Minh Posted October 30, 2021 Share Posted October 30, 2021 Good morning to all, My latest update. In the past couple of months, I run into too many issues to get treatment plan finalized. After two weeks of technical planning, they were able to biopsied my RLL nodule 1.6cm. And it was adenocarcinoma with TFF-1 immunochemistry and LPA morphology. Then they proceeded to PET/CT scan where they found another 2.6cm nodule in the left lung lingula. But nothing lit up in the PET/CT scan even the 1.6cm cancerous nodule. Now they are planning to get another biopsy for this new found nodule and also drain the fluid in the left lung due to open heart surgery in April. I am super worry and not sure when I will get final treatment plan if tests are not done concurrently instead of sequentially. I have cooperated with them 100% and have asked them many questions trying to move the process faster but to no avail. They claimed they do as fast as they can. But they did tell me that I will be either stage 1a2 OR stage 4 depends whether my 2.6cm nodule and pleural effusion has cancer cells. I have requested to have molecular testing and I am shocked to find out that they don’t do molecular testing during biopsies in their standard practice. They only do molecular testing after tumor resection. Does this sound right? Another question I have is what is shortness of breath feel like? Because I have aortic mechanical valve, heart triple bypass, heart stents, high blood pressure, and diabete. Many times, I feel unstable, slightly dizzy and not sure what causes it? Could it be lung cancer or other problems? I am just a nervous wreck. Can’t eat and sleep! Thank you and hope you all have good weekend! Minh Link to comment Share on other sites More sharing options...
Tom Galli Posted October 30, 2021 Share Posted October 30, 2021 Minh, Oh my! That is quite a basket of problems you are toting. So, let's unpack a bit. First, small tumors sometimes generate unreliable PET standard uptake values (SUVs). Both of yours are small. But your tissue biopsy from the 1.6mm nodule is indeed definitive. You have lung cancer. Let's consider that second tumor biopsy for a moment. When they drain the fluid in your left lung, a pathologist will likely perform a histology examination of the fluid. If the drained fluid exhibits lung cancer cells (adenocarcinoma), then you will stage at IV. While that is not comforting, it may avoid having to endure a second biopsy of the left lingua tumor. So, I'd ask if that second biopsy can be postponed till the drained fluid histology is performed. Molecular biopsies and standard of care are indeed a problem. Unfortunately, to my knowledge there is practitioner discretion in the use of molecular testing for biopsies. Moreover and perhaps more importantly, medical insurance coverage also has a large impact. So they are not yet a standard test. There is, unfortunately, a lot of variance about molecular biopsies. We lung cancer folks hope the variance dissipates quickly. What does shortness of breath feel like? To me it is a slight dizziness, perhaps more appropriately termed a lightness in the head, when I exert myself. I have only one lung and over time, the empty chest cavity fills with fluid. When I squat down, the fluid is pressed against my left lung compressing it, and I feel a little bit light-headed (not really dizzy) when I stand up. But your medical condition is much more complicated than mine so instability because of your heart involvement may in fact be what you are experiencing. I would think two small lung tumors would not be causing your symptoms. Oh by the way, with all your medical complications, I'd be a nervous wreck. But, do tell your doctors about your nervousness. Stay the course. Tom Link to comment Share on other sites More sharing options...
Judy M2 Posted October 31, 2021 Share Posted October 31, 2021 Minh, I'm so sorry you're having these difficulties. You've been going through so much. Tom has really explained things well, and I can't add to that. To me, shortness of breath is being unable to catch my breath when I'm sitting in a chair and not doing any exertion. I told my pulmonologist that I've been having this more often just last week (it's a side effect of my targeted therapy). And I'm getting more out of breath on exertion and taking longer than usual to recover. He has prescribed a longer-lasting inhaler that my pharmacy is having trouble filling, presumably due to supply chain issues. When I do have episodes of SoB, I take a lorazepam to help with the natural anxiety (and also occasional sleep problems). It may be OK for you to take something like that as a cardiac patient because my father (who had congestive heart failure, stents and COPD) took it as well. But your cardiologist can advise you. All of your doctors should know how you're feeling. Molecular testing can also be done by liquid (blood) biopsy, but it's not always as accurate as tissue. And it can be its own insurance issue. I hope you can get some answers and comfort soon. Link to comment Share on other sites More sharing options...
Minh Posted November 1, 2021 Author Share Posted November 1, 2021 Good morning to all, Thank you Judy and Tom for your detailed explanations and sharing your experiences. They already performed both lung biopsy for the 2.6cm nodule and thoracentesis at the same time last week on Thursday. So I have to wait for at least couple more days for the results to see if the lung tissue and fluid has cancer. As for my off-balance feelings? and sob? with or without physical activities, I have been taking many different medications for all my medical conditions: diabetic, heart valve and stent, blood thinner, high blood pressure, and kidney. And it seems like no specialist doctors can pin down these problems. Not sure if medications or actual diseases that causes them. I have gone to various specialists and complained about these symptoms: endocrinologist told me it could be lung fluid and lung tumor problem, pulmonologist told me it could be heart valve and heart stent problem, cardiologist said it could be diabetic medications, urologist said there is nothing wrong with my kidneys, livers, and bladder (except for a few kidney stones), and my family doctor think it's stress related problem and I need to take happy pills. They all suggested different diagnostic tests, treatments, and medications. If I follow up with all that testings and treatments, I would be so over medicated and may be fully bedridden and may not be able to do anything physically and mentally. So, I am back to square one - no clue of what to do! As of now, I am just gonna temporarily ignore my off-balance symptom and only focus on getting cancer treatment ASAP. When I was diagnosed with cancer since end of August (actually I was diagnosed with cancer in April, but I had heart surgery so they could not do anything about it while I was in recovery), I was hoping for some kind treatment couple weeks after that. Boy I was wrong! They keep finding new things wrong with me. At this rate, I may not get any treatment anytime soon. I gonna have to suck it up and wait. I don't think I will get any treatment before Thanksgiving. But I do hope to get some treatment before Christmas. I really wanted to be home for Christmas!!! Oh yes I did have liquid biopsy on OCT/7 and it said ND (not sure what that's mean)! Thank you, Minh Link to comment Share on other sites More sharing options...
LexieCat Posted November 1, 2021 Share Posted November 1, 2021 "ND" usually means "not detected." So presumably they found no actionable mutations (I'm in the same boat). Link to comment Share on other sites More sharing options...
Judy M2 Posted November 1, 2021 Share Posted November 1, 2021 Hang in there, Minh, while you wait for your results and treatment plan. In the meantime, you might want to consider looking at a palliative care doctor now before treatment starts. I should have done that at the beginning but didn't know any better then. Link to comment Share on other sites More sharing options...
Minh Posted November 2, 2021 Author Share Posted November 2, 2021 Hi Judy, Great idea! What kind of doctor does palliative care? Family doctor or oncologist? Link to comment Share on other sites More sharing options...
Judy M2 Posted November 2, 2021 Share Posted November 2, 2021 Palliative care is its own specialty. One of our local hospice companies also has a palliative care practice. I actually met my doctor when my father was hospitalized, so I already knew her when I needed palliative care last year. You could ask your oncologist or PCP for a recommendation. Even your hospital's social worker. Palliative care differs from pain management because they are also concerned with a patient's quality of life. Link to comment Share on other sites More sharing options...
BridgetO Posted November 2, 2021 Share Posted November 2, 2021 Palliative care is a great idea. One of the things they can help with is sorting out complicated medical situations when treatment for one condition can affect another, and this sounds like your situation, Minh. Link to comment Share on other sites More sharing options...
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