cancer

deanas photo“My beloved mother was diagnosed with Stage IIIb non-small cell lung cancer in early June, 2012,” says Deana Hendrickson. “I knew virtually nothing about it…was heartbroken, and frankly angry, to learn that over half of those with lung cancer die within a year of diagnosis.”

The estimated new cases and deaths from non-small cell and small cell lung cancer combined this year are 228,190.  Deaths from lung cancer are estimated 158,480.  For both men and women, lung cancer is the leading cause of cancer deaths in the United States, claiming more lives each year than colon, prostate, ovarian and breast cancers combined.

One reason for the high mortality rate is that lung cancer is difficult to catch early.  Twenty-five percent of people who are diagnosed have no symptoms at all: the cancer is first discovered on an X-ray.  In others, coughing or shortness of breath are ignored or believed to be symptoms of flu or allergies. Often when symptoms become more severe, the cancer has spread.

Deana’s research also revealed that the 5-year survival rate for lung cancer is less than 16%.  “This dismal prognosis was made even more upsetting when I discovered that lung cancer federal research funding lags far behind other major cancers despite the fact that lung cancer is the number one cancer killer,” she relates.

Deana is on a mission to educate on this deadly disease. “I was so shocked by my own ignorance that I figured others must be just as clueless,” she says. She learned from experience the terrible stigma of lung cancer, “Mom and I learned first-hand about the stigma of a lung cancer diagnosis (the “did she smoke” factor, as if it’s a deserved disease).”

Between 15 and 20 percent of people who get lung cancer haven’t smoked a day in their lives.  Sadly the efforts made to dissuade cigarette smoking have had the effect of stigmatizing everyone who gets lung cancer. “I am the first to admit that I once thought lung cancer was a deserved disease. I’ve watched the commercials and read the ads linking smoking with lung cancer.”  Deana has changed her mind, “Smoking cessation and prevention efforts are wonderful…Unfortunately, these programs have…had the unintentional effect of perpetuating the perception that lung cancer patients asked for it. It took much thought and soul searching for me to realize that whether smoker, ex-smoker, never-smoker, no one deserves this awful disease, nor any disease for that matter.“

Exposure to second hand smoke, radon gas, asbestos, heredity and air pollution are some of the causes of lung cancer in non-smokers.

Deana is educating through twitter, founding the twitter chat the Lung Cancer Social Media twitter chat, hashtag #lcsm.  Based on the successful Breast Cancer Social Media chat (#bcsm), Deana is hopeful that the involvement of physicians, like chat moderator Jack West @JackWestMD and participant Martt Katz @subatomicdoc (who came up with #lcsm), will provide the kind of support and guidance to assure the chat is timely, supportive and accurate.  “I really wanted to have a hashtag to unify the lung cancer community; a “place” where we could all be as one group.”

Deana’s determination is based in loss.  “I was [my mother’s] primary caretaker,” Deana relates, She suffered terribly,” Deana remembers.  Deana lost her mother just nine months after she was diagnosed, in March 2013.  As she mourns she is taking action, “I’m a great believer in the power of people making the choice to do something, anything, to make the world a better place. In Judaism, it’s known as Tikkun Olam (literally “world repair” or repairing the world). That’s my inspiration.”

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Always talk. Always share. Always engage.

“Always talk. Always share. Always engage,” says Anton J. Gunn, Director of External Affairs in the Office of Intergovernmental and External Affairs (IEA) at the U.S. Department of Health and Human Services (HHS).

Mr. Gunn’s long title might put you off, but there is nothing off-putting about this energetic former college football lineman when he is talking about service.

Anton GunnAnton Gunn is a newcomer to Federal Government, joining HHS after serving as the go-to man in South Carolina during President Obama’s first election primaries.  He worked grassroots, going door-to-door to win voters and in the process came to the decision that he should serve in the South Carolina State House of Representatives.

Linemen are usually the largest players on the team.  Their role is to make a space for action, meeting obstacles and overcoming them.  Meeting obstacles–like winning a seat in the SC State House, in a predominantly white Republican voting district–seems to be his destiny.  In his present position at HHS, one of his roles is to cultivate and maintain relationships with national, state and local organizations.  With the Affordable Care Act (ACA) being rolled out, Mr. Gunn will be tackling many challenges.

Gunn’s message is engagement, “I am proud of our work on the ACA.  We have efforts focused on patients…There is no better way to get real answers to real questions than to make a COMMITMENT to engage with patients and stakeholders.”  And he believes that engagement will overcome some of the challenges in healthcare, “Challenges? Well, there are lots. Lack of literacy. Social norms. Culture all can make it difficult. But we can overcome them.  We have tools like the ACA that will reduce challenges in health care.”

October 12, 2000 marked a turning point in Anton Gunn’s life.  On that date, Gunn’s  younger brother, Cherone, a seaman serving on the USS Cole, died in the terrorist bombing that also claimed the lives of 16 other sailors. Motivated to enter the political arena, Gunn became an active community organizer and advocate, a leader in economic development and health care reform.

“Public engagement means that you are focused on those you hope to serve,” Gunn believes.
“It means what matters to them, matters to you.” His professional mission, articulated in The Audacity of Leadership: 10 Essentials to Becoming a Transformative Leader in the 21st Century released in 2009 is to bring, “”diverse perspectives together to solve world challenges.” People-to-people is the way to find answers, Gunn feels.

Gunn also believes that technology can make a difference.  “We have to embrace technology to get higher quality outcomes in health care.  Health information technology can provide a standard framework for all to attain higher health literacy,” Gunn states.

To illustrate, Gunn points to the investments HHS is making to reduce health disparities, via health technologies “HHS launched an app challenge titled “Reducing Cancer Among Women of Color” last August.  The winning app will provide users w/ info on screening & preventive services in diff languages & in culturally appropriate contexts.”

Persuading the public that the Affordable Care Act will make a difference is Gunn’s present objective. “The ACA will make health coverage available to millions who don’t have it now. That’s a big first step to helping them to get care. “  He believes that joining health technology and the ACA’s insurance coverage is a huge first step.

“Being able to afford health insurance has been a challenge. The ACA is changing that.  ACA means insurance reform, and health information technology means delivery reform. “

By meeting people where they are, Anton Gunn is trying to improve healthcare in the US. “The power to improve our health care systems is at our finger tips. Engage. Include. Respect and Empower patients and consumers,” he tells all stakeholders.  His plea to us is simple, “ Visit http://t.co/Rzbm1JeWHO, learn about the marketplaces coming in October. Help someone get covered.”

Based on a #HCHLITSS twitter chat with Anton Gunn on May 9, 2013.

Moms: You Are Not Alone

Lauren HaleLauren Hale (@unxpctdblessing)a two time postpartum mood disorder survivor who describes herself as having “turned peer supporter and  advocate for families struggling with Postpartum Mood Disorders [PMDs].”   She  also hosts #ppdchat  on Twitter for families struggling with PMDs.  She joined #hchlitss on March 1, 2012 to continue our discussion of mental health literacy.

What is PPD or Postpartum Mood Disorders? 

“A Postpartum Mood Disorder (PMD) is when a mother experiences psychological issues within 12 months of giving birth.  PMD issues can range from anxiety to depression to OCD [Obsessive Compulsive Disorder] to PTSD [Post-Traumatic Stress Disorder] or even to Psychosis, which is a medical emergency.”

One of the participants clarified that “PPD” specifically refers to “Post-Partum Depression.”

Does anyone have an understanding of the causes?

“Researchers are still working but many believe hormones are involved. [It’s]  not always the case.  [It’s] important to mention[that] thyroid issues, iron deficiency, and some vitamin deficiencies may simulate PPD symptoms.  [It is } important to rule out other causes before hopping on an anti-depressant.”

So is there any information out there that educates women about PPD?

There are several blogs, websites, and organizations doing wonderful work to educate women and providers.  Postpartum Support International is a great place to start. So is Postpartum Progress.

Peer support is a key component [to care] –[It] reduces[the] isolation in our struggle [which has a ] HUGE impact. “

A participant shared her “ favorite resource for info[rmation] and community regarding PPMDs is [Postpartum Progress] http://t.co/6wkvTaYF and #PPDChat [facilitated by Lauren]  is a hugely helpful resource in this area.”

Are medical providers uneducated about PPD/ PPMD?

“They can be – PPD/PMD is still not largely covered in medical training.  Also, peri-natal women see a large variation of providers which makes it difficult to narrow down education necessity.”

A participant noted that “It can also be really difficult to find a counselor/therapist who is knowledgeable [about] PPMD.”

Another participant shared that “family doctors are [need education].  [I] explained my symptoms,[my family doctor] never suggested beyond PPD and PPA [post-partum anxiety]. “

A third participant offered another example of her experience with a health care provider. “ I found it more harmful to see a counselor who was uneducated…than not to see one.  [They] blew PPD off.”

Yet another participant stated, “My PCP [primary care physician] would love more info on PMD, she says they are seeing more cases and have no information.”

In your opinion, what are the primary challenges women face regarding mental health literacy? 

“I feel the primary challenge with women and M[ental] H[ealth] Literacy lies with Stigma, particularly around birth.   I also think a large part lies in fear and the ‘just get over it’ mentality which permeates our culture.  Disappointment in how [the] birth went [and/or] traumatic birth can also factor into experiencing a PMD which leads to further stigma….”

“When you feel you have to suck it up and be “supermom,” things get worse.  [These are] definitely a few of the reasons women have trouble reaching out.   There are also (as with many) financial and insurance barriers to reaching out for help.”

A participant opined that “Stigma is the major problem for anyone with mental health issues.”

Another participant shared her experience.  “ The stigma expanded for me, as a Christian, with people saying crap like “Your faith is lacking” or “You need to pray more…. That sentence: “your faith is lacking,” is a key component in the downfall of my mental health and my marriage.   Lots of invalidation of feelings happens around birth and new motherhood.   If your experience is atypical, it’s confusing.”

Can you identify the challenges facing providers in dealing with moms?

Lauren answered, “Medicaid in most states only covers six to eight weeks post birth.   PPD typically occurs at two to three months.  One of the biggest [issues] – is not having a solid referral network set up in order to deal with moms who are struggling. Providers may also dismiss PMD symptoms as average “new mom” exhaustion. Providers need to dig deeper and don’t be afraid to ask questions if something feels off.”

One participant shared that, “There can be fear of CPS (Child Protective Services) being called, fear of job security, concerns for security clearance for military spouses.”

Another participant believes that,  “Friends/family members need to be targeted in education about PPMD …[They need to] not be afraid to ask questions and push new moms to get help.”

What are the warning signs? What do family and friends and new moms need to know?

Some of the signs are, “If a mom is not herself, sad and withdrawing, anxious, not wanting to be with [her] baby or is hyper-vigilant.”

Other signs include, “Psychosis [is the] most important to know – [if the mother is having] hallucinations, delusions, etc., [it is a] medical emergency, [and the mother should be taken to the] ER (Emergency Room) immediately.”

“Another important symptom is rage or anger.  [It is} Not listed [in] a lot of places, but MANY mothers experience it.  I think all parents worry about their children,  but ‘Intrusive thoughts’ are completely different and atrocious.  Intrusive thoughts are a component of Postpartum OCD, which is what I struggled with after my daughters.  My thoughts involved knives the first time around, suffocation, the second. [I] Became obsessive.

 “Yes, [the thoughts] can be very violent… and unprovoked.  With Postpartum OCD, though, a mother rarely acts on her intrusive thoughts.  She is immediately disgusted by them.  With Psychosis, however, these thoughts become logical and she is more likely to act on them.”

A participant offered a website address, “I also like Postpartum Progress Plain-Mama English’s list of symptoms, especially for new moms.  Plain-Mama English PPD/PPMD symptoms: http://t.co/RB0v8cF5.  PPD/PPMD can also feel like just not feeling anything. I felt numb a lot with mine.”

Lauren’s final thought was that, “It’s important for moms to know PPD/PMD is not something to be ashamed of…they’re not alone and there is help.”

Three Activists on Awareness Months

February is National Heart Health Month, April is National Autism Awareness Month and October is National Breast Cancer Awareness Month.  How do those who are affected feel about these awareness campaigns?

 

Health Communications, health literacy and social sciences tweetchat invited three health activists to begin to answer this question.

 

AnneMarie Ciccarella (@chemobrainfog) started the discussion.

Speaking for myself and likely many others, October “awareness” has strangled advances in breast cancer…October breast cancer awareness is the greatest success story causing the MOST damage.  When started, it was important. Stigma attached to br ca had to be lifted. The radical surgeries had to be addressed… That was accomplished fairly early on. Now, it’s over 20 years of little **MEANINGFUL** progress and NONE with metastatic patients.  Speaking for breast cancer, we are AWARE, we’ve BEEN aware and it’s time to switch gears. too rooted in status quo & now very hard

                A participant asked, “Why is metastatic segregated out?  Why is there no progress?”

[Those with metastatic disease ]…are the dirty little secret .they taint the ribbon of success.  We’ve accepted “early detection” as good enough and it’s not. No new treatment advances. I had same chemo cocktail in 2006 as mom in 1987.  There is too much resource going to awareness, not enough for actual research.

I also make sure people understand there is NO CURE for breast cancer, it’s not a good cancer and even if caught early, there is no guarantee.

 

Katrina Moody (@katrinamoody) added to the discussion from the perspective of a mother of 3 children with autism.

“We promote Autism, Epilepsy and General special needs-related awareness efforts at the Café  (my site).

     She was asked if she felt that having a blog was “action.”

 It’s not – which is why I started the Awareness in Action campaign – to focus on ways for people to help.  The problem is that traditional awareness drives tend to concentrate on “awareness” but not so much on acting to help. I think it’s the difference between passive sharing and actual engagement.  Too many campaigns with no goals mean that there are lots of fuzzy pictures and sayings, hardly any action.   We still have the fuzzy pictures *grins* but are focusing on goals, actions for those involved to take.  We need to focus on action – help people see where they can take action in small and large ways.

Katherine Leon, a survivor of Spontaneous Coronary Artery Dissection (SCAD) also described her experiences with Awareness Months.

 

I have done one Komen Walk, supporedt our school autism efforts, work many hours with WomenHeart: National Coalition for Women with Heart Disease.”  This year, in March, I took heart health awareness to kids at school. Every day is a good day to focus on heart health.

With SCAD, [we are] attempting to do awareness and action at same time. Social media [is]key. I did awareness 5K for fund raising and a conference .

 

AnneMarie and Katherine realized that there is a difference between Breast Cancer and SCAD.

Katherine stated , “Right now SCAD is very grassroots. [We don’t have  corporate sponsors], so [we are] networking [to find]  SCAD survivors worldwide. “

AnneMarie remarked that she is concerned about the involvement of corporate sponsors in Breast Cancer Awareness Month.   “The pink stuff is all about the companies…  I am determined to change the conversation with breast cancer.  She summed it up, “SCAD needs awareness! We didn’t really need pink bats last Sunday, did we?”

One participant thought that  awareness months help find those dynamic people out there that are willing to help.

 

Katrina agreed that Awareness Months help in finding people with a newly recognized passion – the key is helping them act!

 

Another participant noted that,

“These campaigns are getting so complex and expensive that I’m not sure how much they yield for what’s important to patients. I think once “awareness” gets to be a routine yearly thing for each entity, it loses value.  The question is why do we do it. Are we truly not aware enough about breast cancer or autism? I think about the two w/o “months.  And all of the repetition inactivates me!”

 

When asked about taking action each guest contributed ideas.

Katherine stated that we

“Need to tie awareness to research.  SCAD Research is nonprofit educating/promoting/fundraising all at once. I really love RESEARCH.  Bob Alico, director of SCAD Research, says action comes from getting people to think “this can happen to me, [or] to my loved one.”

 Katherine initiated research in SCAD over a number of years.  She  motivated the  Mayo Clinic to  conduct research on SCAD.  “WomenHeart Inspire is key to “finding” survivors. SCAD survivors find  [the SCAD] group thru WomenHeart/Inspire, apply to Mayo research, learn about SCAD http://t.co/1tCXWqBE,

 

It is “Really frustrating when SCAD donations go to the general fund of the A[merican] H[eart] A[ssociation].  When you donate the Key is getting money to researchers, or at least organization with SCAD-specific program.

AnneMarie said,

“Find out “Who’s raising the money, how much is being donated and what is the charity doing? I  began to speak out about not being “a brand” for someone’s bottom line.  [I} Got active with Army of Women and Dr Susan Love.  Another thing I am trying to do is get the word out to be wise “consumers” with our donor dollars.

 “I don’t think people realize they can donate directly to researchers. I guess that’s the way I’ve been TRYING to take action.  [You] Don’t need to give money to any organization to take a cut . For example: they do high risk/high reward research and you can SPECIFY where you want your money to go http://t.co/i0w1T3uE .  This link to Rock Research Labs lets you decide!

Every major hospital has research areas. If research is what calls you, I know of a number of places that do research.  Here’s a blog post I wrote about donating …. http://t.co/dM1O4iwD  Cold Spring Harbor Lab may have a similar program. They do high risk high reward research, too.”

A participant suggested that “if you’re donating for research, get name of people doing research. Call and ask where to donate.”

 

Another participant wondered, “Realistically, unless you have it, a family member has it, or a close friend, do people really care? Will awareness change that?”

 

Yet nother participant wondered if doing something for others always means money.

 

According to Katrina, “No. … encouragement and support don’t have to always include money – I don’t think – on a personal level. Find ways to help patients/families directly, more personal involvement”

AnneMarie volunteers in the hospital visiting surgical patients.   Don’t ask “what can I do” Just Do it! Drive people to treatment. Make casseroles  for families.

One of the participants stated that there needed to be an Awareness Month on health disparities.

“ I’ll scream for awareness about them til people are sick of hearing and do something .“If goal is to make life better for sufferers, find out who delivers direct services to pts/families .  I’d rather give money to a social work department fund for transportation, medications, etc.  Find out what keeps people from getting what they need. It’s usually something we dismiss or don’t realize  The smaller and more personal, the better. transportation, resources, ability to leave an ill family member long enough to get out of house.”

The final thought reiterated by all was an admonishment to all of us:

 

“Don’t underestimate your capacity to make a difference. ”