Tom Galli

Lynn, Unfortunately, the information you provided about your mom’s health problems validates her hospice decision. Energy decline, appetite loss and depression are all associated with extensive lung cancer. Hospice staff ought to intercede here. Are these symptoms being reported (noticed) by hospice staff? It would be most unusual if they were not noted. I once had a time during treatment when we looked into a hospice provider. That research and all my experience as a survivor suggests that hospice treatment normally engages ahead of end-stage symptoms. Have they briefed you? What can you expect? Things will proceed rapidly and hospice will likely start administering narcotic medication to ward off your mom’s pain and ease her fear. Gather your family close and recall happy family memories. Remind her of your gratitude for her parental sacrifice. Hold her close. Stay the course. Tom

Gina, Welcome here. Lexie is correct about the limitations of the x-ray to detect lung cancer. But even a CT scan cannot diagnose our disease (although the image is a lot more useful as an indicator). Here is some information about the diagnostic trail for our disease. I understand trying to remain calm and hopeful. Here, we've all experience that same state at this uncertain time. I can't help with calm but for hope I give you a synopsis of my condition. I was diagnosed with Stage IIIB non small cell lung cancer in February 2004. I've had every form of lung cancer treatment but immunotherapy (some more than once) and seventeen years later, I'm sill around and doing fine. So if I can live, so can you. There is a chance you don't have our disease. A tissue biopsy is needed to confirm a diagnosis. So stay connected while you navigate the diagnosis trail. We are a good resource to answer questions that you'll likely have by the basketful. Stay the course. Tom

Lynn, Welcome here! I was also diagnosed with Squamous cell at Stage IIIB but I was 53 at the time and otherwise in good health. Lung cancer treatment is a slug at any age. That is not to say a person in their 80's cannot tolerate it, but often older folks have complicating medical problems. Does you mom in fact have other medical issues? Was she offered a treatment plan and if so what was the plan? Here is some information about Lung Cancer Staging and Squamous Cell lung cancer. You might review these sources and generally tell us about your mom's medical health and we'll be happy to entertain your questions about treatment, hospice or anything else. Stay the course. Tom

Aimeemiller, Welcome here. The testing and waiting for results that encompasses the diagnosis phase of lung cancer is indeed maddening. Here is useful information about the tests your dad is having and what the results might mean. The objective of diagnosis testing is to determine a type and stage of lung cancer. Once known, treatment possibilities emerge and these initial treatments collectively are called "a national standard of care." This means that almost everyone with the same type and stage of lung cancer gets the same recipe of treatment. If your dad's plan for initial treatment conforms to a national standard of care, you have options on where it is administered. If the comprehensive cancer center is convenient, then by all means use it. But, if travel is involved, or if travel is inconvenient, then the same treatment may be available at a local cancer treatment center or a local hospital. I normally share this with newly diagnosed and your dad is not quite diagnosed yet. But there might be some good suggestions for the future. The value of this site is our ability to answer questions and explain terms. If your dad is diagnosed with lung cancer, there is a new vocabulary to learn, quickly, and we can help. Stay the course. Tom

KM_NRP, I had a epiglottis problem after a long intubation. That structure is close to the vocal cords and I too found "treatment" was not a physician's deal but a speech pathologist! In my case, I was aspirating fluids into my one lung and developed aspirational pneumonia. I had to perform a lot of "guttural" speech exercises over the course of about 3 weeks to finally get it to seal properly. Very sorry you are having this complication and I do hope it leaves pronto. Stay the course. Tom

KM_NRP, Thanks for your update. I was wondering where you were in your treatment and how things are going for you. Side-effects are the real down side to chemotherapy. I like to think of the magnitude of effects this way: if this stuff makes me feel so lousy, imagine what it is doing to my cancer cells! Stay the course. Tom

Anna, I am very sorry for your loss. Always a sad day when I learn lung cancer claims another life! Stay the course. Tom

Judy, You've told a sad story about your struggles with your father. I am vastly sorry. One point to reinforce your guidance on hospice providers should be highlighted. Hospice providers and nursing homes should be investigated well before one's need arises. Stay the course. Tom

Nav, I am sorry you are dealing with this nightmare! When I investigated entering hospice, now years ago, it was carefully explained that my medical insurance would no longer pay for "curative" care. Moreover, entering hospice is a voluntary action. A doctor may refer one to hospice but the patient needs to agree before being admitted. Judy is correct about liquid morphine. It is used to treat affects of shortness of breath. And, an oxygen concentrator is used also for that purpose. But, you ought to have been told the histology results of your dad's needle biopsy (his type and stage of lung cancer). It is typical for follow-on laboratory examination of biopsy material for biomarker testing and these results typically take 2 weeks. You mentioned your dad was seen by a "hospital oncologist". Sometimes, hospitals employ contract physicians who work only in hospitals. Have you looked for a private practice oncologist, not associated with the hospital? That would be my recommendation along with waiting for the biomarker testing results. Stay the course. Tom

How about that! I do hope the PET shows nothing of concern. Stay the course. Tom

Welcome David, First, let's deal with your dad's testing in the immediate future. A PET scan (explained at the hyperlink) is used to determine if other areas of the body contain metastatic disease. The bronchoscopy will more than likely attempt to biopsy the tumor (anomaly) in the lung. Next, I can't offer an explanation for why there was no effective follow-up from the 2017 PET scan. PET scans can be inaccurate, but I've not read of a 33% inaccuracy rate. The inaccuracy is normally associated with very small tumors. Contrast is normally associated with CT scans, and I've had veins burst while have CT contrast was infused into my veins. Spilling radioactively tagged iodine however would have caused an immediate radioactive decontamination process stopping the test completely. So I think he had a CT in 2017, but the lack of follow-up scans is not good. Masses appear with different opacities, coloration and shades, but a CT scan cannot diagnose lung cancer. Only a tissue biopsy can diagnose our disease. If the bronchoscopy can obtain a tissue sample, a pathologist can diagnose the disease using a prepared slide and a microscope (a histology diagnosis). I'm not well versed in medicine in The Netherlands but it is common in the US after a histology diagnosis for tissue to be sent for further on biomarker testing. If this is available in The Netherlands, I would strongly recommend it be performed. Some types of lung cancer can be very effectively treated, even eliminated by targeted therapy and or immunotherapy. Biomarker testing reveals if you dad's cancer will respond to these new treatment methods. I hope the PET and bronchoscope do not indicate cancer. There are many reasons for lung masses besides cancer. Here is my go to resource on pulmonary nodules. Stay the course. Tom

Karen, Has anyone tried immunotherapy or chemo, then surgery? Yes, I did. That is how my treatment evolved. My diagnosis was Stage IIIB also and pre-surgical chemo did in fact shrink my single larger tumor enough to allow the thoracic surgeon to operate and remove my right lung. I was scheduled for post surgical chemo, adjuvant therapy, but surgical complications kept me from having that treatment and likely as a result, tumors were found in my left lung. Your surgical complication may be two tumors, one in the lung and one in a lymph node and those could be the basis of your surgeon's reluctance. However, the treatment that saved my life, after 5 recurrences was radiation, or CyberKnife, a form of SBRT. As far as test results, they are normally posted to my practice portal as soon as results are available. Medical practices are getting much better about prompt reporting of results but that sometimes causes other problems. Folks don't know what the reports mean. We'll help you with that. If you have questions about words in a report, post the sentence or paragraph, and folks will chime in with the meaning. I do hope your treatment plan is finalized soon. Stay the course. Tom

Nav, I'm very sorry to learn of your father's diagnosis. About 30 days before my diagnosis, I had an x-ray for broken ribs. My GP and I both looked at the film (film in those days) and noted broken ribs. Nothing else was seen. A month later, after coughing up blood in an emergency room, the doctor showed me an x-ray with a 7cm by 2.5cm tumor completely blocking the main stem bronchus of my right lung. So can tumors grow fast? Perhaps but I believe the truth is growth plus limitations of x-rays to detect lung tumors. On the biopsy wait, these days there are 2 types of testing performed for lung cancer. A pathologist's histology examination and a follow on laboratory test to check for tumor mutations. The results of the former diagnose the type of lung cancer and this diagnosis ought to be documented now in your dad's medical records. The latter check for the presence of certain biomarkers that might dictate the type of treatment given to your dad. A 2 to 3 week turn-around on biomarker testing sounds about right. Is this a normal process? Yes except you ought to know the type of lung cancer your dad has right now. We understand lost! We've all been there. I do hope biomarker testing results in a treatment plan that arrests your dad's lung cancer. Stay the course. Tom

Could this be the day in America whose meaning has been forgotten? On this day, many in my neighborhood and small town knowing I'm a retired soldier will wish me "Happy Memorial Day!" While I appreciate the salutation; I'm befuddled by our collective loss of understanding and appreciation. Memorial Day is a day of remembrance and commemoration for those who died in the act of serving in our Armed Forces during war. There is a parallel of a lack of understanding and appreciation that applies to members of our forum. When folks learn of my lung cancer diagnosis, they retort, offhandedly-- "Oh you smoked!" Again, I am befuddled by that response. So, I'll add to my thoughts and commemoration, those who died by lung cancer because officials of our nation believe that smoking cessation is the only effective method for treating lung cancer. We commemorate those who have fallen, under arms or by lung cancer. Stay the course. Tom

Read about it here. Contact your members of Congress and ask they support this vital legislation for much needed VA treatment. Stay the course. Tom

Welcome here. Small cell is indeed difficult to treat. PCI is a recommended treatment because small cell typically mutates to the brain in the form of a multitude of very tiny tumors. This radiation catches them before they cause damage. Immunotherapy is an emerging treatment option for SCLC. Here is information on both small cell and PCI. Note the reference to Immunotherapy as a treatment method that is now FDA approved and is showing promise. Stay the course. Tom

Sarah, Welcome here. You've met some of your new lung cancer family members and they've all given great suggestions. Lou's surgical Tips and Tricks is superb advice and will speed your mother's surgical recovery. You didn't give us insight into the type and stage of your mother's lung cancer. Perhaps she's having a lobectomy in place of a biopsy. In any event, please ensure your mom consults with a medical oncologist after surgery. This is the medical discipline that will screen her to catch recurrences early. During this consult, you might inquire if post surgical "adjuvant" chemotherapy is necessary. Stay the course. Tom

Wyde, Welcome here. I'm a squamous cell guy also and it is wonderful to hear Xalkori is working for you. Stable is grand and I do hope shortly that your stable soon migrates to no evidence of disease (NED). Hold on to hope, indeed. Those are wonderful watch words. Stay the course. Tom

Gary, Welcome here. I am very sorry to learn of your aunt's diagnosis of NSCLC. I recall my anxiety seventeen years ago when I received my diagnosis. That was in the lung cancer treatment dark ages where there were few effective treatments. But there appeared a "just in time" discovery in the form of precision radiation that rid me of my lung cancer despite 5 recurrences. Today, the treatment spectrum is so advanced. As Lexie and Lou state, there are so many effective treatments, some so capable, that they eliminate even advanced stage lung cancer. Your aunt is in the diagnostic phase of our disease. Here is a good synopsis of what happens in that phase. What should you expect? After diagnosis is complete, expect a treatment plan. Further, expect that this plan will work. Stay the course. Tom

Lexie’s comments are well made. There is a thin line between “integrated” and “alternative” “treatments. The former may help you feel better while the latter are scams. Neither are curative. I’m perhaps too sensitive on this point for I know 3 people with lung cancer who chose “alternative” “care” at great expense only to perish quickly. As Lou says, a good diet is a good idea but starting a diet while in treatment may not be the best idea. One’s body needs calories to replenish red and white blood cells diminished by treatment. Stay the course. Tom

Lexie, I’m having the same problem. I did a workaround by connecting to the conference on zoom and the summit site at the same time. Thus I have two windows on my screen.

Are you a master of the written word? If so, you'll appreciate these "Bar Jokes:" A dangling participle walks into a bar. Enjoying a cocktail and chatting with the bartender, the evening passes pleasantly. A bar was walked into by the passive voice. An oxymoron walked into a bar, and the silence was deafening. Two quotation marks walk into a “bar.” A malapropism walks into a bar, looking for all intensive purposes like a wolf in cheap clothing, muttering epitaphs and casting dispersions on his magnificent other, who takes him for granite. Hyperbole totally rips into this insane bar and absolutely destroys everything. A question mark walks into a bar? A non sequitur walks into a bar. In a strong wind, even turkeys can fly. Papyrus and Comic Sans walk into a bar. The bartender says, "Get out -- we don't serve your type." A mixed metaphor walks into a bar, seeing the handwriting on the wall but hoping to nip it in the bud. A comma splice walks into a bar, it has a drink and then leaves. Three intransitive verbs walk into a bar. They sit. They converse. They depart. A synonym strolls into a tavern. At the end of the day, a cliché walks into a bar -- fresh as a daisy, cute as a button, and sharp as a tack. A run-on sentence walks into a bar it starts flirting. With a cute little sentence fragment. Falling slowly, softly falling, the chiasmus collapses to the bar floor. A figure of speech literally walks into a bar and ends up getting figuratively hammered. An allusion walks into a bar, despite the fact that alcohol is its Achilles heel. The subjunctive would have walked into a bar, had it only known. A misplaced modifier walks into a bar owned a man with a glass eye named Ralph. The past, present, and future walked into a bar. It was tense. A dyslexic walks into a bra. A verb walks into a bar, sees a beautiful noun, and suggests they conjugate. The noun declines. An Oxford comma walks into a bar, where it spends the evening watching the television getting drunk and smoking cigars. A simile walks into a bar, as parched as a desert. A gerund and an infinitive walk into a bar, drinking to forget. A hyphenated word and a non-hyphenated word walk into a bar and the bartender nearly chokes on the irony.

Diane, You are always welcome here! I admire your courage, selflessness and determination. Stay the course. Tom

Diane, Welcome here. Glad you moved from lurker to active participant. So many have shared superb advice and information, I've little to add. Save this; I was diagnosed in February 2004 and experienced every form of lung cancer treatment but immunotherapy. If I can live, so can you. Stay the course. Tom

Marilyn, There is no need to replicate or license LUNGevity in Australia. We are an international non profit and Australians are free to use this forum or the LUNGevity.org website. We have many international members and participants. Stay the course. Tom