LexieCat

I don't have experience with chemo (either as a caregiver or for myself), but I just had a lobectomy on July 10th.  The minimally-invasive techniques are FANTASTIC--I have three tiny incisions.  I probably would already be back at work but I had a minor complication of an air leak that caused my face/neck/chest to swell up and I had to go back in with a chest tube for a few days. THAT was tougher than the original surgery.  I would have been fine just having my neighbors look in on me if it weren't for the re-admission, but by the time I got out the second time, I was VERY happy to have my cousin offer to come out and take care of me for a few days.  She just drove me on errands/appointments till I was cleared to drive (which was as soon as the chest tube was removed), and helped with some housework and kept me company.  I was going a little stir-crazy by then.  
If your mom is putting on the game face, roll with that.  The one thing that stresses me out is seeing the furrowed-brow, worried faces.  I'm grateful my family and friends have followed my lead.  It IS scary, for sure, but it sounds like your mom copes with things the way I do.  So to the extent you can support that positive attitude, you will be helping her.  

I don't have experience with chemo (either as a caregiver or for myself), but I just had a lobectomy on July 10th.  The minimally-invasive techniques are FANTASTIC--I have three tiny incisions.  I probably would already be back at work but I had a minor complication of an air leak that caused my face/neck/chest to swell up and I had to go back in with a chest tube for a few days. THAT was tougher than the original surgery.  I would have been fine just having my neighbors look in on me if it weren't for the re-admission, but by the time I got out the second time, I was VERY happy to have my cousin offer to come out and take care of me for a few days.  She just drove me on errands/appointments till I was cleared to drive (which was as soon as the chest tube was removed), and helped with some housework and kept me company.  I was going a little stir-crazy by then.  
If your mom is putting on the game face, roll with that.  The one thing that stresses me out is seeing the furrowed-brow, worried faces.  I'm grateful my family and friends have followed my lead.  It IS scary, for sure, but it sounds like your mom copes with things the way I do.  So to the extent you can support that positive attitude, you will be helping her.  

Although there are probably not any "positives" to the disease itself, there are wonderful positives that come from your diagnosis
I realized that everyday IS a gift from God...treat it as such
I realized that my family is what keeps me moving forward everyday....love them
I realized that my friends love and support me always...be grateful for them
I realized that there are many people worse off than myself...do what I can to help them
I realized that I can not take one minute of one day for granted or my family members or my friends, ever
I realized I can make a difference in the life of someone that is suffering...be that difference
I realized that God came into this world with me and He will be the one that goes out of this world with me, I will put Him first in my life for the rest of my life.

At stage 3, depending on the location and Tumor properties, they will treat the patient with curative intent.

Please know that it's alright to be frightened for your mom. Own your feelings, that makes them easier to deal with. Your mom is your mom and I bet she's able to read the fear in you. It's okay to let her know that you are afraid but that you will take strength from knowing that she is dealing with this so well.

Contact the oncology social worker at her hospital. Inquire about support groups for family and friends. My experience in family support groups and now in patient support groups is that there is more laughter than tears and you learn how to help her enjoy good quality of life.

Learn the signs of dehydration (confusion, stumbling, dizziness blurred vision, skin that stays tented when gently pinched. Pulmonary embolisms and pleural effusion may or may not cause sharp pain accompanied by shortness of breath and faster heartbeat. The pain may be referred-it doesn't have to be on the same side as the lung cancer. Watch for unusual swelling in her legs that might indicate blood clots that can break loose and cause heart attack, stroke or pulmonary embolism. If you see any of those symptoms call her dr immediately.

Get her up for short walks or swim. Exercise is important. Calories are more important than balanced diet during treatment. Make smoothies or milk shakes with ensure or boost to get the nutrition she needs.

Hope this helps.


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It was the best thing i did to join this group of positive and supportive people and it helped me so much and i have had surgery and chemo and scans showed no sign of cancer so i feel very lucky and positive ..

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Thank you. I do hope it's simply the result of the edema. My Pulmonologist says a lung cancer patient shouldn't complain about gaining weight. Lol.

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So glad you're done with that, Susan!  Really sounds like no picnic.  Wishing you a quick recovery.

So glad you're done with that, Susan!  Really sounds like no picnic.  Wishing you a quick recovery.

Hi, Sherry,
I actually DID just have a lobectomy as a result of cancer found during screening.  There are screening protocols, and depending on your husband's age and smoking history he might be eligible.  Screening requires that you be over 55, have at least 30 "pack years" (i.e., one pack a day for 30 years or two packs a day for 15 years etc.), and that you either currently smoke or have quit less than 15 years ago.
I know how scary it is, but there are lots of folks here who have survived for many years--medical advances are happening every day, too.  Try your best to take it a day at a time.  One of the challenges for me was to learn enough to be properly educated without reading ALL of the worst-case scenarios that may be highly unlikely and serve only to freak you out.  

LexieCat,
Somehow I missed seeing your post until today. I'm sorry I wasn't there for you. How did the surgery go?
Lydia

Thanks, Tom,
I'll definitely be asking those questions.  I have access to a subscription to "UpToDate" which provides reports and compilations of research for the medical profession, and one recent report I read said that adjuvant chemo for stage 1a was actually found to result in a decreased survival rate.  And as I read the report, it sounds like the evidence regarding 1b is equivocal.  
I should be able to learn a lot more at my appointment on 8/1 next week, and hopefully I can have a meeting with the oncologist to discuss these issues.  I'm hoping to find out then whether there is more detail available regarding genetic markers, etc.  

Teri,
I've read that post surgical chemo is given after curative surgery to reduce the recurrence possibility.  I suppose recurrence is connected to survival but I'd consider asking a medical oncologist about post surgical chemo purpose and efficacy.  I had four recurrences after NED treatments, and a National Cancer Institute Study on lung cancer recurrence surprised me.  It is linked in this blog.
I really want you to keep dodging that bullet.
Stay the course.
Tom

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

I'm do happy for your good news. And no need to feel guilty. I'm sure no one on here wants to hear of bad results. Good results encourage us all. Be happy and enjoy! I've really enjoyed following your posts.
Judy M

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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

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

Maliko,
Well, these are some reasons I believe ecigarettes are dangerous to a lung cancer patient -- here and here.  The research on possible harm of ecigarettes is admittedly incomplete but as a lung cancer survivor, I'd be reluctant to introduce any potential irritant into my lung during and after treatment.  I fought hard to achieve my NED (no evidence of disease) and go to great lengths to avoid all irritants to stay that way.
Stay the course.
Tom   

Well, don't go heaping guilt on yourself.  Neither one of you could have prevented your wife's cancer.  
I'm very new to this myself (surgery next week), so I can't give you any helpful cancer-related information or advice.  I CAN tell you, though, that if you want to be there for your wife, it's critical for you to take good care of yourself, too.  Make sure you stay on top of your work with your therapist and do whatever is recommended to maintain your own stability.  There are so many advances in cancer treatment she could be around for a long time to come.  
Sending support and hugs.

Actually, there are some great caregiver resources here: https://www.lungevity.org/for-patients-caregivers/caregiver-resource-center

OK, false alarm.  At least I don't have to change the title of the thread.  Surgery IS scheduled for the 10th.  After I got no call back from hospital staff for whom I'd left messages, I called my surgeon's cell (which he had given me and urged me to call "any time").  He said when we first met he had them put it down for the 13th because there was a long procedure he had scheduled for that day, but that that had been rescheduled, so it WAS the 10th, as he had told me.
Whew--I am now reassured that I don’t have a brain tumor that’s making me hallucinate.  I was questioning HOW I could have imagined the wrong date!  

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!

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!

Chixter,
These activities may indeed have caused the small nodules.  If the next scan shows no growth, then you can assume these nodules resulted from your past smoking or work related activities.  If not, then you'll be very interested in learning about lung cancer treatment and this is the place to do so.
I hope you abide by your wife's suggestion about wearing breathing protection while navigating craw spaces or doing hobby activities.
Stay the course.
Tom

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.

Well, surgery turned out to be more or less a breeze--very little pain.  But last night I told nurses my glands felt swollen--nurse advised doctor, and I'm told it is "crepitus"--air bubbles that work their way up as a result of air leak.  Surgeon saw me this morning and told me it should resolve on its own but if it gets worse to come back and they might need another chest tube or something.  I'm still a bit fuzzy from pain meds, so not a hundred percent sure on what he said they would do.  Apparently it can cause problems if it travels too far up or becomes too difficult for swallowing/talking.
Anyone else have that experience?
I have followup with surgeon on Tuesday, and he says we should have pathology results by then, for formal diagnosis/staging.  
Overall, though, feeling pretty good.  I'm glad to have the cancer out--now have fingers crossed for good pathology report.  Hoping for 1a!