Most of us are familiar with clinical trials as a method to study new drugs and procedures, and many of us have heard references to these studies using words such as "human guinea pig."
While these myths linger on, it's important to keep in mind that the only way that a new drug or procedure becomes available for people with cancer - the only way advances in treatment are made - is through the use of clinical trials. That said, only 5% of people with cancer are involved in a clinical trial as part of their cancer treatment.
There are many reasons. But one of these is that there are many myths that circulate the airwaves about these studies. For example:
- People may be afraid that if the investigational drug or treatment is causing side effects that are intolerable, that they won't be able to leave the study. Fact: It is your right to stop your involvement in a clinical trial at any time.
- Another concern is that you will receive a placebo. Fact: In medical studies for cancer a placebo is rarely used - and then only if a treatment that could help more than a placebo is not available.
- Yet another general thought is that if a clinical trial that may give you an opportunity to use a treatment that appears initially to be superior to standard treatment, your oncologist will tell you. Fact: Physicians are human. With the vast amount of information regarding cancer treatments, and the explosion in new information as a result of our ability to evaluate specific genetic abnormalities in cancer cells, it's impossible for any one person to be aware of every clinical trial available for every form of cancer worldwide. While your oncologist may very well suggest a clinical trial, it's now possible to learn about clinical trials online, and matching services are even available in which a nurse navigator can help you determine if there are any clinical trials that may be a match for your particular situation.
There are several other myths about clinical trials. What is fact, and what is fiction? Check out this article:
Photo: National Cancer Institute, Daniel Sone (photographer)
In years past it was usually doctors alone that looked at pathology reports after a biopsy or surgery. But increasingly people are requesting copies of their medical records or are able to read these through a patient portal provided by their cancer center.
If you look at these reports it can be very confusing and the language foreign. Not a good situation when your doctor may recommend treatment based on the results of this report. Being an empowered patient by understanding a few terms may help you play a larger role in your health care.
When you see these documents, they first provide your identifying information as well as symptoms and possibly a tentative diagnosis. This is followed by what your tumor looks like visually. Under your report this may be written as "gross evaluation." This doesn't mean that your tumor looks bad, it is simply medical lingo for the naked eye view of a tissue sample.
Then it can get even more confusing. Don't be alarmed if it sounds like the pathologist isn't sure of what your sample or tumor looks like under a microscope. It's common to see notations such as "the appearance is that of a non-small cell lung cancer with characteristics of small cell lung cancer" or other such "uncertainties." Cancers all are different, and the appearance as seen under the microscope isn't always "black and white."
Further terms such as tumor grade, tumor margins, well-differentiated and poorly differentiated, are also confusing. Check out this article for help in making your pathology report a little more readable.
Once considered "alternative" treatments, many cancer centers are now using complementary therapies as a regular part of cancer treatment. This integrative approach - combining conventional treatments such as chemotherapy and surgery with complementary treatments such as acupuncture - is designed to treat the whole person; body, mind and spirit.
But since this is a fairly new approach, researchers were wondering how older patients with lung cancer and colon cancer felt about the use of complementary therapies.
Through interviewing patients at a hospital in Ireland, they learned several things:
- Older patients believe these services should be promoted more effectively
- Older patients felt these treatments should be more accessible
While desiring more information these patients had a few concerns:
- That there is a lack of good written information about complementary treatments (and as such there is uncertainty about possible benefits leading to fewer people receiving them)
- Some patients were concerned that if they use complementary therapies and let their physician know, that it will harm their relationship
This leads to some good instructions for doctors who treat cancer patients: provide better information to patients about complementary therapies and become educated themselves about these treatments.
If you are a cancer patient, here are some articles that talk about complementary therapies and possible benefits they may have for people with cancer:
- Acupuncture for Cancer Patients
- Meditation for People with Cancer
- Yoga for Cancer Patients
- Qigong for Cancer Patients
- Healing Touch for Cancer Patients
- Art Therapy for People with Cancer
- Music Therapy
- Massage Therapy for Cancer Patients
Roulston, A., Wilkinson, P., Haynes, T., and J. Campbell. Complementary therapy: perceptions of older people with lung or colorectal cancer. International Journal of Palliative Nursing. 2013. 19(7):333-9.
Unlike some cancers - for example mammograms for breast cancer - we don't have a screening tool for everyone to look for lung cancer (see criteria below.) For most people who develop lung cancer we have to rely on an awareness of symptoms.
But is that working? No. 40% of people already have stage 4 lung cancer when they are diagnosed, meaning it has spread to other regions of the body, and hence, isn't curable.
So what are people missing? The Global Lung Cancer Coalition recently supported research to answer that question. What symptoms are people aware of and what are they not?
Breathlessness and short-term cough were fairly well known as possible symptoms.
What are people missing? Here are 2 biggies :
- A Persistent Cough - meaning one that lasts for at least 2 weeks
- Coughing Up Blood - even a tiny amount of blood on the tissue after a cough warrants a doctor's visit
Strikingly they noted that almost a 4th of people were unaware of any of the symptoms of lung cancer. Admittedly, ages interviewed were as low as 14. My kids have certainly been aware since they were toddlers as I preach on my soapbox about support for lung cancer. But I know kids in "normal homes" don't likely have a mom on a soapbox.
As I promised to mention above, CT screening for lung cancer can lower deaths by 20% when done on certain people. This includes:
- People between the ages of 55 and 74
- Those who have smoked at least 30 pack-years
- Those who continue to smoke, or quit smoking in the last 15 years.
It's important to note that everyone is different. Your doctor may recommend CT screening for other reasons as well.
What can you do? Familiarize yourself with possible symptoms. Here are a few great articles to get you started:
- Early Symptoms of Lung Cancer
- Symptoms of Lung Cancer in Non-Smokers
- Symptoms of Lung Cancer in Men
- Symptoms of Lung Cancer in Women
With the explosion in new research on the form of non-small cell lung cancer (NSCLC) called lung adenocarcinoma, those of you with squamous cell carcinoma, another form of NSCLC, may be feeling a little left out - like that feeling you had in grade school as teams drew sides and you were the last one left standing.
But that doesn't mean that nothing is new in the treatment realm for squamous cell lung cancer, and I'm thrilled that GRACE plus LUNGevity are hosting a Webinar to discuss this important type of lung cancer.
Led by Dr. David Spigel from the Sarah Cannon Cancer Center in Nashville, TN, this hour long session will address this type of lung cancer which affects 20 to 25% of people with NSCLC. Best of all you can listen at home, and it's free.
Some of the topics to be addressed include:
- How does squamous cell lung cancer differ in terms of biology and behavior?
- What are some of the new treatment strategies for this type of lung cancer?
The title: - Squamous Cell NSCLC: Growing Understanding and Expanding Treatment Options
The date: - Tuesday, November 12, 2013
The time: - 2 pm - 3 pm (Eastern standard time)
The cost: - FREE!
How to register: - Go to Webinar registration
I know it's kind of off the topic, but you may have been hearing the news about testing for hepatitis C.
The news isn't really new - what's new is that the public is finally being informed. For years physicians have known that hepatitis C is the leading cause of liver cancer - and the leading cause of liver transplants.
So why would I bring it up here for people with lung cancer and other cancers?
There are a few reasons. A history of hepatitis C in someone with lung cancer could compromise liver function and therefore make treatment with some drugs not a good idea. But mostly I bring it up to raise awareness of the risks and who should be tested.
Knowing how significant the problem of hepatitis C is, who is at risk?
Risk factors include:
- Having had a blood transfusion (before testing was available)
- Using IV street drugs
- Long term dialysis
- Acupuncture or tattoos under unsterile conditions
- Sharing items with someone with hepatitis C such as toothbrushes or razors
- Unprotected sex with someone with heptatitis C
If you meet any of these criteria or know of anyone who does, please spread the word. Treatment is available for those who are carriers of the hepatitis C virus that can reduce the likelihood of liver cancer, and for those close to them, reduce the risk of developing the disease themselves.
The last trick or treat goblins have left, the lights are off, and as the clock strikes midnight.... Lung Cancer Awareness Month begins!
Perhaps you have a busy month of awareness activities planned. Perhaps you didn't know lung cancer awareness month even exists. Or just perhaps you are wondering what to do and where to be but don't know how to begin. I know I'll miss some events - but if you let me know I'll quickly add them. But here's a start:
LUNGevity events: - The not-for-profit organization LUNGevity hosts a wide variety of events, ranging from marathons to cabaret concerts and more. Check out their calendar:
The National Lung Cancer Partnership events: - This not-for-profit groups has some fun challenges. In the first week you can take action by ordering bookmarks. The second you can share those bookmarks in places from libraries to venues of your choice. The third week you can enter a contest, and the fourth, spread the word on facebook. Check it out here:
The Lung Cancer Alliance likewise has a plethora of events. From shining a light, to contacting congress, to hosting an event, check it out here:
Again I apologize for just tracing the surface, but add a comment here about your event or email me so I can add to the list. But don't worry. I'll try to cover as many events as possible throughout the month. Happy Think White (or Pearl) Month to all!
When most people think of cancer they think of problems due to the growth and spread of the cancer as well as side effects of treatments. Yet some lesser talked about cancer complications can take a big toll - or even cause death. Since some of these symptoms can mimic those of treatment side effects, it's important to be aware of them.
What are some of these complications?
Blood clots affect up to 15% of people with cancer and are commonly associated with bedrest, prolonged travel, or surgery.
Hypercalcemia - that is, an elevated calcium level in the blood occurs in 10 to 15% of people with cancer, and cause symptoms ranging from nausea to coma and death.
Cachexia - or wasting syndrome. Cachexia is best understood as the kind of weight loss and muscle wasting that occurs even if someone is taking in enough calories. It's felt to be the cause of roughly 20% of cancer deaths.
A low white blood cell count can result in serious or fatal infections.
That's just a beginning and a very incomplete list, but the important take away is to ask your oncologist about any potential emergencies you should be concerned about, and what symptoms to watch for. It's sad enough when people pass away due to their cancer, but heartbreaking when death occurs due to complications that are potentially very treatable or preventable in the first place.
Over the years I've had many people ask me an excellent question. Why and how do cancer cells spread? Why do normal lung cells stay put in the lungs, but lung cancer cells escape and can spread just about anywhere?
This question is of utmost importance. If cancer cells stayed put, a tumor may grow large. But the spread of cancers (metastasis) is responsible for 90% of cancer deaths.
A simple way to describe this is that normal cells are sticky. They make chemicals that cause them to stick together. Cancer cells fail to make these chemicals and are free to wonder.
There are other reasons as well. Cancer cells aren't very friendly. They don't listen to chemical messages sent by neighboring normal cells that act like fences. Instead they extend past their boundaries.
As we learn more about how cancer cells spread, the potential for developing ways of stopping the spread of cancer is exciting.
If you are interested in learning more about how cancer spreads, as well as what research is being done to stop cancer cells in their tracks, check out this article.
I've written a lot about radon over the years, but the last few days have made the importance jump to center stage for me.
First, a dear friend found an elevated level in his home, and the next day we found an elevated level in a home we are buying. In talking with others, I again realized how far we could go and how many lung cancer deaths we could prevent if we just gave radon a little more publicity.
Why? This is the last day of breast cancer awareness month. Most people are familiar with mammograms and breast exams. Breast cancer will kill an estimated 39,000 people in the United States in 2013. Radon induced lung cancer will kill an estimated 21,000. But do we hear about radon half as much as we do about breast cancer? I don't think so.
If you are wondering what radon is, it's an odorless colorless gas released by the natural decay of uranium in the soil. It's less common in homes (like our current home) built on sand and more common in homes built on granite. But what's really important to note is that it can occur anywhere. It's been found in all 50 states, and your next door neighbor could have a low level and you could have a high level.
Is it common? Yes. Roughly 1 in 15 homes in the U.S. have an elevated level defined as a level over 4 (in Europe and elevated level is over 2.)
To make the risk of radon easier to understand, the EPA has put together an excellent site. It shows how radon kills more people than ovarian cancer. It kills more people than thyroid cancer. It kills more people than esophageal cancer. If you are a non-smoker and have a level of 4 (the cut-off in the U.S.) your risk is the same as that of dying in a car crash.
How hard is it to check for radon? There are short term tests and long term tests, but a short term test at the hardware store costs less than $20.
What if your level is high? Unfortunately opening windows won't help, but radon mitigation can resolve almost all radon problems. Estimated costs are between $600 and $1500, but if put in perspective it seems like a small cost. Would you spend that amount of money to decrease your risk of breast cancer in half? I know I would have, having lived through breast cancer.
Having spoken about cancer prevention for many years, testing for radon may be one of the simplest and cheapest ways to lower your overall risk of dying from cancer. If you haven't checked your home, head to the hardware store (or wait till tomorrow if you're out trick or treating.)