Susan Cornett

Hi, Sherry.  Sorry for the circumstances that brought you but glad you found us.  Most of us are diagnosed with lung cancer at its later stages; symptoms mimic other conditions (i.e., asthma, pulled muscles) and we just don't have good proactive screening.  That said, it sounds like your team has a plan to get started with a bronchoscopy and biopsy to confirm that's what it is.  I had a mass in my upper left lung that was biopsied through a bronchoscopy but results came back negative.  I'm still not sure how that happened.  But....it's been 17 months since my stage IV diagnosis and I'm going strong.  You will find so many long term survivors on this forum.  We all understand the concerns, fear, angst, and everything that goes with it.  As  you move through this process, please keep us updated and let us know how we can help you navigate.  

Julie,
Don't know if you know about chemocare.com but it's hosted by the Cleveland Clinic.  I've found it to be very useful.  Here's a link to their page on rashes: http://www.chemocare.com/chemotherapy/side-effects/skin-reactions.aspx
Glad that the onc RN says not to worry.  I'm currently dealing with a rash on my scalp following chemo and a shaved head.  What a mess....

I do believe that Taxol was formulated by the devil's pharmacist!  I had six "light" rounds of Taxol and Carboplatin during radiation in April and May, and I've had two additional full-strength doses of chemo since mid-June.  I'm not giving up, but after these last two rounds of chemo, I certainly understand why people suspend or quit treatment.  
Super Doc warned me that it would be bad, but he said it wouldn't be as bad as last year's cisplatin/alimta combo.   I love Super Doc but he lies!  Taxol brought some of the usual side effects (fatigue, neuropathy, tinnitus) but it also brought total hair loss, insomnia, GI issues, steroid bloat, weight gain (!!) and a couple of others.  It has just about wiped me out mentally and physically, and that's tough for me to admit.  I know that there are others who have fared so much worse and I try to always keep that in mind.  That said, I'm finished with chemo and will scan again in a couple of weeks.  Ready for another reprieve from treatment and resuming life 90 days at a time between scans.
 

Apparently the reason the pathology report still is not available is that the pathologists are trying to "reconstruct" the wedge resection the surgeon took immediately prior to the lobectomy.  Surgeon says he understands why they need to do it, but that HE knows what he did and it doesn't affect the outcome of the surgery.  So although the complete pathology report is not yet complete, I do know now that it was adenocarcinoma, that it was "deep," that it had grown significantly since the PET scan, and that the lymph nodes were all clear.  And, of course, based on the PET scan, no evidence of any metastasis.
I have an appointment on 8/1 and in the meantime the surgeon will be meeting with their "tumor board" and also bringing in an oncologist to recommend surveillance protocol going forward.  He says chemo at this point could MAYBE add 2% to overall survival odds, so he didn't recommend any.  He thinks my chances are excellent, and my lung function is great.  So it looks like, barring something unforeseen, this really WILL be "one and done"!
I feel truly like I just dodged a bullet.  I had ZERO symptoms and if it weren't for the screening program, god only knows how bad this would have gotten before it was discovered.  
I'm feeling pretty darned good today.  My cousin had come out here on Wed. to help me out and take me to my appointment, but I felt so good after Friday's appointment (chest tube removed, crepitus virtually gone) that we ran around and did errands--including a mani-pedi for each of us!  I have a bit of achiness (like I pulled an upper back muscle), and up until this morning (so far) a slightly annoying cough.  
It's weird, though, I'm still sort of sorting through various emotions--I'm so grateful not to have to battle this with all kinds of therapy but at the same time there's almost an element of survivor's guilt--there are so many brave souls on this forum and everywhere who have to go through what I was spared.  I know how fortunate I am, and I'm so grateful for the inspiration and support everyone here has provided.  It all helped going in to know that others have gone through it and come out on the other side.  And, of course, none of us knows what the future holds.  So I will be happy for however long my good health lasts and do my best to keep it going!
Teri

Seconding everything Tom said! So very sorry your dad had this complication but grateful that his surgeon was so sharp and observative.

With your family history of heart disease you know that your dad can enjoy many more years of productive life with great quality following that bypass. As awful as this is, it's a mixed blessing. Lung cancer rarely manifests symptoms until it has invaded other organs. This diagnosis comes at a time that it can be cured.



Sent from my iPhone using Tapatalk

Welcome to our little corner of the world.  i was diagnosed with stage 4 adenocarcinoma 17 months ago today.  I've had surgery, two rounds of chemo and a round of radiation.  You found a good place with M.D. Anderson.  I'm originally from the Houston area and I grew up knowing it was one of the best in the world.  If your medical team hasn't mentioned it, ask if your cancer will be tested for biomarkers.  For certain markers, immunotherapy is a very good therapy.  I did not have any markers but have responded pretty well to traditional chemo and radiation.
Given the variety of cancers and stages represented on this forum, you're almost guaranteed to find someone at the same diagnosis, stage, and treatment path.  
Let us know how we can help you.

Being the caregiver is a tough role. Not to make it about me, but here is my situation: I'm an only child, married, no kids so my husband is my caregiver.  My parents live about 4 hours away, and my mom wants to be here for every chemo and appointment.  Her biggest obstacle is that she is my dad's caregiver so being here all the time just isn't feasible. On infusion days, I'm joined by my friends.  My husband joins me at appointments.  When my husband and I go for scan results, he steps out to text Mom as soon as the oncologist provides the results.  She checks with him to see how I'm doing, and he sometimes runs interference for other well-meaning friends and family.   All that to say we've found what works for us.  It can be a delicate balance for all involved and there are no easy answers.
You do have to take care of yourself first, or you won't be able to take care of your wife.    

Good morning.  Go ahead and be mad and frustrated and speechless; get it out and then get ready to fight.  My first bit of advice? Don't look too closely at the statistics.  They do not consider your wife's overall health.  They are an aggregate of patients diagnosed 5 years ago, before we had all of the additional treatment options that we have now.  They don't reflect the individuals who opted out of treatment during the process, or never took the treatment.  Besides, if any of us gave any credence to the statistics, we'd all be in our respective corners crying.  You'll find many long term survivors on this forum.  Some of them should have died, statistically speaking, 10+ years ago.
Given the location of your wife's tumors, do her docs have a plan for treatment? My oncologist tells me that they are having great success with radiation for the brain.  Any chemo or surgery on the horizon?
Let us know how we can help you.  We're here.

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.  

Good morning, Terri.  I'm so sorry that your family has to deal with this.  Cancer stinks.  The toll it takes on both patients and family is horrible. Have any of your mom's physicians discussed palliative (not hospice) care?  If not, ask what is available.  The care provided can give your mom some relief from her symptoms while her docs try meds.
 
 We're here for you.  Please let us know if you have any questions or if we can assist you in any way.

I'm generally an anxious person anyway so I'd be super-crazy waiting for next steps.  In fact, when I had my biopsy in 2015, it took almost 2 weeks to get the results (that were wrong anyway) and I was a basket case.  But once the decision was made to remove the mystery mass, the thoracic surgeon got things going quickly, with surgery scheduled less than 2 weeks after my first appointment.  I was discharged from the hospital on February 27th and started treatment by March 19th.  
Obviously this has to be your decision, but if the NP can get the ball rolling, it might give you some peace.

FINALLY got cut loose for the SECOND time this afternoon.  Almost all of the crepitus is gone, though a touch of "crunchiness" is still detectable at the bottom of my neck and in collarbone area.  They sent me home with a chest tube (one of the skinny ones) in place, along with a pneumostat that will collect the fluid and allow me to drain it off as it accumulates.  It also allows for the tube to be pinched off (as a "trial" of removal), to ensure that swelling has stopped even if no further draining.  
This second go-round was WAY more unpleasant than the original surgery--instead of the nice, new wing of the hospital, I was in the old one, where I shared a room with an elderly lady who was very nice but had the TV on ALL the time.  I had to have two chest x-rays today before the doc was satisfied it was safe to send me home.  I think we were totally on the same page that the third time might be the charm, but was something to be avoided if humanly possible.  In any event, as bad as the swelling eventually got the first night back in the hospital, I'm VERY glad I didn't postpone going back in.  
So my review of my surgical experience is mixed--I'm WAY certain that even with the complication it was less onerous than the "open" thoracic surgery.  If it weren't for the crepitus, which apparently isn't all that common--at least not to that degree, it would have been virtually a piece of cake.  I'm breathing quite easily now, and trying to stick with Tylenol for pain, since the oxy wound up making me sick to my stomach.  
Doc promised he'd call with the path results as soon as he gets them this week.  He's hoping for tomorrow.  Fingers still crossed!
ETA: As further evidence that the standard of care was *ahem* a bit less on this go-round, I was walking out of the hospital when the security guard gave me a funny look and asked, "Are you SPOSED to have that thing on your hand?"  They had forgotten to remove my IV port!  By that time I'd been stuck with so many things I didn't even notice their failure to remove it!

Just picked up the recent issue of TIME on Mindfulness.  Awhile back I watched a 60 minutes segment on it and thought it was a bit whacky.  As I have a tendency to expect the worst and can go to some very dark places, I bought a copy hoping it would help me find ways to stay out of those dark places. I have been struggling with handling the stress of my recent diagnosis, Stage 1A and the fact that lung cancer has changed my life forever.  I really liked what I have read so far.  I would highly recommend this magazine to anyone struggling with stress overload. I found the ideas simple and practical.  
By the way, as new member, I so very much appreciate each of you and your willingness to share.  It has helped me tremendously.  Thank you.

Michelle,
A spouse's lung cancer diagnosis always leaves one feeling hopeless.  The only comfort I can offer is that on this forum, we all understand what you are feeling.  We are all lung cancer survivors or take care of those afflicted. 
I'll confine my remarks to cancer.  I can't begin to offer financial advice; I don't even take my own!  I am assuming the immunotherapy drug Keytruda did not have an effect. Your husband's cancer likely displays the biomarker EGFR because his suggested treatment of Tarceva is an EGFR inhibitor.  Tarceva can work.  Have you contacted Genentech and requested financial assistance in paying for the drug?  Here is the website for financial assistance application.
What should you be doing?  Don't do what I did by wasting valuable life fretting about when I was going to die.  If your husband isn't feeling that bad, do something enjoyable.  Here is an essay I wrote a while back that points to the importance of living.
Welcome here.  Look around at our profiles, and you'll see many of us were in dire straits.  Yet some, not all, found a way out.  I'm hoping you and your husband are among those that find the way out.
Stay the course.
Tom

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. 

Hi there!  I'm pretty new, myself--just had lung surgery a couple of days ago and confirmed tumor was cancerous, but won't have details on type/stage till pathology reports come back next week.  So I'm not much of one to give helpful advice or even share info at this point, but there are some awesome folks on this list who have been dealing with this stuff pretty successfully for a LONG time.  
Just wanted to greet you and say glad to have you here.
Teri

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.

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

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.

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.

Has he had a CT or a pet scan?  Those tests are generally more accurate than xrays for detection of cancer cells.  Are you dealing with his oncologist, PCP, or other doc on the side pain?  Surely one of them can address this with you.  Just keep asking until you get answers.  We have to be our own biggest advocates and sometimes that means asking the same question again and again.  
 

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.  

I spent the weekend before my surgery taking cooking classes so as not to think about it.  I am sending good vibes!

You can DO this.  You're still dealing with the shock of a recent diagnosis.  As things become clearer (and apparently with this stuff it never becomes TOTALLY clear), you will adapt to a "new normal."  I was the support person/caregiver to partners with liver disease and with testicular cancer.  I did a lot of research and reading so I knew what would help them and what questions to ask the doctors.  I also connected with communities like this one to talk with other people dealing with the same stuff.  All of that made me feel like I had a modicum of control--not over the disease, but over what I WAS able to control.  In talking with other caregivers and survivors I learned what is and isn't helpful (both for you and for the person you're caring for), remembering that everyone is also a little bit different in what they need/want.  
Some of my own tips, based on my own experience:
Get organized--make up file folders (physical, and/or on your computer) to hold copies of lab/test results, reports, etc.  Take good notes at meetings with doctors, and if you can't remember something, call back.  Make sure your wife has the appropriate consents and advance directives on file (you can find something for your state online), to ensure you have access to all her medical info and to ensure the doctors are free to talk with you.  You might also want to have her execute a Power of Attorney that would allow you to manage any of her affairs if she is unable to keep up with it for a while.  (I'm a lawyer, myself, and there are forms online, but hiring a lawyer is the best way to make sure everything is done right). Keep a current list of contact info for all medical professionals helping your wife, a list of all prescribed medications, and a running narrative of what happens at each appointment or test.  You'd be surprised how handy it can come in to have that info available at all times.  I keep my folders with all my important medical info in a DropBox folder--that way I can access it from my phone if I don't have my physical folder with me.  Read up on treatment protocols, options, considerations that may be applicable to her diagnosis.  You can help plan/prepare good, nutritious meals that will promote her health and overall well-being.  You can find out what side effects her treatment might have and prepare to help minimize some of it or make her more comfortable.
I know what you mean about its feeling surreal that the rest of the world goes on.  Actually, though, that's how it should be.  The world doesn't stop for us and our problems or our grief.  Be patient with yourself, and as much as you can try to be patient with others (my own patience has been stretched a bit thin the last few days).  
All of this will help you be the most effective caregiver/advocate that you can to help Dawn during her fight.  And yes to what Tom said--you can lead the cavalry!

I spent the weekend before my surgery taking cooking classes so as not to think about it.  I am sending good vibes!