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New to lung cancer/ survivor


Sharon L.

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Hello I’m 59 just had non small cell robotic assisted lung cancer surgery and am wondering what to expect for recovery, surgery was 2/13/18 released from hospital to go home on 2/21/18. 

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Hi, Sharon, and welcome.

I'm just a shade older than you, and had VATS surgery for a lobectomy last summer--the procedure and recovery are similar.  I had a small complication that turned up before I was discharged, and I wound up having to go back in for a few days.  Nothing serious, just uncomfortable.  Once I was discharged the second time, my recovery was pretty fast.  I was able to drive by the end of the week.  I had a bad cough for the first couple weeks (do your breathing exercises--they make you cough, but help your recovery!).  In fact, I had sore abs from the coughing.  By the following week, I was able to go out and meet friends for a concert.  And the week after THAT I went to a punk rock concert and ventured into the pit!  (I don't recommend that, lol, after getting heavily moshed, I moved off to the side after 15 minutes or so). :)  

I think you'll be surprised at how quickly you recover.  Eat well, use a wedge pillow to support you while sleeping, at least for the first couple of weeks.  You'll be more comfortable.  

I think it was only a little over a month, maybe 6 weeks or so, before I was feeling almost completely normal.  I still have a bit of numbness around the incisions, and I sometimes feel a twinge when I take a sharp intake of breath (like right before sneezing).  But no shortness of breath or anything I'd classify as "pain."

Hopefully your recovery will be speedy and uneventful.  Do you have your pathology/staging results yet?

Teri

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Oh, and I just saw on the other thread where you posted that your cancer was caught during a screening--mine was, too!  I was a longtime smoker and had mostly quit before I started the scans, and once they observed nodules (diagnosis wasn't until a year later when one of the nodules had grown and changed appearance), I ditched the one cigarette a day I was still smoking.  I still use e-cigarettes (down to almost zero nicotine) and my doctors consider me a "non-smoker."  

I'm SO grateful for the screening, which was recommended by my primary doctor.  Without that, who knows how this might have turned out?

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Hi Sharon and welcome here,  I don't have much to add to what LexieCat wrote. I had a VATS lobectomy in November 2016 and my recovery was easier than I had expected, I also recommend the wedge pillow and getting out and about as soon as you can.Exercise such as walking will help your recovery and your mood. Once my chest tube was out (I was released the day after surgery with the drain still in) my pain started going away quickly. I no longer have any pain and no shortness of breath.

This site is a good place to find infomation, support and hope. Let us know if you have specific questions and how we can support you.

Bridget O

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2 hours ago, LexieCat said:

Hi, Sharon, and welcome.

I'm just a shade older than you, and had VATS surgery for a lobectomy last summer--the procedure and recovery are similar.  I had a small complication that turned up before I was discharged, and I wound up having to go back in for a few days.  Nothing serious, just uncomfortable.  Once I was discharged the second time, my recovery was pretty fast.  I was able to drive by the end of the week.  I had a bad cough for the first couple weeks (do your breathing exercises--they make you cough, but help your recovery!).  In fact, I had sore abs from the coughing.  By the following week, I was able to go out and meet friends for a concert.  And the week after THAT I went to a punk rock concert and ventured into the pit!  (I don't recommend that, lol, after getting heavily moshed, I moved off to the side after 15 minutes or so). :)  

I think you'll be surprised at how quickly you recover.  Eat well, use a wedge pillow to support you while sleeping, at least for the first couple of weeks.  You'll be more comfortable.  

I think it was only a little over a month, maybe 6 weeks or so, before I was feeling almost completely normal.  I still have a bit of numbness around the incisions, and I sometimes feel a twinge when I take a sharp intake of breath (like right before sneezing).  But no shortness of breath or anything I'd classify as "pain."

Hopefully your recovery will be speedy and uneventful.  Do you have your pathology/staging results yet?

Teri

Bridget O & LexiCat,

My pathology report said:

1.2cm; unifocal; adenocarcinoma; grade 2; moderately differential. 

Before my surgery based on the ct & pet scan my surgeon said I shouldn’t need any further treatment if they got all the cancer out plus the 9 lymph nodes they took out were clear and there was no cancer cells in the outer edge of the tumor they removed so I’m assuming that will remain the same. I have a follow up appt. on Tuesday with an oncologist I guess I will have to have one for future follow ups and then the following Monday I have a follow up with my surgeon.  This is all so new to me as the most I’ve had in my 59 yrs. is high cholesterol. I had to have my chest tube in for 7 days since I had a chyle leak which the surgeon said he see’s this complication once a year. My stomach is so sore I still feel like the chest tube is still in and my stomach is very swollen I feel like I’m 3-4 months pregnant!  I’m guessing this is normal?  I do feel like the pain is less and am only taking 1 pain pill every 4 hrs instead of 2.  I do feel at times my breathing is shaky and I feel like I have to cough or if I’m talking sometimes it makes me want to cough or my voice gets shaky then I cough. 

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I'm not sure what "grade 2" means (looks like it has to do with how the cells appear--like whether they are well- or poorly-differentiated).  Have they given you a stage yet?  I'm guessing you would be 1a or 1b.  I wound up BARELY being classed as 1b--my pathologist believed there was invasion of the pleura.  My surgeon felt the pathologist was looking at it incorrectly (based on what he observed when he was performing the diagnostic wedge resection before the lobe was removed), but the pathologist won the day.  

I think some fluid retention is normal after any surgery.  I gained weight right after, and it wasn't due to eating.  That went away pretty quickly.  I had something called "crepitus" (AKA "subcutaneous emphysema"), which has nothing to do with what we usually refer to as emphysema.  This was a small air leak that caused my chest, neck, and face to swell up like a balloon.  I had to be re-admitted to have another chest tube put in so I could deflate.  It added 3-4 days of hospitalization but it isn't dangerous and it's somewhat common with lung surgery. I'd suggest letting your doctor know about any symptoms that you aren't sure are normal.  I'm not familiar with chyle leak.

My pain dissipated pretty fast.  I took the narcotics for only a day or two, then switched to ibuprofen.  The narcotics make me sick to my stomach.  The breathing/coughing sounds normal.  Did they give you an spirometer (tube you suck to make a little ball go up) or an acapella (device that you blow hard into, makes you cough)?  Those exercises are important for getting your breathing back to normal.

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LexiCat, 

Before the surgery he said stage 1 because of the size but I didn’t see on the pathology report where that was stated I’m sure I will find out next week and it should be the same since it was only 1.2.  I have been using the spirometer since my surgery faithfully to insure a quick recovery. Also been doing the arm exercises they gave me. I was wrong and don’t see surgeon until March 8th so I may call them tomorrow if my feet & ankles are still swelling. Thank you for taking time to give me your feedback I really appreciate it. 

Sharon L. 

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HI again!

I think talking to your surgeon soon is a really good idea. I don't think the swollen stomach, legs and ankles is normal. i had a chest tube for 10 days for an air leak. I'm not familiar with a chyle leak. I looked it up and read that chyle is a kind of lymph formed in the digestive system that can leak into the pleural cavity after surgery. From your description it sounds like you may be getting an accumulation of fluid and I think you need to check this out ASAP. 

I'm pretty familiar with the lymph system but not the chyle part. I had a major pelvic surgery for cancer that included removing 27 lymph nodes, followed by radiation . As a result  I have lymphedema in my legs, will be a lifelong issue. It causes swelling and if not controlled can cause infection and a lot of othster havoc. Fortunately mine was diagnosed promptly and  so it's under good control with compression hose and some behavioral changes. I also developed a lymphocele, a benign lymph filled cyst, thatc at times became inflamed and caused pain and mobility limitations. So I know that alymph system can create a lot of problems and the sooner diagnosed and treated, the better.

I always ask for copies of reports (pathology, CTs, PET Scans, blood work, whatever. Then I take them home and try to decipher them, with partial success, usually.I'm kind of an information junkie, I guess. Don't be afraid to ask for reports if you want them.

Bridget O

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I totally agree with Bridget.  Jot down questions as they occur to you so you can remember them when you talk to your doctor.  Get all the reports and ask questions about anything you don't understand.  In addition to reading your own reports, I suggest doing some reading online to find out as much as you can--the reading will probably suggest some questions you will want to have answered or things you'd like to have explained.  I found it was a way to keep busy while I was recovering, and the more I am able to learn, the more in control of my situation I feel.

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1 hour ago, BridgetO said:

HI again!

I think talking to your surgeon soon is a really good idea. I don't think the swollen stomach, legs and ankles is normal. i had a chest tube for 10 days for an air leak. I'm not familiar with a chyle leak. I looked it up and read that chyle is a kind of lymph formed in the digestive system that can leak into the pleural cavity after surgery. From your description it sounds like you may be getting an accumulation of fluid and I think you need to check this out ASAP. 

I'm pretty familiar with the lymph system but not the chyle part. I had a major pelvic surgery for cancer that included removing 27 lymph nodes, followed by radiation . As a result  I have lymphedema in my legs, will be a lifelong issue. It causes swelling and if not controlled can cause infection and a lot of othster havoc. Fortunately mine was diagnosed promptly and  so it's under good control with compression hose and some behavioral changes. I also developed a lymphocele, a benign lymph filled cyst, thatc at times became inflamed and caused pain and mobility limitations. So I know that alymph system can create a lot of problems and the sooner diagnosed and treated, the better.

I always ask for copies of reports (pathology, CTs, PET Scans, blood work, whatever. Then I take them home and try to decipher them, with partial success, usually.I'm kind of an information junkie, I guess. Don't be afraid to ask for reports if you want them.

Bridget O

Thank you Bridget O I will be calling my doctor in the morning. 

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  • 2 weeks later...
On 2/25/2018 at 8:09 PM, LexieCat said:

I totally agree with Bridget.  Jot down questions as they occur to you so you can remember them when you talk to your doctor.  Get all the reports and ask questions about anything you don't understand.  In addition to reading your own reports, I suggest doing some reading online to find out as much as you can--the reading will probably suggest some questions you will want to have answered or things you'd like to have explained.  I found it was a way to keep busy while I was recovering, and the more I am able to learn, the more in control of my situation I feel.

Hello again. I saw my surgeon and my cancer was a 1A.  I’ve been trying to walk 2-3 miles a day my stomach still feels pretty sore most of my scabs have come off from the surgery and I’m planning on going back to work on 3/26 hopefully by then my soreness will be mostly gone.  My skin on the right side of my stomach where I had surgery hurts to touch it at times but it is feeling better. How long before it doesn’t hurt at all?

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I think everyone's a bit different.  I'd say virtually all of the soreness was gone within 2-3 months, but the last of it was so mild I barely noticed it.  I did a lot of walking right after my surgery, too, and it definitely helped.  So did yoga.  I've gotten away from both, these winter months, and really need to get active again.  Just basic laziness. :)

 

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  • 4 weeks later...

 

On 3/12/2018 at 1:26 PM, Sharon L. said:

Lol 😂 I am ready to get this show on the road and feel like normal again!  

On 3/12/2018 at 1:26 PM, Sharon L. said:

Lol 😂 I am ready to get this show on the road and feel like normal again!  

 

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