I've often heard the comment that children should come with user's manuals. And I don't think it's that far of a stretch to say that cancer should come with another form of user's manual - one that helps friends and loved ones know the right things to say - and what not to say.
At first glance, it doesn't seem like it should be that hard to avoid the stick-your-foot-in-your-mouth type of situation. But comments that can hurt are not always obvious.
For example, what's negative about saying "call me if you need anything." Doesn't that sound like a loving gesture?
Not necessarily. For someone diagnosed with cancer it can take a lot of effort to pick up the phone and ask for help. What many people with cancer have found more helpful is when friends offer to do something specific - for example, saying "can I come next Wednesday and wash your windows? I know how much you love to look out and watch the birds."
There are also comments that can feel downright hurtful to someone with cancer. For example, asking someone with lung cancer how long they smoked.
This isn't an owner's manual per se, but here are a few articles that may help you help a loved one with cancer.
In addition, a book that I have kept on my nightstand for years, may give you insights on how to best help and talk to someone with cancer. I am so grateful to my late friend Lori Hope for putting this together for us.
This morning as I was wondering around the Web, I was also thinking about how the world seems smaller and more intimate when others are coping with something like you are. I was thinking back to so many comments at the recent HOPE Summit in Washington DC, and the looks on people's faces when they heard they weren't alone in their journey - someone in the room, at their table, could understand, they had felt it, they got it. And in the midst of my meandering thoughts I just happened upon an entry - a song and pictures -- that stirred my heart. I knew I had to share it with all of you.
This story aired on the Classic Hits Station WJLT, provides a glimpse into the life of someone with lung cancer. It tells of a woman, Jennifer Glass, who was diagnosed with lung cancer. When she began treatment her husband started taking photos of her every day for a year. Together with her brother Lawrence, Jennifer wrote a song about that year. Do any of these phrases stand out to you?
"Why do the swallows still sing? They ought to know we're mournful and slow, but their cheerful voices ring."
"Life isn't fair; it comes out of nowhere, nowhere, nowhere..."
"Before I check out, I have one thing to shout, at the top of my lungs, I was here!"
But you have to hear it yourself.
Here is the song written by Jennifer and her brother Lawrence Glass, performed by Lawrence:
At the same time that many people are unable, or less able, to work, the cost of cancer creates a huge burden when it comes to paying bills. Less in - more out. Not the kind of equation that lends us comfort.
And, again, at the same time, there are major changes in health care. What should you know about the Affordable Care Act in 2014?
Thankfully, CancerCare, a not-for-profit agency supporting people with cancer, is providing a free telephone conference (or online webcast if you prefer) in which you can learn about changes that may affect you.
What will be included?
- Understanding the Affordable Care Act
- Major Provisions and Benefits in 2014
- Elimination of Pre-Existing Condition Denials
- The Appeals Process
- Information on Patient Assistance Programs
- And much more...
The Date: Tuesday May 20, 2014
The Time: 1:30-2:30 PM Eastern Time
The Cost: FREE
The Website Where You Can Register Online: Workshop: Everything You Want to Know About the Affordable Care Act in 2014
In the meantime if you are struggling with insurance issues and the cost of cancer treatment, here are a few articles that may help you navigate the medical system:
As I get ready to board my flight to Washington DC for the annual HOPE Summit, I'm again reminded of the importance of support from peers among lung cancer patients. I wish I could use one of those Star Trek thingies and send all of you back to previous summits. Only the most hardened person could avoid the spine tingling and wet eyes that arise from seeing people with lung cancer - many of whom have never met another lung cancer survivor - gather in the largest face-to-face community ever.
And if that wish of mine could come true, I'd beam you up (are you listening, Scotty?) first to be hugged in a mass hug that spontaneously occurred out of nowhere last year, like a miracle. I'm still wondering (Katie Brown, are you also wondering?) what happened. Was it some kind of time warp? I guess I don't need to know because I know the effect. It was like taking all of the kind words ever said to all of these people combined, and converting the words into something living and breathing.
As you can probably tell, it's an incredibly emotional experience to be part of the Summit. This morning I heard there will be around 150 people present, with 75% of these people having stage 4 lung cancer. Wow... I'm speechless.
I'd better finish my packing. I'll write from DC about a healing ceremony I have planned, cleverly disguised within a talk on what you can do to keep cancer at bay. As a quick hint: I'm loading my suitcase with shells the kids and I have collected over the years on Sanibel Island. More about that later.
For those of you who will have to wait until next year's HOPE Summit (please mark the date - and note that travel scholarships are making it possible for many if not most,) here are a few articles that talk about how to find Lung Cancer Support Groups - both in-person groups, and online groups.
When most people think about side effects from cancer treatment, they probably think first about chemotherapy. With more thought, recovery from surgery may come to mind. Perhaps last on the list of culprits would be radiation therapy. That was my thought anyway until I faced the "C" beast myself. Radiation therapy would head up my list of treatments that caused agony.
Thankfully, as with chemotherapy, many of the side effects of radiation therapy are preventable, but instead of a drug or drugs (anti-nausea medicines,) methods of lessening side effects are spoken of less often.
What can you do yourself during radiation therapy to reduce symptoms?
- Wear loose clothing over the region receiving radiation.
- Accept help from others to combat fatigue.
- Use gentle detergents to wash your clothes.
- Ask your radiation oncologist for lotions or creams if you are experiencing dry skin or a rash. Don't use over-the-counter lotions unless recommended by your doctor.
- Eat frequent small meals.
- Avoid using Band-Aids, ice packs, or heat packs unless instructed by your radiation oncologist.
Here are articles that cover both common side effects, as well further ideas on what you can do yourself (or help a loved one do) to minimize your symptoms during radiation therapy.
If you are caring for a loved one with lung cancer, I don't have to list the challenges. I don't need to point out the fears. I don't need to mention that at times - perhaps often - you have foregone regular meals and a good night's sleep. As one woman with lung cancer put it, "I think it's harder on my husband than it is on me."
I know better than to post a cliché reminder to take care of yourself. If I did, I would be lucky that this post is in cyberspace so I wouldn't get egg on my face. Instead I'll share a few tips that loved ones of people with lung cancer have shared with me.
Get some exercise each day. I know better than to suggest you drive to the gym daily. At Rochester Methodist hospital in Rochester, Minnesota, part of the Mayo clinic, I asked a nurse to tell me the distance of the corridor. It turned out that 20 laps was equal to a mile. There are other creative ways to get exercise. Perhaps making yourself walk up and down stairs while you update loved ones on your cellular phone.
Pamper yourself when you can. Put yourself in your loved one's shoes. How would you encourage her to pamper herself if roles were reversed?
Here are some more tips:
And just as people with cancer long to hear from others who have taken the same journey, talking with other caregivers can sometimes lend a load of support. One option is the Caregiver and Loved Ones Support Group, a telephone support group offered by CancerCare.
A favorite of mine is a book written by a wonderful woman who has cared for her husband with lung cancer through the good and bad. Her book isn't watered down, and she doesn't make it sound maddeningly easy. If you want to feel less alone as a lung cancer caregiver, it's worth your while to check this out.
I've often been asked if it makes a difference which hospital a person chooses for cancer treatment. At first glance it may seem it shouldn't matter. Don't all medical professionals receive the same training?
And what about teaching hospitals? I've heard more than one person claim that they don't want to be used as a "case" for a medical student to "learn from."
When it comes to lung cancer surgery, a few studies have evaluated these questions.
First is a study dear to my heart. What about teaching hospitals? I remember a few questioning looks in training knowing that I appeared to be barely out of high school - if that. I also remember comments and questions directed to both myself and other medical residents, questions such as "When do I get to see a real doctor?"
A study looking at 45,000 patients between 1998 and 2004 found that patients who had lung cancer surgery at a teaching hospital - one in which medical students and residents participate in care - had a 17% lower risk of dying.
Why would that be? I could speculate that 2 (or 3 or 7) sets of eyes are better than 1. But whatever the reason, this may be some consolation for those who tirelessly repeat their story - first to a medical student, then to an intern, then to a senior resident, and again to an attending physician.
Now, what about volume? In another study patients had fewer complications when lung cancer surgery - specifically video assisted thoracoscopic surgery (VATS) - was performed at a hospital that performed a greater number of these surgeries.
On another note, no matter the volume of patients or whether or not you are treated at a teaching hospital, the hours your doctor puts in can make a difference. Yet another study found that patients had a greater number of complications when they were cared for by physicians who put in longer days.
There are several other considerations when choosing a cancer center. Check out these thoughts no matter where you are in your journey:
Mequid, R. et al. Are surgical outcomes for lung cancer resections improved at teaching hospitals?. Annals of Thoracic Surgery. 2008. 85(3):1015-24.
Park, H. et al. Impact of hospital volume of thoracoscopic lobectomy on primary lung cancer outcomes. Annals of Thoracic Surgery. 2012. 93(2):372-9.
Thomas, M. et al. Does surgeon workload per day affect outcomes after pulmonary lobectomies?. Annals of Thoracic Surgery. 2012. 94(3):966-72.
Can't you just hear it?
Upon learning that someone has lung cancer, what are the first thoughts and words in the average American's mind?
Questions about smoking status? If you said yes, you're probably correct. And given what we know today, smoking may very well have something to do with it.
That said, why do we feel we need to evaluate causation - especially when that evaluation can be painful to the one we've just learned has cancer? We aren't so cruel to those who have breast cancer. We don't first inquire about the number of years a woman with breast cancer nursed her children, and then offer our support. But talking about the stigma of lung cancer is a different issue than the aim of this blog post. Instead, it's important to note that while everyone with lung cancer deserves our care and support regardless of smoking history, there are many people with lung cancer who have never smoked.
Let's start with women. A full 20% of women who develop lung cancer have never smoked. One in five. And adding together never smokers and former smokers, we learn that the majority of women diagnosed with lung cancer today aren't current smokers. Looking at statistics another way, the number of never smoking women who die from lung cancer each year is fairly close to the number of women (smokers or non-smokers) who die from breast cancer each year.
I'm sure many people quickly wonder about second-hand smoke. Yes, secondhand smoke causes around 3,000 lung cancer deaths per year in the United States. But that only accounts for a minority of non-smoking women who develop lung cancer. Causes such as radon exposure are important, as are causes we are likely unaware of.
Unaware of... Yes. At the same time that lung cancer deaths in men are decreasing, and those in women have leveled off, a form of lung cancer often found in young, female non-smokers, bronchioloalveolar carcinoma (BAC), is actually increasing.
Why do I share these statistics?
The first reason I already alluded to. When you run into someone with lung cancer, try to offer your unconditional caring and support rather than asking about smoking status. Yes, smoking status is important, but do we really need more evidence that smoking causes lung cancer - and in this way which can be painful for someone recently diagnosed?
The second reason is funding. The five-year survival rate for breast cancer is 89%. For lung cancer it hovers around 16%. For every 24 federal dollars spent to combat breast cancer, only a single dollar bill is spent on lung cancer research.
I've said it before, but think of it this way. We keep hearing tear-jerking propaganda about our mothers, sisters, daughters, and friends with breast cancer. But we have a lot more mothers, sisters, daughters, and friends left to cope with lung cancer with less support. Don't take me wrong. I have nothing against breast cancer research. I'm alive because of it. But it's time we stand up - especially those of us in pink who have benefitted so greatly - and take notice of the lack of funding and deficit of love and caring for those with lung cancer.
I've often written about the pro's and con's of clinical trials. On the positive side, the only way we make progress in treating cancer is through evaluating medications and other treatments in clinical trials. On the other hand, clinical trials aren't for everyone.
But whether an inspiring story comes from a clinical trial or something else, it is worthy of sharing.
A woman who I am incredibly honored to call friend is still on this planet due to a clinical trial. One that was made available for certain people with non-small cell lung cancer; those carrying a mutation known as an EML4-ALK gene rearrangement.
It's helpful to take a quick aside at this point. There are several "levels" of clinical trials. Phase 1 trials are the first test of a drug or treatment on humans. After a drug is tested in test tubes and perhaps animals, a small number of people are recruited to use the drug in order to assess safety, and possibly dosage. Phase 2 clinical trials involve more people, and look at efficacy as well as safety. Phase 3 trials ask the important question, "Is this treatment better than other treatments we have?" before the treatment is FDA approved.
The treatment that my friend, Linnea Duff, was given, was being evaluated in a phase 1 trial.
In 2007 a mutation present in some people with non-small cell lung cancer was discovered. Scientists then found a compound that could address this mutation, and temporarily halt the growth of ALK positive lung cancer.
Linnea Duff agreed to take part in this study, hoping that the results would help others in the future. As a young woman, and a non-smoker, with stage 4 non-small cell lung cancer, there weren't a lot of good options. But in addition to allowing scientists to use her body to help others, the drug in question bought her time. In fact, in 2011 the drug crizotinib was approved by the FDA.
This is exciting to say the least, but the downside is that virtually everyone with ALK positive lung cancer that responds to crizotinib, must inevitably face resistance over time. In other words, the drug stops working.
But keeping with progress, Linnea Duff just happened to develop resistance as a new drug (LDK 378) was being tested that could treat people with ALK positive lung cancer who became resistant to crizotinib.
To read more about Linnea's story, check out this article: My Next Good Chance published in the Stanford Medicine publication SCOPE.
Unfortunately only 5% of people with non-small cell lung cancer harbor the ALK mutation, but other mutations may be present signifying a likelhood of responding to another currently available treatment.
To learn more about ALK positive lung cancer and how to find medical studies that may be right for you, check out these articles:
And for those of you who wish to read Linnea's story, check out her wonderful blog:
We are learning more and more about chronic inflammation, and how it may lead to the development of cancer. This can be seen directly in some cancers in which cancer develops from local inflammation. Examples include HPV leading to cervical cancer and chronic esophageal reflux leading to esophageal cancer. But inflammation in one region of the body may also lead to the development of cancer in another region of the body.
There is now evidence that periodontal disease is associated with cancers of the lung, kidney, pancreas, head and neck, as well as leukemia and lymphomas.
Why? How could inflammation in the mouth lead to cancer at distant sites, such as lung cancer or kidney cancer?
Periodontal disease creates inflammation that doesn't stop in the mouth; instead the inflammation results in an increased concentration of inflammatory markers throughout the body. An increased concentration of these inflammatory markers is in turn linked with an increased risk of several types of cancer.
What can you do to lower your risk, or what about if you already have cancer?
- Make regular appointments with your dentist.
- Brush and floss regularly.
- Before beginning chemotherapy it's a good time to talk to your dentist; due to a low white count or platelet count your oncologist may recommend avoiding flossing and using a gentle toothbrush during treatment.
- Learn more about causes and prevention of periodontitis in the article below.
Check out some other effects that gum disease may have on the body: