Pneumonectomy

[Dlh]

Hello!  I was diagnosed with nsclc 12/3.  All tests showed it is contained to the upper right and middle lobe.  Very deep so resection is not an option.  I will have a Pneumonectomy 1/11 and am looking for others who have had this procedure to discuss outcome, recovery etc.  Thank you 

[BridgetO]

Hi Dlh and welcome.I'm sorry to hear about  your diagnosis.  There are seveal people on these forums who have had pulmonectomies. i"m sure you'll hear from somebody with first-hand info for you. Hang in there.

Bridget O

[Tom Galli]

Dlh,

Unfortunately, I had a pneumonectomy completely removing my right lung.  Bottom line up front: my surgery was nearly 15 years ago and despite 4 recurrences and suture complications requiring additional surgery, I'm still here. If I can live, so can you. I've written a lot about surgery on this forum so you are welcome to read about my and other member's experience.  Several points to stress are:

• If you have a high density foam mattress and an electric bed, you'll find them an excellent resource after recover.  If not, go to a mattress store and audition back elevating wedge pillows.  It is much more comfortable to sleep with your back elevated after surgery.  The wedge pillow transfers weight from your back to your hips and anything you can do to take the weight off incisions will be very helpful.
• Ask your surgeon for a prescription for transdermal lidocaine patches.  These are very helpful to relieve pain especially when preparing for sleep. Here are some useful hints in dealing with doctors.
• Don't be surprised if you are discharged with a chest tube installed.  For some of us, we get the tube and drain bucket postoperatively and in my case, I had one for about 3 weeks at home. Depending on where the tube is located, back sleeping may be a problem.  Here I found small square-sized pillows helpful to protect against laying on the tube.
• You'll likely have narcotic medication while in the hospital and after discharge.  Use it but also stock up on laxative.  One wants to avoid any kind of straining with incisions in the chest.
• When home, folks will want to visit.  Be very careful with parents with school aged children and the children themselves.  The last thing you want is to catch a chest cold and cough with fresh incision wounds.  A chest cold landed me back in the hospital after 5 days home and that episode started my surgical complications.
• You will likely face a course of adjuvant chemotherapy about a month to six weeks after surgery.  Find a medical oncologist you have confidence with now.  This discipline will be your medical provider after surgery and you'll likely see one semi-annually for the rest of your life.  Also, get a port to make the infusions much, much easier on you. 

You'll likely have more questions and this is the place.  We're not doctors but very experienced lung cancer survivors.  Speaking of surviving, here are my ten steps to surviving my disease. Welcome here.

Stay the course.

Tom

[Dlh]

1 hour ago, BridgetO said:

Hi Dlh and welcome.I'm sorry to hear about  your diagnosis.  There are seveal people on these forums who have had pulmonectomies. i"m sure you'll hear from somebody with first-hand info for you. Hang in there.

Bridget O

 

[Dlh]

Thank you!  Apparently I’m not familiar with using this site as I’m not getting notifications.  

[Dlh]

Thank you for your tips, helpful!  

[MBinOregon]

Dlh,

Welcome.  Like Tom, I also had a pneumonectomy, also on the right side.  It was May last year, so it's been about 8 months.  In addition to what Tom mentioned, here are my tips.

- when they offer epidural, do take it.  IF they don't offer, ask/insist. 

- I didn't have any chest tube.  I was actually told, unlike lobectomy, you wouldn't want to use chest tube for pneumonectomy.  I was up and about (walking around the ICU with my nurse in tow) the day after the surgery.  You WILL notice the difference, breathing wise, of not having that lung.  The strangest thing was my heartbeat was LOUD (to me) and echoed in the hallow cavity that once contained my right lung, but it goes away once that area fills up with fluid which is normal and expected.  Came home 3 days after the surgery, started walking my dog 2 wks after that.  For me the radiation a month after the surgery was harder to recover from, but everyone's experience is different.  

- The nurse did apply lidocaine patch and found out from the pharmacist at the hospital that those are same as the ones you can find at drug stores.  So I got a box of lidocaine patches from Costco and it helped so I could manage the pain without having to take pain pills. 

- As for laxatives, I've been taking MiraLax.  Other laxatives give you cramp and my regular doc told me this is gentle that they even prescribe to kids.  The targeted therapy drug I've been on also gives me constipation, so I take it once every day.

Let us know if any questions

MB

[Dlh]

Thank you for the tips!  I’ve heard from some about continued nerve pain.  Any input on that?  I have never experienced much with pain meds so am nervous about that.  Actually nervous about ALL of it!!  It’s so comforting to hear from someone that has had the same surgery 

[MBinOregon]

How could you not be nervous?  Pneumonectomy is a major surgery.  I didn't even have a Tylenol in my house before my LC diagnosis, now it looks like a pharmacy!

I was warned of the back pain as inevitably they'd injure the nerve and for me, that back pain (somewhere between shoulder blades) was far worse than my incision site and it was the reason I used that lidocaine patch.  It helped.  After I came home from hospital, I barely took any pain pills.  You don't want no pain, you just want to manage it to a point of being able to function.  I also deal with it with acupuncture and massage.  The more you move, the faster you'll recover including the nerve pain.

[Dlh]

Thank you so much for your input!!  I have my list of questions ready as I have my pre op physical this Thursday.  I’m strong willed and a nurse (possibly not a good combo 😂).  I’m thankful for so very much!!  My attitude from the get go was that I plan to kick a$$

[BridgetO]

Strong willed and a nurse is a GREAT combo for being an informed self-advocate. By all means kick a$$ and take names, when you need to. About those notifications-- I've been on this site for a couple of years and occasionally I get notificationa but most often I don't. Maybe somebody else knows why.  I just get on here fairly often and look at the list of unread content, upper right corner below "search".

[Mark C]

Hi Dlh,

I too had a pneumonectomy. Mine was left side. Like MB said, get the epidural. I believe it helped control post surgery pain. They left mine in for 4 days, and I was in the hospital for 7 days total. Funny thing about the epidural is I was told it was a new"ish" idea to use for surgery and every time the medicine ran out in the cassette the nurses had to get someone from the maternity ward as none of them knew how to change it, or where to get new medicine. Once they worked it out, it was OK. As for the recovery I was up and walking after they took out the epidural.  There was a considerable amount of pain afterword but easily controlled with pain relievers. I  was walking a mile a day 2 weeks after I got home and was back to work after 4 weeks. I have an active job and although having one lung may have slowed me just a bit, I am doing pretty well. My surgery was 4/3/18. I do still have some mild pain sometimes at the incision site, but nothing major at all.  Let us know if you have any other questions.

[LouiseB]

Hi Dlh,

So sorry you have to go through this but, as you can already see, you have tapped into a wealth of knowledge and support here.

My husband’s case sound similar to you: nsclc: upper and middle right lobes only, lymph nodes clear. He had his pulmonectomy (robotic surgery) at Queen’s in Honolulu last May 7. Yes, it was scary, yes it was painful, but all that passes. The nerve pain others have described is likely but can be managed, and my husband has none of that any more. He had adjuvant chemo (4 cycles of Cisplatin/Alimta) and we were happy to do it, for the extra feeling of security it gives. He went through the course extremely well. Although it’s unlikely anyone can avoid all side-effects, he was spared many of them, and we learned that many people tolerate the drugs pretty well, especially if you take all the precautions that are advised. For example, he immediately started daily mouth rinses to avoid mouth sores, and never had an issue.

We already had an adjustable bed, which was extremely helpful. His pain was at times disconcerting. The nerve damage can cause referred pain in a totally different area from the incision. It helped when we realized this is not unusual. Also, as the incisions healed, he got some discomfort which was much relieved by me massaging the lumpy areas around the incisions.

Since the end of his chemo course (August 21) he’s had 2 totally clear PET scans, and is back to everything he was doing before surgery and more. In retrospect it’s evident that the slow-growing tumor had been affecting his health, both physical and mental, for a long time without us realizing it; he is now healthier AND happier than he has been for some years.

We could not be more grateful for the superb surgeon and nursing care, and for the knowledge, support and guidance of this forum’s members. This forum not only gave me comfort through knowledge, but also a platform to write my own thoughts and experience during my husband’s surgery and hospital stay, which was for me the loneliest and scariest time. 

Bottom line, take every bit of advice and be ready for some hiccups along the way, but know that your journey could be surprisingly smooth sailing, especially with your obviously upbeat and positive attitude, which is a huge advantage to you.

Do continue to reach out to this fabulous community and let us all know how you are doing too. 

Onwards and Upwards! 👍

- Louise

[Dlh]

Thank you for the tips and encouragement!  ❤️🙏

[Curt]

Hi Dlh.  I don’t have any experience with a pneumonectomy but as you’ve found from the other who have replied you are in the right place for advice.  I may be able to help with the notifications.   I had the same issues when I signed up.  If you are on a mobile device, on the top right of the screen there should be three dashes (programmers call it a hamburger).  If you hit that, then the 🔔 symbol you will see your notifications window.  At the top right of that there are notification settings.  You can adjust your settings there.  You do have to be logged in to see that.  

Good luck with your operation and recovery.  My thoughts prayers are with you.