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  1. Like
    Curt got a reaction from Tom Galli in First visit to nodule specialist   
    Hollow @Scruboak   I had an 8mm spiculated nodule in my upper right lobe that we watched for a year.  PET scan was negative but I have a pretty significant family history of lung cancer.  That and the doctor didn’t like the way it looked.  I went in for what was called a wedge resection to just remove the nodule and tissue around it for testing.  They tested it while I was in surgery and it turned out to be NSCLC.  They proceeded with removing the entire lobe (lobectomy).  I have not require any follow up treatment.  I was pretty shook when I was told I should do the surgery, and relieved I was finally doing something about the nodule.  Waiting and watching was stressful.  Surgery was not as bad as I imagined.  I’m a little of a year out from it and doing great. 
  2. Like
    Curt reacted to TJM in Shout out to LUNGevityKristin   
    As some of you may remember my cancer diagnosis was changed after the pathology report on the tumor to being a LCNEC stage IIIA. I have struggled finding much good information, including an oncologist who has extensive experience with large cell.
    So I reached out to Kristin to see if she could help. She came thru like a champ. I don't know if I will find what I am looking for or not, but I do know that I am a lot closer to finding it than before Kristin sent me a couple of great resources to check out. 
    Regardless of the results, I just wanted to recognize your effort Kristin. I owe you a beer...😁
  3. Like
    Curt got a reaction from Kate7617 in Scared   
    @REG Definitely not a death sentence!  You’ve already met plenty of people who are proof of that.  Initial phases before definitive diagnosis are very scary but there are good treatments available and things will settle down once you have a plan in place. Hang in there.
  4. Like
    Curt got a reaction from Scruboak in 1 Year Today   
    Exactly one year post lobectomy and cancer free.  It’s strange how scared I am to write those words for fear that I’m going to “jinx”it.  One year later I still have a little bit of numbness on my side and it still feels tight when I cough and sneeze.  Minor given the circumstances.  I feel grateful for where I am.  I have a follow-up CT scan next month and I’ll be nervous.  Part of my new normal.
  5. Like
    Curt got a reaction from REG in Scared   
    @REG Definitely not a death sentence!  You’ve already met plenty of people who are proof of that.  Initial phases before definitive diagnosis are very scary but there are good treatments available and things will settle down once you have a plan in place. Hang in there.
  6. Like
    Curt reacted to TJM in Oncology visit   
    Good visit today. I think my oncologist now understands what I am requesting regarding a diagnosis and prognosis for LCNEC. Will see.
    Slight change of plan tho. We all agreed that an IV is better than a pill so since no radiation at the same time as Chemo makes it possible to get all my Chemo via IV. Means I will postpone my first Chemo till Monday. No big deal.
    Great conversation with the Nurse and she is both professional and upbeat. Hard to imagine actually feeling good about life after a visit for Chemo...yet I do.
    I love politics so looking forward tonight to watching the returns. 
    All in all a good day.
  7. Like
    Curt reacted to Petra in Early confusion   
    Peeps!: Thank you for not saying I shouldn't be here since I haven't yet been diagnosed. I feel the need to prepare myself (my age and history gives me some crappy odds) and I was feeling very anxious. I read a lot of posts on here...you are great folk with amazing stories...awesome good cheer...and more compassion then I have felt in a long time. Thank you. I probably won't post much but will just lurk and read. Happy Valentine's day to a bunch of people who really know the meaning of big heart!!! Special thanks and congrats to the blue toed frog....I mean...the blue toed TOM for his leadership, courage, and amazing tale of survival. Congrats to you all for being survivors and veterans and soldiers!!!
  8. Like
    Curt got a reaction from LouT in Hello from the Forest of WNY   
    Hello and welcome from the island of ENY.   
  9. Like
    Curt got a reaction from May2 in Inflamation/side effects?   
    I haven’t taken Keyruda so I’m not sure of the side affects.  I will say that when you have cancer it feels like all ailments must be because of it.  They should definitely be pursued but hopefully it’s just a cold that will pass.  I had one a few months ago that felt exactly as you describe, though my joint pain was not so bad that I had to ice them.   
  10. Like
    Curt got a reaction from Tom Galli in Atypical carcinoid tumor of the lung   
    Hello @Jannysuzy   I’m sorry to hear about your diagnosis.   I’m glad you found this group.  It is a great place for support.  I was diagnosed with a “Typical” carcinoid tumor last year.   As if there is anything typical about that.  
    The initial time after diagnosis was terrifying for me.  It started to settle down as I found out more and had a treatment plan settled on.  For me it was a right upper lobe lobectomy.  It’s amazing how your mind can switch from absolute despair into its fight response.  
    Hang in there.   
  11. Like
    Curt reacted to TJM in This feels stupid...but its not   
    Hopefully final update on my pup. He is running around like a puppy again and leaving "presents" where ever he goes. He has pure happiness in his eyes (except for briefly after leaving a present), gives me pure happiness in my heart and is just what I needed. My wife Steph is a gem and has been for 26 years. Even my rotten male children get some credit for this great gesture.
    Really not sure how I would have reacted if he had not made it. I tell myself that history tells me I would have been stoic. Not so sure....
  12. Like
    Curt reacted to Terry S in Surgery March 12   
    Hi Lynda:
    I had VATS surgery on December 16th, 2019 and had my lower left lobe out, and 21 lymph nodes (all found to be clear; node was Stage1a).  Strange to say, but I wasn't afraid of the surgery--just wanted it out of me.  I was in the hospital from Monday to Thursday.  I took one pain med and two Motrin on Friday and again on Saturday and then that was it.  I was a bit uncomfortable, but not in pain.  I agree about taking laxatives....they didn't do that at the hospital for the first 2 days, and i ended up with a problem on Thursday.  As you'll be on your own for the most part, you may want to sleep in a recliner.  I needed help getting out of bed the first 3 or 4 days.  I was lucky that my husband took very good care of me.   I work in an office and was able to go back to work 3 weeks later. I know everyone's journey is different, but just wanted to let you know that 2 mos later, I don't feel any different than i did before, except for a tightness (not painful) when i sneeze.   I wish you all the best and hope you can relax a bit.  I wish I had known about this group before i had surgery!  It's great you'll have some insight prior to your surgery.
    All the best, Terry
  13. Like
    Curt got a reaction from Terry S in 1 Year Today   
    @Terry S those first few months after surgery were tough but it gets better.  Take it one scan at a time.  I’ll be looking for your NED post next December.  
  14. Like
    Curt got a reaction from Tom Galli in PET scan this morning   
    @TMC knowing what he is confronting is a big hurtle.  Next is what the treatment is.  Whatever it is there are folks here who have been through it.  Hang in there.   
  15. Like
    Curt got a reaction from TJM in Surgery March 12   
    @LyndaT the ventilator was also my biggest fear.   I read somewhere that there was the chance you could be on one post surgery and was so scared of waking up with a tube down my throat.  I went into surgery not knowing if I actually had cancer and was scared I’d wake up and not be able to communicate to find out.  I asked my surgeon and he looked at me funny.  He said it was incredibly unlikely that would happen.  He said a very low chance and only if my lung didn’t re-inflate.  He also said if I had to be I’d be sedated and wouldn’t know it was in.   I woke up after surgery feeling great.  When they told me it was cancer I was actually joking around with the doctors and my family about it.  The drugs were doing their job.  It hit me like a ton of bricks later that night, but the initial shock and emotion wasn’t what I was expecting.  That came after the drugs wore off.
  16. Like
    Curt got a reaction from LouT in 1 Year Today   
    @Terry S those first few months after surgery were tough but it gets better.  Take it one scan at a time.  I’ll be looking for your NED post next December.  
  17. Like
    Curt got a reaction from Scruboak in 1 Year Today   
    @Rower Michelle baseball practices started in January 😡 .  I need to start a whole other board for my thoughts on that.   A years has made quite the difference.  Kind of hard to believe it went by as fast it did.  
    @Lisa L yours have to be benign.  There is no way both of us are in the minority.  If it weren’t for my family history I’d probably still be watching mine.  
  18. Like
    Curt got a reaction from LouT in PET scan this morning   
    I’d write out a list of questions and bring it with you   Write down the answers    You won’t remember a word the doctor said after you leave    Some doctors are ok with you recording the conversation   Ask if they are ok with it.
    What type of surgery they are recommending and why?
    Exactly what they plan to remove and why.
    How what they plan to remove will affect him near and long term.
    How many of these surgeries have they performed?
    What if any long term quality of life changes are possible.
    Recovery time?
    How long in the hospital?
    Do they anticipate the need for any follow up treatment?  
    Any need for pre op treatments?   Sometimes people will get radiation to shrink a tumor of it is in a difficult spot.
    How do you contact them to ask the questions you forgot to ask or get clarification on something?   
    Surgery is a great option to have   Its scary, but not nearly as scary as you are probably both imaging it is.
    Hang in there    

  19. Like
    Curt reacted to LUNGevityKristin in Surgery March 12   
    Lynda, if you want to be matched with a peer mentor you can speak with one on one, LUNGevity has the LifeLine program that will match you.  Just in case you would like a little extra support. 
  20. Like
    Curt reacted to Terry S in 1 Year Today   
    I had a lobectomy (stage 1a NSCLC) just this past December (2019) and I pray to be able to post those exact same words next December!  It's so helpful to see where someone else is further down the road than myself. 
  21. Like
    Curt reacted to TMC in PET scan this morning   
    Thank you Curt!!! 
  22. Like
    Curt reacted to TJM in 1 Year Today   
    Congrats. Half way to the promised land. 2 years no recurrence and, bingo....those Google Stats really start working in your favor!
    Happy for you
  23. Like
    Curt got a reaction from TJM in This feels stupid...but its not   
    That’s a lot Tom.  The universe definitely has a way of piling it on.  I always hate when people say it’s testing us.  I’ve taken enough test sin my life, but sometimes it does feel that way.  I hope for some sunny spring time walks for you, your wife and your puppy in a few weeks.
  24. Like
    Curt got a reaction from Tom Galli in Support Lungevity When You Shop On Amazon   
    If you use the below link when you shop on Amazon .5% of your purchase will be donated to Lungevity.  Your purchases won’t cost more than normal and you can use the link every time you shop on Amazon.  It a a really easy, cost free way to support a great organization.   Based on the boxes that show up on our porch each day I’d say my wife is on a one woman mission to cure cancer though shopping.  Who’s with her?   
  25. Like
    Curt got a reaction from May2 in Surgery March 12   
    @LyndaT apparently the French are overly cautious.  What a terrible thing to have happen before your surgery.  I can tell you that is not the norm here in the state’s.  You should plan for as many massages as you want after you recover from surgery.  I had a lot of the same questions you had before surgery.  I was also terrified.  Don’t be.  You have already gotten some good insight and advice. 
    I had a VATS surgery exactly (Yes exactly To the date) one year ago today. Robotic surgery has a lot of the same benefits as VATS in terms of it being minimally invasive, having a shorter recovery time and being an affective treatment.  It is preferred for surgery where lymph nodes are involved.   The biggest difference is VATS uses instruments to assist a surgeon where robotic is done more by the robot and assisted by the surgeon.  The biggest reason it’s not done more often is because it is more expensive than VATS (so less hospitals can do it) and less surgeons are trained on it.  It is worth knowing how many of these types of surgeries your surgeon has performed.   If it’s quite a few you should feel pretty good about being able to get it.  I know this in no way feels like you are lucky, but when it comes to how to treat lung cancer you are considered lucky if you can get surgery.    
    When I woke up from my VATS surgery I felt great.  No pain at all.  I had the surgery at 7 pm, woke up around 10 pm, went to sleep that night, woke up the next morning, ate some breakfast and went for a walk around the hospital wing.  The walk was a slow gingerly walk but it was a walk.  I was very scared to get too out of breath but was really supposed at how little my breathing had changed.  I felt so good that I let my pain medication laps later that day.   It turns out the pain meds were the reason I was feeling so good.  When I went longer than I should without taking the meds I was in pain.   They got it under control but I got a good talking to from the nurse about letting them know if I was feeling ANY discomfort.   They had to give me some pretty powerful narcotics to knock the pain back.   Once it was back under control I was ok and didn’t neglect to tell them after that.    
    The most uncomfortable and painful part is the drain tube that you will have in.  That tube will drain fluid from your chest.  It can be removed as quickly as the following day,  I’ve heard of others going home with it in.  Your chest cavity being clear of air pockets will determine when that happens.  Mine was removed Friday morning, I had surgery Tuesday night at 7 pm.  I went home 6 hours after it was removed.  I was really afraid of getting it removed.  The nurses kept telling me it was nothing but I was still scared.  It turned out to be really minimal.  The sensation is weird, not painful.  I felt almost immediate relief when it was out.  
    Coughing and sneezing will hurt.  I carried around a small firm pillow and squeezed it whenever I had to do either.   Coughing is good for your lung recovery.  You’ll need to do it.  I also slept with the pillow so it propped up my arm off my incisions.  
    I was exhausted after surgery.  More tired than I’d ever felt before.  I went home on Friday and for Saturday and Sunday I would go from my bed to an arm chair next to my bed.  I’d walk up, have breakfast, walk, sit in the chair for a little bit then go back to bed.   I took a lot of naps the first ten days.  I normally don’t nap.  I was able to go back to work after about two weeks but I would get tired after a few hours and go home.  My energy level was back to normal within a month to six weeks.  Give yourself the time and rest you need to recover.  
    I found it comfortable to sleep proppped up.  Either with a firm foam wedge pillow in bed or a recliner.  If you are going to be home alone being in a recliner may make it easier on you.  Getting in and out of bed was hard the first few days.  I’d say if you go home for the weekend have someone there with you the first day or so.   After that you’ll be ok to do normal things.  You won’t be able to lift heavy things for a few months so you’ll need help with laundry and heavy shopping bags.  
    I know this is scary.  I was petrified.  I had visions of waking up with a tube down my throat on a ventilator and walking around the rest of my life wheezing and on oxygen.  None of that is even remotely the case.  My breathing is back to pre surgery levels.  I have some numbness around where the tube was.   I’m told that may or may not go away.  When I sneeze it still feels tight.  Overall I feel great and am cancer free one year later.  It was nowhere near as bad as I thought it would be.  You’ll do fine.  
    Any other questions...or fears just ask. 


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