Hospice Enrollment and Lung Cancer Survival

Simply hearing the word "hospice" conjures about anxious emotions for many people. And it's not just people living with cancer and their loved ones. Physicians are often hesitant to bring up hospice care as well. For both patients and physicians, talking about hospice can be associated with a "feeling of giving up." At least from a physical/survival point of view.
But a new study suggests a different story. Older people with advanced lung cancer who are referred to hospice may not only live as long as those not enrolled in hospice, but some may live longer.
In this study, researchers looked at nearly 8,000 people over the age of 65 who were diagnosed with advanced lung cancer. Then they separated the group into people who were referred to hospice, and those who did not receive hospice care. The hospice group not only lived as long as the other group, but their overall survival rates were slightly better 1 and 2 years following diagnosis.
As far as the length of hospice care - whether a few days or several months - it didn't matter when it came to survival.
This study seemed very important to me for two reasons. One, of course, is that patients and physicians alike associate hospice with a shortened life. There seems to be an assumption that aggressive end-of-life care without hospice might add to survival. Not so it appears.
But the other reason that made this study jump out at me, is because I have watched so many people benefit from only a few days of hospice care. I don't know how many people have made the comment to me "why didn't we do this sooner?" In fact the average amount of time spent in hospice is very short relative to the required "expect less than 6 months" scenario.
The conclusion of the study was that enrollment in hospice didn't lower the chances for survival for older patients with advanced lung cancer. But what happens if you or a loved one are enrolled in hospice and live longer than 6 months? Nothing. If expected survival is still less than 6 months, hospice can be renewed. If not, well, miracles sometimes happen.
It is important here to quickly note the difference between the definition of "palliative care" and hospice. Many cancer centers are now offering palliative care consults early on after a diagnosis of cancer. Palliative care doesn't require that someone be "terminal," and unlike hospice, is often combined with treatments such as chemotherapy and radiation. And in that setting, lung cancer survival was better as well.

Lung Cancer Uncommon Questions

What did you always want to know about lung cancer but were afraid to ask? What are those questions you wrote on your list that you with took to see your oncologist, but crossed off as less important? Or maybe you just didn't consider them worthy of the time.
It's time someone wrote up a list of uncommon questions with a list of answers/explanations - for those that have answers anyway - in one spot.
I know those questions exist. In my own cancer treatment and trying to be a savvy patient, I bring question lists. But most of the time - yesterday was one - I leave some to be asked later or not at all. Though of interest to me, they don't seem to be worthy of the time or energy. And that is at the Mayo clinic where every appointment I have had has exceeded the length of every appointment in my life prior to going to Mayo - with doctors that - in my experiences anyway - sit still until they are sure every question has been answered.
As a start, I've been playing waiting room spy. (Okay, you may picture me in a trench coat looking subtle or invisible, but that's hardly the case...) I look like a pretty normal cancer patient as I remove clumps of hair falling out, "leaving behind" a part of me in the waiting room.
Waiting room spy, because I want to hear the questions others have as they begin this journey, and wondering what questions they are asking that will not get asked after they finally enter a room with a doctor. Just yesterday I heard a family trying to understand why the doctors didn't know where the father's cancer had started (I was granted permission to share this). "It's 2011, shouldn't that be easy? They think it started in his lungs (a primary lung cancer), why can't they know for sure? Somebody said something about undifferentiated. What does that have to do with it?" I believe it was two daughters who continued the discussion. One wanted to ask more questions. The father said no. He was tired and just wanted to hear what treatments might help and what the side effects were.
What I'm driving at is not dividing families. This father needed his family to respectfully honor his wish. But the daughter was yearning for an answer. Certainly she could ask her father's permission to talk to his oncologist at a later time or even on the phone (with the appropriate forms completed of course). But I also wish there was a place people could ask these questions and put together answers myself that may help them and many more with the same question.
Phew... That was a long-winded way to get to my point. What are your uncommon questions about lung cancer? What questions do you want to ask, but feel embarrassed to ask - either because you don't want to waste the doctor's time - or - because they are embarrassing?
Please share them with me so I can write some FAQ's to help.
You can make a comment below, but that defeats the purpose if you have a private or embarrassing question, or one that just feels too stupid (there are NO stupid questions in oncology) to write. If that is the case please email me directly. If you would like me to respond, please let me know. Otherwise your privacy is important and I will write about the question in a way that is generic and not recognizable as yours.

Exercise Benefits Lung Cancer Patients During Chemotherapy

We know exercise is good for us. But what about exercise during chemotherapy for people with advanced lung cancer? It's an important question - having experienced chemo myself. Sometimes exercise is the last thing we want to do.
Researchers decided to address that question by using a hospital-based group training program for people with inoperable stage 3 and stage 4 lung cancer who were undergoing chemotherapy.
Among those who participated in the program, not only did muscle strength improve, but these people also experienced a significant improvement in emotional well-being.
I've had many people remark to me that exercise helped them cope during chemo - even though they had to push themselves. It's nice to see that, at least in this small study, what I've heard anecdotally seems to be supported by research.
Research in the past has shown that exercise may go beyond an improvement in emotional well-being and actually increase survival for some people with lung cancer. And, thankfully, it didn't require marathon training, but simple activities that may be tolerable even amidst the symptoms of cancer and its treatments.

Funny Cancer Blessings

I have to begin this musing by admitting that cancer is a serious, scary disease. I know. I have it. But sometimes a little dose of humor can be just what the doctor ordered. Inspired by my 13-year-old son, I asked a few people around me with cancer about their own experiences with funny cancer blessings. Here are a few thoughts.
(I also know that everyone with cancer is at a different place and a different time. Please pass over this entry if you are at that place where you need to mourn and cry and just don't want to find cancer humorous. Again I know. I've been there.)

Top 10 Funny Cancer Blessings

10. You can get away with things you otherwise wouldn't.
My 13-year-old took the liberty of adding "Dr. Seuss" under "consulting doctors" on the care board in my room during a recent hospitalization. Why? He decided my chemo hair enlisted me as a member of the "Who's" in "Whoville." The doctors and nurses found this amusing and considered adding this to the care boards for other patients as well.
9. It's good for the environment -- it can save on daisies.
Women (and men) with cancer don't need to play the petal game: "He loves me, he loves me not, he loves me, he loves me not..." How our loved ones react to our diagnosis tells us all.
8. It can save on air conditioning.
How many people can cool down by simply saying, "I'll take off my hair now?"
7. You don't have to do windows - or anything for that matter.
Nobody expects you to be a type A personality anymore, so you can practice becoming a type B. Or maybe a type C?
6. You can join in the conversation.
Remember those parties you went to that made you cringe? The ones in which people started sharing scars and medical horror stories? Now instead of excusing yourself early in the evening, you can join in.
5. Teenagers can hear you.
Remember those days of asking at least 3 times, and saying "what part of 'no' don't you understand?" Even with their ipod attached and cell phone on, they listen when you have cancer.
4. You can make bells ring and lights flash at the airport.
Whether it's a port or a pic or other devices implanted in our bodies, the airport scanners don't understand. Instead we can embarrass the people who have to speak for the scanners.
3. Your medical insurance will pay for a tattoo.
If you are having radiation therapy, your radiation oncologist will give you a tattoo to mark the spot. So if you've been waiting all your life...
2. No more bad hair days.
Without hair, you can face a nights sleep, a drizzle, or a windy day without worry.
1. People will thank you for your humor.
On a more serious note, and having lived on both sides of cancer, people are often afraid to laugh and be playful with someone facing cancer. When we initiate humor - even wacky humor - we give them permission to join in. That's a gift we can give... even as we ask someone else to do the windows.
If you have any cancer blessings to share - funny or not - I'd love to hear from you!

The Stigma of Lung Cancer

Being diagnosed with lung cancer carries a certain stigma.
”How long did you smoke?” “I didn’t know you were a closet smoker.” “Too bad he didn’t quit smoking sooner.” Unlike the unconditional support given to those with other forms of cancer, people with lung cancer often feel singled out, like somehow they “deserve” to have cancer. Where does this stigma come from?

Public Perception of a Diagnosis of Lung Cancer

There is a feeling among the general public, that lung cancer is a self-inflicted disease. Smoking is responsible for 80 to 90% of lung cancers, but let’s put this in perspective: Twice as many women die from lung cancer in the United States each year as die from breast cancer, and 20% of these women have never touched a cigarette. Even for those who smoke and develop lung cancer, why do we attach such a stigma to them? Many cancers, and other chronic diseases, are related to lifestyle choices. We don’t seem to judge as harshly those who overeat, are sedentary or sunbathe extensively.

Physicians’ Attitude Regarding Lung Cancer

Physicians are people too, and the bias we see among the public is present in the doctor's office as well. Joan Schiller, MD, the President and Founder of National Lung Cancer Partnership, and a physician who has done a lot of research on the stigma of lung cancer, surveyed primary care physicians in Wisconsin with some saddening results. Though the physicians stated that the type of cancer was not a factor in their referral decisions, results showed that:

• When hypothetical patients were presented as having advanced cancer, physicians were less likely to refer lung cancer patients to an oncologist than they were to refer breast cancer patients.
• More physicians were aware that chemotherapy improves survival in advanced breast cancer than with advanced lung cancer.
• Breast cancer patients were more likely to be referred for further therapy, whereas lung cancer patients were often referred only for symptom control.

Lung Cancer Patient’s Perceived Stigma

Those who are diagnosed with lung cancer experience more embarrassment than those with prostate or breast cancer, and individuals tend to feel stigmatized whether they smoked or not. Some people have even concealed their diagnosis leading to negative financial consequences and lack of social support.

Funding for Lung Cancer Research vs Other Cancers

Sadly, even though lung cancer kills more people than breast cancer, prostate cancer and colon cancer combined, federal funding lags behind. Funding from the private sector also pales in comparison to fund-raising efforts for some other cancers. Clearly, lung cancer carries a stigma that extends from the government down to the individual. That said, we won’t move forward by pointing the finger and blaming ourselves, physicians, the public and the government. Each of us can make a difference by supporting those with lung cancer as we would support someone with any other form of cancer. Whether you are a lung cancer survivor, the loved one of someone living with lung cancer or a professional working with those with lung cancer, we need to raise awareness. Those living with lung cancer need and deserve our care and support, not an evaluation of the possible causes.