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Weighing Choices


lily55

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I was diagnosed with NSCLC of my left lung in September of 2016. I started treatment with an oral medication which helped a lot and then in January of 2017 moved on to IV chemo and radiation for six weeks. Once that was complete I started coughing up significant amounts of blood and discovered the tumor in my lung had torn a hole in my bronchial artery. I was in and out of the hospital for about a month dealing with it and continued to cough up blood until early June 2017. Because of the coughing and the blood and the fact that the procedures they did to try to repair the hole didn't work they started talking about removing my left lung. Two PET scans later and there's still "activity" in my left lung and now there's additional activity in the lymph nodes in my left armpit. They can't tell for sure whether it's cancer or inflammation, apparently. My oncologist, surgeon, radiation oncologist, pulmonologist, and other specialists are discussing my case today to make a recommendation about whether I should have the lung removed or not. I am super anxious because it's a huge surgery, I'm only 30 years old, and there are obviously no guarantees whether it will improve my breathing/quality of life.

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Hi, Lily.  Sounds like you've really been through the ringer the last few months.   How are you feeling now, other than anxious for a decision?  There are several members here who live life with only one lung.  There may be some challenges adjusting, but it can be done.  I lost half of my left lung in 2016 and yes, it was a big surgery.  But given your age, you should bounce back faster than some of us old folks here.  That said, if they choose not to remove the lung, is there a treatment plan?  I would certainly want to address those lymph nodes sooner rather than later.  In my opinion, they just cause trouble.  My cancer had spread to my lymph nodes in my chest, and my recurrence that I'm currently treating is also in a lymph node.

I will also add that after I had the portion of my lung removed, my breathing improved and my asthma is almost non-existent.  Keep us posted on your progress.

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Thanks for the reply Susan. My name is actually CJ, lily is just my favorite flower :) If they decide not to take out my left lung then the only real treatment plan that has been proposed to me is the "wait and see" plan. Wait a few months and have another PET scan and if it shows changes then decide from there. To me that's a little concerning that they'd wait that long to do another PET scan, especially since the last one done, on 6/30, show the new activity in my lymph nodes in the left armpit. I know people can and do live well without one of their lungs, the thing that's making me anxious is that all of my doctors seem hesitant to tell me whether they think it will actually improve my breathing. Again, I know there are no guarantees, but give me an opinion! I mean, they're the medically trained people and I'm not, I'm going to them for a reason. In the meantime there are things in my life I'm trying to plan like annual vacations and my wedding in February so I'd like to know sooner rather than later and the whole "wait and see" game is getting old. Thanks for the personal story, it makes me feel better about possibly having the surgery.

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CJ,

From reading your post, your treatment and complications almost mirror mine.  I had pre-surgical radiation (conventional) and adjunct Taxol and Carboplatin chemo.  Then my left lung was removed.  But, I had complications with a fistula (leak) in the bronchus stump that required 2 more corrective surgeries and 3 stent insertions and removals.  While all this was going on, the cancer metastasized to my right lung and I had 12 more infusions of Taxol and Carboplatin, the last 6 hardened with adjunct Tarceva (administered before doctors realized Tarceva didn't work on Squamous cell).  My last curative treatment was CyberKnife and NED since.  I was diagnosed in February 2004.

My point in reciting my treatment history is if I can live, so can you.

Stay connected with us.  There is a lot of collective experience and expertise about lung cancer on this site and you'll find we are a good source of information.

Stay the course.

Tom  

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C.J,

I'm sorry to hear that you are having to deal with all of this, especially at such a young age.  My mom had her right, upper lung lobe removed in January 2016 (she is 63, obese, and has multiple other health issues).  I realize it is not an entire side of her lung like your proposed surgery, but I can tell you that could breath better post surgery.  We learned that the doctors really couldn't tell us whether or not she would be able to breathe better after surgery - we just had to wait and see -, which was frustrating for us just as I see it is frustrating for you.  In looking for people who have had lobectomies, I came along several young people in their 30's who had their left lung removed.  Most were active prior to the surgery and were able to resume most of their activities after surgery.  A question we ended up asking ourselves to decide on my mom's surgery was: is a longer life (we definitely new she had cancer) worth the possibility of continues breathing issues?  Our answer was YES. 

As far as the surgery went, yes it's a major surgery, but my mom did really well despite all of her other health issues.  She was in the hospital for 6 days (a few days longer than anticipated because they removed the drain tube too soon and fluid built up in her lungs) and she did fine at home afterward.  

I wish you the best in choosing what choice is right for you. Please know that everyone on these forums have been really helpful to me and their inspiration and kind words help during the times when I am questioning what is best for my mom or when I am just feeling blue about the whole situation. 

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CJ,

I imagine the unsuccessful attempts to repair the tear and whatever damage those procedures left behind is a major factor in the decision of how to proceed. It sounds like a "tumor board" or at least most of your entire treatment team met today. I hope their collective input about the cancer, radiation possibilities, lung function and surgical possibilities arrives at a recommendation that makes sense to you and answers all of your questions. You have the right to each of their expertise with the understanding that, as you know, they are no guarantees. But they're the experts and you're the patient, and you need to be able to make a well-informed decision. Will both lobes need removal or just the one affected by the damaged artery? Is it the same lobe that your cancer/tumor is in? Is a biopsy of the lymph node being considered, or is the size of it the reason they want to wait a few months and see if it's inflammation that subsides or a possible metastasis? I can't imagine what it must be like to be so young and anxious to plan your future, but have to wait for so many answers. It's encouraging that the meeting was today and not planned to wait until another look at the lymph nodes in a few months. Where are you being treated? You could get a second opinion, especially if they do recommend surgery. With the complications you already have, you want someone experienced enough for you and that surgeon to be confident in his or her ability. We know what a difficult time you're going through and we've all been there. Please keep us posted, but also don't hesitate to reach out if you're feeling the need for more support. Best wishes to you, CJ.

cindy

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