Newly diagnosed - NSCLC - questions about surgical options

[ChiMama]

Hi all

I was diagnosed with colon cancer 4 years ago, had successful surgery, Stage 1 (T1N0M0) no further treatment needed, but have had regular followup bloodwork & scans since.

The first scans I had in 2016 showed a 8/9 mm ground glass nodule upper left, and another 8/9 mm spiculated nodule also upper left. My pulmonologist had them on watch & monitor. The GGN has been measured at 1 cm/9mm back and forth, sometimes they don't even mention the other one, there's been little consistency in how the scans have been read and reported.

My scan in late April showed the GGN at 1.1 cm so I went for biopsy, which came back NSCLC adenocarcinoma, positive for TTF-1 and napsin, so a lung primary, not colon met.

So today I met with the surgeon my pulmonologist recommended... but I am trying to figure out the best procedure and if what he plans makes sense. He plans on a thoracotomy to take the entire upper lobe... he says he does a lot of VATS but not for cancer. He says a larger entry is better to get the cancer and sweep the lymph nodes.

Meanwhile I have a call in to my oncologist for a second opinion surgical referral which I made before these questions came up.

I learned of VATS (and this forum) on the Colon Talk board, where many people have had VATS successfully for colorectal lung mets. Is there a difference between mets and primaries when it comes to surgery? Do other doctors do thoracotomy, not VATS for cancer, or is that just his personal style? I'm really confused and don't know how to get answers.

My head is kinda spinning with this new diagnosis, digging for information, and now what do I do? I'm in the Phoenix area so have access to good medical systems, as long as they take my insurance!

Thank you for any stories, links, and ideas!

[Tom Galli]

ChiMama,

VATS versus conventional thoracic surgery is a tough call. Theoretically, scan diagnostics should be able to identify questionable lymph nodes ahead of surgery. But nothing replaces the doctor's actual visualization so your surgeon may be making a good point. Many however have VATS lung surgery and have suspicious lymph nodes removed in addition to lung tissue. This kind of question is really best answered by getting a second and perhaps a third thoracic surgeon opinion. Your pulmonologist ought to have a view about lymph nodes and resection so I'd ask his opinion on VATS--no VATS.

I'm not sure there is a difference in approach or surgical method for removing a primary tumor and a metastatic tumor.

Stay the course.

Tom

[Mamma Om]

Hello ChiMama, I had surgery in 2018 for a primary lung nodule in the right lower lobe. Previously I had surgery for left breast cancer in 2001, right breast cancer in 2012, thyroid cancer in 2015. My surgeon, a cardiopulmonary specialist, opted for removal of the entire right lower lobe. He explained that taking the whole lobe ensured he got every cancer cell within the lobe, and he also said that removing the whole lobe protects against losing or spreading any stray cancer cells. The surgery required 5 days in hospital, a chest tube, and daily x-rays to check that my lung did not collapse. The really interesting development was that the pathologist found another cancerous nodule within the lobe that had not been seen on CT scan or PET scan. It was first diagnosed as SCLC, where the first nodule was adenocarcinoma. The diagnosis was changed shortly after my case was sent to the Tumor Board of our large Cancer Center. The new diagnosis was a rare  neuroendocrine carcinoid, not usually seen in lungs. Neither nodule required more treatment after removal. Now I am being watched for another ground glass nodule in my right middle lobe (they now refer to it as my lower lobe), and in fact I just had a CT scan today. If my oncologist is still suspicious of it after the report, she will want to do a biopsy. You should get as many surgical opinions as you need to feel comfortable. I only had the one consult but I felt confident with the surgeon and it turned out OK. 

[BridgetO]

Hello ChiMama and welcome here!  I agree wholeheartedly with Tom. G's suggestion that you get a second opinion  before you have a thoracotomy.  I think that most of the people on this site who have needed a lobectomy for an early state lung cancer have had it by VATes rather than thoracotomy, although there are some exceptions. I had my lobectomy (entire lower right lobe and a bunch of lymph nodes) by VATs in November off 2016. The surgery was relatively easy as far as surgeries go, and given that any surgery requiring general anesthetic is serious. I was up and walking in the hospital hall the same day and discharged from the hospital the next day, with a chest tube in place. I do think my discharge was faster than most people's and also that most people aren't discharged until the chest tube can come out. I had a persistent air leak, so my tube was in about 10 days. I was able to manage it just fine at home with the help of my spouse to change the dressings.

It's my understanding that thoracotomy is more painful and has a longer recovery time, so I wouldn't want to have one unless I was convinced that there was some really good reason to have one. And there may be a really good reason why you need thoracotomy, but I think that your surgeon just doesn't do them for cancer is unusual. 

Maybe others will chime in here with their opinions.

Best wishes and let us know what questions you may have and how we can support you. That's what we're here for.

Bridget O

[ChiMama]

Thank you all for your replies!

I got in to see my oncologist today - he's awesome and I trust his input.  He gave me referrals to 2 surgeons, only one of which takes my insurance.  But his specialty is lungs and his credentials look good so I'm waiting for that appointment.

I think the first surgeon's specialty is heart surgery and he "minors" in lungs... his office had lots of heart pictures, diagrams & models, but no lungs that I could see.  I'd be OK with the answer being "you're not a candidate for VATS" but I really questioned because he said he doesn't do it for cancer and I know VATS is used for cancer all the time.

Brain MRI came back clean so that's good.  My onc also wants me to do a PET, hopefully next week.

Thanks again! 🖖

[Bruce u]

Hi

I had my upper left lobe removed by VATS in 2007 and still all clear. They did check some lymph nodes as well. I was released and took a 1 1/2 hour flight home 2 days later. A previous poster mentioned stray cells which was a big concern for me. At that time they did not recommend Adjuvant Chemo for Stage 1 but after alot of discussion they agreed and I had 4 rounds. Maybe something you could also discuss with your surgeon/oncologist.

[ChiMama]

Thank you Bruce. Glad you're doing well!  I've been taking cimetidine since the week before the biopsy for the stray cells.  I'll talk about adjuvant with my oncologist.

[LouT]

ChiMama,

How is your progress going on the decision of surgery and treatment?  In my case I had VATS and once your decided I may be able to provide some of my experience with the process.  

Lou

[ChiMama]

On 6/17/2020 at 6:53 PM, LouT said:

ChiMama,

How is your progress going on the decision of surgery and treatment?  In my case I had VATS and once your decided I may be able to provide some of my experience with the process.  

Lou

Thank you Lou!  I've decided not to go with the first surgeon as I feel his specialty is hearts and I want someone who does lungs all day every day.  I have an appointment next week with a lung specialist.

PET scan last Friday shows "left apical nodule measuring 1.1cm by .0.7mm with a max SUV of 2.3 consistent with the provided history of biopsy confirmed neoplasm" and no other activity, which is good!

Meanwhile I'm up and down on the emotional roller coaster, between "i can do this" "stay positive" and "WTH not another cancer."  The upsetting situations in the world right now, plus I'm concerned about the risks of COVID and the hospital, particularly since my area is now considered a "hotspot" ... when I'm out & about maybe 20-30% of people are wearing masks & taking precautions.  Most cities here have just instituted mandatory mask policies but a large number of people here will not comply.  I'm feeling very vulnerable at the moment.

So grateful for my dog who keeps me grounded and loves on me when I go into a dark place. 💜

Thank you again for your kind reply!

[LouT]

ChiMama,

You can do this and you will.  Our stories are similar.  I was diagnosed with colon cancer in March of 2010 and, like you, underwent surgery the following month.  I didn't require follow on chemo or other treatment.  Of course, also like you, there were plenty of checkups that now occur every two years (I'm due this year but Covid means it will happen next year).  In January of 2019 I had a CT Scan for a kidney stone and my doctor wound up referring me to a Pulmonologist because of a nodule located in my lower right lobe.  After an inconclusive PET Scan and an unsuccessful CT-Guided Biopsy I had surgery where they removed a wedge, determined it was malignant and took the lower right lobe out.  This happened May 2nd 2019...so far I've been NED (No Evidence of Disease) and didn't require additional treatment.  So...you can see why I find our situations similar.  

I believe you're smart to get the best lung surgeon you can to do the work.  Mine was highly regarded by other doctors I know and his specialty was lung surgery so I was comfortable with him.  I can also tell you that, except for an unfortunate situation where I was refusing my pain meds, my recovery from the lung surgery was easier than from the colon resection.  I'll admit that I had more fear with the lung surgery, but overall the recovery was quicker and less painful than the surgery I endured in 2010.  So, perhaps that will help you calibrate yourself as you approach your surgery.

Like you I was up and down (and sometimes sideways).  But, in my case I had a tendency to "catastrophize" what was happening to me.  I had already counted myself down and out with a finish soon to come.  Then I came to this forum.  People shared similar stories to mine, they made it and did so pretty well...they had good outcomes.  Some folks here have battled Stage IV cancer and been victorious despite numerous treatments, surgeries and recurrences.  I'm amazed at the people I have met here and the comfort that they brought to me.  One fellow (Curt, who's posted on your chain) had a VATS lobectomy shortly before me and his description of the surgery, hospital stay and recovery gave me real hope to get through.  You'll get through as well.  Feel free to ask questions here about any fear you have; any fear or doubt.  Somebody here will have had some experience in the subject you want more information on and frankly I can't tell you how comforting it is to know that I have a family here who shares my story and knows and supports me.  You're now part of that family.

So...try not to "go to the end" of this thing.  Take each day as a good one.  Know that this will likely be easier than what you went through 4 years ago and feel comfortable that we have your back here.  Don't bother looking up stats on Google...they're already out of date and survival rates are getting better all the time.  You nodule is like mine; small.  That means it's likely they caught you early and a surgical intervention could be a cure (much like we had with the colon cancer).  Stay positive, take notes when you meet your doctors and come here with any questions.  You've got this!

Lou

[Roz]

ChiMamma,

I've had both surgeries and I'm happy to answer any questions.

I think you are smart to get a second opinion!!

Best,

Ro

[ChiMama]

Thanks Lou & Ro.  (Cute doggies Ro!)

I'm Still processing and doing as much as I can to stay busy so I don't think too much.  Waiting until Wednesday for the surgeon appointment seems to be taking SO long!

I did well with the colon surgery even though it was open surgery plus hysterectomy with 3 surgeons involved.  Somehow this has me more concerned than that did!

Also I still have some big discomfort from the biopsy & chest tube from 5 weeks ago... After the biopsy there was a small pneumothorax at the top of the lung so I had an overnight stay while they drained it.  So I'm concerned that surgery will be even more eventful on the body.  If the biopsy/chest tube takes 5+ weeks to heal and stop hurting, how long does the surgery recovery take?  I fly for work and although it's shut down at the moment, no way could I fly like this.

Meanwhile I'm making sure to eat as well as I can and take my supplements.  And walk, although now that it's 111 outside the afternoon walks are out!

Thanks again for your support!

[LouT]

I'm glad to hear that you're taking care of yourself.  At the same time, I'm sorry to hear about the complication from your biopsy.  I can tell you that after my surgery I was in the hospital 3 days with a chest tube that was removed on the third day and I then went home on the morning of the fourth.  I can only tell you that what happened to you seems very unusual from all I've learned from personal experience and the experience of others here.  It really seems out of the ordinary.  Once I got home I was still taking some pain pills, but on my second day home I started walking around my house and by the second week I was doing a couple of miles a day (broken into smaller distances) inside the house.  Later I could start to use my treadmill and within about a month and a half I was close to my normal five miles a day and got back to that within 2.5 months.  Please don't let the problem from the biopsy scare you off.  Again, I will repeat that I found the lung surgery an easier recovery than the colon surgery, but perhaps your mileage will vary.  But let's just focus on getting the garbage out of your body so you can heal, recover your strength and get back to your life.  We're pulling for you.

[Roz]

Hi ChiMama,

My dogs thank you for your kind compliment!

Based on what my surgeon told me, everyone heals and recovers differently. That being said, it's really hard to know in advance how your body will respond. I had the VATS surgery (removal of lower left lobe) in Sept 2017, and then at the end of October 2017, I had the open thoracotomy (removal of upper right lobe). The recovery from VATS was fast and relatively painless. The recovery from the thoracotomy was harder. Even now, I still have daily issues/discomfort that are a result of the surgery. In my case, to get out the mass (9.5+cm big), she had to pull apart the ribs and then once out I believe 2 ribs were basically tied together.. She told me that some people have very little residual pain/discomfort a year down the road, and then there's a full spectrum of discomfort due to the nerves that are involved from cutting through the fascia..etc..She said there's nothing to be done for it at this point. My advice is to focus on what is best for you at this time. If the doc believes he/she can surgically remove the cancer through surgery, then listen to what is said about treatment after that. In my case, I had chemo and was NED for 7ish months. Then, the cancer returned on both sides gradually growing once again via multiple nodules on both sides...I'm currently waiting for a treatment/trial and continue to hope for something soon.

 

Best of luck, and know that we are all here to help and to answer any questions or just to listen!!

Take care,

Ro

 

[ChiMama]

I saw the surgeon today.  He was very complete in his explanation of options.

He says he will do either VATS or robotic, depending on which equipment is available first.  Complicating matters is the rise in COVID cases here, after just recently opening up to elective surgeries, so hospitals are very full.  Next week they will close to elective surgeries again!

He said that SBRT is an option (and he explained it in detail with pros & cons) but that surgery would be the preferred treatment since there are 2 other nodules in that lobe (one a 9mm cavitated spiculated and the other a 4mm), it would get the lymph nodes for examination, surgery would get all of it out, and with my level of general health and lung function being good I would be very functional even with left upper lobe removed.

Hoping the scheduler calls tomorrow with a plan.  Meanwhile I'm trying to get my energy up.

Thanks again! 💜

[LouT]

ChiMama

i had the robotic VATS but I’m sure either VATS is fine.  I can also understand why he would prefer the surgery and ability to gather and examine the lymph nodes.  It seems like a good way to go. 
 

i live in North Carolina and I’m hearing about Covid cases rising here as well but, in our case, some data is confusing though.  For example, they said that the ICU in one of our larger hospitals in Charlotte is almost full (94 of 100 beds), but then when listening to a local news channel I heard that 82 of those beds taken were for non-Covid cases.   I don’t think I’ve ever seen some thing that’s been so confusing with the data reported as this disease from the beginning until now. I think you’ll have to trust your doctor and nursing staff to keep you safe if they elect to go ahead with the surgery. Ask any and all questions about how they’ll protect you so you can feel comfortable about everything.

 Keep up the good work of taking care of yourself pre-surgery.  You’ll not regret doing that. It’s good to know that things are progressing for you.  
 

Lou

[ChiMama]

Update: Surgery scheduled for July 14.  Unless the COVID thing gets even worse and they have to reschedule.  Electives were on hold last week but they called yesterday to get me on the calendar.

I am a bit concerned about the safety of being in the hospital during this "surge" and there's supposedly a coding system for who they save or not if things get bad and they run out of space or resources.  I don't know how much of that would be relevant to my surgery/hospitalization but with this being "a hotspot" and all the talk on the news, I'm nervous!  Trying to stay busy and not dwell but it's challenging!  One minute I'm fine and the next I'm shaking.

Meanwhile it's 6 weeks since the biopsy/chest tube and I still have pain in my back.  It's not "I have to take something for it" pain, but enough discomfort that it affects my sleep and some movements during the day.  I don't know if this is normal, but everything I've read says recovery is a couple weeks, not 6 plus, and I'm not sure if I should call someone and if so who.

Also if someone could direct me to some good resources on how to prepare for the surgery, that would be most welcome.

Thank you all!

[LouT]

ChiMama,

I'm glad to hear that you have your surgery scheduled.  One of the worst things about this disease is the waiting we need to do for tests, results, doctor appointments and treatment.  At least when we are doing something we can feel that we're moving forward in our fight against this disease.  I can share with you how I prepared for my surgery and hopefully that will provide some help.  Others will likely be able to add to it and give you even a clearer picture of what you'll need.  It is likely that the day of surgery they will have you sit up, stand and even move to a chair to sit for a bit.  I first thought the was more than I could handle, but it wasn't as terrible as I pictured and it is important to get you moving and getting your lungs to breathe more deeply.  During your hospital you'll be "walking the ward" and that is a good way to begin rebuilding your strength and keeping your lungs clear.  In between you'll likely be tired and get needed rest. You'll likely be in the hospital a few days with a chest tube to prevent a lung collapse.  They'll monitor any air leakage as well as fluid accumulation and when you are cleared for discharge you'll be allowed to go home. In these days of Covid I would trust that they are going to keep you pretty well isolated from any infected people.  Still I would tell you that anyone coming into your room should either use a hand sanitizer or wash their hands.  Most hospital rooms have the hand sanitizer outside the patient's door, but you should still see them rubbing their hands when they come in.  You'll likely see that even the people that bring a meal to you will have a mask on.  That is for your protection.

To prepare for going home, I would recommend the following:

1.  Try to eat healthy, get sleep and also do some physical activity.  I could just be walking, but the better you have your body working before surgery the more quickly it can recover post-surgery.  

2.  Make sure you have someone to count on for your first few days home.  You'll be tired and likely in some discomfort and having someone there can be a real help.  Of course you want to be up and around very soon after surgery but having a bit of help can be valuable.  If you are alone and on medicare you can ask your doctor for a home nurse to visit and check on your progress in healing.  My wife suffered dementia so I needed to do the home health nurse and it was a very good service.

3.  Get yourself a wedge pillow.  It will allow you to sleep in a more comfortable position that will take pressure off your back and improve your ability to breathe more comfortably.  Of course you could pile pillows up behind you, but I took the advice of my friends here and got the wedge and I was glad I did.  It surely made sleeping a lot easier.  You may also want to keep a small pillow available to press against the surgery side of your body when you cough.  It can help reduce any pain from the coughing you'll do to clear your lungs in the beginning.

4.  Arrange your nightstand with things you may need so you have them nearby when you need them.   Although you'll need to be up and around often to get your body working again you will also find that you will get very tired and keeping things you need close to you will be helpful.

5.  You should be given a Spirometer (if not, ask for one).  Keep that by your bed and use it often, as it will help to keep your lungs clear and rebuild lung capacity.  I used my close to every 10 minutes for the first few days and then less often for weeks afterward.  This will be an important part of your recovery so please don't overlook it.

6.  Make sure to fill your pain prescriptions and take them as recommended.  Once your home you'll need to be active and it is harder to do to if you are in pain.  I was once guilty of not taking my meds after surgery and paid a price for it.  The meds are not a "forever thing", but rather just needed to keep you comfortable enough to recover well.

7.  Have the numbers of your doctors readily available and be ready to call them if you have any questions or experience any symptoms that concern you.  

8.  Have a plan to exercise, it could be walking; at first around your house (you'll be surprised how much ground you can cover) and later outside (sunshine and fresh air is great for you).  

9.  When you're feeling up to it; stop in here and let us know how you're doing and ask any questions you need answers to.  We're here for you.

Recovery differs for everyone, but in my case it was about 6 weeks before I was almost back to my regular workout routine.  I hope this helps.  Let me know if you have other questions.

Lou

[ChiMama]

Thanks for this Lou!

When I had the colon surgery, I learned how important post-surgery walking is! I did laps around the hospital floor and kept track of my time/laps/distance on the whiteboard in my room.

It's too hot & polluted to walk outside in the afternoons here so I'll be doing a path around the house.

I'm doing the housework, yard work, and other "heavy lifting" projects as best I can now so my environment will be more welcoming and less stressful than having undone things nearby when I come home from the hospital.

I bought a wedge pillow last month when they were on sale at Costco!

I'm being more vigilant about taking my supplements.  I am starting some lung strengthening exercises, and will alternate with a spirometer.  Any suggestions on the best ones would be awesome!

The surgery will be Robotic.  Even with an expert team, I admit that I am scared.  More than when I had the colon surgery.  Maybe partly because of the current situation with COVID etc.  I try not to focus on that, but sometimes it hits me, like yesterday I had to go to the store and people were too close and I started to get really really anxious.  I can talk myself out of it but that gets exhausting too.  Then I calm down until something else hits me and I cry or whatever.  (Although my dog won't let me cry too much!  She's the best!)

Thanks again 💜

 

[LouT]

Everything you're feeling is so normal ChiMama so be at peace that you are going to make this and it will be easier than the colon surgery.  As far as lung capacity exercise I would do fast walking for a good 5 minutes until I was breathless then do slower walking for about 10 minutes and then back to the fast walking.  It really helped me along with the spirometer, which I used 3-4 times an hour and I'd set my goals to get that darned thing right to the top...but you set a goal that will challenge you and help you improve your capacity.

It sounds like you're doing a lot of good things for yourself so please continue with them.  You'll be happy later that you did.

Lou

[Lisa Haines]

Chi,

   After reading all your updates I am happy to hear that you opted to have a Pulmonary Surgeon take your case and one that is experienced in VATS and Robotic surgery.  Personally, I was never fortunate to have surgery as one of my options, but I do wish you the very best and that you'll soon be on the road to recovery! 

  I know we are ALL very concerned about Covid and worry about being in a hospital at this time.  This is a concern for everyone in the Cancer community, especally the Lung Cancer folks.   I do know that hospitals are doing everything they can to keep ALL  patients safe and they have strict protocols to follow.    I have a family member who recently had knee surgery which had been postponed in March (when they stopped doing all "elective surgery" here in MA.   We were one of the States with he highest COVID cases (per capita) back in March and April and for months they stopped doing any elective surgeries here, but you also have to remember there will always be urgent and emergency cases and hospitals are doing all they can to keep up ALL safe.   My SIL just had her surgery on June 29th and ended up being in for two nights.   She does NOT have LC, but does have other health issues, but she's a higher risk person.   

She was VERY pleased with all the extra care and precautions she saw while being in the hospital, both before, during and after her surgery.   They ALL all worked extra hard under strict guidelines too keep everyone safe.    Here locally, no one is allowed to have any visitors and everyone must be tested for Covid and MRSA before they are hospitalized.  Covid patients are kept on floors (far from surgical patients) and the nursing staff does not go back and forth between surgical care and Covid Care.  Each unit has their entire sets of nurses and supportive staff.    We've also been told it's important for people to continue to use the ER and seek care, when needed. People are still having other health concerns that require treatment and the hospitals want everyone to be equally safe.   

I'm sure you'll be given guidelines to follow as you get closer to surgery and they will continue to monitor cases and make the best decision for you, as needed.  I wish you the very best and hope your surgery goes well and they are able to remove all the cancer.

Take care and be well....

[Curt]

Hi @ChiMama.  I had none robotic VATs in February 2019.  The surgery was not as bad as I imagined it would be and I've made a full recovery with no follow up treatment.  My lung capacity returned to pre-surgery levels.  I have some residual discomfort, similar to what you describe from your biopsy, but it is manageable and still decreasing.  You've gotten great advice from Lou and some others.  You will do great.    

[ChiMama]

Had surgery on Tuesday. They say all went well. Chest tubes came out yesterday afternoon, probably go home today.

i am so weepy. I hate this hospital, half the nurses are good and half are horrible. It takes at least a half hour to and hour & a half for them to get here when I call for help. I keep having to remind them to sanitize and wear gloves, one nurse consistently didn’t even wear a mask most of the time. I feel so unsafe. yesterday I had a lot of congestion and couldn’t get it out, Felt like I was choking drowning and they acted like I was being a drama queen, prescribed zanax which I’ve declined. Anyone could hear the goop in there.

TheN the physician assistant came to take out chest tubes and told me SHE was the one who did the lobe removal. So I don’t even know if my doctor was there at all!  I can’t stop crying, I can’t cough, can’t get spirometer above 1000. I wish I had never done this.

its especially hard since no one can be here with me to listen observe and advocate. My head hurts my chest hurts, I want to go home. Sorry to be a downer but I’m so lost right now

[Tom Galli]

ChiMama,

OK it sounds like your hospital experience sucks. We ARE your advocates. Lets deal with the congestion first. You need to get up, out of bed, to get things opened up. Are you lapping the ward? Ensure your bed is elevated to make it easier to cough and do keep working the spirometer. Elevating, walking and using the spirometer will get productive coughing started and clear things up.

You've just had a major surgery. You are not a drama queen; you've been hit by medical trauma! I've been there and I know what it feels like. But, I've also gone through the recovery process. Let's get the gunk out, then try and walk the ward as much as you can. It is so important to be out of bed, even if it is to go to a chair and sit up.

Stay the course.

Tom

[Scruboak]

Chi Mama, you’ll be home soon and you will be more grounded. I had a lower left lobectomy via VATS a couple of months ago - most of my care providers were awesome but there was that ONE nurse who had little compassion or validation. We are such at their mercy while hospitalized.  Give yourself some healing time.