The Side-Effects Samba

Treating side effects of cancer treatment is at times an intricate dance.

Aggressive, long-term cancer treatment can leave one with lingering side effects. Two side effects I live with are peripheral neuropathy and hot flashes. Both are pesky during the day, but are even more bothersome if they decide to flare up during the night and rob me of sleep. When I don’t get a solid eight hours of sleep, my chemobrain (another pesky side effect) gets noticeably worse.

When I started cancer treatment, I took Ambien to help me sleep — without it, I was awake many hours each night. But Ambien suddenly stopped working for me about a year after I started using it. After a relatively sleepless month, my oncologist recommended I take gabapentin about an hour before bedtime to reduce nerve pain from neuropathy, calm my hot flashes, and make me sleepy. I took 300 mg of gabapentin at bedtime and slept well most nights, even though the drug left me groggy for a few hours every morning.

A couple of weeks after starting gabapentin, I started taking Xalkori as part of a clinical trial. A known side effect of Xalkori is edema. If edema occurs with Xalkori, it usually isn’t severe until the patient has been on the drug for several months. Lucky me — my legs blew up like balloons after just a few weeks. The edema and resulting joint pain were severe enough that I asked my trial oncologist about reducing my Xalkori dose. After weighing my options, I decided to stay on the full dose of Xalkori in hopes it would maintain my No Evidence of Disease status longer. I managed the edema somewhat with compression hose, a diuretic, and exercise.

My mental fuzziness seemed to increase gradually over the months, so I had another discussion with the oncologist about managing side effects. I decided to try melatonin at night to help me sleep, and reduce the gabapentin to 100 mg at bedtime. My sleep was unaffected, and I seemed a bit more alert in the morning, although the neuropathy in my feet started to increase.

About a month after this meds change, my edema decreased. I asked my oncologist if the reduced edema might be related to lowering my gabapentin dose, and he said yes. This was the first time I’d heard that gabapentin might cause edema. I reread the gabapentin drug insert, and there it was in the common side effects: “swelling in your hands or feet.”

So, if I completely eliminate the gabapentin, my mental clarity might increase and the edema might lessen or even disappear, but the neuropathy (which was beginning to interfere with my walking) and the sleep problems might increase. Do I dance left, or do I dance right?

Two weeks ago, I chose to stop taking gabapentin. As I’d hoped, the edema has gone down; it’s not completely gone, but I can skip the compression hose and diuretics some days without my legs becoming uncomfortably puffy by evening, and the joint pain has eased. Surprisingly, my neuropathic foot pain is a bit better. However, the nighttime hot flashes came back with a vengeance, and I haven’t had a good night’s sleep since. Ironically, the lack of quality sleep makes me even more groggy during the day.

It’s all a dance. Now if someone could just tell me what step comes next ….

About the Manner of My Death

[In case you’re worried, I’m feeling fine, still have No Evidence of Disease and am not in danger of dying soon. My clinical trial oncologist thinks I have a 75-80% chance of making it to 2016 given the current lung cancer treatment options – longer if new treatments are developed in the next couple of years.]

I have lost friends recently to lung cancer, and fellow patients have been discussing hospice and the dying process in the Inspire.com Lung Cancer Support Community. This got me thinking.

I do not fear death, but I must admit I do fear parts of the dying process: stuck in bed, unable to express my wishes, being totally dependent on others to take care of my basic needs. I watched both parents die of dementia, and I know they did not want to go that way. I don’t either.

I’m trying to do my thinking about the manner of my death now when I’m relatively clearheaded and comfortable, because I want to explain my wishes to my family in advance. The problem is that none of us can know for certain what the manner of our death will look like. My lung cancer might return only in my lungs and gradually steal my breath; that can be controlled by pain meds. However, I might experience substantial brain mets or oxygen deprivation that could impair my thinking and gradually take away who I am. That second scenario is the one I fear most. I fear its impact on my family, who would have to watch my cognitive decline as well as care for my physical needs. Losing my parents by inches was hard on me and my siblings, and I don’t want to be the source of that pain for others.

While part of me would like to stay at home as long as possible, surrounded by familiar things and people and pets, another part of me thinks the burden on my family would be too great. I’ve seen the physical toll home hospice can take on the caregiver. Perhaps being placed in a hospice facility when the time comes would be a better approach.

I’m lucky to have a third option. I’ve recently been reviewing my state’s Death with Dignity Act. Under this law, terminally ill patients have the right to self administer meds that will end their lives. Maybe I’ll throw a party to say my goodbyes, then go home and decide the time and manner of my death myself. Yet … are there existential consequences for messing with the Fates timelines?

The angst continues. At least I have choices.

Lung Cancer’s Highlights from 2013 and Predictions, Hopes for 2014 – The First LCSM Tweetchat of 2014

This is a reblog from the #LCSM Chat blog (posted with permission). I changed the post to include links to the blog sites where comments about the chat should be posted.
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Lung Cancer’s Highlights from 2013 and Predictions, Hopes for 2014 – The First LCSM Tweetchat of 2014

By Dr. H. Jack West 

The end of a year is always a time for reflection on the past alongside hope for the future, so our upcoming lung cancer social media tweet chat on twitter (#LCSM on twitter) will focus on everyone’s thoughts of the most significant developments in lung cancer over the past year, along with predictions and hopes for the coming year.

Please join us Thursday, January 2nd at 8 PM Eastern, 5 PM Pacific on Twitter, using the hashtag #LCSM to follow and add to our one-hour chat with the global lung cancer community, where we’ll cover the following three questions:

1) What do you think were the biggest advances in lung cancer in 2013?

2) What do you predict as key changes in lung cancer in the upcoming year?

3) What is your leading possible hope/goal for the lung cancer world in 2014?

It should be a lively, upbeat discussion, so please join us Thursday, or share your thoughts on the #LCSM Chat blog or on Cancergrace.org before or after the live event. Hope to see you there!

Prevention vs Risk Reduction Vs. Screening (a reblog)

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.

Alive for Thanksgiving

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!

Why I’m in a Clinical Trial

The fact that I’m alive is a modern-day medical miracle. And I owe it to clinical trials.

In early 2011, I was in good physical shape, slightly overweight, eating healthy and exercising regularly. After I tolerated a nagging, slight cough for a few months without any relief from antibiotics, my doctor ordered a chest x-ray. Before I’d left the lab, she ordered a CT scan. Before I arrived home from the clinic, she called: the radiologist saw a mass in my lung. Two days later, a Friday, I saw a pulmonologist who performed a biopsy. He called me Tuesday evening, May 10, 2011, with the news: at age 55, as a never smoker, I had lung cancer.

Scans and tests over two weeks rendered a diagnosis of stage IIIA non-small-cell adenocarcinoma complicated by obstructive pneumonia. I was not a candidate for surgery, but the oncologist considered me curable. My tumor didn’t have either the EGFR or ALK mutations.  After ten days in the hospital and weeks of IV antibiotics, I recovered enough to get radiation therapy and low-dose chemotherapy, followed by one full dose of chemo (my side effects were too severe to allow me to have more chemo). I finished first-line treatment in early August 2011.

My post-treatment CT scan in late September 2011 showed the lymph nodes were almost completely clean, and the tumor had shrunk by over 90%. I thought I had a great chance at a cure. In the next two weeks, I underwent several tests to determine if I was healthy enough to have the lung removed. One of the tests was a PET scan, which found a hot spot on my right front collarbone. A few days, later two lymph nodes were removed in an open biopsy and found to be more of the same cancer. I was now stage IV–metastatic lung cancer. No lung surgery for me. The radiation oncologist advised waiting rather than radiating because I’d had a large volume of lung zapped already.  My oncologist also advised waiting a few months before starting a new chemo to give my body time to recover.

I decided to learn more about treatment options during those few months. From my participation in the Inspire.com Lung Cancer Support Community, I’d learned about the Lung Cancer Mutation Consortium Protocol clinical trial, which tested for ten mutations in lung cancer tumors. I had lots of slides courtesy of my two new tumors; testing for more mutations sounded hopeful, and I liked the idea of contributing in some small way to the science looking for a lung cancer cure. I searched for the trial on clinicaltrials.gov and emailed its contact person at the University of Colorado in Denver. I couldn’t travel to Denver (my pulmonologist thought my hollow tumor might cause a collapsed lung if I flew), but UC accepted me into the trial and tested my tissue anyway.  A few weeks later I received a call from the head of the trial, Dr. Paul Bunn: I had none of the ten mutations.

In two months, a visible 3-inch tumor grew by my right collarbone in the area where the lymph nodes had been removed. I had a CT scan the day after Christmas, met with my oncologist to discuss treatment, and had a power port installed. After six rounds of chemo over five months, CT and brain MRI scans showed all my original tumors were gone, no new tumors had appeared, and the collarbone tumor had shrunk over 90%. We decided to go for a possible cure with more radiation.  Six weeks later, my Sep 2012 PET-CT scan showed the original tumors were gone and the collarbone tumor was dead. However, I had two new nodules suspicious for cancer, this time in my right lung. Twice now I’d recurred within two months after finishing treatment. What to do next?

Someone on the Inspire.com forum suggested that because I was a young, healthy, never smoker with adenocarcinoma, I fit the profile of patients who had new mutation called ROS1. The poster was in a ROS1 clinical trial in Boston, but the trial was also at University of Colorado. I asked my oncologist about ROS1 testing, but he hadn’t heard of it (the research had been published just nine months earlier). While visiting family in Denver, I arranged to meet with Dr. Bunn and learned UC now tested for new mutations, including ROS1 and RET, and that my tumor had a 10-20% chance of having one of them.  I agreed to let UC test my remaining slides.

I had a biopsy a week later. The pulmonologist said he got a good sampling of the larger nodule but couldn’t find any cancer cells. We decided to wait a month and do another CT scan to see if either nodule grew. The very next day, an email from Dr. Bunn told me I tested positive for ROS1. UC had an opening in a clinical trial that involved a pill called Xalkori, which targeted cells having the ROS1 mutation.  Since I didn’t have a biopsy confirming cancer, Dr. Bunn offered to hold a trial slot for me pending results of my next scan.

My October 2012 chest CT showed the smaller nodule grew nearly 50% in one month. I called UC the next morning and started the process to apply for the ROS1 clinical trial. They agreed to consider me without a biopsy. I scrambled to collect all my medical files and scan CDs. Five days later I flew to Denver for two weeks, hoping I’d pass the screening and be accepted into the trial. I took my first Xalkori pill November 5, 2012.

For the next sixty days, I flew to Denver every two weeks, departing Seattle on Monday and returning home Wednesday. I had blood and urine tests every visit, along with other tests (like EKGs and eye exams), and a clinic visit at whichI met with the doctor to review test results and discuss symptoms. I then flew home with two weeks worth of pills. The first PET-CT scan on New Years Eve showed my two lung nodules were gone and no new hot spots—my first clean scan in 20 months of lung cancer. The side effects I experienced were far easier than either chemo had been. I had my life back.

After the first scan, my visits to UC shifted to every four weeks; after ten drug cycles, they shifted to every eight weeks. Now at UC visits I have blood work, a PET-CT scan, a visit with my UC oncologist Dr. Ross Camidge, and a brain MRI every six months. I have blood work done at my home clinic in off months.

I am not cured–the Xalkori only suppresses my cancer. However, Dr. Camidge has a plan for treating my recurrences.  It’s an odd existence, living from scan to scan. I’ll be in treatment for the rest of my days. Yet I’m hopeful that if/when each clinical trial stops working, a better one will be waiting for me.  Maybe they’ll find a cure for me before I die.

And in the meantime, I’m living.

Tweet for #LCAM2013 (Lung Cancer Awareness Month)

THIS IS A REBLOG OF A POST I WROTE FOR THE #LCSM CHAT BLOG.

The October 24th #LCSM Chat on “Social Media and Lung Cancer Advocacy: What Can I Do?” identified lots of information that the public needs to know about lung cancer.  Chat members decided we’d like to tweet those facts during Lung Cancer Awareness Month (#LCAM2013) this November. Some suggested we all tweet the same fact each day to generate the greatest impact on Twitter.

To coordinate this effort, the #LCSM team compiled a list of lung cancer tweets based on verified facts – one tweet for each day in November. Links to the sources for the facts are listed below the tweets for those who want evidence.

@LCSMChat will tweet each day at 11:55 AM Eastern Time if you prefer to retweet rather than come here to find the tweets.

The tweets fall into four groups, roughly by weeks:

Week 1:  WHY — reasons why curing lung cancer matters Week 2:  WHO — personal stories of lung cancer patients Week 3:  HOPE — symptoms, early detection, personalized treatment, research Week 4:  HELP — what you can do (how to fund research, advocate, support patients, etc.)

Trending: We’ve included #LCAM2103 and #LCSM in every tweet to help with trending. If we all tweet/retweet the fact of the day at the same time, we might achieve it!  Please try to tweet/retweet each daily fact as close as possible to 12 noon Eastern Time (New York City time for those of you outside of North America). Hint: The tweetdeck app will allow you to send tweets at a scheduled time.If we all tweet at the same time, we might achieve trending. Please try to tweet each day as close as possible to 12 noon Eastern Time

Week 1 tweets are listed below.  Tweets for Weeks 2-4 will be blogged later in the month. If you subscribe to the #LCSM Chat blog, you will receive an email when our blog posts are published. All the facts will also be available on a “Lung Cancer Facts” page of the LCSM Chat site for easy reference.

WEEK 1: WHY – REASONS WHY CURING LUNG CANCER MATTERS

November 1 Tweet
Myth: Don’t smoke? Can’t get lung cancer. Fact: Lung cancer in never smokers is 6th leading cause of US cancer deaths. #LCSM #LCAM2013

Johns Hopkins Medicine. Guide on Lung Cancer in Never-Smokers – Different Disease Different Treatments (09/15/2009). Retrieved Oct 30, 2013, from http://www.hopkinsmedicine.org/news/media/releases/Guide_on_Lung_Cancer_in_NeverSmokers__Different_Disease_Different_Treatments.

November 2 Tweet
Lung cancer kills almost 2x as many women as breast cancer & 3x as many men as prostate cancer. #LCSM #LCAM2013

U.S. Cancer Statistics Working Group. United States Cancer Statistics: 1999–2010 Incidence and Mortality Web-based Report. Atlanta: U.S. Department of Health and Human Services, Centers for Disease Control and Prevention and National Cancer Institute; 2013. Retrieved from http://apps.nccd.cdc.gov/uscs/toptencancers.aspx. To access data, select year 2010, “death rates” tab and view table for all ethnic groups Per CDC, 2010 cancer deaths were caused 37.9% by lung cancer and 21.9% by breast cancer in women, 60.1% by lung cancer and 21.8% by prostate cancer in men.

November 3 Tweet
160,000 Americans will die of lung cancer this year. 80% will be never smokers or nonsmokers. #LCSM #LCAM2013

SEER Cancer Statistics Factsheets: Lung and Bronchus Cancer. National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/statfacts/html/lungb.html In the United States in 2013, it is estimated there will be about 159,480 deaths from lung cancer. Approximately 6.9 percent of men and women will be diagnosed with lung and bronchus cancer at some point during their lifetime.

Centers for Disease Control and Prevention. MMWR Weekly 56(44);1157-1161. (9-Nov-2007). Retrieved Oct 30, 2013, from http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5644a2.htm. Lung cancer cases are 17.9% never smokers, 61.2% former smokers, 20.9% smokers (see Table 2, lung neoplasms).

November 4 Tweet
The 5-year survival rate for lung cancer is 16%, about the same as it’s been for 40 years. #LCSM #LCAM2013

SEER Cancer Statistics Factsheets: Lung and Bronchus Cancer. National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/statfacts/html/lungb.html Current 5-year survival rate of adults with lung and bronchus cancers is 16%. In 1975, the 5-year survival rate for lung cancer in adults was 11.4%.

November 5 Tweet
World Health Org: Air pollution is responsible for 223K lung cancers deaths/yr worldwide – it’s worse than 2nd-hand smoke. #LCSM #LCAM2013

International Agency for Research on Cancer, World Health Organization. Press Release No 221 – IARC: Outdoor air pollution a leading environmental cause of cancer deaths. (17-Oct-2013). Accessed 20-Oct-2013 from http://www.iarc.fr/en/media-centre/iarcnews/pdf/pr221_E.pdf

November 6 Tweet
Lung cancer takes more lives than breast, prostate and colon cancers combined – it accounts for 27% of all cancer deaths.  #LCSM #LCAM2013 

American Cancer Society. Cancer Facts and Figures 2013. Atlanta: American Cancer Society; 2013. Accessed 20-Oct-2013 from http://www.cancer.org/acs/groups/content/@epidemiologysurveilance/documents/document/acspc-037115.pdf

November 7 Tweet
81% of prostate cancer and 60% of breast cancer cases are diagnosed before they spread. Lung cancer? Only 15%. #LCSM #LCAM2013

 American Cancer Society. Cancer Facts and Figures 2013. Atlanta: American Cancer Society; 2013. Accessed 20-Oct-2013 from http://www.cancer.org/acs/groups/content/@epidemiologysurveilance/documents/document/acspc-037115.pdf

November 8 Tweet U
S research $ per cancer death is far greater for colorectal (4x), prostate (8.5x) & breast (14x) cancers than lung cancer. #LCSM #LCAM2013

National Lung Cancer Partnership. What You Can Do (graphic). (Mar-2013). Accessed from http://www.nationallungcancerpartnership.org/images/uploads/files/NLCP_FS_1Facts_NextDayFlyer_2013_BACK.pdf.

American Cancer Society. Cancer Facts and Figures 2013. Atlanta: American Cancer Society; 2013. Accessed 20-Oct-2013 from http://www.cancer.org/acs/groups/content/@epidemiologysurveilance/documents/document/acspc-037115.pdf.

U.S. Army Medical Research and Materiel Command, Department of Defense. 2012 Congressionally Funded Medical Research Programs. (30-Sep-2012). Accessed from http://cdmrp.army.mil/pubs/annreports/2012annrep/2012annreport.pdf.

NIH Research Portfolio Online Reporting Tools. Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC). (10-Apr-2013). Accessed from http://report.nih.gov/categorical_spending.aspx.

November 9 Tweet
Lung cancer is the second leading cause of all deaths in the US. #LCSM #LCAM2013

National Lung Cancer Partnership. What You Can Do (graphic). (Mar-2013). Accessed from http://www.nationallungcancerpartnership.org/images/uploads/files/NLCP_FS_1Facts_NextDayFlyer_2013_BACK.pdf 

November 10 Tweet
Lung cancer is also linked to radon gas in homes (20,000 deaths/yr), workplace exposure, genetics, & cancer treatment. #LCSM #LCAM2013

US Environmental Protection Agency. Radon. (26-Aug-2013). Accessed from http://www.epa.gov/radon/.

World Health Organization’s Environmental and Occupational Cancers Fact Sheet http://www.who.int/mediacentre/factsheets/fs350/en/

Coté ML et. al. Eur J Cancer. (Sep-2012). Increased risk of lung cancer in individuals with a family history of the disease: a pooled analysis from the International Lung Cancer Consortium. Accessed from http://www.ncbi.nlm.nih.gov/pubmed/?term=22436981

American Cancer Society. Second Cancers Caused by Cancer Treatment. (30-Jan-2012). http://www.cancer.org/acs/groups/cid/documents/webcontent/002043-pdf.pdf