Tom Galli

We know that competent physicians are essential to the quality and effectiveness of our medical care. But, how do we evaluate physician competence? I have a theory: physical behavior informs on competence. I'd like your input on physician behaviors from your prospective by completing a simple survey. My goal is to create a resource for the newly diagnosed that they can use to answer the terribly perceptive question: How do I know I've got a good doctor? We are, of course, the experts and collectively can establish parameters that describe the best physicians and best practitioners. I indent to publish the results of this survey on LCSC at Lung Cancer 101. Please private message me your response. Your message can simply list each behavior followed by an = sign, then a number from 0 to 3. This survey will be broadcasted on a number of LUNGevity social media sites, but please answer only once. The survey closes for input on July 1, 2022. Thank you for your input and stay the course. Tom

Welcome Jill! I was right where you are 18 years ago--in diagnostic madness. I offer but one message: if I can live, so can you! Hold on to that idea as you move forward. Judy and Lou have offered sound advice. You've got a lot to learn and most important is the need to master our lung cancer vocabulary. Lou's suggestion of Lung Cancer 101 is sound indeed. Read this, then watch the movie. Hope is a good thing! Stay the course. Tom

Yvette, Your question--"is it normal to be so short of breath..."--brought a smile to my face. I've found there is no "normal" in this disease. Everyone reacts to things differently. After my first open thoracotomy removing my right lung, I was up-and-at-'em lapping the ward with vigor by day 3. I felt mild pain in my suture plane and at various tube closures but nothing that required any narcotic pain medication. Then a well meaning neighbor visited with their children and I caught a "flavor of the month" chest cold that put me down hard. At the hospital emergency room, we learned the sutures of my bronchus stump ruptured and a good portion of my intake air was going into my empty right chest. That led to complications cubed and two more open thoracotomies in short order and six months of hospitalization. Pain never abated. I still endure chronic pain from subsequent surgeries today, 18 years after. Yes shortness of breath should be expected recovering from surgery. Yours will likely be a short term phenomena because your cause is likely inflammation of very sensitive lung tissue. So, keep active and push yourself a little bit more each day and you'll get to normal (your new normal). I've found that any narcotic medication needs to be accompanied with a regular regimen of laxative to keep things moving. I'd start it now and keep dosing until your digestive cycle returns to normal (this is likely an "old" normal). It sounds like your recovery is "normal." Stay the course. Tom

Kelvin, Have I experienced a chest infection during chemo-radiation. No. But consider that chemo-radiation was my first line treatment. I had chemo only as 4th and 5th line treatments and during both, I developed a congesting chest cold. Two points: first I was miserable and second, the condition cleared. Chemo and to a lessor degree, radiation, tend to reduce our white blood cell counts and white cells do the heavy lifting when it comes to fighting infection. I think it is a good policy to isolate, as much as possible, while receiving chemo because the "flavor of the month" chest cold can become a very severe illness in someone with a hampered immune system. I hope your mom recovers quickly and when she does, keep her "out of circulation" as much as possible during her treatment. Stay the course. Tom

Nur, Good to hear from you again and glad to know your mom's condition is stable. Mucus production with late state lung cancer is unfortunately a problem. There is a over-the-counter medicine called Guaifenesin. The trade-name for this drug is Mucinex. It is very helpful for thinning mucus and allowing it to clear rapidly. Perhaps a pharmacy has this medication. I don't see why you couldn't feed your mom baby food. I'd also include ice cream if available. It is hard to say no to ice cream! Stay the course. Tom

Mary, Lots of us have lung nodules. Here is my go-to resource to explain how and why they form. Lou's suggestion for a PET scan is a good one, but this scan is often unreliable for small nodules (4 mm or .4 cm, is very small). So you may need to have monitoring CT scans to see if the nodules change shape or size. It is indeed frustrating, I know. I've been dealing with lung nodules for 18 years and so I completely understand. Stay the course. Tom

Sean, I wouldn't have any idea why insurance companies behave the way they do. Well, in a general sense, I do--money. Insurance companies feel that all premiums paid belong to the company and therefore don't like paying for patient care. And, indeed insurance companies are about the most inhumane organizations in society. They've always been so. Stay the course. Tom

Shauna, I'll add my welcome to Lou and Shauna's. I've been on this forum for 7 years and on a prior lung cancer forum for 5 years and almost everyone asks how much time one has left. Of course, I've never had an answer. No one knows. I suggest embracing a different point of view: what does one what to do with the time left? Now that is a question that is answerable. No one knows how much time we have in life. We have no recollection of birth and we cannot communicate after death, and these are life's two unquestioned realities. But in the middle between these two poles is life and living, and in this middle ground we have choices. If your Mom chose treatment, then she is choosing living. Help her live and enjoy each moment of life's remaining balance. Stay the course. Tom

CFC, Welcome here. Given the length of time of your symptoms and non response for treatment, an x-ray to check on pneumonia is warranted, but an x-ray might not show indications of lung cancer. I suggest you ask your physician for a CT scan. This technology is much better at detecting nodules or small lesions that may be suspicious for lung cancer. But, be mindful, that even CT detected nodules or lesions are not in themselves a diagnosis for lung cancer. A tissue biopsy is required to confirm a lung cancer diagnosis. Read this and this for more information. Stay the course. Tom

Sean, Something about your dad's insurance denial is unusual. Given, the standard of care for extensive stage small cell lung cancer can be 4 infusions of chemotherapy. The most common pairing is Cisplatin and Etoposide. But a relatively new systemic treatment called immunotherapy is now becoming a more common method. The name of the immunotherapy drug is pembrolizumab. This can be given alone or in combination with Cisplatin and Etoposide. I can envision an insurance problem if a doctor wants to continue a 5th or 6th infusion of Cisplatin and Etoposide alone, but if the doctor has a good reason for doing so, Medicare will likely agree but the doctor needs to engage with Medicare to communicate the reason. Stay the course. Tom

Yvette, Unfortunately, yes. I had 3 thoracic surgeries all performed by the same surgeon within the span of 7 months and in 2 of them, the drain hole was closed by a special circular suture on removal of the tube. My last surgery, I had 2 drains. One was closed with suture a couple of days after surgery and one was left to close on its own. My surgeon's answer for the difference was to avoid a build up of fluid and pressure while healing. I had to change bandages every day (actually my wife did the changing) and it took about a month to completely heal. I hope this helps. Stay the course. Tom

Ashnnazila, What is the best approach to eliminate brain mets in lung cancer treatment? In a general sense, it depends. There are of course many factors to consider. But, precision radiation for small tumors seems to be the more common method. Consider that both surgery and precision radiation or cyber surgery are both very capable ways of eliminating brain tumors. The key advantage of cyber surgery is avoiding the risk of brain surgery and the trauma of recovery. If it were me, I'd be asking the doctor advising surgical treatment why the change in approach. Stay the course. Tom

Army, What opinion might I have on a treatment when Keytruda doesn't work? First, understand my opinion is only suggestive. I'm not a physician so I am not offering an informed opinion. There might be 4 alternatives: conventional chemo alone, combination chemo (conventional chemo with immunotherapy), chemo-radiation (conventional chemo with fractional general radiation), and perhaps radiation alone. This resource explains these alternatives. Stay the course. Tom

Kamoto, I'm sorry about your med onc appointment delay. While waiting, you might try a consultation with a radiation oncologist at your hospital. They treat our disease also and they may be more available than a medical oncologist. This also has the advantage of getting into the hospital system sooner and the "rad onc" might be able to bump up your medical oncology appointment. No matter where in the world (and I've seen a lot of it), people complain. It just seems to be a human characteristic. Social medial accelerates the complaint pace, but I don't think it improves veracity. Stay the course. Tom

LRB, I'm not sure what "renovation" means in the construct of thoracic surgery either. Hope you get a suitable answer pronto. Stay the course. Tom

Kevin, I'll add my concern for your wife and the COVID caused delay in treatment. I don't have personal experience with Trabecta, but delays in lung cancer treatment are common. I hope your wife's treatment resumes promptly. Stay the course. Tom

Cheryl, Welcome here. Eighteen years ago, I was in exactly where you are now. Diagnosed with Stage IIIB NSC Squamous Cell LC, a single very large tumor completely blocking the main stem bronchus of my right lung, clear margins after surgery, and all resected lymph nodes negative. But I had surgical complications that precluded my scheduled post surgical chemotherapy. Then after a nightmare of thoracic surgery repairs, I emerged with a recurrence. Then the "fun" began! I really encourage you do do everything possible to avoid recurrence in this disease, and a 10% chance of reduction is very significant. You cited a 25% chance of recurrence. This suggests even stage I and IB have a 33% chance (read the NCI paper cited in the blog), stage II to IIIA have a 66% chance! Procedurally, your post surgical chemo is call adjuvant therapy. This type of therapy excels in sweeping the blood and lymphatic systems of stray cancer cells looking to make a home and new tumor. Having a large tumor increases the probability that it was casting off cells that are likely in your blood stream, and unfortunately, there are no suitable tests to accurately detect the presence of these cells. But, chemotherapy is very effective in killing cells while they are small and before they form into solid tumors. If it were my decision. I'd take the adjuvant chemo after surgery. I might even agree to a plan of combination conventional chemo and immunotherapy as my adjuvant treatment to increase my resistance to recurrence. Beat this disease early! Chemo side effects are a tiny price to pay to avoid recurrence. As for hope, if I can live so can you! Stay the course. Tom

Kamoto, Normally, the amount of PD-L1 expression is reported discretely. Do you have a numeric value? The level of expression points to if immunotherapy is a possible treatment method. Stay the course. Tom

Kelvin, I would count cough suppression as an indicator that chemo is having a desired effect on your mom's trumor. Tumors cause irritation that yields to coughing so eliminating the source of irritation surpasses the symptoms. Stay the course. Tom

Chris, Do let us know how the procedure went. I'm sorry I was not able to read this before your surgery. Stay the course. Tom

Justin, On your question about esophagus scarring after radiation, I had that after 30 sessions of fractional general radiation. During that time (about a month) I had difficulty swallowing and was on a near liquid diet (I wonder if ice cream counts as a liquid because I recall consuming a lot of that!). In my case, the symptom departed about a month after my last treatment. Here is hoping your problems leave soon. Stay the course. Tom

Walfredo, I don't blame you for wanting off the ride. There is however a large amount of comfort from what the pathologist reported: not small cell, not non small cell, and not a carcinoid tumor. What is the old expression--three nots make a never.... The only comfort I can be concerning your wild ride is that it will end, hopefully soon with an assist from the Mayo Clinic. Stay the course. Tom

Oh my! This is not good news. "What can you do?" Lock, load and proceed deliberately down range to engage and kill your lung cancer. More than 18 years ago, I was guessing I didn't have 6 months. Thankfully today, we have precision treatment methods that reduce the guess work. Stay the course. Tom

Lori, Welcome here. Sadly, I am very acquainted with pulmonary nodules. First and foremost, most are not lung cancer. Here is my go-to-resource about pulmonary nodules. I'm only scanned yearly now but I have "phantom" nodules. They wax and wane scan after scan and the only way I retain sanity is to map them on a spreadsheet using the radiologist report description. I also always get a paper copy of all test results including radiologist interpretations of scans. I keep these copies as reference and thereby add precision and understanding to bolster my declining memory. Some folks post the actual language of the radiologist interpretation of scans on this forum so we can help you understand the meaning. We are not doctors but have acquired a lot of knowledge about the obtuse language in CT and PET scan reports. To your question, would a CT Angiogram for coronary disease be able to pick up nodules if present on a previous scan? Maybe. Anatomically, I would think the scan might capture the left lung, particularly the upper lobe. If your nodules are in the right lung or left lower lobe, then perhaps they wouldn't show. Most important, know that pulmonary nodules are not conclusively indicators for lung cancer. Only a tissue biopsy can confirm our disease. There are other plausible explanations for shortness of breath, chest pain and heart rate swings. I hope this helps with the insight. Stay the course. Tom

Marylou, I'm happy you are up and about. It might take some time to get used to your change in respiration mechanics but you'll be breathing like normal in no time. Very happy you've posted your surgical experience to allay the concerns of our members. Stay the course. Tom