Tom Galli

John, Maybe but I'd be persistent. I'd try it another way. Call your pulmonologist practice administrator and tell them to process a referral to one or several of the oncologists on your list. There ought to be an abundance of information in your medical record to justify such a referral without having to go back to the pulmonologist. But, did you know that Murphy was a medical practice administrator? If one can screw something easy up, they will. If it were me, I would remind my pulmonoligy practice that I already paid for time and consultation and desire they process my request for an oncology referral. Then I'd show up at the practice office if they didn't react to a phone call. When I showed up, it wouldn't be pleasant! OBTW - ensure you get a complete copy of your medical record including all images and test reports. You paid for that also and by federal law have an unfettered right to it. Stay the course. Tom

Taina, I understand your parent's reluctance. They are trying to protect you. How can you help your mother? Two ways. First, I would be her cancer encyclopedia. I'd research all available information about her form of lung cancer to be able to answer questions or assist in medical consultations if she asks for help. She may ask for your help in the future. Here is a good place to get started in your research - https://www.lungevity.org/about-lung-cancer/lung-cancer-101/types-of-lung-cancer/lung-adenocarcinoma If you have questions about your research, ask them here. Someone at LUNGevity will be able to get you an answer. Second, I would continue to be there ready to assist or help. I can't know your mother's mind, but lung cancer was a very frightening experience for me. I didn't want to talk about it. But, my wife's continual presence and her interaction with my doctors was beneficial to my treatment. She asked the questions I was too afraid to ask. I wouldn't feel selfish. Parents naturally want to protect their children no matter how old they get. I can remember my mother bundling me up with blankets after an infusion because she didn't want me to catch a cold. My mother and wife were there and I knew they were there and their presence was beneficial. Let us know how your consultation goes at the end of August. Stay the course. Tom

Julie, Ouch! Okay. Pick yourself up and dust-off and give Tarceva some time. I understand the concern about radiation and scans but undetected cancer is so much more dangerous. Doctors need to understand where it is. For example if it is in your bones, you may be put on several courses of Zometa to strengthen your bones. Zometa does not attack the cancer but kick-starts the process of allowing bones to repair cancer caused damage (at least that's the way this civil engineer understands its function). MD Anderson is a good place. Since you are a distant consultation, ensure you have all the administrative "Ps and Qs" ironed out before you arrive there. I've heard about some unpleasant experiences from folks who arrived for a distance consultation and didn't have this or that form completed. And, as you probably know by now, most of those forms have to do with payment. Chin-up! Stay the course. Tom

Renjj, I was fifty-three at diagnosis and was a smoker. But, I'm still here! Stay the course. Tom

Skmcornett, Welcome back. It has been a while. Very glad your team found and resected the thyroid. Actually, I've read that one keeps their initial stage of diagnosis regardless of further metastatic activity. So I was diagnosed Stage IIIA or IIIB (on the border) but when the cancer spread to my remaining lung, I was still staged at IIIA or B. Regardless - just a trivial point. The important point is you are here, in the right framework, ready to lock-and-load-and-survive-and-thrive! Good for you! Go have a good PET scan two weeks hence and come back and tell us the good news! Stay the course. Tom

John, Welcome here. Wow! Tough choices! Knowing what I know about lung cancer, I'd advise two things: (i) consult with an oncologist and (ii) let the oncologist make the call about the PET/CT or biopsy. A pulmonologist plays a very important role in treating lung disease; an oncologist treats cancer. If you pulmonologist suspects cancer, you ought to be seeing an oncologist. One note of caution, however. The best lung cancer treatment results stem from early finds. If this is cancer, from you description of the problem, it could be an early find. I'd want to find out one way or the other. So, I'd be seeing an oncologist, pronto. Stay the course. Tom

Tania, No need to apologize. Lung cancer is a universal language From your description, I conclude that your mother had surgery to remove a tumor in 2013. In 2016, she complained of spinal column pain. Now after testing, she is diagnosed with lung cancer spread to her spinal column. She's had 10 radiation treatments to her spinal column and 2 rounds of chemotherapy along with a genetic mutation test. The results of the test likely indicate your mother has a form of non small lung cancer called adenocarcinoma and her genetic testing revealed her tumor had an EGFR mutation. I conclude that because Tarceva is a drug used to target epidermal growth factor receptors (EGFR) found in adenocarcinoma non small cell lung cancer. She is also receiving Zometa that is effective against cancer in the bones. First questions for you. Did the radiation sessions stop the pain in her spinal column? Does your mother have additional tumors in her lungs? If she has adenocarcinoma with the EGFR mutation, I know that Tarceva can be a very effective medication to controlling her cancer. Zometa improves bone strength and plays an important support role in her treatment, but Tarceva is the killing agent. What is likely to happen in the future? Your mother will receive another scan in a couple of months to determine if the Tarceva is working. If it is not, then there are other medications that work against EGFR mutations. This link has further details: https://www.lungevity.org/about-lung-cancer/lung-cancer-101/treatment-options/targeted-therapy I've known people to live very long lives taking Tarceva to fight their lung cancer. One woman, a friend, lived 10 years taking Tarceva, and passed away from a heart attack. So, this medicine may work. You mentioned the important things for your mom and dad: courage, strength and faith. Don't hesitate to ask any further questions you might have. Stay the course. Tom

Acejj, I can't pretend to know how you are feeling. I never had a loved one suffer from lung cancer. I was the patient. I know a little about small cell. My understanding of the two stages is limited stage can be treated with both radiation and chemotherapy while extensive stage is normally treated by chemotherapy alone. What can you expect? I can only guess. Likely a scan a couple of weeks after radiation to gage its effect. Perhaps more chemotherapy. Certainly you, your mother, and the rest of your family have important decisions to make. I've told my family that if my cancer ever gets out of control, I don't want to go down the path of curative treatments. I prefer palliative care to eliminate pain and symptoms. Curative chemotherapy is very hard to endure. I've also instructed them to admit me to hospice as my discomfort increases. I'd rather my life be lived out in relative peace surrounded by family than in a hospital connected to tubes and pumps. This is the kind of decision your family should be discussing. How long do you really have? God only knows. I know survivors who were admitted to hospice and were discharged because care was unneeded. Granted, not many but I've spoken to several. I've lived 12 years beyond diagnosis and after multiple failed surgeries left me on the edge of life for months. I'm here. Who knows how much time any of us have. What is important is what your mother does with the time she has. Advice? Don't mourn before its time. Talk to your mom and acquaint her with her treatment options (more curative treatment, palliative care, or hospice care). Spend time with her. Read about small cell lung cancer here - https://www.lungevity.org/about-lung-cancer/lung-cancer-101/types-of-lung-cancer/small-cell-lung-cancer Your reading might help your mother make informed decisions about her future. More questions? Ask away. Stay the course. Tom

Nicole, A car ride after surgery, yes I've done that. The ride was unpleasant for two reasons. Discomfort and a loss of depth perception from all the post surgery pain medications I received. I was stomping on an imaginary break pedal every time a vehicle passed on the highway, and of course complaining about my wife's driving. I survived each ride home but not because of surgical discomfort but because I have a loving and understanding wife. So it is my experience that the ride home will not be comfortable. Would a 4 hours ride be unbearable? I can't answer that for you because my longest was 45 minutes and it was uncomfortable being strapped into a seat with healing incisions. I guess I could have made 4 hours but wouldn't want to. Choosing a surgeon you are comfortable with is so important. My surgeon was recommended by my general practitioner who was very experienced and well connected in our metropolitan area. He picked what turned out to be the best guy for I didn't have one surgery but, due to complications, four in the course of a year. I'd be trying to determine the best surgeon among your choices and that would be my first decision criteria. Have you asked your GP or oncologist? Here is a thought. Visit your oncology practitioner's practice location and ask one of several oncology nurses. I've found them to be really helpful with questions about doctors. I found my pulmonologist based upon a recommendation from my chemo nurse. Also important to consider is the surgical hospital. Thoracic surgery is a team activity. My GP told me the best place was where thousands of surgeries were performed. Team experience is so important. A place that performs many thoracic surgeries has a well trained surgical team ready to effectively handle complications. And, unfortunately there are complications. Let us know how we can be of further help. Stay the course. Tom

Welcome back Meloni. Great news about your surgery completion. Sorry about the post surgical chemo side-effect. I've read about folks with pre and post surgery chemo and many report the same condition as you. Unfortunately, I did not get post surgical chemo because of surgery complications so I have no first hand experience. Why a brain MRI? I had one also after surgery when tumors appeared in my left lung. My doctor told me that lung cancer has an unfortunate tendency of spreading to the brain. My result for brain mets was negative and I hope yours is also. As to your boundary questions, I don't have a clue. My family lived hundreds of miles distant from me so I didn't experience your problems. I did however get a severe chest infection from contact with a sick child. That landed me a two week stay in the hospital after my pneumonectomy. So you are correct in being concerned and vigilant to exposure to those displaying symptoms. I hope you are well. Vent away if you care. This is the place for that! Stay the course. Tom

Glenn, I read the article at your link. I note it is a product of the Independent Cancer Research Foundation who "bases their research on true science instead of politics." They describe the device that devitalizes cancer as a High RF Frequency Generator. RF means radio frequency so perhaps they mean it to be a radio frequency frequency generator. Just as likely, the person who called the device a RF Frequency Generator didn't understand what RF meant. I've practiced engineering for 44 years. No electrical engineer I know would ever use "RF frequency." To do so would be a display of vast incompetence. In one section of the device description they assert the need for a Plasma Tube Amplifier, yet in further description they call this device a Plasma Ray Tube Antenna. You can look up the physics definitions of plasma and ray. Suffice it to say one does not cause the other. Moreover, there is a substantial functioning difference between amplifier and antenna. They don't do the same things. To imply they do tells me the person writing the technical description neither knows what an amplifier nor antenna is. This gives me very low confidence that the device even functions let alone cures cancer. So I wouldn't purchase a High RF Frequency Generator and Plasma Tube Amplifier (or is it an antenna) for any reason. I am sufficiently convinced the person designing this method wouldn't know the difference between DC and daylight. I'm also note that Dr. Royal Raymond Rife discovered this method and it was once known as the Rife Frequency Generator cancer cure. Wikipedia has it in its list of unproven and disproven cancer treatments. Check out the Wiki article. It is pretty comprehensive. Stay the course. Tom

Renij, Welcome here. You are asking tough questions. If you want the unadulterated, no fooling story on how difficult it is to eradicate lung cancer, then read this National Cancer Institute Study - http://jnci.oxfordjournals.org/content/107/6/djv059.full.pdf+html As to how this disease progresses, here is mine: Stage IIIB NSC - Squamous cell - lung cancer diagnosis. Four failed treatments in 3 years, then one worked. After pre-surgical chemo and conventional radiation, I had surgery to remove my right lung in its entirety. Then had surgical complications that took three more surgeries and a year to resolve. In the meantime, cancer spread to my remaining lung. I had 6 infusions of Taxol and Carboplatin but in six months, the tumors returned. I had 6 more infusions of Taxol and Carboplatin hardened with the oral chemotherapy drug Tarceva, and again in six months, my tumor returned. Then I had a successful CyberKnife (stereotactic radiation) that indeed "fried" my persistent tumor. My treatment batting average was one-for-five. If I were a position baseball player, I'd be headed to the minor leagues. Lung cancer is persistent. As for chemo delays due to uncooperative white and red blood cell counts, I've had too many to remember. As to your reported oncologist descriptions of "hasn't grown or spread", I've heard that innumerable times. Manifest uncertainty is the only certain and predictable thing about lung cancer treatment. So, 12 years after diagnosis, I still dutifully attend my semi-annual oncology scan and consultation afraid to hear the words that my cancer has returned. But, while the word "cure" is not one used in the lung cancer community, there is a state we call NED for no evidence of disease. I've got a little bit more than 9 years of NED. NED is a gift. It is not guaranteed, nor permanent but it is something to take advantage of. I believe, if one undergoes lung cancer treatment, then one is choosing extended life. No one knows how long of an extension but what matters, again in my view, is what one does with the extended life. I choose to enjoy myself despite my manifest uncertainty. Some people do not want to know the details about treatment. I completely understand why. When in the throes of "its a little bigger, a little smaller, its spread", and scan after scan after scan I became overwhelmed by fear. Although I knew the details, I sure didn't want to talk about them. My wife did all the question and answers during these most uncertain times. I stared at the clock watching the second hand move, wondering how many cancer cells were growing during the consultation session. Reoccurrence evaporated my bravery and annihilated my inquisitive nature. So, this is my input on what indeed is a sensitive subject. As to your concern about asking frank questions of your dad's oncologist during his consultation, try this. Ask for a moment alone with the doctor after he's finished with the consultations and ask your tough questions then. Or, ask them here. That is one of the reasons this forum exists. Stay the course. Tom

Chime, Welcome here. I am a 12-year Non-small cell, Squamous cell survivor that did not get post surgical chemo because of surgery complications. Tumors spread to my remaining lung after my pneumonectomy and my oncologist suggest the reason for the spreading was not receiving this post surgical or sometimes called "dust-up" chemo. It is designed to kill any cancer cells in the blood stream after surgery. One can't be sure because all lung cancers, even early stage diagnosis like your dad's, have a high probability of reoccurring. Things may have changed but I was told post surgical chemo for my type of surgery was a "standard of care." I'd ask your dad's doctor if his treatment suggestion aligns with the standard of care for your dad's presentation. If it does, I'd be inclined to have the chemo. Treatments that are the standard of care provide the best probability of extended life after diagnosis. Here is a good place to start your investigation about Squamous cell lung cancer - https://www.lungevity.org/about-lung-cancer/lung-cancer-101/types-of-lung-cancer/squamous-cell-lung-cancer Please don't hesitate to post again if you have further questions about your dad's condition or treatment. Stay the course. Tom

Hello Glen and welcome here. To your question about using high (assume radio) frequency treatment to kill microbes, I did some searching on the internet. It didn't take long to find many advertisements that claim to sell devices, some labeled as "research models", that are billed as "groundbreaking medical tools" to kill microbes in cancer cells. Reading through these advertisements, I noted that none of the devices were approved by the FDA (or FCC - Federal Communications Commission that regulates RF or radio frequency transmitters), and none of the studies suggested in the advertisements were peer reviewed by the medical oncology community. One of the advertisements suggests "people who are suffering from cancer and other diseases may participate in their own discovery with in-home research into the effects of high radio frequencies." The suspect words in this claim are "may participate", "own discovery" and "in-home research". These words are just enough legal wiggle room to keep the seller of the device from being sued for fraud. I'm not a medical doctor but I am an engineer who has an extensive background in radio frequency. I worked many years for a company that designs, develops and sells very specialized radio frequency (RF) transmitters, receivers and antennas. It is possible to generate RF signals that are powerful enough to damage tissue. But all tissue is damaged, not just cancer tissue, nor "microbes" in cancer tissue (if there are in fact any microbes in cancer tissue). So elementary engineering physics suggests these claims of killing cancer cells or "microbes" in cancer cells with "high RF frequencies" are false. There are three rules of thumb that I use to judge the effectiveness of an advertised cancer cure. These are: (i) the drugs, procedures or equipment are not approved by the FDA, (ii) the drugs and treatments are not covered by medical insurance, and (iii) people need to pay large amounts of cash in advance of receiving the advertised drug or treatment. If any of these are true, I suspect a phony cure. I've know about many treatments for small cell lung cancer. I know of people who've received these medically approved treatments who have long tenured survival, many more than 2 years. But, I know of no "cure" for cancer, lung cancer or otherwise. Cancer is a disease that can be treated but I know of no medical authority that claims a "cure". The cancer community I know is very cautious about using the "C" word. The term we use is NED or no evidence of disease and in fact that what we seek through treatment. Cure is something we all pray for but has not yet been discovered. When diagnosed with lung cancer, time is of the essence. Steve Jobs, an innovator and superb businessman, was diagnosed with a type of cancer that had good treatment outcomes using conventional FDA approved methods. Yet, he chose to seek an unapproved homeopathic method, traveling to India to receive his miracle cure. The year he invested in the miracle cure allowed his cancer to spread to many other organs. By the time he embraced conventional medicine, his disease was beyond treatment. Here is a news article about it - http://www.telegraph.co.uk/technology/apple/8841347/Steve-Jobs-regretted-trying-to-beat-cancer-with-alternative-medicine-for-so-long.html Lung cancer is a dreadful disease. However, it is a treatable dreadful disease with methods and drugs that are grounded in medical science and tested in extensive trials to ensure they are safe and effective. To my knowledge, no high radio frequency device is grounded in medical science as a cancer treatment method (or even fundamental engineering physics) nor is its safety and effectiveness proved by extensive peer reviewed medical studies or trials. Stay the course. Tom

Donna, And a special birthday celebration for a very special reason and woman! Stay the course. Tom

The nature of the World Wide Web is the essence of its creators. We’ve made a conduit of ideas and information that chronicles every facet of human behavior and lots of non-human behavior. One can find a searchable version of the bible and then click to something that would be an embarrassing find in the bible. The Internet is encyclopedia, newspaper, entertainment, and abstraction all available with only one precondition, access. I was diagnosed with late-stage lung cancer in 2004. The Internet existed but people-to-people interactions were limited to mostly email. Nevertheless, the Internet allowed access to all kinds of information about lung cancer—some of it scholarly and some of it junk. As I recall, there was nothing resembling today’s cancer message boards where people could communicate, consult, and commiserate with one another. Today, there are many and I’ll reveal how one helped me recover from depression and find hope. In March 2006, I was in active third line treatment, infused Taxol and Carboplatin hardened by the oral chemotherapy drug Tarceva. After three failed surgeries and twelve failed chemotherapy cycles. My lung cancer was persistent and I was depressed. Watching TV on a Sunday afternoon in the throes of side effects, I saw a CNN broadcast interview with Phillip Berman, M.D. Phil was a radiologist, never smoker, and lung cancer patient who ironically was diagnosed about the same time as me. He started a cancer blog to keep friends and family informed about his treatment. It morphed into RedToeNail.org. I joined, thus starting my therapy online. Why does it work for me? First is recognition that I’m not alone. Cancer treatment is a slog through appointments and side effects. It is beneficial to be reminded that others are trudging that same ground. Next, these people understand my disease, its treatments and mistreatments. Moreover, they have useful tips and tricks that work! I recall to this day the suggestion I eat a steamed bowl of plain rice each morning before taking Tarceva. It laughed at Imodium, but respected the rice. Last, it is a channel for me to express my thoughts, ideas and uncertainties with people who completely understand. To say they’ve been there and done that is a vast understatement. They designed the tee shirt the experts purchased! Today’s Internet has many opportunities to connect survivors and caregivers. There is the ubiquitous thumbs-up symbol, short sentence reply, and emoji of popular social media platforms. This is fast-paced therapy connecting hundreds, perhaps thousands quickly. It is useful, but I prefer message boards. I like to take the time to read, reflect, and recall my experience when someone reaches out for help. Both, however, are effective. It is interesting to explore why. I’ve attended hundreds of cancer support groups. They are beneficial, but I well recall my first several sessions. Certainly I was made welcome, but the fear I had of my disease was bested only by the fear I felt talking about it. I’m a relaxed public speaker but not a public cancer speaker. As I grew comfortable with a group, I realized another downside. Regulars stopped showing up. The very nature of lung cancer makes support groups a population in decline. Moreover, treatment side effects always seemed to coincide with the support group meeting. People in treatment didn’t feel well enough to attend. I’ve also been an individual support resource both in person and telephonically. First meetings are a bit awkward but these can be very effective for both survivors. There is a shared experience and in every case, this led to a meaningful relationship. There is that same downside of the support group; lung cancer claims a life and now it is a life I was personally and emotionally connected to. It takes a very special constitution to provide survivor-to-survivor support and mine doesn’t measure up. So I work the message boards, mostly at the LUNGevity Forum but some others. I am relatively new to the LUNGevity Forum and it is fascinating to read the history of the survivors, year after year. Some move on to other activities but return after a long absence to a rousing welcome. Why? For exactly the same reason online support resources are so effective. We celebrate life. Stop by and say hello. Stay the course.

Just reported is a Memorial Sloan Kettering Cancer Center and Cornell University study showing but 5% of terminally ill cancer patients understand the gravity of their disease and prognosis. Moreover, only 23 percent of these had a discussion about life expectancy with their doctor. At first pass, I questioned the validity of the percentages. They were so low they bordered on unbelievable. This had to be mainstream press sensationalism at work! Then I spoke with an expert, and she convinced me I was not a typical lung cancer patient. The fact that I read about my disease after diagnosis was a big tell. Many do not. My education about lung cancer started the first night of my diagnostic hospital stay. The lesson delivered ⎯ a very pragmatic and frank discussion with my general practitioner. His words characterizing my prognosis were "slim odds." He didn't want me to give up but wanted to ensure I knew the enemy. After discharge from my diagnosis hospital admission, I burned up the Google Search Engine reading everything I could about lung cancer. In 2004 there were not a lot of sources, but there were enough to scare the living daylights out of me. Research revealed a very low probability of living 5 years even with effective treatment. My bravery evaporated. My wife recalls that time. She reminded that my inquisitive nature departed with bravery. Martha asked questions. These explored diagnosis, treatment possibilities, and prognosis. I mostly stared at the clock in the consultation room. Or tried to change the subject. My oncologist was frank. He said even with successful surgery, I had high odds of reoccurrence. When tumors appeared after pneumonectomy, he was down to chemotherapy to combat my lung cancer. Chemotherapy would buy time but it wouldn’t eradicate. Time purchased allowed for CyberKnife technology to emerge that was a surer kill. But treatment opportunities were explored because Martha was persistent. After a year of surgical mayhem and two years of Taxol Carboplatin hardened with Tarceva, I was barely along for the ride. Sure, I knew my prognosis and life expectancy probability but knowledge did not empower me; it empowered Martha. So maybe the study numbers are low because patients understand their dire straits. Maybe we know and are afraid to talk about it. In case you are wondering, lung cancer is deadly. Mostly because it displays few symptoms and is often diagnosed at late stage. The treatment tool kit for late stage lung cancer is largely empty. Why? Now that is a good question; one deserving of academic study. I’ll start. Let’s hypothesize that lung cancer is a self-induced disease ⎯ people give it to themselves. If this is true, why should society invest in new diagnostic or curative means? As a logical extension of the hypothesis, society should never invest in curing maladies that are self-induced. How is taxpayer funded research for HIV/AIDS by the National Institute of Health to the tune of $3 billion a year explained? It is self-induced. Some will assert that a proportion of HIV/AIDS patients get the affliction accidentally. Yes, and some proportion of lung cancer patients are never smokers. But, drug abuse is completely self-induced and it garners just over $1 billion in yearly research. In the same data year, lung cancer was allocated but $225 million. No research for self-induced hypothesis fails. Let’s construct another hypothesis: society funds diagnostic and curative research for diseases that kill the most people. Seems reasonable. Scarce resources ought to flow to afflictions that take the most lives. Let’s examine the data. In 2012, HIV/AIDS claimed 12,963 deaths according to the Center for Disease Control (CDC). In that same year, lung cancer killed 157,425! Drug abuse is now anointed our national pandemic. Indeed prescription opioid overdose is “raging through the country.” CDC drug overdose deaths amounted to 38,538 in 2014 but in that year lung cancer deaths were 158,080. Lung cancer is our pandemic. It has been for a long time. The more-deaths-the-more-funding hypothesis is toast! Frankly, I’m getting tired of the medical research community squandering precious dollars studying what cancer patients think, feel, or understand. What is far more relevant is how to find, fix, and finish lung cancer. Stay the course.

MY STEPS TO SURVIVING A LUNG CANCER DIAGNOSIS Step 1 – Invest in sophisticated diagnosics before diagnosis If you smoke, were a long-term smoker, or are in an occupation that exposes you to carcinogenic toxins (asbestos removal, auto mechanic, painter, etc.), I suggest getting a computed tomography (CT) scan, often called a CAT scan, of the chest once a year. Insurance now covers it and CT will detect tumors far earlier than a chest x-ray. Early detection of small tumors dramatically enhances your survival chances. I had a chest x-ray in January 2004 and was diagnosed with stage 3b, non-small cell lung cancer the following month. The tumor hadn’t shown on the x-ray; but at diagnosis, it was almost 3 inches long and ½ inch in diameter. The only symptom I had was coughing up blood the day before diagnosis. Learn more about early CT screening. Step 2 – Choose a good general practitioner Your general practitioner may be the manager of your lung cancer treatment. The GP likely will pick your cancer team and may need to do a little arm-twisting to get things moving. Therefore, there can be great benefits to having a GP who is seasoned and well known in the medical community. I prefer doctors of osteopathic medicine to medical doctors. I’ve found that in my experience the former treat people, not patients. I believe a good physician shows kindness, consideration, and compassion toward those in his or her care. These characteristics are essential. Be sure you know your GP and your GP knows you. Such knowledge and trust will give you a survival edge. There are great health care professionals out there. Step 3 – Ensure your oncologist is a physician A doctor has a degree in medicine and a license to practice. A physician is devoted to restoring, maintaining, and promoting your good health. My physician oncologist does a complete examination (looks in eyes, nose, and throat, checks pulse in the extremities, checks reflexes, listens to breathing and heart rate) every visit. He reviews and explains all test results and asks how I feel. He looks at me as I speak, and he listens and makes notes on what I say. He carefully explains medical treatment alternatives that may arrest the disease, and together we choose each next step. He never rushes consultations and, consequently, often is late to scheduled appointments. Because his tardiness results from spending time with those he treats, I know he cares about me and every other patient. These are some characteristics your physician oncologist should possess. Step 4 – Learn about your disease At diagnosis, I had no idea what lung cancer was. Moreover, I didn’t know what an oncologist did, nor could I spell the word! After diagnosis, I read everything I could find about the disease; a good resource is the www.LUNGevity.org website. Then I read medical journals, government reports, research papers, and studies. I made notes about things I didn’t understand and asked questions at my oncology consultations. My wife attended every consultation, procedure, and test to ensure every question was asked and answered, and that we understood the answers. You need to know about type, stage, statistics, radiation, diagnostics, chemotherapy, side effects, surgical options, and so much more. Your chances of survival are improved if you are informed enough to ask highly perceptive questions. Step 5 – Acquire a sanguine attitude quickly Cancer is a disease of death; lung cancer kills more than all other cancers. Your attitude toward treatment is, I believe, essential to survival. When you acquire a sanguine attitude, your treatment team will notice your optimism. They will enjoy interacting with you; they will care about you. I strongly suggest you read Stephen Jay Gould’s essay “The Median Isn’t the Message” to help you understand survival statistics and find optimism about what appear to be bleak probability of survival projections. Join a cancer blog or messageboard. I am a member of several where I can broadcast my complaints and protestations to people who understand and have useful advice for coping. Find cancer support groups and join one. Most people who treat you have no idea how you are feeling. But survivors in cancer support groups understand; they know how you feel—you’ll fit right in! Step 6 – Any port in a storm There is no such thing as “a little stick!” During procedures and treatment, almost everyone will attempt to gain access to your veins with an intravenous device of some type. All such intrusions are uncomfortable, and unless the practitioner is good and lucky he or she will miss more often than not. If your treatment involves intravenously administered chemotherapy, you likely will get stuck at least once a week. A good way to avoid discomfort and frustration is to ask for a port. Installation involves simple, low-risk surgery. Once in place, you need to keep the area clean and exercise precautions when bathing—but access to your veins is no longer a storm but a port in a storm! Step 7 – Don’t believe the miracle cure The consequences of a lung cancer diagnosis are frightening. For most, it will be your first serious encounter with the prospect of death. When you type “lung cancer” into Google, you will be bombarded by advertisement that promises miracle cure at considerable expense. There is no such thing as a miracle cure! Before you invest time (now precious) investigating one of these “too good to be true” remedies, check it out on www.quackwatch.org and discuss it with your physician. Oncology is a medical science. Procedures, drugs, and protocols are tested using scientific methods that are published and reviewed by peers and regulating organizations. When science-based breakthroughs are discovered, they are broadcast very quickly throughout the practitioner community.Read about Steve Jobs—one of the smartest technologists and businessmen the world has ever known—who delayed his cancer treatment. Step 8 – Don’t try to tough it out I am a retired soldier and believed I was man enough to handle almost anything. Cancer proved to be the “anything” I could not handle! I suffered a long time trying to tough it out before I admitted I was depressed. My physician’s response: “Of course you are depressed—how could you not be?” He prescribed appropriate medication, arranged consultations with a psychologist, and suggested I attend support groups. Unless you are tougher than I, you will experience depression. Admit it and accept help. Here are some other things you might try. Ask for the “freeze spray” before an IV is used. If claustrophobic, get a script for Xanax and take it shortly before scans. Even in summer, wear warm clothing to diagnostic and infusion sessions. Some areas where these take place are kept very cold. Many treatment centers have volunteers—engage one in conversation. Many are survivors or caregivers and have a wealth of helpful information. During consultations, I was so frightened I couldn’t rationally ask questions about results or next steps, and I certainly couldn’t remember what was said. Consequently, I never go alone to a consultation. I suggest if you can, always have someone with you too. Step 9 – Become a calendar maniac If you have a smartphone with a calendar application, become an expert in its use. If not, keep a paper “cancer calendar” to record information. Your life after diagnosis will likely become filled with scheduled appointments, and given the nature of the disease and intensity of the battle, these are appointments you don’t want to miss. For example, my chemotherapy cycle required an infusion every third Friday. I had to record three rounds of steroid medication taken every six hours before each infusion. I had a scheduled blood test every Monday following infusion. Nausea started Sunday morning and lasted until Tuesday. Joint pain started Wednesday and lasted until Saturday. If I took the nausea medication about an hour before onset, symptoms often were minimal. Furthermore, if I started pain medication a couple of hours before onset, my pain was manageable. I used the alarm feature on my phone to warn me in advance. Plus, there was life to live, and the calendar helped me avoid conflicts between my cancer treatment schedule and my life events schedule. Step 10 – Choose to live When asked about my cancer experience, I often tell those in treatment that cancer is a disease of life or death. I believe if you choose treatment, you are choosing life. And if you choose to live, do something with the life you are given. The “something” will be different for each of us, but doing whatever you enjoy or find fulfilling is so important. If you enjoyed an activity before diagnosis, do it afterward. Look at yourself in the mirror every morning. If you don’t see an expiration date stamped on your forehead, then enjoy the day and look forward to the next! Oh, by the way, your hair will grow back! Baldness is a beautiful badge of courage. Stay the course.

Josie, I am a 12 year, well almost 13 year, survivor with late stage diagnosed non-small cell, squamous cell, lung cancer. I had conventional radiation and chemotherapy (taxol and carboplatin) first line treatment after a 2004 diagnosis to shrink my in situ tumor in the main stem bronchus of my right lung. Then my right lung was removed using a thoracotomy procedure. Unfortunately, I had post surgical complications that required 3 more operations to correct. Then the cancer spread to my left (now only) lung and I had a total of two years chemotherapy treatment, again with taxol and carboplatin, although my last series of infusions was hardened by the oral chemotherapy drug Tarceva. Still my cancer returned. What finally caused my no evidence of disease or NED was stereotactic (CyberKnife) radiation to my left lung. So to your questions: What to expect after surgery? It depends on the type of surgery (thoracotomy, lobectomy or video assisted thoracic surgery (VATS). A thoracotomy is most invasive and pain and recovery are longest with this type. Still my pain from my first thoracotomy was not that bad because I had a morphine injector hooked to my IV line and was encouraged to activate it whenever I felt pain. After my first surgery, I was discharged to home after about 5 days. I needed assistance after recovery. My mobility was limited. I couldn't bend over and pick things up and my dressings needed to be changed every day. But, if you have a minimally invasive lobectomy or VATS, you might not feel much discomfort but I bet you'll need some in home assistance. I'd plan on it. Researching lung cancer is scary. But knowledge is power and if you learn about your disease you'll be a better self-advocate able to ask your treatment team "terribly preceptive questions" about alternate treatment means and side-effects. Here is the best place to start your education: https://www.lungevity.org/about-lung-cancer/lung-cancer-101 More questions? Ask away. Stay the course. Tom

Now, long after the commotion of active treatment, my wife and I often share recollections. Martha is my caregiver and for more than 3 years of near constant therapy she held the long thin line. In doing so, she had to confront my anxiety, discomfort and fear. These were variable; the constant foe was my general irascibility towards medical treatment. Now a 12-year survivor, we both laugh at some of my antics. But during treatment, there was high drama to deal with. It is not easy to watch someone you love encumbered by all manner of tubes and wires in intensive care. Nor is it pleasant to attend to the full-throttle roar of chemo-induced side effects. Moreover, there is recognition that the side effect bedlam will occur with the same progression and intensity a short time in the future. Add to that the burden of failed treatments and the inability to influence outcomes. These are the plight of the caregiver. While in the throes of treatment, most appreciated were the little things Martha did for me. Discharged from hospital with a chest tube in my lower back, scratching my back was a godsend. I was beset with “taxol toes” and rubbing my feet with Aspercreme provided immense temporary relief. But most appreciated was her homemade chocolate mint chip ice cream. This was an effective counter to a waning appetite, enormous attitude boost, and a relished wonderful concoction. There is a fundamental reality about treatment recollection: the patient and caregiver have vastly different memories of the same event. I find it useful to accept Martha’s version as a higher order truth for two reasons. She was an observer and not under duress, and I was normally at wits end totally undone by the experience. This difference in perspective points to the essential role of the lung cancer caregiver—a steady hand in a sea of turmoil. Stay the course.

Hang in there skmcornett! You've already has two successful surgeries. I betting your post surgical thyroid treatment will also be successful if indeed that is the decision. Stay the course. Tom

Josie, Welcome here. You have a lot of questions. Let's get to them. "In situ" is Latin for on site or in the same place. In terms of cancer, it means the tumor has not spread - a good thing. Ground Glass Density (or Ground Glass Opacity) Nodules, from what I've read, are a diagnostic challenge. Thankfully, your doctors have accumulated a history because of your annual physical examination. Again, from what I've read, when one changes size it is common for doctors to order a biopsy. If located in a difficult area, removal of the entire opacity is something I've also read about and following removal, a biopsy is performed. From what you've reported, you had a CT guided biopsy already (assume it was the Ground Glass Opacity) and adenocarcinoma is diagnosed. If this is so, I'd be consulting with an oncologist. A single biopsy does not reveal if cancer has spread. Generally scans are used for this function - a CT scan that you've had or a PET scan are used to determine if your cancer has spread to other areas. I hope these answers are helpful. More questions? Ask away. Stay the course. Tom

Dick, Very sorry to about the scan. Treatment is a long game and I am hoping the new advances in immunotherapy arrest your disease. Stay the course. Tom

Dick welcome here! Three months, three times in the chair, and a scan today, I wish it wasn't so! I really wish I didn't know how you are feeling, but I do. So, where do we begin. Thankfully you'll get CT scan results a lot sooner than when I was in active treatment. There is a point to be made by that statement - I've been around for a long time, surviving 12 years from diagnosis and 9 years NED (no evidence of disease). And, If I can live, so can you. Where do we go from here? Regardless of the CT scan results, you'll likely spend at least 3 more times in the chair. You are in what we call first line treatment now. You may need a second round (called second line treatment). You may need a third round. You may have a change in chemo recipe. My treatment batting average was 200 - one for five - so more treatment is not unusual. My next statement is likely hard to realize while you are enduring treatment because of the "enduring", but try and focus on the reason you are undergoing treatment. It gives you extra life. Since that is the case, the question becomes what are you doing with the extra life. I did not learn this lesson until well past the depression of my unsuccessful fourth line treatment. I left a lot of unappreciated and unfulfilling life in the infusion chair. Here is what I suggest. Take a look at your forehead in the mirror every morning. If you don't see the word "expired" stamped on it, enjoy the day. You'll likely have questions and this is a good place to ask them. You might tell us about the type of lung cancer you have. Treatment alternatives vary by type and subtype. Knowing yours will assist us in answering your treatment and side-effect questions. Here is a good primer on the types of cancer - https://www.lungevity.org/about-lung-cancer/lung-cancer-101/types-of-lung-cancer Stay the course. Tom

TerriRose, This is the place to vent! Glad the folks at MD Anderson are presenting options. Don't know anything about Gemini Moon research but you are now at one of the best treatment and research hospitals in the world. Here is some information on lung cancer immunotherapy - https://www.lungevity.org/about-lung-cancer/lung-cancer-101/treatment-options/immunotherapy Let us know how your diagnostics and treatment progress. And, of course, this is the place for questions. Stay the course. Tom