Mally

Just joined this morning.  I was diagnosed as stage 1A on May 16th.  In my  head, I have died several times and left my husband a widower and my daughter an orphan.  Any ideas on how to control these thoughts.  They are so disheartening and suck the joy out of living.

Marian,
Bridget's offered a fine approach to dealing with lung cancer doom and gloom symptoms.  I've had my share and they are indeed overwhelming.
You haven't communicated any of your treatment details nor your type of lung cancer but state IA is an early find and very often successfully treated curatively.  I'll highlight one of Bridget's thoughts -- the idea of discovering "space for joy."  If you've chosen treatment, then you've chosen life. Doing so means you should have an objective for the life treatment often yields.  My objective, like Bridget's, is finding joy.  I don't expect big joyous events, little things like a cloud-painted sky suffice.  I've learned to search out the little joyous things, recognize them, and revel in them.  Oddly, my lung cancer revealed this way to live.
You are most welcome here.  Tell us about your treatment if you feel up to it and of course, if you have questions, this is the place to ask.
Stay the course.
Tom

Hi Marian, I also was diagnosed with 1A, last November. I had a VATS lobectomy and I'm doing well, pretty much back to normal.  I have had two other unrelated cancers, one of them stage 3, so I've had plenty of experience with "those thoughts".  I'm sure that all of us who've had cancer have had them. I think it's important to  know that they are normal. Here are some things I do to deal with them.  First, I don't think of it as "controlling" thoughts, which sounds like a struggle, and I'm not into struggling. So when one pops  up I acknowledge it as normal and let it go as in "Oh there you are, bye!" Sometimes I sing to myself "Let it go, Let it go, Let it go!" to the tune of "Let it snow" (if you're old enough to remember that!) . Then I do something else, like read something really engrossing, go for a walk, or, in a pinch, do a chore, continuing to let it go.  Also, espeially when letting it go, I do my gratitudes. I say to myself things big and little I'm grateful for. I say, for example: I'm grateful for my spouse, I'm grateful for my health insurance, I'm grateful for that beautiful tree, I'm grateful for my shoes, I'm grateful for the sunshine today.  I can just look around whereever I am and find things I'm grateful for.  I do this for a specific length of time, say 5 minutes or maybe the time it takes me to walk a couple of blocks. This keeps my mind busy with some positive thoughts and keeps those other thoughts from having free rent in my head. 
 These things have become habits for me and they work at least some of the time.  I have a lot of space for joy in my life. No matter how long my life turns out to be, I want it to be good..
Hang in there,
Bridget

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  

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.

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.

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.

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

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. 

I know what you mean--I've been pumping myself up and staying busy and positive and all that the past couple of weeks.  My surgery is Monday, and yesterday I started feeling what I've come to identify as anxiety.  Shallow, constricted breathing, mainly.  It's not true shortness of breath, because when I am really concentrating on something else, I breathe normally.  I've been trying to do some of the yoga breathing I've learned, but I'm out of practice.  Uncertainty with something like this is hard to deal with.  I always feel like if I KNOW what's going on, I can deal with it.  I gotta hand it to folks like Tom and others here who have been dealing with various levels of uncertainty for years and years.  Sounds like you never REALLY get used to it, though people do find ways to cope with it.  
One thing that helped me this past week or so was taking care of a bunch of stuff I'd been putting off, just knowing that I'd feel better coming home from the hospital, whether with good news or less-good news, if I got it done.  And it really has kept me distracted, and given me fewer things to worry about.  Clearing the decks, so to speak.  If you've got some stuff you've been meaning to get done, now's not a bad time to tackle them.

LexieCat
I hope so for both of us


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YAY!  Well, let's hope Monday brings good news for us both!

Ok new update they called and made my appointment for Monday now


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Hello everybody! Well I'm coming up to my first ct  scan after surgery.it will be 6 months.I'm sure I'm OK surgery cured me  but still nervous about it.lately I've been having a little back pain between the blades which of course the worry wart I am the first thing I start to think is oh no I hope its not coming back but i m hoping its just from working due to being a styllists/ barber but that's what I thought last time and it wound up being nscl .I hear Tom saying stay the course and that I will .I just found out that my husband has a shadow on his right upper lung he goes for ct Thursday.I'm praying it is just a scar or something.I also just found out my brother has stage 4 lung 3 areas one is in his back rib in the bone which broke his rib.he is in terrible pain.he does not know what kind of cancer yet waiting for biopsy. They will start radiation for pain.so I have a lot of praying to do.thank you for listening. 

Michele,
Wow, break a chop stick to stop the bad news of cancer raining on your family. 
Let's start with you. From my recollection of your diagnosis and surgery, you have every reason to believe you are NED - no evidence of disease. Likely the little back pain results from scanziety and I know of no cure for that problem. 
How was your husband's shadow discovered? X-ray?  Has he had a bad chest cold? I am really hoping these are the cause. One lung cancer survivor in the family is more than enough. 
Now you are dealing with your brother's diagnosis. The old adage is bad luck comes from three bad events. But I'm betting you'll have a NED scan, so break that chop stick and stop the mayhem at two!
And, yes, by all means, stay the course. 
Tom

Hi Michele,
My situation is similar to yours Adenocarcinoma, 1A, VATS surgery in November. I had my 6 months CT scan a couple of weeks ago, so I understand scanxiety. Mine was NED. There's every reason to believe yours will be, too, as Tom said. Hang in there and enjoy every day.
Bridget 

Well, the good news is - today (July 5) was my last day of chemo I did 7  of them. I still have 6 more radiation treatments, I'll have 35 when I'm done with them. My throat feels like rough sand paper inside, even though have meds that are supposed to deaden the pain of swallowing food, it still hurts to swallow anything and the taste of food isn't there either. I drink the enlive, ensure and boost, ugh, but I can only get 1 bottle a day down.
I've lost a total of 47 lbs. I gain back 5 and then lose 3, and then I gain back 3 and lose 4, and it just keeps going like that. My clothes don't fit at all and when I look in the mirror, this strange skinny old man stares back at me. I've lost a lot of muscle mass and that is going to be tough to get back I'm sure.
My hair was falling out in patches, really looked bad. I have lost more than half my hair, so the wife cut it real short. It just falls out all the time, standing at the counter in the kitchen, it's like sprinkling hair everywhere.
Radiation treatment is now in the boost stage, I guess that's when they narrow the beam and it's more intensive on the cancer. I just hope it's working. I don't have any energy but the wife keeps me going and the support of my friends has been a great help. Well, so goes it and it just seems to be repeating the same thing.
Take care everyone,
DragonKing (Dave)

Good morning, Dave.  Thanks for the update!  I finished 30 radiation treatments at the end of May.  While I didn't have many side effects, the fatigue did me in.  I continued to work (at home) through treatment and spent my "lunch hour" napping.  Once you've finished all of your treatments, you'll start to bounce back - your appetite will come back, the throat will begin to heal.  Then you can be the handsome, fit guy staring back from the mirror.  I'm currently going through the hair loss.  Every time I take a breath, more falls out.  I may take matters into my own hands this weekend and just take it all off.  Besides, it's hot in Fort Worth!
Sounds like you have a fantastic support system.  I believe that is the key to success when defeating cancer.  Hang in there and please continue to update us.  

Dave,
Ice cream was the answer to my raw throat after radiation.  Chocolate mint ice cream. Sometimes, I'd let it melt a little before eating.  Made my throat feel good and put the pounds on....
Stay the course. 
Tom

Julie,
Welcome here.
The time just seems to craw while waiting for scan results doesn't it?  I had four recurrences after treatment that produced no evidence of disease or NED and consequently many scans and a lot of emotionally charged waiting.  It unnerved me so much, I wrote a book about it - "Scanziety".  Why is it spelled with a "z"?  The title describes a formula for calculating the amount of anxiety associated for waiting for scan results -- typical of an engineer!  Regardless, we all know what your are feeling and thinking waiting for your results revealed Tuesday consultation.
Lung cancer is persistent.  For most of us here, treatment was not "one and done." You didn't mention the type of lung cancer you were diagnosed with.  Was it small cell or non small cell? Adenocarcinoma or Squamous cell?  I ask because there are dramatic new advances for treating both types of non small cell lung cancer with targeted therapy for the former and immunotherapy for the latter.  You can read about them here and here. 
I do hope that the scan reveals a nodule of no concern.  In case it doesn't we are here to support you as you engage in treatment.
Stay the course.
Tom 

Hi, Julie. That time to exhale after initial diagnosis and treatment is a good feeling, but we all eventually hold our breath waiting for the other shoe to drop. I was diagnosed in February 2016 and am currently fighting a recurrence. I was just shy of my one year mark when it was found. As Tom said, a lot of us have or had recurrences. It stinks but, if yours is a recurrence, it can usually be treated. I read a tweet from a fellow lung cancer patient that said he hoped to just keep getting patched together (dealing with recurrence and metastasis) until better treatment options are available. 
Here's hoping your tests reveal a boring, benign spot.

Thanks, Big Heart! I feel the prayers. 
And thanks, Vivian, for the good advice. It does seem like the more he drinks the higher his creatinine, and now the infusions of fluid are not doing very much to bring it down. We're being treated at a comprehensive cancer center, and our oncologist is very good about referring us to other docs. Will ask about endocrinologist and/or nephrologist.  I'm concerned that too much fluid will deplete his system of vitamins and minerals he needs. And thanks for the prayers.
Carol 
 

Carol,
Hi! I am also stage IV adenocarcinoma. I was on Alimta for about six months between my standard first line chemo and the immunotherapy I am on now. My creatinine levels were always normal on Alimta, but started fluctuating about a year after starting Nivolumab. What are his numbers? I took a treatment break at 1.8 and took prednisone for a short time to see if that would get it back under control. It has lowered a little and stabilized around 1.4, but they won't give me IV contrast with my scans unless it is <1.3 (?) I have a referral from my PCP to a nephrologist, but need to reschedule the appointment because I have a conflict. Make sure he dos drink the proper amount of water, don't use ibuprofen, get plenty of sleep, stay active and try eating things like: cauliflower, berries, cucumber, cherries, dried apricots and incorporate chamomile tea, cinnamon, lemon juice, cranberry juice and limit salt intake, dairy and other foods high in potassium and calcium. Maybe if I was more diligent about those things, mine would be lower too. I'll let you know if I get in to see a specialist soon.
 
cindy

Carol,
Welcome here.  
For encouragement, if I can live, so can your husband.
My wife has a masters degree in nutrition and is an RN.  She says for diet: reduce meat consumption because creatinine results from breaking down proteins.  And a consultation with a Nephrologist is the right next step.
Stay the course.
Tom

Hi Sarah,
II was home with a chest tube too,after VATS.I also had an air leak. I had the tube about 10 days at home. I ended up in the ER on Thanksgiving day because the tube clogged and was leaking a lot of fluid into my dressing. It could have been dealt with in an office visit, but of course everything was closed for the holiday, so ithe ER it was. At that point the air leak was resolved enough to take out the tube. I was MUCH more comfortable with it out, no big surprise. So hang in there, it will get better soon. I'll be thinking of you and your tube. I recommend sleeping on a towel or chux pad in case of unexpected tube failure.
Bridget