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Curt

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  1. Like
    Curt reacted to Rower Michelle in MRI Scheduled 2-6   
    The results are in- no cancer on the spine!  The Alectinib knocked it out!  Thanks to my national support team for the good wishes & prayers! 
    Chest CT is 2-18..... forward march!  
  2. Like
    Curt reacted to Lisa L in Wedge Lobectomy Scheduled Feb 26   
    Curt I’m glad you will be getting answers in a few weeks and I’m sure it will be fine.  Like I said I finally see the pulmonologist on the 13th and I’m sure he will have me wait another month for the ct scan.  Hope you enjoy your trip to Mexico, after I find out what doc says I’m going to Hawaii for 12 days.  Keep us posted.
    lisa
  3. Like
    Curt got a reaction from LexieCat in Wedge Lobectomy Scheduled Feb 26   
    Lisa I have been feeling pains on my rights side but as Lexi said it is highly unlikely it is a results of the nodules.  Stress and tension can have amazingly negative affects on your body.  I’m chalking it up to that.  As my very wise father said, “at a certain point in life if I wake up without any discomfort I’ll start to worry”.  
  4. Like
    Curt reacted to LexieCat in Wedge Lobectomy Scheduled Feb 26   
    Yeah, that was the plan with my surgery, too.  Because there was no biopsy, they did the wedge resection first.  I found out afterward that the resection did not show cancer, but my surgeon was sure enough that it was, that he proceeded with the lobectomy anyway.  (It also turned out that the wedge resection did not get ALL of the nodule).  Anyway, glad he did, because the pathological exam of the tissue removed in the lobectomy showed that it WAS cancer, and that it was "deep," with possible pleural invasion (according to the pathologist--my surgeon didn't think there was any pleural involvement).
    Actually, though, even if it had turned out not to be cancer, I would not have been upset.  I feel just fine and don't miss the missing lobe at all.
  5. Like
    Curt reacted to Tom Galli in Wedge Lobectomy Scheduled Feb 26   
    Curt,
    Sorry about the surgical communication gap.  I was lucky, my surgeons completely explained everything but I know people who get very little explanation.  I also know lung cancer survivors who wanted very little explanation.
    Lung surgery is difficult to explain. Often surgeons only get a "pencil thin" view of the problem before and the situation vastly changes during surgery. Sometimes there is too much uncertainty.  Your surgical condition typifies the uncertainty. Then there are the vocabulary challenge, the medical abbreviations used in surgery speak, and even concern about potential litigation that hinders communication.
    It is complicated but you have an approach and I do hope your VATS solves the problem.  Nothing yields a better path to NED in our disease than surgery.
    Stay the course.
    Tom
  6. Like
    Curt got a reaction from Tom Galli in Wedge Lobectomy Scheduled Feb 26   
    Hi Lisa.  Thank you for the light and thoughts.  I have been keeping myself distracted until the biopsy at the end of the month.  I had a trip to New Orleans this last week for work and a vacation to Mexico in a few weeks.  The distraction is good.  I am looking forward to getting this either over with or knowing what the next steps are.  I appreciate your thinking about me.  The support on this site is amazing.  
  7. Like
    Curt got a reaction from Tom Galli in Wedge Lobectomy Scheduled Feb 26   
    Hi Lexi.  Yes it is going to be VATS.  The doctor tells me the biopsy or the lobectomy are the same procedure. The only difference is how much of the lung is removed, a small nodule or an entire lobe.  That actually created a lot of confusion for me with the first doctor.  She didn’t do a very good job describing that and I left thinking the only option was the full lobectomy, not the smaller wedge resection. The second option cleared that up.  I followed up with the first doctor and it turns out that was also her plan, it just wasn’t as clearly explained.
  8. Like
    Curt reacted to Lisa L in Wedge Lobectomy Scheduled Feb 26   
    Curt I have been thinking about you..I know you are scared I am also scared and you are probably not getting on here trying not to think about all this until your surgery which I understand totally. If you need a sounding board I am here, I haven’t even got a diagnosis or seen my pulmonologist until feb 13 but yet I feel we are in the same boat so I am, just know I am listening my friend. Love and Light ❤️
  9. Like
    Curt got a reaction from LexieCat in So frightened   
    Thank you Lisa.  We do seem to be on similar paths.  I’m hoping it’s nothing for both of us.  The early testing does create a lot of uneeded stress for the 60% of people that have nodules that are benign.  It does also provide a potential for a cure for the other 40% who do have cancer.  I’ve been told that some people can have lung cancer for a very long time and it never grows.  My grandmother had a nodule on her lungs for 20 years that never grew.  They found it when she was in her 70’s and they opted to not do a biopsy and just to watch it.  She ended up passing away in her 90’s, her passing was not related to cancer or her lung nodule.  Spiculated is the word that rings in my head as well.  When I went to Sloan Kettering for a second opinion they said that does increase the concern but they said they see plenty of nodules that are spiculated that are not cancer.  Whether or not it grows over time and whether it glows on the PET are more concerning. They have greater concern for me because of my family history.  My father passed away from lung cancer and three of his sisters have had it, two of them also passed away.  The one that is still alive had a lobectomy and has been NED since.  They gave me the option to continue watching it or go ahead and do the surgery.  I’ve been at this for almost a year at this point.  I’m ready to know what it is and what needs to be done going forward. 
    My best advise is don’t think about it anymore.  Worry about it when your next scan comes around.  Until then assume it’s nothing and carry on with life.  Just make sure you do the follow up.  There was a part of me when the time came for my follow up that really didn’t want to put myself through it again.  You have to do the follow ups.  
  10. Like
    Curt reacted to Lisa L in So frightened   
    Ok Barb just read an article on them and I think I’ll just chill out with what my pulmonologist office said and go with the flow until next Scan ..and you know I will have a glass of wine 🍷 for you ...
  11. Like
    Curt reacted to Lisa L in So frightened   
    Curt I am trying to take your advice and just live my life and forget abt it until my next Scan , I do have a wonderful lady I originally called at Cancer Center Treatment of America that wants me to send her my scans and she will give to her oncologist nurse I guess a second opinion since I was a smoker ..so going to do that tomorrow I mean why not...and Lexi I feel as tho I should pay you I mean you are better than my therapist..thank you I’m just trying to just not think abt the dreaded nodule ..thanks guys ..love and light ❤️
  12. Like
    Curt got a reaction from Tom Galli in So frightened   
    Thank you Lisa.  We do seem to be on similar paths.  I’m hoping it’s nothing for both of us.  The early testing does create a lot of uneeded stress for the 60% of people that have nodules that are benign.  It does also provide a potential for a cure for the other 40% who do have cancer.  I’ve been told that some people can have lung cancer for a very long time and it never grows.  My grandmother had a nodule on her lungs for 20 years that never grew.  They found it when she was in her 70’s and they opted to not do a biopsy and just to watch it.  She ended up passing away in her 90’s, her passing was not related to cancer or her lung nodule.  Spiculated is the word that rings in my head as well.  When I went to Sloan Kettering for a second opinion they said that does increase the concern but they said they see plenty of nodules that are spiculated that are not cancer.  Whether or not it grows over time and whether it glows on the PET are more concerning. They have greater concern for me because of my family history.  My father passed away from lung cancer and three of his sisters have had it, two of them also passed away.  The one that is still alive had a lobectomy and has been NED since.  They gave me the option to continue watching it or go ahead and do the surgery.  I’ve been at this for almost a year at this point.  I’m ready to know what it is and what needs to be done going forward. 
    My best advise is don’t think about it anymore.  Worry about it when your next scan comes around.  Until then assume it’s nothing and carry on with life.  Just make sure you do the follow up.  There was a part of me when the time came for my follow up that really didn’t want to put myself through it again.  You have to do the follow ups.  
  13. Like
    Curt reacted to LexieCat in So frightened   
    Curt makes a very good point.  In his case, there is an additional risk factor (family history) indicating a higher likelihood of cancer.
    Lisa, try thinking about it this way.  If you hadn't gone in for your scan, you wouldn't even know this nodule was there.  It's STILL early detection, if it turns out to be cancer.  Your nodule is 9 mm right now.  It typically takes half a year or more (sometimes MUCH more) for a tumor to double in size.  So even assuming it's cancer, it's still likely to be WELL below the threshold for Stage I (3 cm) when you go back for your next scan.
    Remember, there's a reason they don't recommend lung cancer screening for everyone.  It's precisely because of this anxiety and additional testing and, possibly, unnecessary surgical procedures.  There's always a need to balance the likely benefit against the risks.  That's how they develop the diagnosis/treatment protocols.
    My cancer was "officially" (with a bit of disagreement from my surgeon) staged at Ib.  If it had been Ia, chemo is never recommended because the risks of chemo outweigh the probable benefit.  As it was, I was on the borderline, and Stage Ib is the only one where it's virtually a toss-up whether chemo provides more benefit than risk.  So I read up on the risk/benefit studies and opted not to have chemo.  
    Cancer is scary--no doubt about it.  But it's important to try not to let the fears rule your decisions.  Some people insist on driving rather than flying because plane crashes are so scary.  Yet, the actual risk of driving vs. flying is much greater.  By driving, they actually put themselves at greater risk.  
    Knowing the nodule is there is more than half the battle.  If it weren't reasonably safe to wait, your pulmonologist (who you said is great) wouldn't be telling you to come back in a few months.
     
  14. Thanks
    Curt reacted to LexieCat in Wedge Lobectomy Scheduled Feb 26   
    Hi, Curt,
    I'm pretty sure that you'll feel, physically, pretty much the same whether you have a lobectomy or just the wedge resection.  I had a lobectomy and noticed no real effect on my breathing once I'd healed from the surgery (4 weeks or so).  I coughed a lot right after--which is good, because it clears your lungs--but as long as you do the breathing exercises, my bet is that you will bounce back quickly.  I'm assuming your surgery will be VATS (laparoscopic)?
  15. Thanks
    Curt reacted to Tom Galli in Wedge Lobectomy Scheduled Feb 26   
    Curt,
    I also longed for certainty with my uncertain disease.  I am also plagued by engineer’s disease and we hate uncertainty. I’ve been in this spin cycle for nearly 15 years.  I still dread scans; then hate waiting for results.  My only comfort results from prayer.  
    Planning for the worst is a good approach for two reasons: you’ll be ready for worst case and you’ll be delighted if results are better than worst case.  Make a recovery checklist and prepare.  
    Stay the course.
    Tom
  16. Like
    Curt got a reaction from LexieCat in Pneumonectomy   
    Hi Dlh.  I don’t have any experience with a pneumonectomy but as you’ve found from the other who have replied you are in the right place for advice.  I may be able to help with the notifications.   I had the same issues when I signed up.  If you are on a mobile device, on the top right of the screen there should be three dashes (programmers call it a hamburger).  If you hit that, then the 🔔 symbol you will see your notifications window.  At the top right of that there are notification settings.  You can adjust your settings there.  You do have to be logged in to see that.  
    Good luck with your operation and recovery.  My thoughts prayers are with you.  
  17. Like
    Curt got a reaction from LexieCat in So frightened   
    That’s good news.  That’s the same thing they told me after my PET.  It’s almost a year of following it for me.   I scheduled the wedge lobectomy today after I got a second opinion and got the same advice.  I’d rather just know at this point.  Hopefully you get a six month reprieve from constant worrying.  I was able to mostly forget about it and not worry until the next scan was scheduled. I didn’t start worrying again until the follow up scan was scheduled.    
    Please make sure to put it on your calendar to schedule the follow up if you haven’t already.  Don’t leave it in the doctors hands.  Six months goes by quick.  It’s also great your not smoking or vaping.  Good for you.  That’s a huge accomplishment.  That will provide a lot of health benefits over the obvious ones.
  18. Like
    Curt got a reaction from Tom Galli in So frightened   
    That’s good news.  That’s the same thing they told me after my PET.  It’s almost a year of following it for me.   I scheduled the wedge lobectomy today after I got a second opinion and got the same advice.  I’d rather just know at this point.  Hopefully you get a six month reprieve from constant worrying.  I was able to mostly forget about it and not worry until the next scan was scheduled. I didn’t start worrying again until the follow up scan was scheduled.    
    Please make sure to put it on your calendar to schedule the follow up if you haven’t already.  Don’t leave it in the doctors hands.  Six months goes by quick.  It’s also great your not smoking or vaping.  Good for you.  That’s a huge accomplishment.  That will provide a lot of health benefits over the obvious ones.
  19. Like
    Curt reacted to Rower Michelle in My First Fundraiser!   
    Hi Everybody, 
    One of the New Year’s Goals I made was to do some fundraising for lung cancer research.  I have a ALK Positive peer mentor that raised $2000 last year using the Lungevity DIY tool kit. 
    So I spent a hour messing around (mostly looking for a decent picture of me) & now I’m up & running. Lungevity made it really easy to do.  I set up an e-mail campaign asking my friends & family to consider making a donation.   
    I’m not the creative type so I just named the campaign Crew For Michelle  (aka I hope to Row again!)   Wish me luck on this endeavor!  
    Michelle
  20. Like
    Curt got a reaction from Barb1260 in World Cancer Research Funds Report....no bacon or booze!   
    I’m not giving up wine either.  I’ve been eating turkey bacon for a while now, but I tell myself it’s real bacon so I’m telling myself I’m not giving it up either.  Everything in moderation....except smoking and vaping.  Give that up right away.   
     
     
  21. Like
    Curt got a reaction from Roz in Introducing myself   
    Hi Lucy.  I hope your follow up went well today and provided some answers for you.  
  22. Like
    Curt got a reaction from LexieCat in World Cancer Research Funds Report....no bacon or booze!   
    I’m not giving up wine either.  I’ve been eating turkey bacon for a while now, but I tell myself it’s real bacon so I’m telling myself I’m not giving it up either.  Everything in moderation....except smoking and vaping.  Give that up right away.   
     
     
  23. Like
    Curt reacted to Lisa L in So frightened   
    Ok so I just got home from the pet scan, Michelle the prayer posse must have been working because I was such a basket case I was claustrophobic and cried during the whole thing...the tech knew how upset I was so when I was leaving she handed me the disk winked at me and said I shouldn’t be telling you this but there were no hot spots not the nodule not even a little then she said they will probably do a watch and see..well that is all fantastic news absolutely and I have been on cloud nine but I also know that the nodule might not light up so I have a referral to one of the best pulmonologist in Oklahoma to see where we go from here ..I do not want to do the wait and watch.. because it is spiculated I want it out ..period..because of people like Bridgette and Lexi I know finding it and taking care of it early is a must ...but I will celebrate tonight that nothing (lit up)..you guys have been such amazing support for me..and I know you will be with me thru every step ..🙏
  24. Like
    Curt got a reaction from Tom Galli in World Cancer Research Funds Report....no bacon or booze!   
    I’m not giving up wine either.  I’ve been eating turkey bacon for a while now, but I tell myself it’s real bacon so I’m telling myself I’m not giving it up either.  Everything in moderation....except smoking and vaping.  Give that up right away.   
     
     
  25. Like
    Curt reacted to TD1 in Hi I am new- Met exon 14 success story   
    Hi! I was told to repost as newcomer. I hope it is here. Last year in June 2017 they found a 16 cm mass (yes, cms!) in my right lung. Met exon 14 adenocarcinoma. I am a never smoker! It spread to lymph nodes and showed signs of pleural effusion so stage IV, now stage IIIa. With crizotinib my tumor shrunk to 6cms. They did a pneumonectomy and the reports show complete response. Of course, I realize that I am incredibly lucky and thank the great surgeons, oncologists and research team at UCSF. They are the best!! Are there any long term survivors with MET exon amplification out there? I hope everyone on this site to have good outcomes, hope and on a path that leads to healthy living with our cancers! 
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