frank2000 Posted February 3, 2018 Share Posted February 3, 2018 Hi, I am 62, male. I smoked 7 years, when I was in my 20's, then stopped for 35 years now. My father passed away in his 50's from lung cancer. I had pneumonia in October, 2017 and was hospitalized for 2 weeks in another country in Asia. They treated me with 3 kinds of antibiotic and I was well enough to come back to US. I bought back the X-rays and CT-scan they did in a CD with me. But the CT is not clear because the pneumonia was not fully cure when taken. As soon as I came back, I called my primary doctor for follow up. He asked me to do an X-ray (11/20/2017), and it showed 'basilar infiltrates'. He asked me to do a follow up X-ray in 2 months and it was done on 1/18/18. X-ray showed the same, 'basilar infiltrates'. My primary doctor then asked me to do a CT scan with IV contrast. This was done on 1/23/18. The radiologist report is below: "There is 1.3 cm round noncalciied pulmonary nodule in the superior segment of the right lower lobe (series 3 image 106). There are subjacent patchy reticulonodular and groundglass opacities and subsegmental atelectasis.... There is 11 X 15 mm right hilar lymph node (series 10 image 52). There is 9 X 25 X 17 mm pretracheal lymph node... Visualization of the upper abdomen demonstrates multiple hypodense hepatic lesions with the largest in the right hepatic lobe measuring 3.5 cm..." My primary doctor office called me the same night, and I asked for a referral of a lung specialist. They referred me to a Thoracic surgeon. I went to see the surgeon next day (1/24/18). During the hour of visit, he asked questions of my history, and family, and prior illness. He examined me and see if any pain (none) or lumps (none). He then focused on that I need a surgery to remove the nodule. He gave me orders to do blood test, pulmonary function test, and a cardio treadmill test. I finished all those tests this week. I am now waiting for my next appointment to see the same Thoracic surgeon next Wednesday (2/7/18). I am very worried that I have lung cancer already. I also worry about the surgery. I am not sure what type of method he is going to use. I hope it is VATS, but not sure. It has been very depressing 2 weeks, and I know I can not wait too long since nodules can double in size in 3 months. I hope I am fit for surgery and I also prepared a list of questions about surgery so I can ask him next Wednesday. I am worried about myself, my family. Not sure what my future would be. Frank Link to comment Share on other sites More sharing options...
Tom Galli Posted February 3, 2018 Share Posted February 3, 2018 Frank, Welcome here and you've got a lot going on. Here is what I know about the radiologist report. You've got one nodule and 2 enlarged lymph nodes. My CT scans have been reporting hypodense liver lesions (hepatic lesions) for years so I'll assume those are not a concern. What I don't know is if the reported 1.3 cm nodule is cancerous. Sometimes surgeons remove entire suspicious legion as an alternative to a needle biopsy to determine the presence of cancer. Might this be your surgeon's intension? I'd ask. What is the surgeon's plan for the two enlarged lymph nodes? I'd ask. If it were me, I'd use the time before surgery to see a medical oncologist and let the oncologist offer an opinion. Stay the course. Tom Link to comment Share on other sites More sharing options...
BridgetO Posted February 3, 2018 Share Posted February 3, 2018 Hi Frank. Welcome here If you haven't found it already, I suggest you go to the main Lungevity site and look at Lung Cancer 101 and also "Asking the Right Questions." https://www.lungevity.org/for-patients-caregivers/asking-right-questions. I'd be inclined to ask about a biopsy.,if one can be done short of surgery, and if not, why. Biopsy can often be done by needle or by bronchoscope. The pulmonary surgeon took my case to a tumor board where various specialists considered how to biopsy it. The consensus was that it could NOT be done without surgery because of its location. A PET scan is a good idea, too, to see if your nodule, lymph nodes or anything else "lights up" on it. I was an exception in that neither my nodule nor anything else lit up. Some smaller, slower growing cancers don't. However, the shape of my nodule was very suspicious, so it was recommended that I have it out. I had a lobectomy by VATS and was diagnosed with adenocarcinoma stage 1a. Of course you're worried about diagnosis, your family, the future. We've all been there and some of us are still there, at least from time to time. We all hope for a cure (NED- no evidence of disease.) There are a lot of new treatments out there for lung cancer. If you read much on this forum you'll see that many/most of us are living good lives whether we have active disease or not. The forum is a good place to find information, support and hope. Please let us know what questions you have and also how your appointment goes. Bridget O Link to comment Share on other sites More sharing options...
LexieCat Posted February 3, 2018 Share Posted February 3, 2018 Hi, Frank, and welcome. You're getting some good feedback and suggestions here. Dealing with lung cancer (or the possibility of lung cancer) is ALWAYS scary. I found that reading up to understand as much as I could and to figure out what questions to ask helped me to feel more in control. We can't control cancer, of course, but we can do quite a bit to get a handle on our emotions so we can keep clear heads and do what we need to do to deal with whatever's headed our way. I, too, would be asking about the availability/advisability of a PET/CT scan before moving ahead with treatment. And a biopsy, too. My surgeon felt there was no point in doing a biopsy because regardless of the result, the nodule was suspicious enough that he wanted it removed. So in my case, the nodule was removed and examined during the surgery itself. When it was found to be cancerous, the affected lobe was removed in its entirety. I was out of work only three weeks and felt almost completely back to normal in a matter of weeks. Mine was very early stage and all I need going forward is regular scans--no chemo or anything else. Link to comment Share on other sites More sharing options...
frank2000 Posted February 3, 2018 Author Share Posted February 3, 2018 Thank you all for your responses and suggestions. English is not my native tongue, so it might not be easy to read, but I will try to be clear. Tom, I read your suggestion of having a good primary doctor in other threads. I have seen my primary doctor for 20 years so I do have some level of trust in him. I spoke with him after his office giving me the referral of a Thoracic surgeon, instead of other type of doctors. He said he also thinks that it is a proper step to think of removing the nodule at this stage. He said he knows this surgeon for 'decades' already and they worked together for other patients. Lung surgery is what they do regularly. He said he can refer me to an oncologist once biopsy is confirmed. I asked if I need a 2nd opinion to review my condition. He basically said the surgeon is trustworthy in our area. I can go ahead and follow the surgeon's plan. As to needle biopsy, I asked my surgeon. He is not in favor of doing needles. He said it is not decisive, and needles go in and out could cause contamination (not exact word but something like that). I will ask him whether the surgery is just for biopsy purpose, or removal of the nodule and surrounding lung tissue. I am not clear on that. We have not discussed at this detail level yet. He said I am jumping the gun too fast. Let's see if I am even fit for surgery. I am 62. Bridget and LexiCat, I took your Questions for surgery list, and added my own questions. I will ask my surgeon about PET scan, and what to do with my 2 enlarged lymph nodes. I hope my surgery can be as successful as yours. After the meeting, I will call my primary to review the conversation and the plan. Thanks again. Frank Link to comment Share on other sites More sharing options...
LexieCat Posted February 3, 2018 Share Posted February 3, 2018 Your experience, and your surgeon's plan, may be entirely different from mine, but there was a sample of lymph nodes removed from the groups of nodes where any cancer would go first. Depending on where the tumor is, there are certain areas of nodes where cancer would show up first on its way to any other locations. So they took a sample of nodes from a couple of the likely locations in my chest, and examined them along with the tumor that was removed, as part of the post-surgical pathology exam. So how it worked in my case was (1) remove nodule and examine it in the lab to see if it's cancer, (2) if cancer, remove lobe and (3) remove a sample of lymph nodes for examination. The pathology report in my case took longer than expected because there was some debate over how far (if at all) the tumor had invaded the pleura (lining of the lung). That was just for staging purposes--the pathologist concluded there was some invasion, so it was staged as 1b, rather than 1a (ultimately did not affect my overall treatment, though I had the option of chemo--which I decided against). OTOH, even though the pathology report was not complete for staging, the pathologist WAS able to determine in a matter of days that there was no cancer in the lymph nodes removed (big relief!). So it might very well be that they will simply remove those lymph nodes at the same time as your surgery and examine them carefully as part of the post-op pathology. Good to hear you're making lists of questions to ask. Just have them continue to explain until you understand--it's a lot of info to be processing at once. And don't be afraid to re-ask if you forget something. Link to comment Share on other sites More sharing options...
Robert Macaulay Posted February 4, 2018 Share Posted February 4, 2018 Frank I AM 69 And going for Lung function test on Tuesday as it was ordered for me prior to meeting my doctors to see if I am suitable for surgery if that is a option in my case. Link to comment Share on other sites More sharing options...
BridgetO Posted February 4, 2018 Share Posted February 4, 2018 Great, Frank, it sounds like you're getting well prepared and checking things out carefully. I was 71 at the time of my surgery and my pre-op testing showed I had excellent lung function. It continues to be just fine now, too. I've never been a smoker, although I did have some years exposed to second hand smoke earilier in my life. Anybody with lungs can get lung cancer! Link to comment Share on other sites More sharing options...
frank2000 Posted February 4, 2018 Author Share Posted February 4, 2018 15 hours ago, Robert Macaulay said: Frank I AM 69 And going for Lung function test on Tuesday as it was ordered for me prior to meeting my doctors to see if I am suitable for surgery if that is a option in my case. Robert, I watched youtube video for lung function test before I went for mine. I am not sure how well I did. I did the treadmill test fine. I am waiting for my appointment next Wednesday. Waiting is the hardest. Tom coined a term, 'Scanziety'. And I have that for my surgery. I wish you pass the test, and successful with your surgery. Frank Link to comment Share on other sites More sharing options...
frank2000 Posted February 4, 2018 Author Share Posted February 4, 2018 15 hours ago, LexieCat said: So how it worked in my case was (1) remove nodule and examine it in the lab to see if it's cancer, (2) if cancer, remove lobe and (3) remove a sample of lymph nodes for examination. So it might very well be that they will simply remove those lymph nodes at the same time as your surgery and examine them carefully as part of the post-op pathology. LexieCat, Are these steps all happened on the same day, in the same operation? Meaning, the pathologist is on scene to do biopsy? And your surgeon will wait for the result. Once the result is known, surgeon then decide on how large the area to remove? And you had this level of detail in your pre-op discussion with your surgeon so he does not have to come out and ask family what his next step should be? Correct? I am putting this scenario in my question list. I am bringing my wife as 2nd set of ears. My first meeting with my surgeon is all a big blur due to my stress. Hopefully, my wife can have a clear head to ask the right questions and the exact procedure for my surgery. Thanks Frank Link to comment Share on other sites More sharing options...
LexieCat Posted February 4, 2018 Share Posted February 4, 2018 Yes--it was all part of the same surgical procedure. That plan was explained to me in advance. The surgeon said he would literally take my resected nodule to the lab and wait for them to examine the cells to determine whether it was cancerous. If it were not, that would basically be the end of the surgery. If it were cancerous, then the lobe would be removed, as well as a sampling of the lymph nodes. He gave me a printed diagram, drew in the locations of the various lymph nodes, and explained which ones they would sample. He also jotted notes about the plan on the diagram, which was helpful so I could remember it later. Actually, I just took a look again at my surgeon's narrative report of the operation. Apparently they did not see cancer cells at first in the part they removed, but the "wedge resection" (the part removed) actually left a bit of the nodule in the remaining lobe, and the surgeon decided that due to the strong suspicion of malignancy, and his belief that it would not be safe to try a further wedge resection, the best course was to remove the lobe. The final pathology did show that the nodule was cancerous--adenocarcinoma, and that it was possibly invading the pleura (lining of the lung). So it was absolutely the right thing for him to do, to remove the lobe. So the plan did change slightly, due to what happened during the surgery itself, but the plan was followed to the extent it was reasonable to do so. Now, this plan was for my specific situation. That might not be the same as what he would have done if the nodule was in a different location or there were other characteristics to consider. But it gives you an idea of how he had a "game plan" that would be followed--always subject to change if circumstances warranted. Link to comment Share on other sites More sharing options...
frank2000 Posted February 7, 2018 Author Share Posted February 7, 2018 On 2/4/2018 at 9:43 AM, LexieCat said: I just took a look again at my surgeon's narrative report of the operation. Apparently they did not see cancer cells at first in the part they removed, but the "wedge resection" (the part removed) actually left a bit of the nodule in the remaining lobe, and the surgeon decided that due to the strong suspicion of malignancy, and his belief that it would not be safe to try a further wedge resection, the best course was to remove the lobe. The final pathology did show that the nodule was cancerous--adenocarcinoma, and that it was possibly invading the pleura (lining of the lung). LexieCat, My wife accompanied me today to see my surgeon. He said my lung test was A+. Heart test was also good. I am a good candidate for surgery. He proposed total 3 variations of surgery. There is one day solution: take lymph note sample, wait 30 minutes, then remove nodule. Option 2: take lymph node sample, stay in hospital and wait for the pathology report next day, and then go in for 2nd surgery to remove the nodule. The 3rd variation, is on day one, remove lymph nodes and nodule, then get both to biopsy, and wait to see results on next day. We chose the first option. My surgery is scheduled on 2/13 (Tuesday). So, he will do a small incision in my chest first to go to the lymph nodes that are close to my trachea because that is what the radiologist report show with enlarged lymph nodes. He will wait 30 minutes for the pathology report on the lymph nodes. He said at this time, the biopsy results is only 85% accurate. The true accurate results will be known the next day. If there is cancer in lymph node sample, he will then remove a larger piece in my right lower lobe, then I will need to do chemo after recovery from surgery. If there is no cancer in lymph node, he will remove the nodule with smaller area. Both lymph node sample, and nodule will be frozen for detail biopsy and results will be known the next day. If any of them found with cancer, I will still need to begin chemo. I will continue to exercise until the day of surgery to build up my strength. I am nervous and scared of the unknown. Link to comment Share on other sites More sharing options...
BridgetO Posted February 7, 2018 Share Posted February 7, 2018 Great that you have a plan. It sounds perfectly reasonable. Good that your heart and lungs are all in order. Will the surgery be VATS or open surgery? Have they recommended sleeping with your upper body elevated to 45 degrees? This will make it easier to breath after surgery. You can get a 12 inch wedge pillow that will give you 45 degrees. I first tried to prop myself with pillows which resulted in a sore neck. The wedge pillow was a godsend. Best of luck with your surgery. next week. I'm glad you won't have too long to wait and worry! Bridget O Link to comment Share on other sites More sharing options...
frank2000 Posted February 7, 2018 Author Share Posted February 7, 2018 10 minutes ago, BridgetO said: Great that you have a plan. It sounds perfectly reasonable. Good that your heart and lungs are all in order. Will the surgery be VATS or open surgery? Have they recommended sleeping with your upper body elevated to 45 degrees? This will make it easier to breath after surgery. You can get a 12 inch wedge pillow that will give you 45 degrees. I first tried to prop myself with pillows which resulted in a sore neck. The wedge pillow was a godsend. Best of luck with your surgery. next week. I'm glad you won't have too long to wait and worry! Bridget O Bridget, The surgery will be VATS. I will have one small hole in my chest for lymph node biopsy, and 3 holes on my right side. My surgeon said he would like to stick his finger or hand in to feel the nodule to make sure instead of just relying on the video sometimes. So, the side hole might be a little larger. He warned me about the pain after surgery. I will take pain than the unthinkable. I ordered a wedge pillow per your recommendation from Amazon. Hope that will work. Frank Link to comment Share on other sites More sharing options...
LexieCat Posted February 8, 2018 Share Posted February 8, 2018 Hey, Frank, Glad you got a plan. I didn't need pain meds after the second day--just ibuprofen. I think you'll be pleasantly surprised at how quickly you'll recover. The worst pain I had was immediately after (sore throat from breathing tube, pain greatly reduced by the next day), and I got sore abdominal muscles from coughing so much--which is expected, and encouraged--it helps clear your lungs and get them stronger. The wedge pillow was helpful, especially the first week or two--after that, I slept better lying down. I live alone, so I kept myself busy the week before surgery cleaning up my house (so I wouldn't have to do anything for a while) and basically getting my support system in place--I had designated friends to notify others about my progress. I also took care of things I'd been postponing like getting my will and advance directive updated. I was overdue, and even though I had no reason to think anything bad would happen in the immediate future, it gave me a sense of having under control what I could control. I think there was also an element of superstition--like warding off rain by bringing your umbrella. Sounds like your doctor is on the ball and it's a good sign that he gave you some options. I'm sure he explained that sometimes the unforeseen happens and the plan has to be adjusted accordingly, but chances are everything will go as predicted. Try not to worry too much--I found that staying busy and having a positive attitude made it all much more bearable. Link to comment Share on other sites More sharing options...
BridgetO Posted February 8, 2018 Share Posted February 8, 2018 HI again Frank, I also think you might be surprised at how quickly you recover. My surgery was VATS and i was released from the hospital the following day with a chest drain in place. Because I had an ongoing air leak, I had the drain in place for 10 days. I was up and about in the hospital the day of surgery and a couple of days later I was walking around the neighborhood at home wearing an oversized raincoat to cover up the drain tube and bag. I thought I looked like some kind of a flasher. The tube was uncomfortable --I learned to move carefully to avoid some zinging pain. Once it was out I had little pain. I had heard about pain after these surgeries and some people do have it, but mine wasn't bad at all. Bridget O Link to comment Share on other sites More sharing options...
frank2000 Posted February 18, 2018 Author Share Posted February 18, 2018 Hi, I had my surgery on 2/13. My surgeon first did an opening in my front neck area and extracted lymph node sample. The pathology report came back with no cancer cells. But they also found fungus infection and potential TB infection. My surgeon came out to tell my wife at least she knows that there is no cancer in lymph nodes. For the next 3 hours or so, surgeon made a 4 inch long incision in my back on the right side, and he ended up removing about 1/4 of my right lung including the nodule and surrounding area that are infected by the fungus. The nodule is a lung granuloma not cancerous. When I woke up, I was in ICU room. My wife is outside talking with a nurse. I asked a nurse close to me if she is crying? She said, no, she is laughing with that other nurse. OK. good news, I guess. The next 2 days, I continued to stay in this isolated ICU because the original pathology report showing potential TB. Everyone has to wear a mask to come in. We told families and friends do not come visit. First, the hospital residence doctor, an internist, came to see me. He was the one who signed to order to admit me, and later discharge me. Then, he asked a pulmonologist to examine my lung. He said they are still checking on my TB status waiting for the culture result. Due to public health issue, they will have to put me in isolation until cleared. The first night was painful since I had a traditional incision wound not VATS method with 3 little holes. I kept asking for the strongest pain shot every 2 hours but I still had no sleep. The next day, pulmonologist came saying they now need to ask an infectious disease specialist to come and see what type of fungus I have in my lung. She came soon and thinks that I have a type of fungus local in south west part of US, in California, Arizona, Utah area. She thinks my pneumonia last October and the nodule are all related to this fungus. But she needs to wait for the culture result to confirm. Later that day, they cleared of my TB and no one needs to wear masks to see me anymore. Soon, they moved me out of ICU to a regular semi-private room. This was the 3rd day in hospital. Day 4, pain is now controlled. Now I learned that I could ask for Toradol every 6 hours, and Norco (4 hours effect) in between to bridge the gap. Doctors continue to visit me. Later that day, the head nurse on this floor suddenly moved me to an isolated room because she was not sure of my TB status even though doctors said I am cleared at this point. Fine, I am back in a private room. Everybody starts to wear masks again. Later that day, my surgeon's colleague (another surgeon) came and examined me and checked the tube fluid. He then removed my tube. The Infectious disease doctor came and said my culture started to grow mold. She is now confirmed that the type of fungus I have is coccidioides immitis. She ordered antifungal IV shot. Later, it is converted to oral pills and I will take it every day. I will continue this treatment for 2-3 months. Day 5, still in isolation room, but nurses said do not worry about the masks. They all know that I am cleared for TB, but no one will go challenge the head nurse. Doctor gave a shower order and an order for a pneumonia vaccine. I was finally discharged at 5PM. I am now at home recovering. Hospital told me that I will need to make an appointment to see my Primary doctor, surgeon, Pulmonologist, and infectious disease doctor for follow up. My new treatment has just begun, but for now I am cleared of TB and cancer. I am now anxious to see all the bills, even though I do have a PPO insurance from work. I wish all friends in this forum who are still fighting with your fight, a speedy successful recovery. Thank you all, Frank Link to comment Share on other sites More sharing options...
BridgetO Posted February 18, 2018 Share Posted February 18, 2018 I'm glad to hear you don't have cancer or TB! You've gone through a lot. At least part of the news is good and you have a diagnosis and are getting treatment. My x-rays and CTs over the years have shown stable scar tissue, and since it wasn't doing anything, no one paid much attention to it. When I saw the pulmonologist for the first time, she looked at my CT and asked where I grew up. II told her central California. She said that my scarring was probably from Valley Fever (cocciddiodes) in the past. Since it's inactive, I didn't need treatment. I never knew anyone else who had it. Bridget O Link to comment Share on other sites More sharing options...
Tom Galli Posted February 18, 2018 Share Posted February 18, 2018 Frank, Simply wonderful news. I'm so happy for you. Rest, recover and get well. Stay the course. Tom Link to comment Share on other sites More sharing options...
LexieCat Posted February 19, 2018 Share Posted February 19, 2018 Yay! So glad to hear it! The good news is, once you've had a chance to fully recover, you will probably never miss the part of your lung that was removed. I had half my left lung removed and notice zero effect on my breathing. I know the surgery was no fun, and I'm not making light of it. Still, compared to what COULD have been, it's great news. Feel better soon! Link to comment Share on other sites More sharing options...
Steff Posted February 20, 2018 Share Posted February 20, 2018 Congrats on the wonderful news, Frank! Best wishes for a full recovery! Link to comment Share on other sites More sharing options...
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