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CIndy0121 last won the day on September 23 2015

CIndy0121 had the most liked content!

About CIndy0121

  • Birthday 01/21/1952

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    South Hadley
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    Lung cancer patient/survivor
  • Interests
    Lung cancer, immunotherapy

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  1. Hi, We consistently say, “we know our own bodies best” or “you have to continue to aggressively advocate for yourself until you are satisfied”, etc.etc. To be honest, I have read your story and I do completely understand the anxiety you are having, but most of us will also tell you that the only definitive diagnosis of cancer requires a biopsy and study of the tissue retrieved. Not only is the size of your nodule so small and unchanged that it is more likely a benign nodule that many people can have one or two of. But that’s even too small to biopsy, so they really cannot five you a definitive answer. Normally the nodule has to be at least 1cm or 10mm and located in an area they can access in order to successfully perform a needle biopsy. I am sure they have also assured you that a year is a sufficient amount of time to take another look, but that more frequent scans expose you to unnecessary radiation. This should be encouraging news to you, but with other symptoms, don’t get me wrong, we ALL understand the anxiety of unanswered questions regarding our health, especially with respect to suspicions that a nodule could be more serious. It’s infuriating to us patients to hear things from medical professionals like, “There’s nothing else we can do at this time” when we are trying so hard to get answers. It seems like you have seen the appropriate providers and had the blood tests and imaging to rule out anything serious. You have even tested negative for Lyme which can cause all kinds of havoc years after the initial “infection”. The only other suggestion I would have is a functional medicine/integrative medicine practitioner to evaluate to word of the decade, your “gut” bacteria. There is a substantiated link between the microbiome and problems in other systems or you could have a vitamin deficiency or hormonal imbalance. It’s not unheard of for a woman your age to be entering peri-menopause. I am also probably not the first to advise you (because all of us probably heard it from others at some point ourselves) that you should consider some of the ways that promote relaxation and stress reduction like yoga or meditation or acupuncture, sublingual CBD tincture. Best wishes getting some answers that will satisfy you enough to relax and feel better. Cynthia
  2. A smoker, former smoker or never smoker can get lung cancer and those patients will all be just as helpful to you. Other ALK patients may be helpful.
  3. Lucy, Is there any alternative to methotrexate for RA. I also have an autoimmune disease and my lung cancer is in remission, but they do not want to use methotrexate. I am on prednisone and something “off label” that I had to appeal with my insurance company, but it seemed like the malignancy history was what got me the approval. cindy
  4. Lucy, So glad you felt better after your appointment. It’s really important that you feel heard by your providers. That sounds like a logical plan going forward. I totally know the feeling of encouragement during the “lighted day”, and having those questioning thoughts sneak in as evening comes. You are not completely new to this, so I can see you already are “pacing yourself” and taking one step, one result, one decision at a time. Check back in after your PET and biopsy. We’ll be here! cynthia
  5. MYour mom may be trying to set a “tone” in the family for dealing with her illness. A mother never wants to worry her children, and even though we do not know her, she is not necessarily in denial, which it sounds like concerns you, but is taking it one step at a time. You can only deal with what you know for sure at the time, and the biopsy result is the only definitive answer. Did they test any blood or fluid? The doctor could have been making his “best guess” based on what he can see. Besides stopping the brain bleed, the ER must have done some other imaging like CT scans or MRIs and some lab work. The brain MRI might show if it was the bleed of a tumor or a brain bleed from a blood vessel or something. (? By the way, we do not “know it all”. We have just been there and can share our experiences and some of the possibilities.) Did they go ahead and do a needle biopsy at her ER visit also? (If so, she’s way “ahead of the game” to have had all those tests done in one place during the same visit. So, however your health care network works, usually after an ER visit you have to see your PCP and get a pulmonology referral or thoracic surgeon or oncologist as recommended. This is definitely one of the most difficult parts of the process, especially waiting between results and appointments and the uncertainty of what to do next. Are you near Moffitt or Mayo or Cleveland Clinic satellites in Florida? Let us know how you are both doing. cynthia
  6. Welcome, Lucy! We look forward to what else you learn tomorrow at your appointment and the options for proceeding. I’m afraid I do not understand what complications methotrexate present in this case, except that you are dealing with an autoimmune disease that could affect treatment decisions. Please let us know what you learn and what next steps you are considering. Best wishes and hoping you start out with a Happy New Year! cynthia
  7. Andre, What was the diagnosis of the cancer in each of those lungs that the entire lobe was/will be removed? Why are they calling the lower left issue a second primary lung cancer? We’re they different, I.e. NSCLC, SCLC, adenocarcinoma, squamous cell? Was the upper right lobe collapsed as a result of a needle biopsy? They were unable to reinflate it by inserting a chest tube? Lobectomy was not the intention of the first procedure, correct? Please provide a little more information about the cancer diagnoses. cynthia
  8. I have to agree. You are asking people who have been through this. They would be unable to biopsy a nodule that small. Usually it has to be at least 10mm (1cm) and accessible. A 2-3mm nodule is also below the resolution of PET, so you would not learn anything. Your insurance probably would not approve it and you have already had enough radiation. Tom’s article about nodules should reassure you that most people have them from residual respiratory illness and many have more than one. We totally understand a person’s anxiety when anything irregular shows on imaging or medical tests. But the consensus here is that you can relax about it for at least a year and if it hasn’t changed at all in 12 months, it shouldn’t’ concern you. It sounds like you are paying attention to your lung health, but excessive worrying can cause illness too. Happy New Year and thanks for turning to us with your concerns. Cynthia
  9. Hi, Donna, Your mom has a lot going on. I hope the endoscopy goes well and whatever they find can be treated to restore her appetite and make her feel better. I assume your next step would be to meet with an oncologist, thoracic surgeon or the pulmonologist about the scan results and how to proceed. It sounds like she is more open to the process now that she is not so far away and alone. My input would be that ultimately, the treatment decisions are hers. The back pain could be related to what is going on in her lungs. Often that is one of the early symptoms of lung cancer. Depending on the position of the lung masses, even a needle biopsy is invasive. I am also sorry to say that the involvement of 3 of her 5 lobes, both on the right and left, does not sound too encouraging. She may only be a candidate for systemic treatment like a chemotherapy/immunotherapy combination. I cannot say based on what you have shared, but you will be presented with the options by the medical professionals. Do not be dismayed if one of those options includes considering that she is 87 years old, weighs 85 pounds, has other medical issues and what they call her “performance” status may influence their recommendations. Again, the decisions are ultimately hers based on the information the doctors provide. And as a daughter and son, I’m sure you do not want to put her through a treatment that could make her feel worse. Her comfort and desires should guide you. Listen to the doctors, not what sounds like my (a stranger’s) opinion. cynthia
  10. Tom, The results are encouraging. I bet you’re having a much more relaxing evening! Did the doctor treat you for infection? I understand this has been an experience you’d rather forget about, but don’t completely ignore those symptoms of cough, shortness of breath, blood in mucus and pain. Most of us never had any symptoms, which is why lung cancer is found at such late stages. Do follow up with a pulmonologist; he or she may want to evaluate the hyperinflation and do some pulmonary function tests or give you some breathing exercises or an inhaler or whatever it is they do to care for your generallung health. If that 5 mm nodule was a calcification or scar tissue from a long ago illness, they still may recommend you have it checked for size or any new ones in 6 months or a year. (?) Don’t freak out if they do; it’s good practice to follow up and make sure it’s still 5mm, less or gone and there is nothing new. Lung cancer isn’t just a smoker’s disease. If you have lungs you can get lung cancer. Best wishes. Cindy
  11. Tom, You made it through the CT scan waiting anxiety. You can make it through the ct scan results waiting anxiety now! When will you find out? You never really get used to a different radiologist reading every image, having their own way of reporting and terminology that isn’t always standard. I don’t even know what a “poll” is! Density, nodule, nodular, opacity, consolidation, infiltrate...just when you think you understand something, somebody throws in a new term. If there is a solid nodule visible on the ct scan, they will probably give a measurement in mm (which is small). Many people have benign nodules. Now I sound like I’m contradicting what I was just going to say. In my experience (and I have to assume that in at least MOST others’), a doctoris not going to tell you something just to “alleviate your anxiety”. Believe me, it might sound more comforting,but you don’t want that. You want to know clearly, concisely and with no question unanswered, the truth about your health. Will be waiting to hear your results. Cindy
  12. Thomas, You sounds exactly like what ever other one of us has at least thought when we heard news like this and had frightening symptoms (just to convince ourselves it must be the worst possible condition!) Have you ever been told you have asthma, COPD or had bronchitis several times. The Ct scan will be much more sensitive to what is actually trapping so much air in there. They may see the air sacs have even deflated a bit since the X-ray. If they are “downplaying” your worst fears of lung cancer, ask if a bronchoscope could be more definitive than images. They can even look at your sputum under a microscope or send it out to pathology. Something tells me a clearer images might look like some infiltrate or consolidation that they often want to treat as infection and do the old “wait and see” and have you come back, see if the infection cleared or if something more solid is visible. I remember those sleepless night “like they were yesterday”, but they were over 4 and 1/4 years ago and I was ultimately diagnosed with stage IV NSCLC. So (and you’ll hear that we’re all different, which we are, so don’t compare). Just trying to illustrate that people finding themselves in your position have a lot more to be hopeful about than the people diagnosed years ago. Good luck. Sleep better tonight and let us know when you’ll have your results. Cynthia
  13. Rar, You have definitely come to the right place and just in time. The day before a follow-up six month scan is a time for support and encouragement and understanding that you are anxious about the results. Who wouldn’t be? Our situations have differences and similarities, but what I empathize with most is needing your spouse to be emotionally available when you need it most. (My husband has hung in here with me for 4 years of this, so it’s precisely on days that I am nervous, scared, u certain, lonely, that I need him to be there if only to “lean on” and he held up and have my feelings validated. You had some very tiny features @ 4mm 6 months ago. I am also a “nodule” patient, so I hope you will let us know your results tomorrow and reach out for whatever support or need to vent that you have. I didn’t have a mass or tumor; I had numerous enlarging and increasing numbers of nodules throughout every lobe. You are in out thoughts today and will be here tomorrow and the days after that if you need us! Thinking of you. (Have you considered Moffitt in Tampa, Mayo Clinic or Cleveland Clinic Florida satellite hospitals?) cynthia
  14. Did they treat the “fluid” as potential infection to see if that clears it up at all? Seems like that would be a start at eliminating the possibilities? When the lung linings are inflamed and rub together, it causes more pain than one would imagine it would. How was the pleurisy diagnosed and was it being treated? But that irritation could be infection that had fluid show up in a lobe. Talk to a human person face-to-face, preferably a pulmonologist. He or she may want to do some lung function tests while you are “waiting”. 6 months may be completely reasonable for the 6 mm nodule, and one course of antibiotics and a chest X-ray might answer or provide more information about the consolidation question sooner. Be proactive. Cindy
  15. I hope they were able to get enough tissue from a <3mm nodule to confirm and, if necessary, test for mutations. I have never heard of a biopsy of a nodule that small. What procedure did they use? If near trachea, maybe an endo- or broncho-scopy? Correct me if I’m wrong, LexieCat, but I think a nodule that small would be below the resolution of PET. The biopsy results will probably determine the next steps. All of us here can definitely relate to the shock and overwhelming feeling of receive this initial report. All I can say (in hindsight, of course) is try not to anticipate what might be and try not to look anything up yet. You don’t have enough information yet to locate reliable information, just the kind that will cause additional needless anxiety. Take it one day at a time. Let us know what you learn about the biopsy. Cindy
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