Tom Galli

St. Michael, I had one of those "older thoracotomy surgeries." I was up walking laps the day after surgery and discharged 4 days later. So here is what to anticipate. She'll likely have a chest tube. No, removal of the tube doesn't hurt all that much. She'll have some pain but likely she'll have a morphine device she can use every 15 minutes if need be. Encourage her to use it. She'll need pain meds for a couple of days. Here is what you need to know to help her translate to home. If she doesn't have an adjustable bed, she may need overside pillows to allow her to rest upright in her bed at home. Buy a number of these at a local mattress store and help her settle into a comfortable sleeping position. Pillow arranging will take some time so you may be purchasing more. Your mom may need to learn alternate ways of getting out of bed. Before my surgery, I'd hoist my self out of bed by pushing down on my elbows. That didn't work after surgery and I needed to learn how to roll out of bed on the side opposite my incision scars. You need to help her learn this skill. I would advise against flying for about 3 to 6 months. My doctor forgot to tell me about aircraft cabin pressure and painful chest incisions. Some people experience pain for a number of years when flying on an airliner. You'll have many more questions and ask away. Hoping for good results. Stay the course. Tom

Michele, Discovering lung cancer at an early stage yields the best probability for successful treatment, but probability implies uncertainty. Knowing many with lung cancer, I can report there is a high expectation of "surgery and done." And for many that is true, but for some it is not. So it is my belief that we need to be aware of the persistence of lung cancer so we don't suffer crushed expectations and depression in addition to additional treatment. I hope your surgery is curative. You should be positive about your treatment and most important, recognize and participate in the benefit of treatment -- extended life. Lung cancer's persistence does feel like a nightmare but thankfully every night's sleep does not end in a nightmare. I hope and pray your surgery is successful and look forward to you reporting the results. Stay the course. Tom

Bridget, I feel a special obligation to the newly diagnosed because of my length survival. I have this gift of lessons learned to pass on. Most important is if you are choosing treatment, you are choosing life. How long? Who knows, but rather than a length focus, I believe a survivor should have an enjoyment focus. Do something you enjoy with the life you have. And, if I can live, so can you. Stay the course. Tom

Susan offers excellent advice. You may need to be persistant to drive to a diagnosis, especially given your history as a non-smoker. But and unfortunately, 15 to 18-percent of us are diagnosed as nonsmokers. I was a smoker and my symptom was coughing up blood. So I didn't go through the long line of things your doctor thought you had. You may not have cancer. A biopsy, as Susan suggests, is what I'd press for. About the liver lesion, this may or may not be related to the discovered lung nodule. I recall reading my radiologist scan report shortly before admittance for my pneumonectomy and discovering to my horror that the report had two paragraphs of information on hypo-dense and other types of discovered liver lesions. I fired off a quick email question to my oncologist and his answer was he was aware of these lesions but in the course of my scan history, there was no change in appearance therefore he concluded they were not cancer. Hopefully, this outcome applies to you. Welcome here. I hope for a prompt resolution of your situation. Stay the course. Tom

Maltman, Welcome here. Looks like an interesting source you've suggested. I am a Google News advocate. I've tailored my news page to display "lung cancer" as a topic I'm interested in. So everyday I read the news, I get 5 to 7 diverse articles from news outlets or scientific journals around the world about lung cancer. Stay the course. Tom

Bridget, I am happy for you given your early discovery. Stage 1A and resection of an en situ tumor is the best recipe for no evidence of disease (NED). Surgery is termed a "curative" treatment but that does not always translate to a cure state. Here is a blog I wrote sometime ago that speaks to the frequency of lung cancer recurrence. The recurrence rate in the referenced National Cancer Institute study is 33-percent for Stage 1A lung cancer. Indeed, this high recurrence is the reason the lung cancer community uses NED as opposed to cure. I had Stage 3A NSCLC and was treated with curative surgery and recurrence was noted in about 8 months after surgery. I trust you are seeing your oncologist for follow ups and scans. I've had multiple types of unrelated cancer if you want to count several en situ Squamous cell skin cancer tumors that were surgically removed. My doctor believed the skin cancer to be caused by overexposure to the sun. I wouldn't know why folks have multiple cancers nor how common this condition is. I believe however that now diagnosed with lung cancer, you should be very vigilante about recurrence. Stay the course. Tom

Shari, Agree completely with Donna. If you have adenocarcinoma, you have a form of NSCLC. the NS stands for non small. Stay the course. Tom

Welcome Shari, I experienced many of the symptoms you've expressed after my pneumonectomy. I also had many surgical complications that took a year to resolve. Despite 3 reoccurrence events after surgery, my life is now near normal. I am mobile and can't run or climb many flights of stairs but I am able to walk around on level ground without much difficulty. I have about 38% lung capacity and that will be one of the things your pulmonologist will determine. I've stayed off O2 and my O2 SAT rate is about 97% on a good day. Chest colds are a problem so I avoid children. Flying in a commercial aircraft is a painful event because the cabin is pressurized at about 6 to 8,000 feet and my chest volume expands causing high incision pain. But we still fly and I take tramadol before and during long flights. Sleeping is difficult because of chronic pain from chemo-induced neuropathy. But, otherwise I lead a particularly normal life. I had my first surgery at 53 and 2 more to repair a pluralbronchial fistula. It took me a year to recover so don't push yourself. Stay the course. Tom

Welcome Jacqueline! I wish you didn't need to join us but it is a good idea you did. The value of this forum is that we are in the same boat as you, we are all floating together. So, we completely understand what it means and how it feels to suffer a lung cancer diagnosis. Most importantly, as an initial comment, you may want to reflect on the fact that if we can live, so can you. As Donna asked, you might wish to share some more information about your stage IV NSCLC. For example, is it Squamous cell or adenocarcinoma or large cell. And, if it is adenocarcinoma, perhaps you might know if you tumor was genetically screened to reveal suitability for targeted therapy. Here is information about targeted therapy. Questions? Ask away. Stay the course. Tom

Liz, Welcome here. Your report of "small growths" is of concern. If you feel pressure or inflammation in your neck or chest area this long after surgery, you should report it to a doctor, pronto! It has been almost 13 years since my lung was removed and I had two additional surgeries to repair a leak in my chest cavity. In the area where they did the repair - where my right main stem bronchus is or was - is still very sensitive to pollutants or pollen and I experience asthmatic symptoms during the spring and fall pollen season. I didn't have asthma before my surgery but I use inhalers daily also. Sometimes they help and sometimes I need to retreat indoors. We are glad you found this site also. Stay the course. Tom

St. Michael, How can one not be nervous about surgery? I had four thoracic surgeries in the span of 10 months and you'd think one would get comfortable with the routine. Well I didn't! Surgery is serious and worthy of worry but the payback in terms of survival is high. So even though it took four surgeries to solve my problem, I'd still choose the surgery path if I had to do it again. The device Meloni is talking about is called a spirometer and her idea of getting your mother accustomed to "keeping the ball up" before surgery is a very good idea. Ask your mother's surgeon's practice nurse for a spirometer and set her to practice. She'll get lots of post surgical "coaching" from the respiratory technicians and if she knows the drill before surgery, she'll know what to expect after. Yes, reduction in size and number of tumors from treatment prior to surgery is a good sign. I have to believe the surgical plan is to snip those affected lymph nodes during her lobectomy. Stay the course. Tom

Welcome here Cindy, Glad for your early find and hope surgery goes well. Let us know how you are doing when you get discharged. Stay the course. Tom

Welcome Robin, I never had Opdivo but a quick glance of the side effect literature reveals that liver problems (hepatitis) is indeed a potential side effect. You are right in engaging your father's doctor. While I don't have first hand experience with a course of steroids interrupting chemo, I know many cancer patients who've had this treatment. So hopefully, steroids will restore liver function enough for the continuance of chemo. Does your father have lung cancer? Did his disease progress after his initial stage IIIb diagnosis and after his first line treatment? Sorry, I can't be more helpful but others here may have more specific information on Opdivo. Stay the course. Tom

Hello KC! Glad you found us and very happy with your reported results. I also had pre-surgical chemo and radiation before a pneumonectomy but surgical complications meant I couldn't receive the post surgical or "dust-up" chemo and I suffered my first of three recurrences. I was stage IIIA Squamous cell NSCLC. After you are full recovered from surgery and during your first air travel trip, you may experience pain or discomfort in your incision area. Folks often don't expect this symptom but it is more common than not. Life has indeed changed but it does not need to be different from your pre-diagnosed experience. You've gone through this rigorous treatment to allow life continuance so I believe it is important to do something worthwhile with your treatment-produced extension. So add the word enjoyment to your new normal cancer survivor status. Stay the course. Tom

Today, in the United States, we celebrate the holiday of Thanksgiving. Our first president, George Washington, called for an official “day of public thanksgiving and prayer” in 1789 and although the Congress heartily agreed, the proclamation was lost in the bureaucratic press of politics. It fell to Abraham Lincoln to rekindle the Thanksgiving Holiday shortly after the pivotal battle of our Civil War—Gettysburg in 1863. Thus in the mist of warfare and uncertainty, a holiday dedicated to thankfulness was founded. Today, we gather to celebrate life and thank the Almighty for health and bounty. Thankfulness for me, a lung cancer survivor, is particularly significant for I have been blessed to witness one of life’s most memorable events: birth of a first grandchild. During my recent visit, while cradling her in my arms, I felt a connection with my infant-offspring. As the picture captures, Charlett Emilyrose was looking intently into my eyes, unusual for a three-week old baby. She held my gaze for the longest time as if painting a mental portrait. Her grandfather was joyous and delighted and thankful. This touching moment is unfortunately rare for those with lung cancer. By statistical expression, Thanksgiving 2005 should have been my last celebration. Yet, nearing my 13th year of surviving a lung cancer diagnosis, I am so thankful to have witnessed the birth of a grandchild. Providence has indeed showered me with gifts. So today I give thanks for survival and in the spirit of George Washington’s original scope of holiday, I pray all who suffer the effects of this horrid disease experience the joy and delight I felt as I held my granddaughter in my arms. Happy Thanksgiving all. Stay the course.

Simply wonderful news. We indeed have something to be thankful for. All victories against the beast are indeed worthy. Stay the course. Tom

Clarry, Your mom has stage IV, non-small cell (NSC) Squamous cell, lung cancer (LC). To your questions: It is not "totally untreatable." It can be treated with conventional chemotherapy and that is often successful in extending life. Moreover, as Susan indicated, there are immunotherapy advances that are just emerging from research that are proving useful in treating Squamous cell NSCLC. Here is information on Squamous cell LC, and here is information on immunotherapy. Your mom's age and general health may be complicating factors and her doctors are likely aware of that complication. Two weeks or longer is not an unusual wait time for a treatment plan. I'm not familiar with the UK medical system but it took about a month for me to navigate the diagnostic phase of my disease. After a successful treatment that resulted in "no evidence of disease" (NED), we scheduled an extensive and expensive celebratory vacation. Shortly before vacation day, a scan showed a recurrence and my oncologist advised we enjoy our trip forecasting no problem with a month delay in addressing the recurrence. So, I'd say a month to no more than 6 weeks to start treatment is a US norm. Again, I don't know about the UK medical system, but I don't think "first line standard of care" (the treatment administered to most all stage IV, NSC Squamous cell LC patients) will be hard to arrange. One exception, however, is complicating medical conditions. Advice. Your mom will almost certainly receive chemotherapy as a treatment. Understand that chemotherapy often extends life. Help her to enjoy the extension. No one knows how long of an extension lasts. Many of us were exactly where your mother is and we are still living the extension. I've found in lung cancer, that persistence is required. I had four unsuccessful treatments in the course of 3 years until the fifth yielded NED. I wasted a lot of time fretting during that 3 year period when I could have been living. Help your mom enjoy life. Guidance. Read into the disease. Once treatment is administered, there will be side effects to deal with. Fortunately these are cyclic and will appear about the same time after each infusion. Help your mom chart the onset of side effects. My doctors advised starting my nausea medication shortly before the onset of nausea. I did and I didn't experience nausea. So, help your mom by creating her "cancer calendar". Record her treatment days, post treatment scheduled tests (blood work), diagnostics (scans in treatment) and date and time of each side effect presentation. Cancer treatment is a scheduling exercise. Help her create and maintain a schedule. More guidance. Read steps four through ten. There are miracles. These are events where cancer stops growing without medical intervention. They are rare and unexplainable. There are no miracle cures so avoid falling into that pitfall. But hope is not a miracle cure but I believe it essential to successful treatment. This explains my belief of the importance of hope in lung cancer treatment. We wish the best for your mother. You'll likely have future questions and this is a good place to ask them. And, to reinforce the importance of hope, if I can live, so can your mom. Stay the course. Tom

Sarah, I had Tarceva in combination with Taxol and Carboplatin during my 4th line treatment. I did experience very severe rash, diarrhea and was very tired. I'd had Taxol and Carboplatin during 3rd line treatment and suffered no rash, diarrhea and some fatigue for a couple of days after infusion. So, likely his side effects are from Tarceva. Here is a tip. To control diarrhea I was advised to start each day with plain steamed rice. Not processed rice but the kind that is used in Asian recipes. It worked, quite effectively. Traceva laughed at Imodium but respected the rice. Welcome here. You'll have more questions so feel free to ask away. Stay the course. Tom

Monica, How could I forget to tell you of liver findings after CT tests! I had the same scare and was frightened when I started receiving and reading the radiology interpretations in the CT report. My oncologist calmed me down explaining there are a lot of reasons one has a hypodense legion in the liver. Rather than explain the reasons, he sent me a link to read about them. He made two points: I had about 40 CT scans worth of history and each one commented on a number of hypodense legions. The important thing was there was little change from report to report. If your oncologist was worried, you'd be discussing new metastasis. You are not. So relax. Note also the size and shape are unchanged since March 26th ("unchanged 3:26"). Stay the course. Tom

Steph, Welcome here. I've read great things about Keytruda, so I can't wait for you to report your mid-treatment scans to learn your tumors have decreased in size or hopefully have been eliminated. We have many long term survivors and our collective experience applies to you. If we can live, so can you. Stay the course. Tom

LoriMae, Your mom has a lot going on. I'm not a doctor so keep that in mind. An internal medicine physician oversaw preliminary scans and is suspicious of cancer. Your mother pushed back at the needle biopsy. Unfortunately, the needle biopsy becomes the definitive test to determine if your mom's symptoms are cancer or something else. COPD and respiratory problems are complicating factors and that is understood. A painful lymph node (swollen gland) could be infection or something else. There is a lot of fear, obviously. I understand. I had that fear. But, not having the biopsy will not reduce the fear, it will increase the uncertainty in both your mom and your family. If she has cancer, treatment cannot start until the type of cancer is determined and typing requires a biological sample and pathologist examination. Not wanting to go through treatment is understandable at some level, but only after knowing what you face. I'd press for your mom to have the needle biopsy. That will reveal what is going on. Then you can make treatment decisions or non decisions. And you will have reduced some of the uncertainty. This is a good place to ask your questions. Unfortunately, many of us have been right where your mom is, myself included. Stay the course. Tom

Lily, I had a similar problem after my second surgery. I suffered a pulmonary embolism after a surgery to repair a fistula in my trachea and had to be placed in an induced coma. Unfortunately, because of the length of intubation time, my epiglottis -- the flap of skin that directs food and liquid to the stomach rather than the lung -- got lazy and stopped working. Of course, I suffered aspirational pneumonia. Food and liquid went into my lung and not stomach. My problem took about a month to resolve and during this time, I was fed by a feeding tube. I did indeed lose a lot of weight. But, I didn't have a tumor causing the problem. You might ask if stereotactic radiation, explained here, is available on a palliative care basis to reduce the effect of tumor pressure. Stay the course. Tom

Michele, I am a lung cancer survivor but also a veteran. The bureaucratic path to starting treatment in a VA hospital is a nightmare, but once treatment gets underway, delivery, I've found is very good. Many US members of congress (House of Representatives) have hired local professional staff who deal with the Veterans Administration on behalf of their congressional district. Call your member of congress local constituent office and see if they have a Veterans Administration focused staff member. If they do, use them to get through the bureaucratic shuffle before treatment. They are very good at solving VA communications problems and indeed, that is the problem you will encounter. Moreover, the VA bureaucrats seem to pay more attention to congressional staff members than veterans. That is sad, very sad. So even up your bureaucratic odds to stay out of the VA pre-treatment bureaucratic dance. Stay the course. Tom

St. Michael, This is very good news indeed! I'd say it is celebration time because victories against our beast are few and far between. The plan was shrink and the plan was achieved. Further pre-surgical chemo should be more tolerable because we have a surgical solution on the table. So more than hope is working as a treatment measure. Post surgical chemo is normal (if there is such a thing in lung cancer). It is "normally" given at reduced strength (again normal applies) and fewer courses than standard of care chemo. Post surgical radiation is something I've not heard about except for stereotactic radiation. Here is a good summary about radiation treatments common to lung cancer. I don't know how the EGFR mutation plays in adeno-squamous NSCLC. But, your mom is attended by pros and I'm sure they know. So, you are right about the long road ahead but it is straight and with fewer U-turns now that we know that chemo is having the desired effect. Stay the course. Tom

Jose, It is best you tell your mom's doctors about nausea and vomiting. These are common side effects and the docs should be able to prescribe effective medicine to help ease her problems. You can help however. Encourage your mother (or do it for her) to capture the time the nausea and vomiting symptoms start after infusion. Once you know the number of hours after infusion, she can take her medication about an hour earlier than the start of symptoms. When I learned this tip from my chemo nurse, I had no problem with nausea. Sweating is a different problem. Does she sweat when she sleeps? If so, it is important you share this symptom quickly with her doctors. Sometimes this symptom is associated with reduced efficiency of your mother's pulmonary system. Your mention of fluid on the lungs is another indicator. Ensure you report the sweating symptom to her doctors quickly. It could be a harmless reaction of her body to the chemotherapy, or something else. Stay the course. Tom