Anne-Louise lung resection

Hey Sweetie,

You are in a tough spot indeed.  It is true that pseudo-progression usually does occur earlier.  It sounds like a smaller surgery is possible….just a MAYBE than the lobectomy will be required???  Here's my story:

I had a complete lobectomy of the right upper lobe of my lung in 2010.  Here's the longer version:  My melanoma was in my bronchus….right main stem…pretty high up…with some question as to whether once they cut out that section and the upper lobe if they would have enough remaining bronchus to hook back up to my lower lobes.  So….I was looking at the possibility of the removal of the entire right lung…NOT something I wanted to happen.  However, with concurrent brain mets and no FDA available melanoma treatments at the time, I opted to try it.  Obviously, I came out with only the upper lobe removed via an incision in my right axilla with one other small incision for the scope.  I had been warned if things got complicated, I would have an incision running under and the length of my scapula on my right upper back.  (Funny story:  On the final visit with my thoracic surgeon, I asked how it had gone and how he had managed to leave me the rest of my lung and only use the smaller incision?  He replied, "It was a really good thing you are skinny!!!")

Healing:  I was warned that I may be in the intensive care unit and even on the vent for three days or so post op.  However, I think that was more the scenario they expected if I had had the removal of my entire right lung and the fact that I have asthma.  So….I did well.  Only had the smaller version of the surgery and was taken off the vent in recovery and sent to a room on the floor with a central IV line in my neck, the incision under my arm, a chest tube, urinary catheter and frankly…the most annoying part…inflating bags, much like a BP cuff, to both my calves in order to keep blood from stagnating.  I had one other tube….probably the BEST one…a "walking" epidural, in my back.  My pain meds were administered that way (kind of like the epidural mom's or often given with child birth, but positiioned so that you still feel everything and can walk….just not the thoracic pain….or at least a lot of it!!!) and you get good pain control with less of the drowsy effect.  I would definitely ask if that is a possibility for you!!  You can cough, function, and heal much faster if there is less pain!!!

Returning to normal:  I had surgery on April 30.  I was up walking in room (to bathroom only because of all the tubes) the next day.  Had all lines and tubes removed on May 3 and went home that day.  I made it to my daughter's highschool graduation on May 15 (had arranged for a wheelchair if I needed it…but made it on my own!!)  Walked 4 miles…SLOWLY….on  June 4…..after much shorter and even slower walks to begin with!  My PFT's (pulmonary function test) were back to my pre-surgery baseline by June 28, though I did still have a cough for a while (however, don't forget my persistent asthma!!).  On July 3, I left for a 6 plus hour car drive to a beach vacation with family…swam, walked, the whole ta dah.  I gradually made it back to my running and was back at work, 3, 12 hour shifts a week, in August.

So….if you choose this route, I definitely think you can do it.  No your lung or chest doesn't feel empty. It does hurt and then feel sore at first.  Your respiratory function returns to normal quicker than you would think.  Your remaining lobes fill the space.  In fact, some (admittedly dumb!!!) radiologists, have even read my lung scans as "normal" since surgery….not noticing that I'm missing a few bits and bobs!!!

If you want the play by play, with my weird sense of humor, and the more difficults posts for me to read by my daughter while I was in hospital…they are at the start of my blog…back when it all began in April of 2010.

Hang in there.  You are tough and amazing and can make it through whichever approach you choose!!  AND…..see those grandsons!!!!  love, c

Hey Sweetie,

You are in a tough spot indeed.  It is true that pseudo-progression usually does occur earlier.  It sounds like a smaller surgery is possible….just a MAYBE than the lobectomy will be required???  Here's my story:

I had a complete lobectomy of the right upper lobe of my lung in 2010.  Here's the longer version:  My melanoma was in my bronchus….right main stem…pretty high up…with some question as to whether once they cut out that section and the upper lobe if they would have enough remaining bronchus to hook back up to my lower lobes.  So….I was looking at the possibility of the removal of the entire right lung…NOT something I wanted to happen.  However, with concurrent brain mets and no FDA available melanoma treatments at the time, I opted to try it.  Obviously, I came out with only the upper lobe removed via an incision in my right axilla with one other small incision for the scope.  I had been warned if things got complicated, I would have an incision running under and the length of my scapula on my right upper back.  (Funny story:  On the final visit with my thoracic surgeon, I asked how it had gone and how he had managed to leave me the rest of my lung and only use the smaller incision?  He replied, "It was a really good thing you are skinny!!!")

Healing:  I was warned that I may be in the intensive care unit and even on the vent for three days or so post op.  However, I think that was more the scenario they expected if I had had the removal of my entire right lung and the fact that I have asthma.  So….I did well.  Only had the smaller version of the surgery and was taken off the vent in recovery and sent to a room on the floor with a central IV line in my neck, the incision under my arm, a chest tube, urinary catheter and frankly…the most annoying part…inflating bags, much like a BP cuff, to both my calves in order to keep blood from stagnating.  I had one other tube….probably the BEST one…a "walking" epidural, in my back.  My pain meds were administered that way (kind of like the epidural mom's or often given with child birth, but positiioned so that you still feel everything and can walk….just not the thoracic pain….or at least a lot of it!!!) and you get good pain control with less of the drowsy effect.  I would definitely ask if that is a possibility for you!!  You can cough, function, and heal much faster if there is less pain!!!

Returning to normal:  I had surgery on April 30.  I was up walking in room (to bathroom only because of all the tubes) the next day.  Had all lines and tubes removed on May 3 and went home that day.  I made it to my daughter's highschool graduation on May 15 (had arranged for a wheelchair if I needed it…but made it on my own!!)  Walked 4 miles…SLOWLY….on  June 4…..after much shorter and even slower walks to begin with!  My PFT's (pulmonary function test) were back to my pre-surgery baseline by June 28, though I did still have a cough for a while (however, don't forget my persistent asthma!!).  On July 3, I left for a 6 plus hour car drive to a beach vacation with family…swam, walked, the whole ta dah.  I gradually made it back to my running and was back at work, 3, 12 hour shifts a week, in August.

So….if you choose this route, I definitely think you can do it.  No your lung or chest doesn't feel empty. It does hurt and then feel sore at first.  Your respiratory function returns to normal quicker than you would think.  Your remaining lobes fill the space.  In fact, some (admittedly dumb!!!) radiologists, have even read my lung scans as "normal" since surgery….not noticing that I'm missing a few bits and bobs!!!

If you want the play by play, with my weird sense of humor, and the more difficults posts for me to read by my daughter while I was in hospital…they are at the start of my blog…back when it all began in April of 2010.

Hang in there.  You are tough and amazing and can make it through whichever approach you choose!!  AND…..see those grandsons!!!!  love, c

Hey Sweetie,

You are in a tough spot indeed.  It is true that pseudo-progression usually does occur earlier.  It sounds like a smaller surgery is possible….just a MAYBE than the lobectomy will be required???  Here's my story:

I had a complete lobectomy of the right upper lobe of my lung in 2010.  Here's the longer version:  My melanoma was in my bronchus….right main stem…pretty high up…with some question as to whether once they cut out that section and the upper lobe if they would have enough remaining bronchus to hook back up to my lower lobes.  So….I was looking at the possibility of the removal of the entire right lung…NOT something I wanted to happen.  However, with concurrent brain mets and no FDA available melanoma treatments at the time, I opted to try it.  Obviously, I came out with only the upper lobe removed via an incision in my right axilla with one other small incision for the scope.  I had been warned if things got complicated, I would have an incision running under and the length of my scapula on my right upper back.  (Funny story:  On the final visit with my thoracic surgeon, I asked how it had gone and how he had managed to leave me the rest of my lung and only use the smaller incision?  He replied, "It was a really good thing you are skinny!!!")

Healing:  I was warned that I may be in the intensive care unit and even on the vent for three days or so post op.  However, I think that was more the scenario they expected if I had had the removal of my entire right lung and the fact that I have asthma.  So….I did well.  Only had the smaller version of the surgery and was taken off the vent in recovery and sent to a room on the floor with a central IV line in my neck, the incision under my arm, a chest tube, urinary catheter and frankly…the most annoying part…inflating bags, much like a BP cuff, to both my calves in order to keep blood from stagnating.  I had one other tube….probably the BEST one…a "walking" epidural, in my back.  My pain meds were administered that way (kind of like the epidural mom's or often given with child birth, but positiioned so that you still feel everything and can walk….just not the thoracic pain….or at least a lot of it!!!) and you get good pain control with less of the drowsy effect.  I would definitely ask if that is a possibility for you!!  You can cough, function, and heal much faster if there is less pain!!!

Returning to normal:  I had surgery on April 30.  I was up walking in room (to bathroom only because of all the tubes) the next day.  Had all lines and tubes removed on May 3 and went home that day.  I made it to my daughter's highschool graduation on May 15 (had arranged for a wheelchair if I needed it…but made it on my own!!)  Walked 4 miles…SLOWLY….on  June 4…..after much shorter and even slower walks to begin with!  My PFT's (pulmonary function test) were back to my pre-surgery baseline by June 28, though I did still have a cough for a while (however, don't forget my persistent asthma!!).  On July 3, I left for a 6 plus hour car drive to a beach vacation with family…swam, walked, the whole ta dah.  I gradually made it back to my running and was back at work, 3, 12 hour shifts a week, in August.

So….if you choose this route, I definitely think you can do it.  No your lung or chest doesn't feel empty. It does hurt and then feel sore at first.  Your respiratory function returns to normal quicker than you would think.  Your remaining lobes fill the space.  In fact, some (admittedly dumb!!!) radiologists, have even read my lung scans as "normal" since surgery….not noticing that I'm missing a few bits and bobs!!!

If you want the play by play, with my weird sense of humor, and the more difficults posts for me to read by my daughter while I was in hospital…they are at the start of my blog…back when it all began in April of 2010.

Hang in there.  You are tough and amazing and can make it through whichever approach you choose!!  AND…..see those grandsons!!!!  love, c

I had the lower right lobe removed in August 2014. My lesion had been shrunk by MEK (not the normal BRAF pos.. but that's a whole different side story), from 9 cm down to 5 cm. This allowed for the surgeon to remove only the right lower and leave the middle in place, while still making sufficient margins. My tumor initially occupied 80% of the lower right lobe, so I did not note much difference in air intake once it was gone. It is somewhat scary when the surgeon explains the "if's and but's" and makes you sign a sheet consenting to a more invasive procedure, should that need to happen. The first thing I asked when I woke up was "How big is the hole? Was he able to do it robotic?" Ahhhh the crazy things we ask in ICU : )  I was moved to a regular room by the next day and felt fine, with only some minor discomfort from the chest drain tube. Within a few days, I was asking for only Tylenol, so I could avoid the constipation caused by heavier meds. At the hospital here, they make you "go" before they'll let you go! HA! Unfortunately, I was in the very low percentage of folks who develop a persistant air leak. My oncologist theorized that the slower healing may have been due to the MEK, as I'd only been off of it for two weeks to be clear for the surgery. I ended up climbing the walls of the hospital for 16 days. I wandered the halls with my portable chest drain, and finally convinced the doc to allow me to go home with it. We live 180 miles away, so there was some discomfort in the idea that if something were to go wrong with the portable unit… I could have a lung collapse issue. Everything felt completely normal on me, with the exception of any need to sneeze or cough with that tube in! I was 6-7 weeks with a chest drain. Typically, those can be removed prior to you leaving the hospital within a few days to a week. I ran errands and rode my bicycle trainer with the tube still in place. Aside from having to tote that nasty little plastic container of plural fluid around, life was pretty normal. The scars left behind are quite small, and as Celeste mentioned, there is no feeling of "emptyness" in your chest. Your guts will do a dandy job of filling in the extra space. My heart shifted slightly to the center with that lobe out of the way, and there is minor scarring that shows up along the outer wall on CT's. Even with the extended chest tube ordeal, I don't regret having it done. 

1. If you're comfortable with the decision… yes… it's the right one. : )

2. You'll bounce back faster than you'd expect to, given the removal of a lung lobe. We have 3 on the right side… sooooo… now your right will match your left. ; ) ha ha ha! 

Happy thoughts coming your way for that 90% odds of less invasive! There will be many folks thinking about you on Tuesday.

I had the lower right lobe removed in August 2014. My lesion had been shrunk by MEK (not the normal BRAF pos.. but that's a whole different side story), from 9 cm down to 5 cm. This allowed for the surgeon to remove only the right lower and leave the middle in place, while still making sufficient margins. My tumor initially occupied 80% of the lower right lobe, so I did not note much difference in air intake once it was gone. It is somewhat scary when the surgeon explains the "if's and but's" and makes you sign a sheet consenting to a more invasive procedure, should that need to happen. The first thing I asked when I woke up was "How big is the hole? Was he able to do it robotic?" Ahhhh the crazy things we ask in ICU : )  I was moved to a regular room by the next day and felt fine, with only some minor discomfort from the chest drain tube. Within a few days, I was asking for only Tylenol, so I could avoid the constipation caused by heavier meds. At the hospital here, they make you "go" before they'll let you go! HA! Unfortunately, I was in the very low percentage of folks who develop a persistant air leak. My oncologist theorized that the slower healing may have been due to the MEK, as I'd only been off of it for two weeks to be clear for the surgery. I ended up climbing the walls of the hospital for 16 days. I wandered the halls with my portable chest drain, and finally convinced the doc to allow me to go home with it. We live 180 miles away, so there was some discomfort in the idea that if something were to go wrong with the portable unit… I could have a lung collapse issue. Everything felt completely normal on me, with the exception of any need to sneeze or cough with that tube in! I was 6-7 weeks with a chest drain. Typically, those can be removed prior to you leaving the hospital within a few days to a week. I ran errands and rode my bicycle trainer with the tube still in place. Aside from having to tote that nasty little plastic container of plural fluid around, life was pretty normal. The scars left behind are quite small, and as Celeste mentioned, there is no feeling of "emptyness" in your chest. Your guts will do a dandy job of filling in the extra space. My heart shifted slightly to the center with that lobe out of the way, and there is minor scarring that shows up along the outer wall on CT's. Even with the extended chest tube ordeal, I don't regret having it done. 

1. If you're comfortable with the decision… yes… it's the right one. : )

2. You'll bounce back faster than you'd expect to, given the removal of a lung lobe. We have 3 on the right side… sooooo… now your right will match your left. ; ) ha ha ha! 

Happy thoughts coming your way for that 90% odds of less invasive! There will be many folks thinking about you on Tuesday.

I had the lower right lobe removed in August 2014. My lesion had been shrunk by MEK (not the normal BRAF pos.. but that's a whole different side story), from 9 cm down to 5 cm. This allowed for the surgeon to remove only the right lower and leave the middle in place, while still making sufficient margins. My tumor initially occupied 80% of the lower right lobe, so I did not note much difference in air intake once it was gone. It is somewhat scary when the surgeon explains the "if's and but's" and makes you sign a sheet consenting to a more invasive procedure, should that need to happen. The first thing I asked when I woke up was "How big is the hole? Was he able to do it robotic?" Ahhhh the crazy things we ask in ICU : )  I was moved to a regular room by the next day and felt fine, with only some minor discomfort from the chest drain tube. Within a few days, I was asking for only Tylenol, so I could avoid the constipation caused by heavier meds. At the hospital here, they make you "go" before they'll let you go! HA! Unfortunately, I was in the very low percentage of folks who develop a persistant air leak. My oncologist theorized that the slower healing may have been due to the MEK, as I'd only been off of it for two weeks to be clear for the surgery. I ended up climbing the walls of the hospital for 16 days. I wandered the halls with my portable chest drain, and finally convinced the doc to allow me to go home with it. We live 180 miles away, so there was some discomfort in the idea that if something were to go wrong with the portable unit… I could have a lung collapse issue. Everything felt completely normal on me, with the exception of any need to sneeze or cough with that tube in! I was 6-7 weeks with a chest drain. Typically, those can be removed prior to you leaving the hospital within a few days to a week. I ran errands and rode my bicycle trainer with the tube still in place. Aside from having to tote that nasty little plastic container of plural fluid around, life was pretty normal. The scars left behind are quite small, and as Celeste mentioned, there is no feeling of "emptyness" in your chest. Your guts will do a dandy job of filling in the extra space. My heart shifted slightly to the center with that lobe out of the way, and there is minor scarring that shows up along the outer wall on CT's. Even with the extended chest tube ordeal, I don't regret having it done. 

1. If you're comfortable with the decision… yes… it's the right one. : )

2. You'll bounce back faster than you'd expect to, given the removal of a lung lobe. We have 3 on the right side… sooooo… now your right will match your left. ; ) ha ha ha! 

Happy thoughts coming your way for that 90% odds of less invasive! There will be many folks thinking about you on Tuesday.

I did not personally have the surgery, but my father had it via davinci robot. It was a smooth and rapid recovery. Just think…you will be NED after it!

I did not personally have the surgery, but my father had it via davinci robot. It was a smooth and rapid recovery. Just think…you will be NED after it!

I did not personally have the surgery, but my father had it via davinci robot. It was a smooth and rapid recovery. Just think…you will be NED after it!