Question for those who have had lung surgery

[FloridaKaren]

My mother has NSCLC and was initially diagnosed as stage IIIb. Thankfully her tumor shrunk over 70% after chemo/radiation treatments (it was about 5cm prior to chemo/radiation). Her tumor is located in her right lung near her bronchial tube (not sure how technical that sounds ). She is going to have surgery to remove the entire right lung. Thankfully her left lung is in good shape and her pulmonary specialist is confident that she will enjoy a good quality of life with the remaining lung. Mom is 64 years old and aside from her lung cancer, in pretty good health!

Based on your experience with lung surgery, what should she expect as far as discomfort and pain? She is very frightened about losing her lung and having to rely on the remaining lung, but she was scared of chemo and radiation and actually fared very well through those treatments so she is trying to not let her imagination run wild with thoughts of how she'll feel after the surgery.

If you could share your experience I'd really appreciate it! How did you feel after you woke up, how long were you in the hospital, what type of surgery did you have, how is your quality of life now, how long did it take you to regain mobility, did the healing process seem painful, etc.

Thanks and congratulations to all you survivors! I've read some very inspirational stories here and I am ever so thankful for this message forum!!!!

My mother wasn't very active prior to her diagnosis. She and my father have been retired for several years and she is very content with puttering around the house and the garden. She is very much a home body and never really enjoyed going out shopping or visiting with friends, so she is hoping that she'll be feeling well enough to continue her puttering once she heals from the surgery.

Sincerely,

Karen

[ernrol]

Karen,

I was diagnosed with IIIb / IV MY tumor shrunk after two cycles of chemo then after four cycles there was nothing but scar tissue. If it were me I would certainly want a second opinion on the surgery. How much chemo has you mom had? What is their reasoning for removing the entire lung?

When it came time that they thought they could use radiation, they found there was nothing there but scar tissue. I have been cancer free since November 2005, I have never had a sick day and my quality of life is better than before I was diagnosed. I don’t miss having surgery. One more thing I plan to run a half marathon next month.

You may want to try Moffitt for a second opinion. They are in Tampa. Keep us posted and if I can answer any question for you just ask.

Stay positive,

Ernie

[mary colleen]

Karen, my husband had a thoracotomy/bilobectomy on 10/10/06. He was in the hospital for 5 1/2 days, (lots of tubes and monitors for the first few days), and an epidural pain block.

He was up and about the house in a limited fashion pretty much right away. I stayed home from work for the first 3-4 days just to assist him, but he was on his own after that. We went for a ride in the car on the third day home, and he began to do short walks the same day. Within a week, he was walking about a mile daily. He used pain meds just occasionally. Once that first week home was over, surgical recovery seemed about 80% complete. Specific movements (coughing, etc.) did cause him some pain, and I had to assist him with things requiring reach (like drying off after a shower.) All in all, I would say that our experience with recovery was surprisingly less intense than either of us expected. Hope it is the same for your Mom - by the way - try to have her avoid constipation, and try to have some products handy to help her with it if should develop. It's common post surgically, and is probably partly associated with decreased movement and using pain meds. No fun!

Wishing you the best of luck!

[Andrea]

Hi. My mom had a lobectomy done with VATS, which is minimally invasive. She was in the hospital 3-4 days and was not in that much discomfort at all (in the scheme of things). I remember it hurt after, but the breathing exercises are important.

It is great news that your mom is a surgical candidate!

[blaze100]

"If you could share your experience I'd really appreciate it! How did you feel after you woke up, how long were you in the hospital, what type of surgery did you have, how is your quality of life now, how long did it take you to regain mobility, did the healing process seem painful, etc. "

Hi Karen,

I had right upper and right middle lobes removed 6 years ago.

My experience was worse than others I guess. I was in hospital for 11 days. I am not a hospital person. I hated every minute of it.

When I woke up they had me in intensive care for first day. Then they moved me to regular room.

They had an epidural on me and so my whole chest was basically numb. I had two chest tubes, one ran along the front and one along the back. I was very 'out of it', but had no pain.

However, I started to become more and more confused with the epidural and eventually I started to hallucinate...very dark and morbid things....mostly at night.

Pain meds make me puke, and the epidural made me so sick to my stomach that I couldn't even stand to look at anything pink or flowery. It just made me feel awful.

So when I told the doc about my nightmares, he had them remove the epidural. This was about day 5 and then the pain really started. Very bad pain. I just passed out from the pain a few nights. They were giving me two Tylenol extra strengths every 6 hours. I guess this because I can't take pain meds.

About day 7 they were starting to get concerned because I wasn't eating anything. My husband started hand feeding me grapes and watermelon pieces and by day 10 I was actually eating the hospital food.

I felt much better when I got out of hospital. Fresh air. My own bed. My cat. My home was paradise.

The pain was minimal after a few days at home. I started chemo and radiation a few weeks later.

I remember the thing I hated the most was the nights alone at the hospital. I wish my mom could have been there just to stay in the room with me. I know that is childish, but...you know as kids we got used to reaching out for Mom when we were sick. Unfortunately my Mom lived 2500 miles away and was too old to make the trip, even though she wanted too and offered to.

Well Karen, I hope this note doesn't scare you. Many people here have had better experience. My best wishes for your mom's operation.

Barb

[Muriel]

Hi Karen,

I've had lung surgery twice. The first time the upper lobe of my right lung was removed. The second time (18 mo. later) it was the upper lobe of my left lung. I was 64 when I had my first surgery and wasn't a very active person (that hasn't changed).

Both times I had an epidural. It was wonderful. The second time, however, my blood pressure was low and the anesthesiologist said it would be better to turn off the epidural for a while. That was fine. They gave me other kinds of pain meds through the IV in my arm. With both surgeries I was uncomfortable at times but it was very manageable. Based on my experiences, this wasn't a very painful operation. I was lucky, tho. I went home on day 6 the first time and day 4 the second time. At home, I was short of breath both times and that really didn't go away the 2nd time. I used pain meds at home for several weeks - reducing the number per day every few days. My appetite really didn't return until I stopped taking pain meds. I saw the surgeon about 8 - 10 days after each surgery. It wasn't difficult to keep the appointment, but my husband drove. I had trouble sleeping at night - and still do.

I found the hospital experience to be very unpleasant. Nurses, other staff were ornery. Aside from that, however, it was ok. The first time, one of my sons was at the hospital almost all day, until the last day. That was helpful. He questioned everything they did and any meds they gave me. And, the nurses were pleasant when he was there and seemed ok with answering his questions.

This is a really, really scary thing to do. Be very patient with your mother. She is probably terrified. It isn't half as bad as you expect it to be, however.

Good luck. This will all turn out ok.

Muriel

[carolhg]

Hello Karen,

I had an upper right lobectomy in July of 2005. I also was very scared, no more like terrified. I know that I was given an epidural, I guess that helped with pain. I had this little pain machine on my bed rail and I could push the button to get some pain medication if the pain got too bad. I was up walking the hospital corridor the very next morning. I did not have much of an appetite and then I started to eat because I think my doctor thought something was wrong with me because I was not eating. I was in the hospital for 9 days. I do not know why I was there so long. My doctor I think is just one of those conservatively cautios surgeons. My pain came from the sugical incision healing. I took pain medication for that and it did help alot. I started to take Aleve after a while because the pain medication did constipate me. I did have trouble reaching for things and I found that I walked very slowly. I went back to work at the end of August teaching high school. This surgery is doable. Hey ya gotta do what ya gotta do. I hope and pray that all goes well with your mother.

Carol

[nonni]

Hi there....

Let me tell you about my surgery and I hope it helps...Maybe for me I was one of the lucky ones...but I found my surgery to be very doable...don't get me wrong now...some very bad pain but not for long...

I had a upper right lung lobectomy in Sept 2004...when I woke up from surgery I was in excruciateing pain only because my BP dropped so low they had to turn off the epidural...that only lasted about 10 minutes...after they turned the 'ep' back on...I was fine...I was home from the hospital on the 5th day walking around and in very little pain....Only while I was in bed and turned the wrong way was the pain there...I only took pain meds for a couple days cause they made me nauseous...not a piece of cake but very doable for me...

I came home from the hospital on a Sat and that following thurs I was serving coffee and cake to my friends in my dining room...

I recovered quickly..was back to work and bowling 5 weeks later..

So honey..don't look at gloom and doom ...it's phony....Your Mom is fortunate to be able to have surgery....and she will be fine...prayer's for her and you and your family...God is good...May He bless you all on your journey....hugs....PamS..

[Frank Lamb]

I had left lung removed 2003.I was home in 5 days but it is a major surgery and takes time and patience as it takes a while to adapt to what we call the new normal.

Was on O2 for a year but got off it.Still unable to do as I used to but have been pretty active since.I found it several months to be comfortable again and it still aches etc.at times.

As much activity as possible without over doing it is good along with maintaining a good attitude.

[Don M]

Karen:

I have had 2 lung surgeries. I have had 2 chemos. I have to ay the chemos were easier. But the surgeries were still doable. I was fairly active again after 3 weeks. I am 62 years old now. I remain somewhat active. I garden, cut firewood, split firewood, do housework, putter, sit at my computer, and generally do most things other people do.

I have an overhanging tree at the edge of my garden. It is starting to shade out one corner.

I am contemplating climbing the tree and limbing it, but that may be too big a bite for me now. I can't walk up hills anymore as fast I as my legs will go, because I run out of breath. I do just fine on flat ground and walk a mile every day. I do have to breathe more heavily when I cut wood and stuff, but one gets used to it and I still get enough breath.

I hope your mom recovers quickly and resumes her happy puttering.

Don M

[Nushka]

I won't kid you. Surgery is painful. It hurts when you cough, take a deep breath, turn over in your sleep etc. BUT..it is by far the best chance for a true cure. The surgeon has told her she is a candidate for surgery and if I were her I would take it without a second thought and be thankful I had a chance to get the tumor out.

As you can see from my profile I did have surgery. I think it is why I am alive today almost 4 years later and without any kind of treatment since Aug of 2003.

One thing I did (my surgeon suggested it) was to sleep in a recliner for a couple of weeks afterward. That helped alot. I was in the hospital for 5 days and walked around the yard the afternoon I came home without too much trouble. I was able to move around the house and take care of myself except for cooking etc. I did take some pain meds every 4 hours for about a week but they had told me in the hospital that it was better to stay ahead of the pain than to let it get full blown. Every 4 hours keep me comfortable and able to get up and down and walk around. After 3 1/2 weeks I flew from B'ham Ala to Las Vegas and had a wonderful time out there for 7 days. I was fine and still am.

Hope this helps.

Nina

[FloridaKaren]

I can't begin to thank you enough for the hope that you have given to me and my family! Thank you all for being so candid and sharing the details of your experiences/surgeries/recovery. I am very sorry that you all had to go through this, but I am so glad that you made it through!!!

When Mom was first diagnosed over the summer, it hit us all pretty hard and we thought we had a limited amount of time with her. She responded well to chemo and radiation and she looks so healthy it is hard to imagine that she still has the remnants of a tumor. We are very thankful that she is able to have the surgery, and your responses have really helped us to try to mentally prepare for what she will face when her surgery is over.

From what the surgeon has told us, he is going to go in through her back just below her scapula and will probably have to cut through two ribs. I recently graduated from an advanced massage therapy course so I have all sorts of wonderful anatomy books that have been very useful in explaining how our cells work, what muscles will be involved in the surgery, etc.

Thanks again for sharing your stories with me, whether you responded to this message or sent me a PM. I am so grateful! Prior to posting this question, we were all getting carried away with thoughts of a horrible recovery period for her, but now we feel hopeful that she'll have a better recovery than we had been anticipating.

Here is a picture of me with Mom over the summer just after she got her first wig. She DOES know how to smile and we see that smile alot more nowadays, but this particular day she wasn't feeling very chipper. I still think she's beautiful!

[wfshaw]

FloridaKaren,

I had my lower right lung removed in April 2005 at age 58 and it was not all that bad. Don't get me wrong the surgery was no picnic and I was scared to death. The 6 days in the hospital after the surgery were the worst. Nurses coming in all hours and checking on my dressings and giving me pills and Doctor coming in a few times a day chaeking my tubes. I had stage 1a with a 2.5 cm tumor. Once I got a clean bill of health and came home things were much better. For the first month or so I was sore (but not unbearable) where the incision was in my back and suffered from shortness of breath for about 2-3 months and then it all went away. I was truly amazed at the recovery period. Now I breathe well and only feel a slight and I mean very slight pain in my back from the incicion if I turn suddenly but that is it. They sent in home health care nurses to help me with breathing techniques and changing of my bandages for two months. I now go for a follow-up chest x-ray every 3 months and a cat scan every year and so far so good. So far so good. I think your Mom will do very good and hopefully things will sork out for the best. She may have more of a breathing problem thatn I did since they are removing the whole lung but I am sure they would not do it if her other lung wasn't in good shape so things look good for her. Bet wishes and God bless you and her through this trying time in your life. Keep us all posted. We Care.