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December 19 #LCSM Chat: “Lung Cancer Screening – The Good, The Bad and the Indolent”

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[This is a reblog of a post on the #LCSM Chat website, shared with permission (it’s really easy to give myself permission to reblog something I wrote).]

The next #LCSM Chat will occur on December 19 at 5 PM Pacific Time (8 PM ET), and will be moderated by Janet Freeman-Daily. The theme will be “Lung Cancer Screening – The Good, The Bad and the Indolent.”

Discussion topics for #LCSM Chat:

T1: For patients who don’t fit “older heavy smoker” profile, should doctor order low-dose CT screening if patient requests it? #LCSM

T2: Some lung nodules are not cancer. When are you comfortable just watching a lung nodule instead of treating it? #LCSM

T3: A new blood test detects w/ 90% accuracy if lung nodule IS NOT cancer (but can’t tell for sure if it IS). Is this useful when combined with low-dose CT screening? #LCSM

Background

The National Lung Screening Trial found 15% to 20% fewer lung cancer deaths among participants who were screened for lung cancer by low-dose helical CT scans compared to those screened by chest x-ray. Participants included 53,454 current or former heavy smokers ages 55 to 74 between 2002 and 2004.

From this statistic, it would seem obvious that lung cancer screening for older patients who are or were heavy smokers would be a slam dunk. However, the screening does raise some concerns. For instance, some studies show 20% to 60% of screening CT scans of current and former smokers show abnormalities, most of which are not lung cancer. Lung biopsies and surgery do carry risk, yet the uncertainty over having lung nodules might cause considerable anxiety for the patient. How do we determine whether or not to biopsy such abnormalities?

A biopsy of a nodule found by screening could determine if the nodule is cancerous. However, according to the NCI, studies indicate some small lung cancer tumors are indolent – that is, they so slow growing that they never become life threatening. This situation, called overdiagnosis, might cause some patients to be subjected to challenging and potentially damaging lung cancer treatment when they have no symptoms and an extremely low risk of death from lung cancer. Are the risks associated with biopsies and cancer treatment ALWAYS less than the risk of lung cancer death?

Another issue: this new CT screening is recommended only for patient who fit a specific profile (generally, current or former heavy smokers ages 55 to 79).Never smokers and some smokers and former smokers don’t fit this profile, but might have other risk factors for lung cancer. If a patient who doesn’t fit the recommended profile requests a low-dose helical CT scan, and agrees to pay for it, should their doctor agree to order the scan?

A new blood test announced in October (by Bioinformatics for Integrated Diagnostics and the Institute for Systems Biology) can determine if a detected lung nodule is NOT cancerous with 90% accuracy. However, it can’t reliably detect whether a nodule IS lung cancer. Used in combination with CT screening, this blood test might help determine whether a lung nodule warrants a biopsy. Do doctors and patients feel comfortable using a blood test that can say if the patient does NOT have lung cancer, but can’t say if the patient DOES have it?

For those who wish to do more reading

The National Lung Screening Trial: Results are in

Overdiagnosis in Low-Dose Computed Tomography Screening for Lung Cancer

Harmless lung cancer? Many tumors not lethal

Can Lung Cancer be Clinically Insignificant? The Case for “Overdiagnosis” and “Overtreatment” of Lung Cancer

Blood Test Distinguishes Early Lung Cancer From Benign Nodules

A blood-based proteomic classifier for the molecular characterization of pulmonary nodules.

Blood Test to Define Probability of Lung Nodule Being Cancer? Could Help, but Potential to Backfire

National Lung Screening Trial: Questions and Answers

Prevention vs Risk Reduction Vs. Screening (a reblog)

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Breast cancer survivor  @coffeemommy (Stacey Tinianov) gave me permission to reblog the  article below, which she wrote following the #abcDrBchat tweetchat about lung cancer Tuesday December 10 2013.  She’s written an excellent clarification of the differences between cancer prevention, risk reduction, and screening.

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Prevention vs. Risk Reduction vs. Screening
by coffeemommy

After a series of particularly frustrating exchanges, I have decided it will take more than 140 characters to not only explain the distinction between prevention, risk reduction and screening in ALL cancers but to also explain why a distinction is so critical.

Prevention: definition 1. To keep from happening

Reality check:

  • The only way to prevent breast cancer is to not have any breast tissue.
  • The only way to prevent lung cancer is to not have lungs.
  • The only way to prevent skin cancer is to not have that
    useful covering over your flesh and bones.

You get the idea.

But wait! There’s this list you received from your doctor’s office, right? Certainly it’s titled something provocative like: “Prevent Breast Cancer” and includes some or all of the following:

  • Eat a well-balanced, low-fat diet
  • Exercise regularly
  • Limit alcohol intake
  • Maintain a healthy weight
  • Annual mammograms beginning at age 40

I did all those.

And I was diagnosed at age 40 with two tumors of invasive ductal carcinoma, diffuse DCIS and lymph node involvement in my left breast. Did I misunderstand the rules for preventing breast cancer and do something wrong? No. I didn’t. I tried to reduce my risk and it didn’t work. The above list may be a compilation of helpful hints but, even collectively, they do not prevent breast cancer, they help reduce risk.

RISK REDUCTION

Risk reduction in the spectrum of the healthcare industry attempts to lessen our chances of receiving a diagnosis by removing potential harmful exposures and/or behaviors from our lives and, in some cases, replacing them with behaviors that can help fend off disease.

To use skin cancer as an example, we can use sunblock liberally but we are merely attempting to reduce our risk. Skin cancer is still a possibility and a combination of exposure and genetics may render our efforts utterly useless.

Never-smokers without lung cancer who may feel they can cross malignant non-small cell carcinoma off their worry list should meet Janet Freeman who “never smoked anything except a salmon.”

And there are tens of thousands more who followed the list of “prevention” tactics but were diagnosed anyway. Specifically, even if you are a never smoker, you may still have some of the following risk factors for lung cancer:

Risk reduction is limiting exposure to the above but does not guarantee prevention. And a genetic predisposition is hard to shy away from.

SCREENING

If we refer back to the sage if woefully mis-titled “Prevent Breast Cancer” document above, I’d like to call out the last ‘prevention technique’ – the oft-touted annual mammogram.

People. People. People. Regular mammograms don’t PREVENT breast cancer OR reduce risk. EVER.

Mammograms are screening tools. Regular screening is encouraged so anomalies can be found as early as possible,be treated as quickly as possible and, hopefully, result in a better longer term outcome.

DISTINCTION is NOT A SEMANTICS ISSUE

This is not a tomato – tomato (c’mon, you’re supposed to pronounce those differently when you read them!) issue. Why is the terminology distinction important? Three reasons bubble to the top for me:

  • Continued Diligence: Individuals must remain diligent in personal and professional screening even when they”do everything right” on the risk reduction list. Mammograms don’t “Save the ta-tas” they simply alert people as to whether or not their breasts are trying to kill them. I can personally attest to the fact that people who follow all the published rules for how to prevent breast cancer, and get a mammogram at 40, still get breast cancer.
  • Removing Stigma and Eradicating Blame & Shame: According to anecdotal data, the most common question lung cancer patients field is, “How long did you smoke?” If you advertise risk reduction as prevention you are perpetuating a falsehood. Perpetuating the idea that cancers are preventable implies that, when a diagnosis is given, somebody did something WRONG.
  • Redirecting Research Focus: While a list of ways to reduce risk for disease is helpful, such a list is not a magic bullet. Already genomic research is leading to personalized treatments. We need to expand efforts in this area. When the general public finally realizes that no one is “immune” to a cancer diagnosis, more focus can be applied in the appropriate areas.

Cancer sucks, no one “deserves” it. Please don’t propagate a false sense of security or imply wrongdoing by patients who are diagnosed by claiming cancer is preventable. Please choose your words wisely.

Yet another potential cause of lung cancer — and it isn’t smoking

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On November 15, the California EPA’s Office of Environmental Health Hazard Assessment (OEHHA) announced it intends to list emissions from high-temperature unrefined rapeseed oil as known to cause cancer.

I reviewed the studies they cited. Animal studies found high-temperature unrefined rapeseed oil emissions caused lung cancer tumors (primarily adenocarcinomas) in mice and rats (note: unrefined rapeseed oil is not the same as canola oil). An Egyptian study I found while following citations indicates cooking with high-temperature cotton oil may also cause mutations in the lungs of mice.

This provides more evidence that lung cancer ain’t just about smoking.  I suspect with time we will find that no matter where we live, our way of life exposes human lungs to many inhalants that induce mutations and lung cancer.  For instance, the lung cancer mortality rate in Xuan Wei County, China is among the highest in that country, and correlates with burning smoky coal indoors to heat homes.  This study indicates that residents there who had a variation in a gene known to help detoxify coal emissions were more likely to get lung cancer — a genetic susceptibility combined with an environmental trigger to cause lung cancer.

Lung cancers in never smokers may be the easiest way to identify these substances.  However, I suspect we will find the genetic variations and tumor mutations present in never smokers affect smokers and former smokers as well. We already know that the EGFR mutation in lung cancer tumors, while more common in never smoker females, are also found in smokers and former smokers.

As an aside, I think life as a lab mouse must really suck.

Thanks to friend Richard A. Lovett for forwarding the cooking oil article to me.

Edited 12-Dec-2013 18:40  PT:
I incorrectly equated unrefined rapeseed oil with canola oil.  Canola oil is not the same as rapeseed oil.

An Aid for Visualization

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Guided imagery and visualization are integrative medicine techniques that any cancer patient can use (for free!) to promote health, manage stress, aid in relaxation, and assist in pain control.  Information about these practices is available online from the American Cancer Society , University of Michigan Cancer Center, and other places.

Some studies suggest guided imagery and visualization may help our bodies fight cancer more effectively.  Using one’s imagination is useful here.  After my first recurrence, I decided to use guided imagery to help the chemo do its job.  For a few minutes every day, I relaxed in a quiet place and envisioned the chemo molecules as a Tolkien army — wizards with spells, hobbits with potions, elves with arrows and dwarves with axes — attacking a dragon (my tumor). My tumor started shrinking 10 days after starting chemo. Whether or not visualization contributed to the rapid shrinking of my tumor, it gave me some sense that I personally was doing something to defeat my cancer. Speaking from the entirely irrational side of my brain, anything that gives me some sense of control over cancer has got to be a good thing.

Others might prefer a more reality-based visualization, like your own immune system mounting an attack on the cancer.  To help you imagine your immune system attacking cancer, check out this image of a white blood cell engulfing a MRSA bacteria:

Hospital-associated Methicillin-resistant Staphylococcus aureus (MRSA) Bacteria

Credit: NIAID/NIH (NIAID Flickr's photostream) [Public domain], via Wikimedia Commons

My Scanxiety Won’t Listen to Reason

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To promote the value of blogging transparency, I must make a confession.  I have a PET-CT scan on Monday to check the status of my cancer.  For the past several months, I’ve been pretty relaxed about scans.

Right now, however, I have a raging case of scanxiety.

There is no logical reason for this.  My scans for the past 11 months have been clean, and I have no symptoms that would indicate this scan should be any different.  Even if I do show a recurrence on this scan, I know I have treatment options.  Even if I didn’t have treatment options, I am not afraid of dying.

Decades ago, someone taught me my emotions can be influenced by how I choose to view a situation.  If I hear a rude remark, I choose to think “They’re having a tough day” and I don’t get angry.  If I screw up on something important, I choose to think “I’ll do better next time” and I don’t feel frustrated with myself.  This technique allows me to sidestep most negative emotions and continue moving forward instead of getting stuck. It even works with scanxiety. Usually.

So why the heck doesn’t my scanxiety respond this time?

I suppose recent events as well as past history have something to do with it.  A neighbor who was diagnosed with lung cancer after me died from metastatic tumors in her brain covering a few weeks ago.  A friend in my lung cancer support group who had been doing well on a targeted therapy developed brain tumors in early October.  A friend in my online support group, and who is in my ROS1 lung cancer clinical trial, may have progressed (I blogged about that here). The clinical trial in which my onocologist planned to enroll me if my cancer recurred just stopped accepting new participants, which means I don’t know for certain what my options are when my cancer recurs. And in December of each of the past two years, I was coping with a recurrence of my cancer.

I guess my subconscious processing of all these events trumps the thoughts I choose to think in my conscious mind.

So here I am, preparing to fly to Denver for yet another scan.  Inside, I feel like my entire body is about to explode from pent-up tension.  Outside, I’m strung so taut that I erupt at a single misstatement from a family member.  My scanxiety hasn’t been this bad since my first recurrence blossomed into a very visible tumor on my collarbone.

All I can do is eat healthy, try to get a good night’s sleep, listen to lots of Mozart while I pack, and keep to myself until Monday afternoon so I don’t bite anybody.

Alive for Thanksgiving

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Today those of us in the USA celebrate Thanksgiving.  I have much for which to be thankful.

I’m thankful I beat the lung cancer odds and lived to see this day. No matter how much longer I may have, each day is a gift.

I’m thankful for my family (whether related by blood, marriage, or adoption)—husband, children, siblings, nieces and nephews, cousins, and companion animals. I’m grateful for the time I get to spend with each of you.

I’m thankful for my friends, who became family through shared interests and experiences. You bring me joy whenever we’re together.

I’m thankful for the beauty and majesty of the Pacific Northwest, and the wondrous, awesome, fascinating universe in which it fits.  I never tire of learning how it all works.

I’m thankful for the arts.  They stimulate my senses and inspire my imagination, often when I most need it.

I’m thankful to have a home and enough resources to live comfortably. I know many people locally and globally are not so lucky.

I’m thankful to live where I’m allowed to say what I think freely.

I’m thankful for the researchers, healthcare professionals, organizations and techies that made it possible for me and other patients to live another day.

I’m thankful for people who care for lung cancer patients.  If a friend or loved one has metastatic lung cancer, ask if you can help them learn about mutation testing, targeted therapies, and clinical trials. You might help buy them more time. And more time is precious.

Happy Turkey Day, everyone!

Tweets for #LCAM2013 Week 4 — How to Help Lung Cancer Patients

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For Lung Cancer Awareness Month (#LCAM2013), the #LCSM team compiled a list of tweet-sized lung cancer facts – one tweet for each day in November. We ask all #LCSM participants and lung cancer advocates to tweet the fact of the day at noon Eastern time (9 AM Pacific) to help with trending.  You can come here to copy the tweet of the day, or  if you prefer, you can retweet the fact after @LCSMChat tweets each day at 11:55 AM Eastern Time.

Tweets for the final week of Lung Cancer Awareness Month (#LCAM2013) focus on HELP:  what you can do to help lung cancer patients, whether through providing direct assistance, funding research, advocating, or supporting lung cancer organizations.  Facts for all weeks of #LCAM2013 are collected here.

HOW TO HELP LUNG CANCER PATIENTS

November 25 tweet:
HELP: Distribute information about low-dose CT screening for #lungcancer. http://www.lung.org/lung-disease/lung-cancer/lung-cancer-screening-guidelines/lung-cancer-one-pager.pdf #LCSM #LCAM2013

November 26 tweet:
HELP: Support #lungcancer patients as a volunteer at your local cancer center. #LCSM #LCAM2013

November 27 tweet:
HELP a #lungcancer patient during/after treatment with transportation, childcare, housework, meals, or fundraising. #LCSM #LCAM2013

November 28 tweet:
HELP: Support #lungcancer charities that fund research or assist LC patients. http://lungcan.org/our-members/ #LCSM #LCAM2013

November 29 tweet:
HELP: Support an LC advocacy org or ask your government reps to fully fund #lungcancer research. http://lungcan.org/advocacy/ #LCSM #LCAM2013

November 30 tweet:
HELP: Join an #LCSM chat on Twitter to discuss #lungcancer topics. http://lcsmchat.wordpress.com/lcsm-chat/ #LCAM2013

Losing the War on Words

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Some days my verbal expression abilities seem to take a vacation.  I don’t take leave of my senses, they take leave of me.  Instead of making things clearer, my words make conversations more … convoluteder.

See?

This weekend seems to be such a vacation. When I tried to explain a concept to my son for a homework assignment, I couldn’t find the words I wanted and he just got more confused.  When I tried to discuss a financial matter with my husband, he kept telling me I’m repeating my points, yet he didn’t seem to grasp what I was attempting to say.  I had a discussion with a sibling and thought we’d agreed, then learned we hadn’t understood each other at all.  When I tried to clarify things, I made them more muddled.  I ended up with a headache and a load of frustration without accomplishing anything I attempted to achieve.

I know miscommunication is a normal part of family life. This could just be One of Those Days. However, when living with cognitive side effects of cancer treatment plus the very real possibility of brain metastases, such events are difficult to brush aside.  Unpleasant realities pester my thoughts:  Is it obvious to everyone that my brain isn’t working as well as it used to?  Is this a typical family snafu, or has my reasoning eroded further?  Is this just chemobrain, or a return of my cancer?  Is this headache due to the communication problems, or a new tumor?  Having someone explain to me that I just wasn’t making sense only makes me feel worse. If I’m having this much trouble expressing myself now, what will it be like when my cancer DOES progress and meds/reduced oxygen/pain REALLY impact my ability to communicate?

Besides the frustration, the hurt feelings make for a less than perfect day.  The clouded mood takes the wind out of my creative sails.  I lose all interest in working on projects or interacting with people, and just want to watch TV or play games on the PC.

Good thing today is the 50th Anniversary of Doctor Who, a well-written science fiction series.  There’s a marathon of episodes all weekend.  I can dream of how I’d use a Tardis time machine in the war on cancer.

Tomorrow is another day.

Sunny with a Tinge of Dark

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This morning, after I checked a few posts and messages in an online cancer forum, hubby Gerry and I made a Costco run.  Our conversation en route was pleasant enough, but I found myself feeling increasingly grouchy.  Today was a crispy, brilliantly sunny day in Western Washington. Why was I leaning towards dark?

When I started talking to Gerry about conversations on the cancer forum, I realized why. A friend in my ROS1 lung cancer trial who has been on Xalkori for a year longer than me and whose cancer is slower growing than mine, told me his last scan showed a possible progression.

He was calm and composed about this.  Both he and I had been told the effectiveness of Xalkori against our ROS1 cancers won’t last forever, that we’ll eventually develop resistance to the drug.  We both were given contingency plans for treatment once progression showed up.  This wasn’t an earth-shaking, end-of-life event.

But yet, it was a noteworthy event for me.  Those hypothetical discussions had just become real.

I’ve had clean scans for ten months.  I usually feel good (I’m used to overlooking both the temporary and permanent side effects of treatment). I’m exercising and gradually regaining some of the muscle mass I lost in cancer treatment.  I’m writing again.  I’m going out with friends.  I’m even planning some vacation travel for next year.  Most days, I don’t think of myself as a cancer patient.  I can sometimes even blog about my cancer without the gut-wrenching realization “I have CANCER” sneaking into my awareness.  Life is … NORMAL (for unusual definitions of “normal”).

But normal will not last. Cancer survivor reality raised its ugly head. Someone among the thirty-some members of my ROS1 clinical trial — someone I know personally — probably has progressed.  We ROS1ers are NOT invincible.  Xalkori will NOT last forever.  This time next year, I might be dealing once again with radiation, chemo, or a new trial drug. My grouchiness was similar to that caused by scanxiety: I had to face the reality that my cancer will likely come back.

Once I identified the source of my fears, the momentary darkness passed, and life went on.

We bought a nice bottle of Bailey’s Irish Cream at Costco.

Thinking ahead — step 7

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It’s only taken me fifteen years, but I’m finally tackling that last piece of my estate plan: the “cheat sheet” for my family/personal representative that tells where to find assets, who to contact, what online accounts to shut down, passwords, etc (and a note about my end-of-life and memorial service preferences). No matter how long I plan to be around, it’s good to know I’m making things a bit easier for whoever may be left behind.