Category Archives: Diagnosis of lung cancer

Twelve. And counting.

brown-white-number-rounded-twelve-rectangle-12

Twelve years ago today I was forty five years old, my youngest child was seven and I was sitting in a hospital bed. I’d been admitted four days earlier after several weeks of antibiotics for a walking pneumonia that just wouldn’t clear up. A CT scan the previous Monday had revealed a large mass in the lower lobe of my left lung and the differential diagnosis was recalcitrant pneumonia, fungal infection or a neoplasm.

I didn’t know what a neoplasm was but my husband’s face had fallen when my general practitioner spoke that word. After she left the room he explained that it was another word for cancer. We’d then driven directly to the local hospital where I was placed on IV antibiotics.

Those first days were awful. I was in a room with three other woman, one of whom was dying and another who’d had a severe asthma attack. As I lay in bed I worked incessantly on my laptop researching everything I could about lung cancer. One thing stood out–the dismal five year survival statistics–15%.

The day of my biopsy the patient before me was a prisoner, handcuffed to his wheelchair and accompanied by two officers. When my turn came the surgeon performing the procedure told me that it was highly unlikely that I, a young never smoker, would have lung cancer and that what he was seeing on the CT scanner looked like a fungal infection.

After the biopsy I had to lay very still for several hours without speaking so as to minimize the chances of a pneumothorax. This was difficult as one of the attendants was someone I casually knew, and she kept asking me questions. My lung did partially collapse, as it now has every single time I’ve had a biopsy.

On Thursday morning my doctor came to my room first thing. My husband hadn’t arrived yet and she stalled, telling me a protracted story about her daughter and some dramatic production that featured a field of sunflowers. She said “You know, a sunflower represents hope.”

When my husband entered the room my doctor got right to the point. “I’m sorry but you have lung cancer.”

I really don’t remember anything she said after that as both my vision and my hearing seemed to have suddenly constricted. I had this sensation that I was in an airplane and it was going down. My husband would end up having to call my family members–I was simply too devastated to speak to anyone.

However something incredibly fortunate happened later that day, something that changed everything.

I was assigned an oncologist, who spoke to me only briefly. That evening my husband called him with a question and this oncologist was incredibly rude. We decided that he was not someone to whom I would like to trust my care. And so my husband immediately called one of my dearest friends, whose husband was a surgeon, asking for their opinion as to a good doctor.

Her husband had done his residency at Massachusetts General Hospital, and he gave us the name of the thoracic surgeon he had worked under. And that is how I ended up at a major research center rather than a local hospital. Because of one rude oncologist. To whom I actually now owe a thank you.

#twelve&counting

Wish upon a star

The night before last I wakened in the wee, wee hours and couldn’t fall back to sleep. I lay there thinking about all the things I wanted to do and how long it might take to accomplish them all. I thought to myself “I need another thirty years”. As I was thinking this I turned my head to look out the tall windows adjacent to my bed and at that moment a shooting star streaked across the night sky.

Boom—as my kids might say. There and then I decided it was an affirmation. In the past decade I have sometimes measured my life span in months. At my most optimistic I plan perhaps two years out; in the absence of an effective therapy and at the rate my cancer seems to grow, that might be a reasonable projection.

Denial has never been my style. And yet…I am also a bit of a dreamer and I believe in the power of a positive attitude. To wit—when first diagnosed with lung cancer I understood only too well the odds that I faced with an overall five year survival statistic of 16%. When you are stage IV, as I am, that statistic drops to a dismal 4%. I have helped myself deal with this reality by picturing a bell curve—in my mind’s eye I am waaaaay out on the end.

In reality I have achieved outlier status; living well beyond my ‘expiration date’. However, due to the pernicious nature of my disease I am unable to relax. As I once said to a friend whose cancer had taken a turn for the worse, sometimes the thing that’s trying to kill you just keeps on trying.

Two nights ago a shooting star gave me the courage (abandon?) to allow myself to believe that I could live another thirty years. I mean, what’s the harm? Suddenly my future stretched before me like a Texas highway—almost endless.

It’s a view that I could look at, well…forever.

Alta

Alta, yet another of my INSPIRE friends, speaks of the importance of listening to one’s body. A delayed diagnosis is a common scenario in lung cancer, and for never smokers, tell tale symptoms such as a chronic cough are generally attributed to benign causes. Alta urges everyone to become their own advocate:

When complete silence surrounds me I detect a humming sound coming out of my chest cavity. This reassuring high pitch wheezing is a constant reminder that my lungs are still functioning. They started this musical whistling duet about two and a half years ago. From time to time the palpitation of my pounding heartbeat merges with the duo, which adds tempo to my organ’s musical talent. We are all guilty of forgetting how vital our lung function is; then the silence of their fine tuning gets damaged and we remember. A noisy interruption in their muted function is similar to the loud sound a siren makes announcing the arrival of a dangerous storm. We then have the choice to either cover our ears until the warning goes away or do something about it immediately. A simple examination by a doctor will frequently but not always help you distinguish whether you have a minor case of bronchitis or something more serious. Lung disease does not discriminate; no one is spared from any respiratory endangerment; even those who do not smoke or have never smoked.

For quite a few years I chose to ignore the warning signs and as long as it didn’t stop me from enjoying my early morning runs; why worry? With time the elusive little cough had all grown up and began to rudely interrupt my discussions and to slow down my exercise routine. Neglecting what is important in life isn’t a trait I have in my personality. I rarely ever missed my annual medical exam and in spite of my children’s occasional disappointments; I always prepared wholesome meals. Nonetheless, I was so busy caring for my family’s welfare that my own sometimes went unnoticed. Cigarettes never tempted me and I have always been diligent in maintaining a healthy existence. There was no plausible reason for my doctor to suspect that my tenacious cough was life threatening; subsequently, I was misdiagnosed from 2007 until 2010, when I finally demanded a chest x-ray.

After the Pulmonary Specialist read my questionable chest x-ray; he immediately asked me to have a Thoracic CT scan done which was followed by a PET scan: Per the Specialist’s request Tom and I went to see him the day after the PET scan was done. The doctor sat down directly across where I was sitting, took a glance at my husband Tom, look at me and said with a soft stern voice:

“Alta, you have lung cancer.”

The sound of the warning siren was so loud I became deaf to every word that was said after that.

I was referred to a Thoracic Surgeon and on August 19, 2010, at 8:00 in the morning the surgery was scheduled. I had a Thoracotomy/Lobectomy of my upper right lung and during the surgery the doctor had no choice but to break and spread two of my ribs. I have a concave shaped rib cage; “concave” meaning it turns inward versus turning outward; which made the surgery a complicated one. Nearly three hours later a two centimeter Bronchioloalveolar Carcinoma Non-Small Cell lung tumor was removed along with my whole upper right lobe. The lymph nodes surrounding the cancer area were taken out as well, which was a good thing because a minimum of A-typical (pre-cancerous) cells were found after the biopsy.

The day of my surgery I woke up lying on a hospital bed in the ICU; two plastic draining tubes were protruding out of my operated rib cage; an intravenous needle was inserted and taped on top of my right hand administering morphine and another needle was located in the fold on my left arm providing antibiotics. A lumbar epidural catheter was embedded near my spinal cord between the shoulder blades injecting an anesthesia from a plastic pouch. Two more small plastic tubes were placed in my nostrils passing oxygen through my lungs. I swallowed a powerful pain killer every three hours and even though all these precautions were taken; unless I was knocked out with a sleeping agent, I still felt an excruciating pain racing through my body. This physical state lasted for seven days and eight nights. At the end of my hospital stay and still paralyzed with pain; I felt a thin stream of tears flowing down my cheeks and I thought, “I should have had a chest x-ray sooner. Why didn’t I get an x-ray?” I don’t know if my life has been extended by the painful trials I’ve been through: I just wish I had listened to all the warning signs my “subtle little cough” was revealing more attentively.

Please broadcast the importance of an early chest x-ray screening. It takes very little time and who knows; it may spare you from years of physical trauma and a lifetime of worries.

Alta

What next: the week post diagnosis (looking back to April of 2005)

The malignant mass in the lower lobe of my left lung

The malignant mass in the lower lobe of my left lung

I cannot imagine what it would be like to face a diagnosis of cancer without a loved one beside you.  My terror was so great; I remember the room went white and all I could hear was my pounding heart.  I had never felt either so alone or so afraid.  My husband David held me, but he also had to hold himself together.  I couldn’t see or hear, and I certainly couldn’t think.  He would have to do that for both of us.

One of the first people my husband called with the news was my good friend Melinda.  Her husband, Kihan, was a surgeon and he had done his residency in Boston, and we wanted his advice.  I had been assigned a thoracic surgeon, but neither David or I liked him. Kihan strongly recommended Dr. Douglas Mathisen at Massachusetts General Hospital.  We were able to arrange a consultation with Doug for the following Thursday.  In the meantime, a bone scan, MRI of my brain, and a PET scan were all scheduled.

David placed all the phone calls to our families and friends.  I didn’t want to talk to anyone, nor did I want to see anyone.  I was frightened, I was sad and I was angry.  Being diagnosed at the age of 45 with lung cancer, having never smoked, felt every bit as random (and as unlucky) as being struck by lightning.  I found myself wishing ridiculous things, such as, “why couldn’t I have gotten breast cancer instead?”:  not only did breast cancer have far better overall five year survival statistics (100% at stage I, and 20% at even stage IV), but it had sisterhood, massive fundraising and pink ribbons.  Instead, I had a 15% overall five year survival rate, the “did you smoke” question from just about everyone, and an invisible ribbon as a symbol of my disease.

I was no stranger to challenges in my life, but why had this one come my way?  It all seemed terribly unfair.

I had a lot to learn.  Life isn’t fair:  not to me and not to anyone else either.  I had to go to a very dark place to finally understand that, and to become, in an odd way, at peace.  It was OK:  not as in everything was going to be alright, but rather, it was what it was.  I quickly tired of asking why and moved onto what. What do we do now?  We would know more after our meeting the following week with Dr. Mathisen.

Hearing the words “you have cancer “

In April of 2005, when my pneumonia persisted despite three weeks of antibiotics, I was finally given a CT scan.  The scan suggested the possibility of a more ominous diagnosis:  if the mass in my left lower lobe wasn’t pneumonia or perhaps a fungal infection, than it could be lung cancer.  I was admitted to a local hospital, where I was placed in a room with three other patients.  I was given antibiotics intravenously as we awaited a biopsy.

This was a hellish time for me.  I was scared, one of the women in the room appeared to be dying, and the woman in the bed directly next to mine was a histrionic who had been admitted to the hospital with an asthma attack.  She commanded, and got, a lot of attention.  I put on my iPod and tried to drown out the sound of three different televisions.  By the third day, I was finally moved to my own room and so at least I had some peace and privacy again (well, as much as is ever possible in a hospital).

On day four, I was wheeled to the surgical wing where a needle biopsy would be performed.  The patient directly in front of me was handcuffed to his wheelchair and accompanied by a police officer.  I didn’t pose a flight risk, but was advised not to speak and to hold very still both during the procedure and for several hours afterward, as there was the possibility of a lung collapse as a result of the needle puncturing my lung.  I was given a partial sedative and a black dot was tattooed on my back directly above the suspicious mass.  A needle was inserted into the dot and a small amount of material removed for the biopsy.  In the recovery room, the surgeon told my husband and me that he felt this was a fungus, as it was a very atypical presentation for lung cancer.

In spite of my efforts to remain still, my lung partially collapsed.  An IV in my arm clogged as well, and my forearm ballooned up.  Even given the minor complications, I felt pretty calm.  I think I was just so sure that I didn’t have lung cancer. Statistically, a diagnosis of lung cancer at the age of 45, having never smoked, was highly unlikely.  I clung to that statistical improbability like the lifeline I hoped it was.

The results were to be available by the following morning.  My doctor came by on her early rounds, but my husband was not at the hospital yet.  She passed the time until he got there talking about her daughter’s role in a play at school.  I remember her describing sunflowers as part of the stage scenery, and how the motif had something to do with hope.

And then David was at the hospital and the next thing I knew she was saying to me those very words none of us ever wants to hear:  “I’m sorry, but you have cancer”.

A moment earlier I might have been in a plane;  perhaps flying over a field of sunflowers.  But then, suddenly, the plane began to hurtle toward the ground.  I struggled for composure even as fear and intense nausea overwhelmed me.  It felt like a dream, a very bad dream.  And in truth, the nightmare was only just beginning.

Clues before a missed diagnosis

When I tell people that I have lung cancer, they almost always ask me if I smoked. Many people with lung cancer are offended by this question, but I view it as an opportunity to educate. There is no getting away from the fact that lung cancer has been stigmatized by the perception that it is a disease of smokers (hence, brought on by their own risky habits). I don’t mind being an ambassador for an unexpected face of lung cancer: young, never-smokers. Nor do I feel that anyone deserves to have lung cancer, whether or not they smoked.

The second question is usually along the lines of “how did you know?” and “what were your symptoms?”. People are genuinely curious about (and afraid of) cancer, so if you are willing to talk about your own experience, they really do want to know. And why not. If you tell someone what to look for, they may someday avoid the tragedy of a delayed diagnosis.

I am certain that I would have been diagnosed earlier had I been a smoker.  Even though I was developing symptoms that were suggestive of lung cancer, my status as a never-smoker meant I was in a low risk category.  It would take somebody who could think outside the box to consider that possibility.

Unfortunately, a much greater tragedy had some bearing on my delayed diagnosis as well.  In the late spring of 2000 I went to see Fred Rimmele, my doctor at that time, regarding progressive weakness in my left hand and arm. Fred was a relatively new MD and I appreciated his enthusiasm, his curiosity and his energy.  I felt that he took my concerns quite seriously.  He ordered a nerve conduction test and made an appointment for me with a neurologist as well.   He also ordered a chest x-ray.  His notes from that day read  “I would like to do a chest x-ray to make sure that there are no chest lesions which would be very unusual in this young, non-smoking woman, causing brachial plexus problem.” The chest x-ray was clear–but Dr. Rimmele was aware of something that I had no inkling of.   It is possible to have early symptoms from a paraneoplastic syndrome:  an immune response on the part of the body to substances produced by the tumor.   One manifestation can be muscle weakness.

No clinical reason was found for my symptoms although I continued to follow up with a neurologist.

In June of 2001, I went to Dr. Rimmele with another complaint–nodules on my fingertips.  He sent me to a rhuematologist who also ordered a chest xray.  Once again, I was unaware that digital clubbing was another possible indicator of lung cancer.  This x-ray appeared clear as well.

I had not yet developed shortness of breath, but I believe that it would have been only a matter of time before Dr. Rimmele connected the dots.

And then the unimaginable happened.  Fred Rimmele was a passenger on one of the planes that crashed into the Twin Towers on 9/11.  It was unfathomable that he was gone: such a good guy and a fine doctor as well.  I was devastated.

At this time I was referred to a new general practitioner at the same clinic.  She was gentle, seemed caring, but was terribly complacent.  And in the end–I think she was lacking in imagination.  It is still hard not to imagine how much earlier my cancer could have been caught had she not waited so long to order a CT scan.

In April of 2003 I came to this doctor with a complaint of shortness of breath. There were also specks of blood in my sputum when I coughed (hemoptysis). She ordered a chest x-ray which reported that my lungs appeared to be clear.  In the absence of another explanation, she diagnosed me with adult onset asthma.  I neither wheezed nor had asthma attacks, but my PF’s (peak flows) were low. Even as I developed a chronic cough, hoarseness, and recurrent infections, no other cause was considered.  For two full years I was (mis)treated for asthma.

By January of 2005 I had begun to feel fatigued and unwell in general.  When I lay down at night, my lungs made an awful rasping noise.  I began to have trouble swallowing.  Finally, in March of 2005, I was coughing up a copious amount of blood.  I saw the on call doctor in the clinic on Friday, March 18th.  He felt I had a virus and sent me home.  By the following Monday I was much worse and returned to the clinic to see my doctor.  She ordered a chest x-ray which showed what appeared to be pneumonia in my left lung.  After three weeks of antibiotics and two more x-rays–it was clear that something else was going on.  The radiologist’s report read:  “The lack of change over approximate 3 weeks raises concern for alternate diagnoses, such as atypical pneumonia, abscess, bronchoalveolar cell carcinoma, or a lung mass”  A subsequent CT scan found a large consolidated area that it said was “suspicious for neoplasm”.

I was not familiar with the term neoplasm, but the grave look on my husband’s face indicated the severity of the situation.  I was admitted to the local hospital where I was treated with intravenous antibiotics as we awaited a biopsy.  I also began to educate myself about lung cancer:  just in case.