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Curt

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  1. Like
    Curt got a reaction from LadyLynda0712 in Paranoid   
    Yes it is possible to have a 4 cm mass with no other symptoms.  Lung cancer is elusive and often doesn’t show any symptoms until it is larger and has spread.  It is also possible to have missed it on an X-ray.  This photo was posted to a Facebook group I’m in.  I thought it showed what details the different scans could show pretty well.  

  2. Like
    Curt got a reaction from PaulaC in Paranoid   
    Yes it is possible to have a 4 cm mass with no other symptoms.  Lung cancer is elusive and often doesn’t show any symptoms until it is larger and has spread.  It is also possible to have missed it on an X-ray.  This photo was posted to a Facebook group I’m in.  I thought it showed what details the different scans could show pretty well.  

  3. Like
    Curt reacted to LouT in Introduction - CM   
    Hi, I realize I'm jumping in on this pretty late in the chain, but I see that you've received some good advice so far.  Yes, people do tend to develop nodules for any number of reasons.  It could be that it formed as a result of inflammation, infection or some other irritation.  Some of these nodules exist without further growth and never cause symptoms.  BTW, 60% of nodules detected are NOT cancerous.
    But, if they do find that the nodule grows or changes character in some other way they could always do a PET Scan to see if it "lights up" in reaction to the radioactive sugar that is administered.  If not and there is no growth or change to the nodule a doctor will continue to take a watch and see approach.  If after two years there is no change then there is no further monitoring of that particular nodule.
    So, in agreement with others here, you do not seem to show symptomatology for that nodule to be positive for cancer.  But, I also agree that I would not wait for one year for a follow-up scan.  Six months would be more reasonable for this type of nodule.  
    Having said all of the above you do seem to have some physical complaints that (as of this moment) do not seem to be connected to the nodule.  I would be aggressive to determine the reason for the night sweats, digestions issues and such.  At the end of the day they could be caused by a wide range of things from anxiety to some sort of inflammatory illness.  So please be assertive and get the answers that will put your mind at ease regarding the cause of the symptoms and a certainty that the nodule they found is not a cancer problem.
    In the meantime, take some time to relax; ensure that you are eating healthy, getting enough sleep, exercising regularly and setting aside daily time for contemplation (meditation, prayer or whatever you prefer).  Keeping yourself basically healthy can only help you in going through the tasks of resolving the issues you've described.
    Please focus on your well-being and keep us updated.
    Lou
  4. Like
    Curt got a reaction from BridgetO in Paranoid   
    Yes it is possible to have a 4 cm mass with no other symptoms.  Lung cancer is elusive and often doesn’t show any symptoms until it is larger and has spread.  It is also possible to have missed it on an X-ray.  This photo was posted to a Facebook group I’m in.  I thought it showed what details the different scans could show pretty well.  

  5. Like
    Curt got a reaction from Susan Cornett in Paranoid   
    Yes it is possible to have a 4 cm mass with no other symptoms.  Lung cancer is elusive and often doesn’t show any symptoms until it is larger and has spread.  It is also possible to have missed it on an X-ray.  This photo was posted to a Facebook group I’m in.  I thought it showed what details the different scans could show pretty well.  

  6. Like
    Curt reacted to Rower Michelle in intro Loren   
    Hi Loren
    Its nice to meet you.  Yeah, I understand where you are coming from. I’m a 51 year old never smoker diagnosed with Stage IV ALK Positive NSCLC. I had bone Mets in the same places you did but other than a persistent cough, there were no symptoms until my diagnosis in September 2018. 
    Initially the onc had a very poor prognosis of 6-12 months. We started making end of life preparations.  It was a horrible time.  In October, molecular testing revealed a rare oncogene- ALK. We discontinued the Carbo/Alimta/Keytruda   
    I saw an Integrative Oncologist who essentially helped us put life back on track. He gave us lots of reading material including Stephen J Gould’s eassay “ The Median isn’t the Message”.  If this guy could be the odds then so could I.  
    Today I’m taking a targeted therapy for which I am so grateful. It’s an effective drug with some side effects that aren’t even worth complaining about given the big picture. 
    I believe the will to live is stronger than any physicians prediction.  (See Viktor Frenkel’s Man’s Search For Meaning). Diagnosis is not prognosis! 
    Glad to have you here. 
    Michelle
  7. Like
    Curt reacted to Rower Michelle in Swimming in Questions   
    Hi Marie-
    I’ve been buried in lung cancer research these last few months. While brain Mets are very common upon diagnosis- they are not a predictor of overall treatment outcomes. 
    In the book written by Diana Lindsay, “Something More Than Hope” she talks about her experience with brain Mets 14 years ago!  Today she remains cancer free or NED (no evidence of disease). 
    Keep us posted- so glad you are being treated in the US. 
    Michelle
  8. Like
    Curt reacted to Susanrae in Swimming in Questions   
    Hi Marie:  Susan Rae here.  Very sorry to hear the bad news; but, on a positive note, you are a member of a great group that will provide you with good information and good support...both of which are invaluable while fighting this fight.  In April 2019, I was diagnosed with Stage IV lung ca with brain metastasis.  Today I had my second immunotherapy treatment.  I don't know what I would do WITHOUT the support and information provided by the LUNGevity group.  The lackadaisical attitude of some of the healthcare professionals you have encountered in Canada is awful; very good to know you will be treated in the US.  Take care now, Susan Rae
     
  9. Like
    Curt reacted to Laurel in Mom Just Diagnosed   
    Your mom is blessed to have you at her side. Often, the patient can have trouble focusing on what is being said....I know I did.  Focus on getting quality and timely treatment.  Take times for walks...for joy. Hugs.
  10. Like
    Curt got a reaction from ColleenRae in Mom Just Diagnosed   
    Hi Kiera.  Welcome.  I’m sorry to hear of your moms diagnosis.  Steff has provided some great advice and encouragement.  She’s right regarding current treatments and prognosis.  I can tell from your post you are ready to confront whatever is required for your mom.  Your mom is lucky to have support like that.  
    I can relate regarding differing opinions on treatments.   It can be confusing and upsetting for all involved.  The only advice I can give is to focus on what your mom wants.  Her feelings and wishes are the most important.  
    Hang in there.  The initial part after diagnosis, before a treatment plan is in place, holds a lot of uncertainty and stress.  That all consuming feeling will start to pass as a treatment plan is settled on.  I’m the meantime plan some things with your mom that don’t have anything to do with her diagnosis.  Don’t push life aside because of it.  Enjoy the moments in between doctor visits and treatments.  Whether your mom survives five years or fifty you won’t regret those times. 
  11. Like
    Curt reacted to Steff in Mom Just Diagnosed   
    Kiera,
    It's not wrong to feel hopeful, although I understand the feeling.  I too have been the main caregiver/advocate for my mom with advanced stage NSCLC adenocarcinoma.  I was feeling very hopeless when my mom was originally diagnosed but was even more hopeless when she was diagnosed with her recurrence.  My mom's mom, brother, and best friend all died from lung cancer.  We had not seen any positive outcomes after treatment, so I was very scared.  But, here we are nearly 4 years later.  
    I originally reached out to these forums in the search for hope and found it.  My goal now is to (hopefully) provide hope to others.  See, just 5 years ago, your mom's Stage IV diagnosis was a likely death sentence.  Now it is not.  With advancements in lung cancer treatment, for many, lung cancer is being treated as a chronic disease.  Radiation and chemo are no longer the only option and in fact, sometimes it's not even the first line of treatment.  You may find that your mom will have a couple of treatment options, depending on her biomarker testing.  
    It's great that you are keeping a notebook full of questions.  Continue to do that. Keep everything in one place and take it to every doctor's appointment. As your mom progresses in treatment this notebook will be able to demonstrate if there has been any health changes that are cause for alarm.  With no regular documentation, small health changes are hard to identify.  LUNGevity has some great questionnaires for folks in different phases of their journey, I used them to help me frame my thoughts.  You can find the questionnaires  here.
    I could go on and on, but I will leave you with this...I wish I had a magic wand for you, but I don't.  But know that you are not alone - we are here for you.  Please reach out to us whenever you need.  You will gain a lot of helpful information from the warriors here and you will also see that there is hope.
    Take care,
    Steff
     
  12. Like
    Curt got a reaction from LouT in intro Loren   
    Hi Loren.  Welcome.  I’m sorry to hear about your diagnosis.  I can relate to the panic that sets in when you let your guard down.  I can also relate to the exhaustion keeping that guard up can bring.  Feeling better today than when you started is amazing.  You are definitely NOT alone in this.  You’ll find plenty of people here willing to answer your questions and support you. 
  13. Like
    Curt reacted to Irwin1 in Lung Cancer & OCD   
    I have OCD and waiting for my diagnosis. What I find that helps is distraction ,distraction, distraction. You must keep your mind busy and not have time to think about the cancer.
         The hard part is finding what distracts you..
        I have become a sports fanatic. I bought the book Anti Cancer Living. And other small things. 
        But the secret is to be a fantastic at something other than thinking about your condition.
         I am not a psychologist. I am only tell you what has helped me!
                 Irwin
  14. Like
    Curt got a reaction from Mally in Mally   
    Lymph nodes do swell for all types of reasons.  Yo can do a lymphatic massage to relieve some fluid and inflammation.  I would check with your doctor first before doing one. 
  15. Like
    Curt reacted to Barb1260 in Am I going crazy?   
    Lol Michelle. I found pizza in GA made be 2 brothers from Brooklyn. Bagels are elusive. 
  16. Like
    Curt reacted to BridgetO in What could it be? What else should I do?   
    I would talk to your consultant about what this nodule looks like to him/her. Is this doctor a pulmonologist? I , too, had a nodule found in a CT scan for something else. It was a little smaller than yours. I had a repeat scan 3 months later and it had grown a little.  My pulmo said that it was supicious for cancer because of its shape- spiculated (spiky outline). It did not light up on the PET scan at all. Because of its location it couldn't be biopsied without surgery and the pulmo and the thoracic surgeon both thought it should come out. So I had a lobectomy and it was indeed cancer, adenocarcinoma stage 1. I'm glad I decided to have it out! I needed no further treatment, just regular scans to watch for possible metastases.
    So if I were you, I'd want to know if the nodule has grown any and what it looks like.. Best wishes!
  17. Like
    Curt got a reaction from CM_in_PNW in Introduction - CM   
    Many of us show up to this site well before a diagnosis with just something showing up on a scan.  I did with an 8 mm nodule that was found by accident and spent a year with periodic tests.  I get the stress and worry.  We are here for you cancer or not.  Let’s hope for not.  
  18. Like
    Curt reacted to CIndy0121 in Introduction - CM   
    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
  19. Like
    Curt reacted to LouT in Introduction   
    Irwin,
    You've already gotten some great advice, hope and input from the rest of my lung family here and I wanted to just add my experience to what you've received so far.  When I was first aware that this was going to be lung cancer (although the final diagnosis would come in the operating room) I immediately went to a very dark place and only thought of my death.  I had seen my mother die of lung cancer and was with her on her last day so I already knew what I was in for.  After all, not much could have changed in the past 35 years, right?
    Well, of course a lot has changed.  I took the advice of others here and kept away from Google and even WebMD (my normally trusted source), but I listened to my Pulmonologist and the Thoracic Surgeon.  They kept talking to me about the process, prognosis and none of what they said agreed with the picture I had painted in my own head.  So, I was stuck between hope and total desperation.  Then I got a private message from a member sharing his fear and how nothing turned out the way he imagined it would be (he, like me, had a lobectomy).  I must have read that message 10 times and went back to it a few more the next day.  After that I decided to listen to my doctors (and my family here) and believe that the plan they laid out for me was going to have a good outcome and, to my own surprise, it happened just that way.
    Yes, they biopsied me on the operating table and it was lung cancer; yes I lost a part of my lung; yes there is always a chance of recurrence, but I don't read Google or any other stats.  I go by what my doctors tell me and by the stories that I've seen shared here that were inspiring and hopeful in circumstances much more dire than mine.
    "Diagnosis time" stinks...you wait and hope and fear and wait some more.  But you've been given time, hours, days despite the fear you need to fill that time with loved ones, funny shows (for me it was Seinfeld and the old Honeymooners series) and connect (here and in your own neighborhood).  Fight despair with the same energy you'll learn to fight this disease.  You may not always feel it, but you have this strength in you.  You have so many people (including many here now) praying for you that you need to let those prayers lift your spirit.  I also love Michelle's mantra...find the one that means something and does it for you.  In my case there were too many carnal verbs in mine to share it here.
    Cancer stinks and lung cancer stinks even more, but you have so many people (your medical team, family, friends, prayer partners and now us) on your side so you are not alone.
    Lou
  20. Like
    Curt reacted to Jane Lee in Am I going crazy?   
    Hi Barb
    I;m sorry to hear you are feeling  like this.  As you are aware I am also on durvalumab, but I'm not sure that depression is one of the side effects.  However, I am also on anti-depressant medication as my oncologist considers that it is quite normal  be depressed when you have cancer.  This has helped keep my spirits up.  I think the whole process of doctors appointments, treatment, test, eating properly,, exercising as well as trying to look after a family is enough to make you stressed and increase you level of anxiety.  We sometimes need to remember to give ourselves a pat on the back as we are doing really well under very trying circumstances.  Regardless, if you continue to have feelings of sadness I would suggest you discuss it with your doctor.
    Thinking of you
    Jane  
  21. Like
    Curt got a reaction from CM_in_PNW in Introduction - CM   
    Hello and welcome.  I’ll first say that if you are concerned you should pursue a diagnosis.  You know your body best and if you feel there is something wrong you should continue to pursue  what that is.  I am not a doctor and please don’t feel like I am dismissing your concerns with the next part.  A 3x3x6 mm nodule is VERY small.  A nodule that size is in all likelihood not cancer.  If it is cancer and it is that small and isolated only to that one nodule it would not likely cause any symptoms.  The tricky part about lung cancer is it goes symptom free until it’s grown and spread.  It sounds like neither is the case for you.  The typical protocol for nodules is to watch them.  A year is long.  It is usually six months.  Three months if you have other predetermining factors like age, smoking history, family history, etc.  You should continue to watch it   They will watch to see if it grows   If it grows to bigger than 1 cm they will do a PET scan.  That will provide better indication, though not always definitive, of what the nodule is.  If it doesn’t grow at all for a bunch of years they will probably opt to spread the scans out further   Maybe every year or longer.  
    Given your symptoms I’d continue to pursue a diagnosis but I don’t think I’d jump to a lung cancer conclusion so quickly.  You should watch the nodule, but given it’s size it’s REALLY small.  There are lots of other things besides lung cancer that can cause those symptoms.  My wife had had Lymes disease and Rocky Mountain Spotted fever.  She experienced most of the symptoms you described with both of those.  
    Not knowing what is wrong is very frustrating.  I hope you find some answers soon.  
  22. Like
    Curt got a reaction from Tom Galli in Introduction - CM   
    Hello and welcome.  I’ll first say that if you are concerned you should pursue a diagnosis.  You know your body best and if you feel there is something wrong you should continue to pursue  what that is.  I am not a doctor and please don’t feel like I am dismissing your concerns with the next part.  A 3x3x6 mm nodule is VERY small.  A nodule that size is in all likelihood not cancer.  If it is cancer and it is that small and isolated only to that one nodule it would not likely cause any symptoms.  The tricky part about lung cancer is it goes symptom free until it’s grown and spread.  It sounds like neither is the case for you.  The typical protocol for nodules is to watch them.  A year is long.  It is usually six months.  Three months if you have other predetermining factors like age, smoking history, family history, etc.  You should continue to watch it   They will watch to see if it grows   If it grows to bigger than 1 cm they will do a PET scan.  That will provide better indication, though not always definitive, of what the nodule is.  If it doesn’t grow at all for a bunch of years they will probably opt to spread the scans out further   Maybe every year or longer.  
    Given your symptoms I’d continue to pursue a diagnosis but I don’t think I’d jump to a lung cancer conclusion so quickly.  You should watch the nodule, but given it’s size it’s REALLY small.  There are lots of other things besides lung cancer that can cause those symptoms.  My wife had had Lymes disease and Rocky Mountain Spotted fever.  She experienced most of the symptoms you described with both of those.  
    Not knowing what is wrong is very frustrating.  I hope you find some answers soon.  
  23. Like
    Curt reacted to 0621121974 in TB with lung cancer??   
    MRI of the brain results today - still stable at 9 months 😊. 
     
  24. Like
    Curt reacted to Isabelle49 in Introduction - Isabelle49   
    I did a little research on the oncologist and he has been in the field for 20 years and is very heavy into research related to neuroendocrine tumors as well as other forms of lung cancer and seems to be published quite a bit. Very much into tumor/medication sensitivity. So I may have a really lucky strike!!! Thanks all.
  25. Like
    Curt reacted to Rower Michelle in Introduction   
    When your ready- you can check out the self healing meditation CDs from Candace Pert and Bellaruth Naperstack.  I find them helpful visualization tools for my mind to heal the body.  
    I had to buy a good old fashion CD player/portable boom box however it’s proved to be a solid investment.  
    Anti Cancer Living covers a lot of the mind body medicine.  
    Hope you had a better day today! Remember the sun always shines after the rainstorm. 
    Michelle
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