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Cara.M

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  1. Like
    Cara.M got a reaction from LouT in Husband's diagnostic journey   
    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.
  2. Like
    Cara.M reacted to LouT in Husband's diagnostic journey   
    Cara,
    The counsel your getting here is sound.  I was diagnosed with Stage 1 early on in 2019, had a lower-right lobectomy, no adjuvant treatment and since that time all scans have been negative for malignancy.  So, I’m in the boat of “get the surgery”, but I also believe that each patient can and should decide on the treatment that based on their own wants/needs.  Unless there are other mitigating conditions or reasons surgery (particularly lobectomy) would be the “gold standard” treatment.
    Again, having said all the above the patient’s wishes rule, just make sure that his doctor is giving him all the information on outcomes to make that decision.  I pray for good results regardless of approach.
    Lou
  3. Like
    Cara.M got a reaction from LouT in Husband's diagnostic journey   
    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.
  4. Like
    Cara.M got a reaction from LouT in Husband's diagnostic journey   
    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...
     
  5. Like
    Cara.M reacted to edivebuddy in Though to find   
    I'll post a deeper history in a bit. Retired 11 years.  Air traffic controller, software engineer, now just a beach bum with everlasting Doctors appointments.  And glad I have the opportunity to have them
  6. Like
    Cara.M reacted to LouT in Husband's diagnostic journey   
    Thank you for your update.  We have all fingers crossed that the outcome is a good one but whatever happens we’ll be here for whatever support we can give (which is a lot).
    Lou
  7. Like
    Cara.M got a reaction from Tom Galli in Husband's diagnostic journey   
    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.
  8. Like
    Cara.M got a reaction from Tom Galli in Husband's diagnostic journey   
    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!
  9. Like
    Cara.M reacted to Tom Galli in Is radiation really indicated, here??   
    Cara,
    I am sorry. I guess I am fortunate enough to survive so long that I've outlived the Google site that held the summation of my treatment history. Here it is, in brief.
    Diagnosed February 4, 2024, stage IIIB, non-small cell, squamous cell, lung cancer. First-line treatment: 30 sessions of fractional general radiation to the large tumor (about 4" long and 3/4" in diameter) completely filling the main stem bronchus of my right lung. Adjuvant weekly taxol and carboplation, 6 infusions in total. Result: no evidence of disease (NED) scan after treatment. The objective of first-line was to shrink the tumor allowing the surgeon to remove my right lung. We decided we'd proceed with surgery. Second-line treatment: Open thoracotomy resection of my right lung. A week after surgery, I developed a fistula leak in the sutures of the bronchus stump. This required two follow-up surgeries to repair the fistula and 3 stent insertions. Time-wise, almost a year's worth of surgery and recovery. The first CT scan after surgical recovery showed 3 tumors in my left lung. Third-line treatment: 6 cycles of taxol and carboplatin chemotherapy with an infusion every 3 weeks. The 3-month post-treatment scan showed NED but the 6-month scan showed two of the tumors returning. Fourth-line treatment: 6 cycles of taxol and carboplatin adding the targeted therapy drug Tarceva. Tarceva is now given as a targeted therapy for certain forms of adenocarcinoma. At the time I was given this drug, doctors didn't realize the limitations of the drug. All that was known was the drug worked for a small population of lung cancer patients. Again, I had a NED scan after treatment but my 6-month scan showed a single tumor recurrence. Fifth-line treatment: A CyberKnife precision radiation (SBRT) treatment for the persistent tumor in my right lung. 3 months after this treatment, I had a NED scan (June 2007) and I've been NED ever since. Sorry about using the term tumors to describe your husband's situation. The size you report puts them clearly in the nodule classification.
    Stay the course.
    Tom
  10. Like
    Cara.M reacted to LouT in Is radiation really indicated, here??   
    Cara,
    Tom is the "Survivor" who wrote the blog "10 Steps to Surviving Lung Cancer, From a Survivor".  When you review his history you can see why I recommend it to all newcomers to our forum.  His original diagnosis was 20 years ago, his treatments were so varied, he suffered numerous recurrences, and yet he is still here living life.  Not everybody is a "Tom", but our forums are replete with many survivors, and I look forward to your husband joining that group.
    Lou
  11. Like
    Cara.M got a reaction from TJM in Is radiation really indicated, here??   
    @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!
  12. Sad
    Cara.M got a reaction from LouT in Is radiation really indicated, here??   
    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.
  13. Like
    Cara.M got a reaction from LouT in Is radiation really indicated, here??   
    @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.  
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