The Bonnie J. Addario Lung Cancer Foundation

Survivor Hall of Fame

Pam Mosher
I am a 12 year survivor of non-small cell carcinoma in my right lung. I originally went to my GP due to pain in the back area of my right rib cage. The doctor— without examining me—told me that I had “arthritis of the ribcage”, and told me to go home, take Daypro and learn to live with it!!! Since I didn’t know another GP to go to and the pain continued to increase, I went to my chiropractor, Dr. Bruce Presnick in Pleasant Hill, California, who had helped me 10 years earlier after I had suffered a terrible whiplash when I was rear-ended at a stoplight. After a few treatments and the pain continued to get worse, he stated that the only thing left to do was take a chest x-ray. Dr. Presnick is the doctor who found the shadow on my lung!! (I had quite smoking in 1985). I went to the Mt. Diablo Cancer Center in Concord, California, and my oncologist is Dr. Elizabeth Odumakinde. I had a combination of chemo and radiation to shrink my tumor through November and December of 1997 and surgery on 1/20/1998 when they successfully removed what was left of the tumor and parts of 4 ribs (the tumor had been pushing against my ribs). I had chemo for 4 months after my surgery and I am here…thanks to the wonderful team of Doctors—Dr. Richard Kops (Pulmonary)—Dr. Elizabeth Odumakinde (Oncologist)—Dr. William Sweezer (Thoracic Surgeon) and Dr. Bruce Presnick and the amazing team of people at the Cancer Center.

BJALCF is doing everything that I had hoped would be done to help raise awareness—that Lung Cancer kills many more than Breast Cancer. Many thanks, Pam

Sally Samuels

I had adenocarcinoma non-small cell Lung Cancer.  I had the lower lobe of my right lung removed on 3/24/09.  No cancer cells were found in the lymph nodes, so I am staged 1A.  I am one of the lucky ones thus far as I am now considered cancer free.

My cancer was found only because I was proactive and had entered an international lung cancer study in 2004.  It is called the International Early Lung Cancer Action Program and was done through the Dorothy E. Schneider Cancer Center connected with Mills Peninsula Hospital. I was at high risk for Lung Cancer because I smoked for 30 years and quit in 1990, and also my mother, my uncle (her brother), and my paternal grandfather all ultimately died as a result of Lung Cancer.  If I had not been part of that study, my Lung Cancer would not have been found this early.  I had no symptoms at all.  Once again I say I am one of the lucky ones thus far.

My inspiration is my mother.  In 1975, at 64-years-old, my mother was diagnosed with Lung Cancer—two years younger than the age I am now.  She had the upper lobe of her right lung removed.  No follow-up treatment was needed.  Two and a half years later, another primary cancer was found in my mother’s lower left lung.  A pie shaped wedge was surgically removed.  No follow-up treatment was done.  When I asked about my mother’s prognosis as to her lifespan, I was told it was not good.  WRONG!  My mother went on to live for 19 more years … 18 of which were cancer-free and wonderful— leading a full and active life for those 18 years.  At about 85 years of age, another lung tumor appeared.  Nothing was done to treat this new tumor, as my mother had become too frail for her to physically withstand any treatment.  My mother lived  about nine more months— dying at almost 86 years of age.  Thus, my mother is my inspiration.  I pray I can live as she did.

Ed Rosenberg

Our dear son, Hosea Rosenberg, asked if he could share our story on November 21, 2009 at Simply the Best Dinner Gala IV where he created and designed the most fabulous menu ever.

Unfortunately, my husband, Ed, is too tired for talking or writing, so it will have to be our story through my eyes.

My husband Ed was a strong man, an outdoorsman. We met 25 years ago in Taos, New Mexico. After a short courtship, we married and moved to the mountains of Colorado. Our life was not about careers or making money. It was about discovering who we were, living close to nature, loving and raising our family. Some may have thought it was a small life, but we found it exciting, challenging and beautiful, filled with rich experience.

We built our own house at the foot of several 14,000 foot mountains, in a beautiful valley outside of the small town of Crestone. It is a magical place of clean crisp air and water, intense colors, incredible stars and wildlife. Elk, antelope, deer, coyotes and black bears are often spotted in our neighborhood. Foxes, mountain lions and bob cats make their presence known on rare occasions. When we were younger, we’d hike the mountains with the kids. Ed found great peace and pleasure in living this lifestyle and is proud of sharing it with his children.

We have an incredible community that has grown from 150 people to 2,000. Ed was a member of the Fire Department and Director of our local School Board. A talented folk and bluegrass musician, he created and performed with two groups, volunteering for every fundraiser, and playing at our Fourth of July Picnics. For the last 16 years he’s been the town Santa Clause at our community school and Christmas Festival, having all the local children, including his own, sit on his knee and tell him how good they’ve been. It has been an incredible life, one filled with happiness and love, community, friends and family.

In June of 2008, after a two day car ride returning from a fun vacation at the Kerrville Fok Festival, Ed complained of a back ache. He was 69 years old, though he looked and acted more like 50. Besides the long hours in the car, we had been swimming, biking and playing, so we thought nothing of it, possibly a muscle strain, sciatica or a slipped disc. After a week when the pain didn’t go away, he went to our local physical therapist, and then to a spine Doctor. After x-rays, cat scans and an MRI we were told there was a growth. The Dr. ordered a biopsy and told us not to worry.

A week later, with all the tests back, we sat there in shock as the Dr. told us Ed had Stage IV Lung Cancer; a tumor in his right lung had metastasized to his spine. Ed had no symptoms of any lung or breathing problems. There are moments in ones life when in a second everything changes, and your life as you know it no longer exists. This was one of those moments for us. We just stared at the Dr. as he awkwardly told us there was not much we could do. Chemo would just make Ed sick and extend his life by a few painful months. Of course there are always miracles, but as far as science was concerned, there was not much hope. He was sorry.

That night we went home, climbed into bed, held each other and cried. But the next morning found us at the book store doing research. We read all kinds of books with all kinds of crazy ideas. We did everything that sounded like it had any possibility of being good for you. We changed our diet to raw foods and drank flax oil emulsified in yogurt. We saw a medicine woman who prescribed large doses of turmeric and other herbs I don’t know the names of in which Ed drank, bathed and did nightly enemas. We drank wheatgrass, carrot juice, pectin and raspberry seed concentrate. Ed did intravenous vitamin C and sat in front of a “Vib Machine.” We did it all, and we both felt better.

The Oncologist brought in the Radiologist, and we decided to have radiation on Ed’s spine in the hope that it would keep him walking. It did help for awhile, and we had a small reprieve. We went on a camping vacation to Mexico, With Ed stating clearly that “He would not just sit at home waiting to die.” Just one month before Ed’s 70th birthday, we were kayaking in the Pacific, and climbing mountains to see where the Monarch Butterflies wintered.

Then one day in February, 2009, Ed found a lump in his neck. We decided to return home quickly and see what was going on. We found a new Oncologist and Radiologist in a well respected Cancer Center in Colorado Springs. After all, who wants to return to the Dr. who doesn’t believe there is any hope? Unfortunately, the new Oncologist agreed with the first, there was not much we could do. There are just not any cures for Stage IV Lung Cancer at this time, and unfortunately most patients with lung cancer have no symptoms until they are at Stage IV. Lung Cancer also has the stigma that it is caused by tobacco use and so it is the least funded for cancer research. The truth is that only a small percentage of patients are actual smokers.

The new Radiologist suggested more radiation. We were back to that first day when the world changed. Somehow on our vacation, I had forgotten my husband had “an incurable disease and only had months to live.” It hit me hard. Ed walked into his first radiation treatment and by the third he was in a wheel chair. Besides the damage the tumor was causing, the radiation caused additional swelling and nerve damage. Ed has not recovered full use of his legs.

One day in April when I came home from work, I found Ed shaking uncontrollably. I had also noticed that he had started to loose some of his words and memory and had trouble regulating his temperature. He had a brain tumor. We went back to the Cancer Center and he was the fourth patient there to have the new cyber knife surgery. It helped with very few side effects and his brain is currently tumor free.

We continued our research, looking for any treatment that might offer hope. In June, Ed was surfing the web and he found some information on Stage IV Lung Cancer Trials. We called. Talked to the trial administrator and Dr and found out that it was in Denver, just 200 miles from our home. They were having great results. We made an appointment right away. They started out with genetic testing on the biopsied tumor trying to find the cause of his cancer. Unfortunately, Ed was not in any of the categories which were easy to diagnose, he also was not in the category with cigarette smokers, he was not a smoker. This left him in the 40% of people who have lung cancer with an unknown cause.

In September, Ed joined the study led by Dr. Camidge, a positive and impassioned physician, at the University Of Colorado. He is receiving the trial drug, IMC – 1121B, an Angiogenesis Inhibitor, along with chemo therapy, and as of the last scans the tumors are shrinking and our medical team is optimistic.

Unfortunately, Ed is having difficulty with the chemo side effects and at this time is not feeling very well. As of his last infusion, we have decided to stop the chemotherapy and continue only with the trial drug. Would he have done better if he had known about the trial earlier? Why didn’t the other two cancer centers, just 50 miles away, know about this study and send us there? Why send us home with no hope when there was and is research going on in our own state? Why is the information so hard to find? These are my questions.

The down side of Cancer for Ed is the pain, the nausea, the loss of his physical and mental capabilities, the fear of dying. For me, it’s watching him go through this and feeling utterly helpless to make it better, the fear of being the one left behind to start a new life.

Mostly… cancer is hard, everyday….but the beautiful side is the love. The generosity and compassion of strangers, and the Love from our community, our friends & family, our children….. that’s what keeps us going. We spend more time holding hands, gazing into each others eyes, saying I love you; I appreciate you, thank you. We reminisce about our lives, and Ed tells me stories that I never knew. After 25 years together there are still surprises! Our kids call and visit more often. As hard as this past year has been, I am very grateful for this time to hold the one I love, to be with him through this experience.

We try to find the joy in each day. We go for treatments every three weeks. He tells me that he is not ready to die; he still has some living to do! We pray for the new research to work. I see his body changing, growing thinner, weaker, and more fragile; no longer the robust mountain man I fell in love with. But I still think he is the strongest and bravest man I have ever known as I watch him face his greatest challenge, Cancer.

I offer our story to be shared by our son, Hosea, whom we love and are so proud of.
Sincerely,
Robin Rosenberg

Justin

Thank you, Bonnie, for all of your hard work. My son, at age 28, was diagnosed with Stage IV Lung Cancer September 5, 2008. We did not have anyone to talk with and the articles on line were depressing to say the least — Stage IV, the prognosis was just plain scary. We all had a pity party, then went to work to “kick cancer’s butt.” Justin’s Lung Cancer had metastaized to the bone with tumors in his neck, spine, hip, lung and liver. Justin underwent several treatment plans that were unsuccessful. He finally landed on a combination of Carboplatin, Taxo and Avastin that worked! He had a scan on August 11, 2009, and the scans were NED!!! He latest scans were still NED.

I keep telling everyone we need a foundation to do for lung cancer what the Susan G. Komen foundation has done for breast cancer. You are that foundation! Please keep up the fine work for awareness, comfort, funding for treatments and so much more. — Jan Andrews

Survival by Accident: A Miracle Story–Jacqueline Patrick

We welcome Jacqueline to our movement, Honorary Advisory Board, and thank our lucky stars that she is still with us today.

Here is Jacqueline’s serendipitous story and in her own words, “I couldn’t quit smoking, because I never started.”

August 2, 2005, at 40 years of age, Jacqueline, single mother of three, was involved in a head-on automobile accident resulting in an ambulance ride to a local Atlanta hospital. This accident saved her life. Jacqueline underwent a variety of scans and x-rays to determine the extent of her injuries. After a few hours had passed the ER physician relayed a message of “good news and bad news” to Jacqueline and her family. The “good news” was announced that no injuries were found as a result of her auto accident. The “bad news” indicated that “something the size of an orange” was sitting in her lower right lung. The next day Jacqueline had a biopsy and was told that this otherwise healthy, active, never smoker with never-smoking parents had Lung Cancer. More specifically, the type of cancer was, adenocarcenoma which is the fastest growing type of cancer cell. Time was of the essence. The tumor had to be removed immediately. Family and friends in the medical world were consulted and mobilized with an action plan for immediate treatment.

August 17, 2005, Jacqueline underwent a 14-hour long surgery to (1) determine the stage of cancer and (2) confirm that the cancer had not spread allowing the surgeon to proceed with the removal of the middle and lower lobe of her right lung. With family and friends waiting, Jacqueline’s life was saved by having 75% of her right lung removed, including the cancerous tumor. The tumor was classified as Stage 1B (b for the size). At eight weeks post-up, Jacqueline began a weekly regimen of chemotherapy treatment lasting for 12 weeks. It is important to note that had it not been for the auto accident the rapidly spreading cancer cells would have eventually been discovered at a late stage with an approximate 6 month life expectancy.

Jacqueline remains cancer-free as a result of many prayers and gifted physicians. As a survivor and third-term locally elected official she has been and remains involved in collaborative efforts to introduce new legislation in her state focusing on patient advocacy, funding, research and early detection for Lung Cancer-related issues affecting smokers, former smokers and never smokers.

Barbara’s Story

On March 30, 2009, everyone thought I was having a heart attack, even my PCP. She insisted that I go to the ER.  I knew it was only heart burn but I went anyway.  Well, I almost didn’t go.  I had left work and was driving by my house and almost went home instead.  Well, when I got to the ER they did a bunch of routine tests, one of which was a chest x-ray and it showed a mass in my upper left lobe of the my lung.  A CT was ordered.  When they got the results back from that, the doctor came in and told me that my heart was fine but I needed to talk to my PCP about getting a lung biopsy done soon.  I had the
biopsy done on April 3 (not that bad of an experience). I wanted to be sure of the results before I told anyone what was going on, I didn’t even let my sisters or my folks know that I was having the biopsy done.  I thought I was going to be ok.  I thought I was prepared.  When my doctors office called my that next Monday, April 6, and said Non-small Cell Lung Carcinoma, my world stopped and I didn’t know if it was going to start again.  I told my boss that I had to leave, and he knew that it wasn’t good news.  I went home and cried for about 2 hours.  One thing that I found is there is something worse then having cancer, and that is telling the people you love that you have it.  I had to call my husband crying and he came home.  I then decided to call my older sister and my folks.  I will never forget telling my dad.  I had only heard him cry maybe twice in my 42 years of life, well, I made him cry again and it tore me up.  I found out later that my mother, who was trying to be so strong and
positive on the phone with me, called my older sister and fell apart.

About this time all heck broke loose with new doctors and never heard of tests. Then scaring myself by reading what I could find on-line about lung cancer.  Not a pretty picture with all the statistics.  Anyway, my new oncologist, my husband and I decided that the best approach was to remove my upper left lobe.  At this point, everything pointed to being staged 1A.  When all was said and done, I had my ULL removed April 29.  It came back Stage 3A as one of the nodes did test positive for cancer.  So now I am doing radiation 5 days a week with one day a chemo thrown in for good measure.  This is going to last for 5 weeks, then radiation will be done and I will be doing chemo once every three weeks, but at three times the strengths.  Needless to say I am not looking forward to that.

So far that’s my story.  I hope to be able to add to it for many, many more years to come.  I would love to tell you about the journey that cancer has taken me, both the good and the bad, but I will leave that for another time.

Blessings for all that you do,
Barbara Fougeron

Kasey’s Story

My story, like most of everyone’s here, would more than likely be a book if told in its entirety. Trust me, I am not going to do that here. However, I do feel there are some aspects of it that I feel so much the need to share with all the very special people who make up this site. So here it goes – in skeletal form and for whatever it is worth!

My primary care physician told me over the phone that the CT scan certainly looked just like lung cancer. YIKES! Bronchoscopy done a few days later showed nothing. Boy was I happy but not for long. I was told a biopsy was needed – simple to just make a little slit and grab a little piece. PROBLEM! First indication that what I had was a humdinger. Had to be a CT guided needle biopsy. Took a week to set it up for the surgeon had a difficult time finding someone to actually guide the scan. YIKES again! Nine days after the biopsy we – husband and I – met with the pulmonary doc who was coordinating everything. He had been waiting for a call back from the thoracic surgeon and hadn’t gotten it yet, so we proceeded without his input. It is cancer. It is early stage. It has not spread. You are young (50) and healthy – no heart problems, no diabetes, not anything wrong – just Lung Cancer. We can just go in and cut it out, have a chemo treatment or two and you are cured. My husband and I practically fell to our knees in praise of God. We were at the desk making the surgeon’s appointment when we were called back to the office. Seems that now the surgeon had called and surgery was NOT an option. We would be making chemotherapy and radiation appointments instead. Now it was 5:00 – closing time. So that was it, no more explanation or anything. We made those appointments and headed for home.

Okay I’m making this way too long. The next day I had a call in to the pulmonary doc with a question. He called me back at 4:45 on Friday. He answered my question and then offhandedly mentioned the term pancoast tumor. We hung up. It was the weekend. I know how to use the internet. YIKES three times over. Pancoast tumors are VERY bad news! First thing Monday morning guess what I was doing? And guess who was on vacation?

Not one doctor here in my city had ever seen a pancoast tumor. So you can see how EASY for the misinformation at the biopsy report! I went to Sloan Kettering in New York for a second opinion. They agreed with treatment recommended here and NEVER mentioned they have a renowned pancoast tumor surgeon there. So I began radiation and chemo locally. It took me a while before I realized it was for palliative purposes only. I was told I was incurable, never would be curable, and would NEVER be a candidate for surgery. I was told there was no light at the end of my tunnel. I was told that if the November CT scan did not show significant shrinkage that I would not see flowers this spring. YES, believe it! I was told all that!

Well, I felt that was just not satisfactory with me. Off I went for a third opinion to a very reputable cancer center near Philadelphia. I was sent away by the pancoast expert there. I was in bad shape if a pancoast expert turned me away. I planned my funeral and took care of all those things one needs to take of at a time like this. I prepared my husband whose first wife had been claimed by cancer twenty five years earlier at a very young age. We prepared the children for losing another mother to cancer. It was a very dark time here.

This whole time, September until mid November, I searched the internet day and night. I am sure most of you can identify with searching at 2:00 and 3:00 in the morning! I was a pancoast expert. By ACCIDENT one morning when I googled whatever I googled including the word pancoast, this website presented itself. I found Donna G. who was listed as a 7 year survivor!!!!!!!!! FIRST positive thing in all this time. I PM’d her. She PM’d back with another pancoast survivor, mhutch, (aka MaryAnn). I PM’d her. She PM’d back. We went back a forth a few times and her surgeon’s name came up. He is at the National Institutes of Health in Bethesda, MD. She is in MD and I am in PA. We are neighbors. So I googled the surgeon. I EMAILED the surgeon. He EMAILED me back that same day!!! He saw me the following Tuesday. And the 6 words he said to me are branded into my brain. He said, I think I can help you. MY GOD!!!!!!!!!!!!!!!

So I had surgery and follow-up chemo. I am healing and getting stronger and feistier every day.

The point of MY STORY here though, is the role a website can play. For me it literally SAVED MY LIFE. No matter how long it may be, I DID see flowers this spring and I CAN see a light at the end of my tunnel. I feel each day a gift from all of you.

A Step that Travels Unlimited Roads–Mary Beth’s Story

In 2005 I was about to have my hip replaced due to a congenital defect. A pre-op chest x-ray showed “something,” perhaps a pneumonia artifact, and it was still there 3 weeks later, no bigger. But there was no way I was going to let anything stand in my way of getting that hip fixed! I hadn’t been pain-free for years and now with one leg an inch shorter and no breathing symptoms, I decided to follow up on the chest film later.

With great fear I did follow up with a new internist. He ordered a CT which confirmed a small tumor; a local pulmonologist ordered a fine-needle biopsy, PET scan, lung function studies and, with shocking coldness, told me I had a malignancy (“that means cancer, you know”) and proceeded to relate the grim survival statistics for lung cancer.

The great thing he did was refer me to UCSF and Dr. David Jablons. My husband and I were driving
across the Golden Gate Bridge for my first visit with the doctor when the news reported that Dana Reeve had been diagnosed with lung cancer – and this was the day after Peter Jennings had died. The Reeves lived the next town from us in NY and I began to feel even more overwhelmed and scared.

Dr. Jablons was confident and reassuring in outlining “the plan.” With the help of his wonderful nurse Shayne, I found a local oncologist for the chemo (never get a cancer diagnosis in July/August – most oncologists are on vacation!) and 4 months later Dr. Jablons & his team removed the tumor and the upper lobe of my left lung. My cancer was downstaged to Ia after surgery; the doctor said my tumor was “well behaved,” having shrunk significantly from the 3 chemo treatments. Dr. Thierry Jahan is my dear best buddy and oncologist now and, 2 ½ years after surgery, I have graduated to CT scans every 6 months. I couldn’t have had a more compassionate, talented team to get me through this. I am a survivor – it’s all good!

I won’t say that treatment is easy: thoracotomy & lobectomy are big surgeries and recovery is not a breeze. But now, and for almost 2 years, I work out at a gym, bicycle, walk and do Pilates. We travel the world – chartered a canal boat in England and toured China, climbing the Great Wall and cruising the Yangtze; safaried to South Africa & Botswana, and will be cruising the Lower Danube this summer, followed by a safari to Tanzania where we’ll celebrate our 25th and my 60th! Australia next! Life is indeed good!!

As for those who say that lung cancer screening doesn’t save lives, I couldn’t disagree more. My chest
x-ray was serendipitous, tipping me off to the need for follow-up – if not for that warning, I would likely
not be writing this. It will be wonderful when there are tests other than CT scan, less expensive and less potentially harmful, to screen for lung cancer. And research is underway to develop these. But in the meantime, we need to shout awareness of lung cancer issues to our neighbors across the country; we need to calm our fears & demand screening; we need to contribute to research efforts to develop other screening methods and, finally, we need to fund the efforts of doctors and scientists searching for treatments and cures for this horrible beast, lung cancer.

-Mary Beth Wheeler

A Word from Dr. Pierre Theodore

A recent JAMA paper confirms our view that screening protocols are capable of identifying cancers at early stage when they remain infinitely amenable to surgical therapy. What is controversial in this paper is the finding that this is not associated with improved survival overall in the groups studied for screening versus those not screened. This statistical finding is important as it may be that cancers picked up by screening protocols are slower growing or less aggressive. However to suggest that early lung tumors do not advance, or that early lung tumors do not have the potential to advance to unresectable disease would seem a conclusion at odds with our general understanding of lung cancer and is not a conclusion suggested by this paper. It remains the case that durable long term survival can be achieved by resection of early lung cancers and that screening is capable of detecting early lung cancer.

While demonstrating the link between screening and better overall survival in population based studies is challenging, the strategy of early detection and intervention remains a cornerstone in Lung Cancer management.

We have such a preponderance of anecdotal evidence that lung cancer is survivable too…and this evidence is made up of real human beings who have lived through the process and whose lives have been saved and dramatically extended through early detection. You can read about our survivors here including the founder of the Bonnie J. Addario Lung Cancer Foundation. Although ANY lung cancer survival is an exception to the rule…we must continue to strive to increase the numbers of these “exceptions the rule” and save every life that we can through early detection, screening, and targeted management.”

Pierre R. Theodore, MD
The Bonnie J. Addario Lung Cancer Foundation Medical Board
Assistant Professor, Surgery, UCSF

Jerrold Dash’s Story

Greetings fellow cancer saviors, loved ones, and support persons. My name is Jerrold Dash and I am a two year survivor of Lung Cancer; terminal lung cancer stage 4 BAC (Bronchioloalveolar Carcinoma).

To say I was shocked, surprised, and blindsided by my diagnosis would be an understatement. I exhibited symptoms for several years before my diagnosis on February 1, 2006, but these symptoms were classified as bronchitis, asthma, allergies, and pneumonia. I never expected to be diagnosed with lung cancer being a former collage athlete and non-smoker (50% of all people diagnosed with lung cancer never smoked).

Upon diagnosis, I had no choice but to fight as anyone else in my situation would have done. I was told by my temporary oncologist that I could not beat cancer and he would treat me palliatively with chemotherapy until I died from the cancer. Fortunately for me I had a pulmonary specialist that was sympathetic and could relate to my situation being a young professional raising a family. I was 32- years-old when I was diagnosed and my daughters were 2 and a half and 3 weeks old respectively (I will not reveal my wife’s age).

I endured as much chemo as I could stand, participating in a few clinical trials along the way while waiting for a miracle (a bi-lateral lung transplant). I must emphasize that transplant for someone with lung cancer is just not done, and insurance companies consider the procedure as experimental treatment. Fortunately, I had a pulmonary specialist and doctors at Stanford that would not take no for an answer from the insurance company. I was approved by my insurance company to be evaluated to see if I could be a candidate for lung transplant, which I was. The problem with being a candidate for lung transplant is that you must be within four hours of the hospital performing the transplant at all times, so I packed up my truck in August of 2006 heading West to Palo Alto, CA, not knowing anyone at all and leaving my wife and two young daughters behind in Texas. After several months of waiting and hoping, my cancer did not spread and I got the page a pair of lungs was available and I was number one on the list. The surgeon informed me that I needed to get to the hospital right away. I informed him that I was already at the hospital (eating dinner in the cafeteria) and that I needed to clean my apartment before my wife and other caretakers flew in and saw my messy bachelor’s pad.

In summation, everything worked out for the best I got the transplant (March 2007), and have been working to recover physically ever since. I hope to start running a couple of miles per week starting in March 2008 (if I can get my neuropathy under control, chemo side effect). The best news is that I am cancer free since the transplant.

I think that quickly captures my story, as I am not much of a writer. If you want more details and pictures of my lungs go to my blog (cancer therapy).

Radine Cox’s Story

On Oct. 2004, I woke up with a tightness in my chest. I thought it was bronchitis or maybe pleurisy. When I got to work I went to our Medical Department, the nurses knew I had some mild heart problems and told me this could be a symptom of a lot of things so they told me to see my doctor. I called his office and they told me to come in. When I told my doctor what was happening he immediately sent me to ICU at our local hospital. He called my husband to come and get me. So my kids and my husband took me to the hospital. They put heart monitors on me and took a chest x-ray. Later that night they did a CT scan.

The next morning my doctor told me there was a something on the x-ray and the CT scan verified a mass on my lung. He called in a pulmonary doctor who came in a little later and said he wanted to do a biopsy. So they moved me to a regular room and did a biopsy the next day. I immediately thought “lung cancer.”

I had been a smoker for 20 years. I had used the nicotine patch to quit in 1997.
I was scared. I knew my family was also scared, but we didn’t talk about it.

The next evening a different pulmonary doctor came in to tell me it was malignant. She apologized for having to tell me as she couldn’t get a hold of my regular doctor and the first pulmonary doctor who talked to me wasn’t available.
I was alone in my hospital bed and in shock. How could this happen to me? I quit smoking seven years ago. Things like this don’t happen to me. They happen to other people. What would my family have to go through and how would they handle this?

My husband walked in about two minutes later. The nurse was still with me and she told Mike (my husband). She told us an on-call oncologist would be in later. Mike called my son and his wife to come up. Mike and I cried, talked, prayed and cried some more. What would we have to face? What is going to happen to our lives, our hopes and dreams? All kinds of questions. All of a sudden I had a calm feeling and told my husband she didn’t tell me I had a death sentence, she said I had cancer.

Later in the evening, the oncologist came in to talk to us. He said I had adenocarcinoma in two spots. One in the upper lobe and the other in the lower lobe. I needed a brain scan and a pet scan to see if the cancer had metastasized.
After the pet scan, I had an appointment to talk to my oncologist, Dr. Velasco, about a plan for me. I took my husband, my son and daughter-in-law with two of my pastors. Dr. Velasco said he needed to know if this would be operable. So an appointment was made for me to see a Cardiothoraic surgeon in St. Louis, Missouri, at Banes Hospital.

When I saw him he told me the cancer was not operable, but he wanted me to try chemotherapy and radiation to try to shrink the masses by at least 30% so they would be operable.

After three treatments of chemotherapy and 25 radiation treatments in a six- week period the cancer had shrunk by 39%. Praise the Lord! This was like a double-whammy. It knocked me really hard. I was pretty weak and of course lost all my hair.

So on Feb. 1, 2005. they removed most of my left lung and cleaned out all the cancer. I was now cancer free. I do not remember much the week I spent in the hospital. Of course, the recovery time has been a long time coming. I needed help getting in and out of bed. Getting a shower and getting dressed. I was not used to having help with such small details.

I still have fatigue, shortness of breath and neuropathy. I use an inhaler and do cardiopulmonary rehab three times a week. I have to balance my schedule as I get fatigued so easily. What a life style change.

I am now a part of the Coalition for Smoke Free Macon County here in my Decatur, Illinois, which is a part of the Health Department. have a passion, now, to somehow find an early diagnosis for lung cancer and my goals are aligned with The Bonnie J. Addario Lung Cancer Foundaion. My goal now is to get a Smoke Free Illinois. The Senate has passed the bill and now it has been passed to the House. I have been to our state capital rallying with the Lung Cancer Association and speaking to my legislators. I also write letters to the editors of our local newspapers. I have had articles written about my story and a feature on our local TV station.

Together I believe we can detect lung cancer earlier enough to save countless lives. I am a survivor and I look forward to making sure there are many, many more.

Margaret Duckhorn’s Story
Both my mother and sister died of lung cancer. My sister’s was the same as mine. Her story motivated my action.

My mother died about 6 months after they discovered her lung cancer. Several years later my sister had a routine chest x-ray after the birth of her second child and they discovered a lesion on one of her lungs. The doctor’s were unsure what it was and decided to watch it. It remained unchanged for a long time and they thought it might be an encapsulated infection. She had no symptoms, so they just followed it. She even got a second opinion from my mother’s doctors. About 2 years after they discovered it she started to have some symptoms and they then decided to do a biopsy and then they discovered it was cancer. She underwent chemo for a number of years, but they were unable to control it and she died several years later.

Because of my mother’s and sister’s histories I requested that my physician do a chest x-ray periodically. My doctor said that there was evidence that CT scans were a more reliable indicator than a chest x-ray. He therefore was able to convince my insurance carrier that I needed a CT scan. I wanted to have this done as a base-line, but when they actually did the CT they discovered a lesion. They followed with a PET scan that showed some cell activity in the area of the lesion. I decided to have a second opinion and went to Dr. David Jablons, a specialist in lung cancer at UCSF. He felt that the lesion should be removed. As it turned out, it was indeed a cancerous lesion, but fortunately in the very early stages with no lymph node involvement. I am now 2 and a half years cancer free (as of March 2007) and recently had a CT & PET scan which were clear. I am sure that if I had not been pro-active about a base-line scan and if my doctor had not been willing to do the CT & PET scans that I might not have discovered the lesion until it was too late.

I might add that none of us were smokers. My mother and I smoked socially for a few years, but that was well over 40 years ago. My sister never smoked.

Eddi Van Auken’s Story

Eddi, Kizzy,Van, and Wendy Van Auken

In the Fall of 2005 I had a chest x-ray which was a follow up to a cough I had the previous year, in 2004, a few days before a family vacation to Russia. I was wanting to be sure I would not require medical care in an unfamiliar medical environment. I got the OK from my doctor to proceed on vacation, which I did, and when I returned, my primary care physician asked me to do a follow up chest x-ray within a month or so of my return, as the written report on the chest x-ray noted a small amount of fluid on my lung. I did not get this follow up x-ray until the following year, although my doctor reminded me to do so several times.

When it became time for my yearly mammogram in the Fall of 2005, I got the chest x-ray at the same time. I was hoping, like all women, the mammogram would be fine. It never occurred to me to be worried about my chest x-ray. I was not coughing and I hadn’t smoked in 18 years. No problem. Wrong,wrongwrongwrongwrong.

The radiologists at a local hospital saw something on my right lung they didn’t like, but they couldn’t say what it was. They asked that I come back in for another chest x-ray, so they could see the lung from another view. This second chest x-ray confirmed that they still didn’t like what they saw. They and my primary care physician suggested a CT Scan, which I had immediately. It revealed a small tumor, and a lung biopsy was suggested to see if the tumor was cancerous. I declined this procedure and went to UCSF under the care of Dr. Pierre Theodore and Dr. Thierry Jahan who reviewed my CT Scan ordered a Pet Scan and found metabolic activity which in fact proved to be a small Stage 1A cancerous tumor. Clearly, and without hesitation, we wanted this out as soon as possible, and at this early stage. The tumor was completely removed with minimally invasive surgery, along with the upper lobe of my right lung. I was in and out of the hospital in three days and have no complications or discomfort at all. I am considered cured, which as my doctors said, they rarely get to say to lung cancer patients. I have had no chemo, and no radiation therapy. My follow up care consists of a contrast CT Scan every three months for two years, and twice a year after that. Almost one year and a half away from my surgery (as of March 2007), my health, my CT scans and blood work remain exceptionally normal.

I am a statistic in the Survivor Column, not in the Mortality column. With out the technology of the CT Scan, and the informed intelligence of the medical professionals who did not hesitate to recommend it, and who knew the urgency of immediate treatment, I would be a dead person.

I am a Lung Cancer Survivor, and there are many others, so something about the way we are approaching early detection is working. While I understand that there is some discussion about the benefits of CT screening for lung cancer among researchers, there is no such discussion among Lung Cancer Survivors…their friends and families. We know why we’re here…it’s because we were given opportunity…the option…to choose between survival and mortality…between early detection by CT Scan, or undetected late stage illness and almost certain death. It’s not a tough choice.

Ina Stess’s Story

It was the middle of February 2003, an ordinary day filled with ordinary chores, so-so weather, and a pesky bladder infection that didn’t seem to want to clear up, even though I was taking Cipro. My day, and my life changed very dramatically around 11:30 a.m. when I peed and bright red blood filled the toilet. I immediately called Dr. Cynthia Morris, my family doctor, and her response was that I needed to get a cystoscopy to rule out bladder cancer. I don’t remember all the thoughts that were racing through my head at that moment but I do remember saying, “You’re crazy, I can’t possibly have bladder cancer.” My husband was in L.A. on a business trip (aren’t husbands away just when you need them the most?), and I called him on his cell and told him to get on the first plane home. I then called my mother, my two sons, my best friend…everyone I could think of that would share my grief and terror. All my adult life the cancer I feared most was breast cancer. I am the only woman in my family that has not gotten breast cancer, which I’m told, raises my odds of getting it.

The next day my husband and I met with Dr. Morris, who said I needed to have a cystoscopy. I elected to go to my husband’s urologist, Dr. James Palleschi, and he was able to see me the next day. He performed the cystoscopy, and my worst fears (at least at that point) were realized. The tumor was quite large. I had the resection on March 5. Following the resection I was treated with BCG, the standard first-line treatment for superficial bladder cancer. Three months later, a follow up cyctoscopy revealed another tumor, which was resected, and at that point my urologist made a decision to refer me to Dr. Peter Carroll, Chief of Urology at UCSF, and a friend and former colleague of his. What an incredible stroke of luck in so many ways. Dr. Carroll put me on the next level of treatment: BCG plus alpha interferon. For the next 11 months I was cancer free, and then my next scheduled cystoscopy revealed another tumor, which Dr. Carroll resected. After three tumor resections and two levels of treatment, we seemed to be out of viable options except for the bladder replacement surgery known as radical cystectomy, an 8-10-hour, life-altering operation. Dr. Carroll reviewed my chart, looked at the CT scans, and brought in a medical oncologist to review the various options with my husband and me. At the conclusion of our session, we agreed to the preemptive surgery, which would remove the diseased bladder, replace it with one formed out of my colon tissue, and hopefully increase my odds of living a normal life.

The surgery was scheduled for Monday, June 23, pre-op was Wednesday, June 18, which included a chest x-ray. On Friday, June 20, at 10:00 a.m., I received a call from Dr. Carroll’s nurse who asked me if I had eaten anything that morning. I told her just a cup of coffee. I immediately asked her what the problem was, and she said that the chest x-ray showed a mass in my right lung. I was not to eat anything and to head down to UCSF for a CT scan to determine what the mass was. At 6:00 p.m. my husband’s cell phone rang and a urology resident at UCSF informed us that it was a carcinoma. The bladder surgery was cancelled, and I had a needle biopsy the following Thursday, which confirmed that it was non-small cell lung cancer. Dr. Carroll referred me to Dr. Jablons, another incredible stroke of luck, who removed a tumor the size of Bolivia, and the middle and upper lobes of my right lung, on July 28 . The good Doctor was a real trip. He never just strolled; he bopped. After the surgery he would magically appear in my hospital room, ask me why my lazy ass was still in bed, and with a wink of his eye, just as magically disappear. This happened four times while I was recovering in the hospital, despite the fact that the nurses said he only visits patients when they are not doing well. I’m here to tell you, no small thanks to Dr. Jablons, that I was doing great, so it must have been my incredible charisma that brought him to my room. Or perhaps he wanted knitting lessons that I was giving to some of the nursing staff and women doctors.

After about three weeks of recovery, a meeting was scheduled with Dr. Jahan to discuss chemotherapy. When we first met him, we were struck by two things: he had a smile a mile wide, and enough disease support ribbons on his jacket to put a new top on the New Orleans Superdome. What a radiant human being. He inspires confidence and hope like no one we have ever met, or even hope to meet. He started out by presenting all the reasons I should agree to chemotherapy. The interesting thing was that I never considered not having chemo. I was stage 1B and Dr. Jahan said that patients with early stage often decide not to have chemo. I told him that it was a done deal as far as I was concerned. He recommended that I have it administered in Santa Rosa and he would transmit my chart to an oncologist that he refers many North Bay patients to.

I am now 27 months (as of October 2006) without a recurrence of my lung cancer, and Dr. Jahan says that puts me in a category with only a 5% chance of recurrence. I’m going to hold him to that.

As far as my bladder cancer, I’m in a UCSF study group on an experimental program that hopefully will end next April or May, and I look forward to being free of that cancer, as well.

Postscript: While visiting my cousin in Martha’s Vineyard in early October I choked on a piece of duck in a horribly overpriced French restaurant, and to my amazement and relief, my husband instantly recognized what was happening, and leaped up, threw my chair back, and proceeded to successfully perform the Heimlich Maneuver. The piece of duck popped out and flew across the table. While he was doing it, I thought: “Bummer! I’m beating two cancers but I’m going to die because of a lousy piece of duck.” The people at the surrounding tables were in a state of shock at what just happened. After I sat down to catch my breath, the waitress stepped forward and politely asked me if it would be OK to replate my dinner. There was a moment of complete silence, and then everyone around us burst out laughing. My throat hurt too much to laugh, so I just waved her off.

Sandy Hearn’s Story

Sandy Hearn and Michele

We can live without our breasts and without our prostates, but we cannot live without our lungs. It’s time all of us get over the predilection of smoking being a reason of unworthiness. -March 17, 2007

(Letter written on July 11, 2003 to Mark Laret, CEO of the UCSF Comprehensive Cancer Center)

I have written this letter so many times over the past two years, and could never get it just the way I wanted. My life was saved by two men I just finished reading about in Thoracic Today summer 2003, which I received in the mail yesterday. It has truly made me wonder how many miracles these men have performed. Of course I feel unique, as there was a real and special reason my life was saved. I realize the many wonderful stories and lives changed by your staff are numerous, but I would truly like you to hear mine. You saved my life. My story is a very long one. I just turned 56 on the first of July. I will spare you most of those 56 years and and begin on May 23, 2000.

My husband and I had been on vacation in Cancun and I had come home with a cough feeling quite ill. I went to a local doctor who would see me during my lunch hour. He scheduled me for an x-ray, which I had that week. I was told I had the start of COPD and should stop smoking. I followed his advice, and quit smoking. Things were all right the following year. I was employed by the Superior Court and had been given the largest criminal calendar in the country and was very proud of my work. I was tired, and run down, so that year my husband and I went on a vacation for a rest.

When we returned I was not rested and continued to feel run down and tired. I ended up unable to breathe and in an emergency room being treated for a possible heart attack. The emergency room staff took an x-ray of my chest, and the doctor informed me that I had a mass on my right lung. I was told I would be transferred to another hospital, St. Helena, in the Napa Valley. I was then referred to a heart surgeon in that hospital. I was subjected to all the various tests. The doctor scheduled me for surgery the next day. I was told he would do the best he could, but may end up closing me up. My lung capacity was quite bad at that point, and he informed me I would be an invalid if he could remove my lung at all. I questioned him regarding my chemotherapy, and he told me he would discuss that later, depending on the outcome of the surgery. As we were speaking of my progress he discovered I had a very bad cough and cold. He decided to postpone my surgery for a few days, gave me antibiotics and sent me home. He asked me to obtain any medical records from the past, so I picked up the x-rays I had taken the year before. (To the day by the way May 23, 2000 and May 23, 2001).

Needless to say my family in Southern California was going bezerk. My sister (miss computer whiz) faxed me some information regarding your hospital and circled Dr. Jahan and Dr. Jablons names and pleaded with me to visit for a second opinion. My niece, Sandy Daniels was also conducting an investigation of her own. Her husband, my nephew, Howard Daniels works for ABC and had mentioned to me to Arnie Kleiner, who spoke with Joe Ahern who recommended UCSF and mentioned me to the “CEO of UCSF.” Anyway, I made the appointment using all of the above and was scheduled to see Dr. Jahan the next week. I went to my appointment with the surgeon at St. Helena, took my records, and listened to his plan for me. He wanted to remove my lung and gave me a very grim prognosis. He then took the x-ray from 2000 from the jacket and gasped. The tumor, which was killing me, was there on that film so plain I could see it myself. Frightened is the word that comes to mind. I had been calm and accepting to this point. I remained calm but not accepting. I am not afraid of dying. It is all the other stuff that really frightens me-suffering and having my family see me suffer. That is not acceptable. I postponed my surgery and informed him I would like to seek a second opinion.

I met with Dr. Jahan and Dr. Jablons. Each took time not only to explain everything to me, but to do this with compassion, honesty, and concern for my wishes. My fear vanished. I now had a plan of action and two doctors who would help me through whatever lay ahead for me and my family. They never promised me anything but respect for my wishes. I am a miracle they made happen. Every day that I live is a precious gift. I do not believe in holding on to life at all costs and I do not believe in feeling sorry for myself. I would not be alive if all the people, my family, Mr. Ahern, Mr. Kleiner, Dr. Jahan and Staff, Dr. Jablons and you had not helped me in my journey to live.

Dr. Jahan was a wonder during my chemotherapy prior to my surgery…my tumor was not responding as he would have wished, but he persevered. He is the most human of human beings and such a sense of humor. He was always there for my husband and I. He is passionate about his work and equally compassionate with his patients.

Dr. Jablons was awesome…he does not like to operate if he feels he cannot remove all of the cancer but would do what he could, due to my history. He is truly a genius and performed magic during my surgery. (He told me he had help and I believe he did.) I had many people peeking in at me while in the hospital wanting to see the miracle woman.

June 4, 2003

The last visit I had with Dr. Jahan, I brought with me a picture. I gave this picture to Dr. Jahan and I told him that he and Dr. Jablons saved my life, and there was a reason for it.

When I was a very young girl I gave up a baby, at birth, for adoption. I was not allowed to hold her. The Los Angeles County Bureau of adoptions said they found a wonderful family for her. I named her Lydia. They named her Michele. I did not know that until five months ago.

She has been trying to find me for most of her life. I had been registered with many organizations, and needless to say so many more when I had no time left. She found me through the Salvation Army in February. Her adoptive mother passed away when she was 23-she and her mother never bonded. Her adoptive father, with whom she was very close, passed away, of lung cancer, the day I had my surgery at UCSF. He lived in Florida. He and his wife had been divorced when Michele was only 12 years old. My daughter lives in Saranac, New York, with her husband and four children. She has met her four brothers. I have been able to hold her in my arms and touch her. I have been able to baby-sit my grandchildren. I have seen all my children together for the first time. She has met her grandparents, who have lived with overwhelming guilt for 37 years. She holds no animosity towards anyone. I speak with her almost everyday. She wants me in her life and she knows I love her. She has wanted this all of her life. The healing happened the day we met. It was as if we had never been separated.

Oh, her husband is a thoracic surgeon at Saranac Lake Hospital, New York.

I cannot express to you, or anyone, how I feel. It is beyond explanation and absolutely, absolutely a dream come true.

My surgery, my miracle, was September 25, 2001. Thank you from the bottom of my heart and soul.

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