Cara.M

Thanks, @LouT - I'm a "read and ask questions" type and, unfortunately, my husband is not. He sometimes relies on me doing that for him, and sometimes wants me to just respect the choices he makes, no questions asked - so I'm trying to walk that very fine line. I've told him that surgery is the best option; I don't seem to be swaying him and I know better than to push. He will start radiation in about a week to 10 days (having his "planning" CT today). His radiation oncologist is very reassuring; I'm trying to figure out how or whether to urge him to be cautious in his optimism. I will still read and ask questions - just in case he turns to me for information and advice - but I don't expect that he will.

@Karen_L - thanks to this forum, I did ask about biomarker testing. My husband is proceeding with planning for radiation, but his doc assures us that the biopsy samples will be sent for biomarker testing, in the meantime.

Husband is afraid/reluctant to "go under the knife." I've tried to tell him the surgery is more "reliable;" his doctors are telling him that SBRT is a viable treatment alternative. I will read the article - thanks.

Got a call from the pulmonologist who performed the 2nd (and 1st) biopsy today, and my husband has Stage 1 (no further staging details given) adenocarcinoma. He is opting for the SBRT radiation, and has set up his planning session. Cautiously optimistic and thankful for the helpful folks in this forum...

An update: my husband apparently wanted to give the first (nearby) doctor a chance, so he set up a second biopsy which he had today. The doc said he'd try to be more aggressive, so we asked more questions about pneumothorax. The pre-biopsy CT scan showed no growth or changes in the nodule since 12/7, so that's good. In reviewing the documents generated from today's procedure, I see that he added a "cryobiopsy" of the nodule (to the needle and forceps biopsies and the lavage), I guess in hopes of getting better/more samples. He did not (it appears) re-sample the lymph nodes and I forgot to ask if they looked okay, but I guess they did. No collapsed lung, so now we wait and hope he was aggressive enough and we can see what, exactly, we're trying to determine treatment for.

I'm moving on from the original post in the "introduction" category: We had a second opinion via televisit with an interventional pulmonologist at a semi-near teaching hospital, who received all my husband's records before we spoke, and who then took his "case" before their tumor board. The advice of the tumor board was to have a second biopsy/EBUS. My husband has decided, so that we don't have to travel, to go back to the pulmonologist who did the original EBUS and see if he'll try again to get enough tissue for a definitive diagnosis. I'm just interested to hear from anyone else who has chosen to try again for a "better" biopsy. Does it make sense to use the same doctor? Part of me thinks - if he wasn't good enough to get enough the first time (or it just wasn't possible), is there any point? And what are the chances that Medicare is going to cover this? I asked my husband what he's going to do if we have the same, undetermined result. He thinks then that he WILL move ahead to radiology. I'm then going to worry over whether we should pursue "Cyberknife" surgery, or if SBRT is enough of a "gold standard" that that will be "good enough." I'm trying to do the reading that others have suggested, so far. It's overwhelming and hard to understand, but I'm trying!

Thanks, @LouT and @Tom Galli. Lou, reading is good. On retiring 3 years ago, I realized I probably have ADHD, and quickly realized my husband's probably there, too - so staying on course with educating ourselves and remembering what we read can be difficult, but I know I have to try. That's probably one of my biggest concerns right now - I don't feel "smart" enough to know what I don't know, and to remember what I'm told. But I appreciate the links and will read the and try to get my husband to read them. Tom, I tried to follow your "Treatment history here" link and it takes me nowhere. Have you changed the location of that? I'd like to read more about your experiences. I find it interesting that you mention all the other nodes he has as "tumors." The doctors we've spoken to so far seem only concerned with the one that reacted to the PET scan and that is growing.

No. We are being told it's LIKELY cancer. My husband's been monitoring nodules (multiple) for a few years. All have been small and stable, until this one (left upper lobe, along a fissure), which appeared larger than the rest and has been slowly growing, and lit up on a PET scan. No one's even mentioned biomarkers, so I'll have to ask about that. We don't know if he'd be a surgical candidate, or which surgery, but my husband is afraid of surgery. I need to ask him the specifics of that - what exactly he's afraid of. I guess my husband's okay waiting for the consensus of the tumor board. I'd be going crazy, thinking about that thing growing in me... Thanks for all the links, and the calming advice.

@Karen_L - may I ask some specifics about your situation? We had a telehealth 2nd opinion with an interventional pulmonologist today. Learned some things that the first set of doctors didn't tell us, and one in particular disturbed me: this doctor says that having radiation first might make it harder to have surgery later if the cancer recurs and/or spreads, because the radiation can cause scar tissue, etc. At least, I think that's what he said (video meetings have their communication issues). Were you ever told that, or was surgery not a consideration, in your case? I'm kind of wishing we hadn't had the 2nd opinion because he threw in lots of things we didn't previously know - I know that's probably a good thing, but it also complicates the decision process. He is going to have the hospital's "tumor board" review my husband's case, so that's good, but another week of waiting.

@LouT He isn't, really. He's had shortness of breath for years - first they thought it was his aortic valve leakage so they replaced that, and it had no impact on his breathing. He's been seeing a pulmonologist for quite a few years and is on all sorts of meds for COPD, but none of them really seem to help much, either. But no new symptoms since the discovery of this troublesome nodule. (Personally, I think my husband's surprisingly active for a 76 year old!) We spoke to a radiation oncologist who clarified that the pulmonologist who did the EBUS didn't get enough sample for the "non-malignants" in the path reports to be relied upon. (My husband is quite resentful that they didn't get more tissue - and he doesn't want to hear that he was warned that it might be difficult to get enough sample. Unfortunately, he focuses on blaming rather than moving forward, sometimes.) So the radiation oncologist definitely said that SBRT was a viable and good choice for him. On taking a day to think about it, my husband is still, I think, wishing that this ISN'T cancer, and so wants a second opinion, which is not a bad idea - so we've started the process of visiting a local reputable cancer center at a local university for that 2nd opinion. Thank you for the feedback. I'll post again if there are more questions!

Happy to have found this site. My husband has long been getting low-dose CT scans for nodules in his lungs (he was a 30+ year non-filtered pack-a-day smoker who quit - mostly - over a decade or more ago). Last CT, he had 4 nodules on the right under 7mm, and 5 on the left under 6mm, but one on the left was 8.8mm and a "new" one was 9.7x8.4mm. His pulmonologist recommended a PET scan. PET scan "impressions" summary: "...focal moderately intense FDG uptake localizing to a solid pulmonary nodule abutting the anterior left major fissure in the posterior left upper lobe which measures approximately 1.5 x 1.4 cm and has an SUV max of 6.7 (slice 89). There is moderate FDG uptake localizing to multiple locations in the bilateral hila. The SUV max in the left hilum is 3.2. The SUV max in the right hilum is 3.5..." So they recommended a bronchoscopy. My husband went to the appointment alone, which was a mistake, as he came away with the impression that the bronchoscopy would remove the nodule. Of course, we learned the day of that it was a biopsy only. The pulmonologist called many days later saying the biopsy results were "non-diagnostic." My husband is opposed to/afraid of surgery, and is leaning toward radiation. But I'm reading the pathology reports from the bronchoscopy and wondering if even that is really indicated, here. There were 4 separate pathology reports, apparently 2 for the nodule and 2 for the lymph nodes (the pulmonologist had told us that his lymph nodes looked all good): 1) Nodule, FNA: "The ThinPrep, conventional smears and cell block slides show scattered fragments of bronchial/lung tissue with reactive changes. No evidence of atypia or malignancy is identified." 2) Nodule, Bronchial Lavage: "The ThinPrep slide shows pulmonary macrophages, mildly increased acute inflammatory cells and background degenerative debris. No features of atypia or malignancy are identified. A GMS stain is also performed and is negative for Pneumocystis or fungal organisms (control stains appropriately)." 3) Station 7 lymph node, aspiration: "The ThinPrep and cell block slides show scattered lymphocytes and histiocytes consistent with lymph node aspiration. No features of atypia or malignancy are identified." 4) 10L lymp node, aspiration: "The ThinPrep and cell block slides show rare lymphocytes and histiocytes suggestive of a lymph node aspiration. No features of atypia or malignancy are identified." Don't those all basically say - NEGATIVE for malignancy? My husband does have Sjogren's Syndrome and a touch of rheumatoid arthritis, both of which we're told can cause inflammation even in the lungs, so I'm not sure why we're being referred to a radiation oncologist. I'd hate for him to not take care of this, if it is indeed a threat - but I'd also hate for him to undergo radiation if there's nothing happening, here. Is the oncologist going to determine from these reports whether treatment is truly indicated? Our consultation with him is TOMORROW ! (I had some trouble getting my account set up - I tried to post earlier!) Thanks for any advice...