We need info from those of you that have had lobectomies

[cat127]

hey folks - i've mentioned before that my sister has been given the offer of a left upper lobectomy. i told her that the only folks i know that can talk to her about the surgery, are folks on this site. so she'll be posting right below me, her name is Kelly. any insight or words of encouragement from those of you who have had lobectomies will be greatly appreciated. she may have specific questions, i know one thing she is worried about is how long will she be down for the count after the surgery.

[Kelly S]

Hi I am Kelly. I may have more questions as I move closer to the surgery date.

[Muriel]

Hi Kelly. Welcome!

As I understand things, surgery is the best chance for a cure. Need I say more? I had an upper right lobectomy in June 2003. The diagnosis, after surgery, was 1B - because the size of the tumor was a little larger than what "qualifies" for a 1A diagnosis. Pain management, in the hospital and then at home, was very good. I was in the hospital for 5 days. I did take Vicoden for about 4 or 5 weeks - a lot in the beginning and less and less as time went on. I didn't drive for about 6 weeks. Spent a lot of time watching really awful daytime tv. I was given the option of adjuvant chemo (carbo and taxol) and started that in mid-Sept. Recovery from that was complicated by getting the flu just as I completed the last treatment. I was told that I couldn't have a flu shot during chemo and to try to be very careful. Guess I wasn't careful enough. When I did recover from chemo, I was fine - a little short of breath for a while. That may have been partly my fault as I didn't do the breathing exercises.

I can't imagine not having surgery if the opportunity was available.

Muriel

[carolhg]

Hi Kelley,

My name is Carol. I had an upper right lobectomy in July, 2005. I took it easy for about two weeks. I did walk every day and made sure I found a reason to get out of the house, if it was just to go to the coffee shop. I found taking Aleve over the counter medication was better for me and it did not constipate me. I was back to work at the end of August teaching high school. By the Grace of God I will retire in June of 2008 after teaching for 35 years. Hope this helps.

Carol

[Bruce u]

Hi Kelly

I had an upper left lobectomy in September using a VATS procedure. I was released from the hospital and flew 900 miles home on the 3rd day. I really noticed a difference in my breathing and lung capacity after the 4th week. I just started 4 rounds of adjuvant chemo. I had never had surgey before but the operation and recovery was a lot easier than I had anticipated.

[chloesmom]

Hi Kelly,

I had an upper left lobectomy too. I was in the hospital 3 nights and couldn't believe they were discharging me so soon because I really didn't feel that great. But, I rested so much better at home and had someone here to take care of me. Make sure you've got someone pretty much 24/7 for the first few days after you get home.

It hurt to lay in bed for a week or so, and I slept on the couch and in the recliner. Be sure to do your breathing exercises and try to get up and move around some every day, with the goal of increasing some activity every day.

I was sent home with tylenol with codiene for pain and took it for about two weeks. I was back to work about 2 1/2 weeks after surgery.

It wasn't easy, but just thinking that they cut all the cancer out helped me deal with the pain and the recovery.

Good luck to you.

Cindy

[Wendy]

Hi Kelly,

Welcome!

I didn't have a lobectomy, I had my whole left lung removed almost 4 years ago. Surgery wasn't fun but was manageable.

I am sure others will chime in with more of their experiences soon.

I wish you the best,

Wendy

[bhulse]

I had an upper right lobectomy done. Are you able to do the surgery using VATS. If you are it sounds like the recovery for that is really fast. I was not able to, was cut from the top of my shoulder blade to the bottom of my ribs, but that is because it had invaded the chest wall. i was in hospital for 6 days and when i got home my daughter was a godsend. I really did need her for at least a week. I wish you good luck and a speedy recovery.

[blaze100]

Hi Kelly, I had upper and middle right lobes removed seven years ago. I was in hospital 11 days, mostly because pain meds made me sick. The first week was was very painful. VATS would be better option.

I took almost no pain meds when I got home. I was out walking and driving the day after they released me. I was ready to return to work a few weeks later, but needed further treatment.

The scar down my back and around my right side still bothers me, but I'm still here.

We are all interested in your case Kelly. Can you tell us more? How were you diagnosed? When are you going "under the knife?"

Barb

[tiredmom959]

My mom's case sounds similar to yours ... she was diagnosed as IIIB, and chemo reduced the cancer enough that they gave surgery as an option, after harvesting clear lymph nodes. This was one of the top surgeons at Hillman Cancer Center at the University of Pittsburgh Medical Center that operated.

In retrospect, we're very sorry we/she chose the surgery. It weakened her, and within 5 months after the surgery, the cancer was back and had spread, so quickly that she wasn't able to continue fighting it.

Everyone's experience is different and, of course, the initial staging has a great deal to do with it. My (and my mom's) thought always was "get it out" if you can, and certainly it makes sense to at LEAST "take out everything you can". But I now understand why they do really hesitate with surgery.

I suggest looking at Dr. West's opinion on onctalk. I wish we would have really looked into the surgery option alot more carefully and read his opinions more carefully ... just another view point ... hate to confuse you!!!

[Don M]

Pnemonectomy written 7-18-05

I had an upper left lobectomy in Jan 2004. In Feb 2005, I had the rest of my left lung removed..a pneumonectomy. Recovery from the lobectomy was not too bad, so I thought I knew what to expect when I had the pneumonectomy. But, I was surprised at how easily I got out of breath after the pneumonectomy. When I sat up on the edge of the bed for the first time the day after surgery, I was out of breath. I never had this happen after my lobectomy. I was on oxygen for 3 weeks after the day of my pneumonectomy.

I had an epidural for pain. The anesthesiologist urged me to use the epidural. He told me that there are indications that those who use an epidural have fewer post op pain problems in the future. The epidural stays on for 3 days or so. Pain really wasn’t much of a problem for me as I recall. It was managed well. When I went home I took oxycontin until the pills were gone, and did not need any more after that. Now, at nearly 4 months after my penumonectomy, I have no pain at my incision except for a sore spot where an old suture is working its way out.

One problem with the pain meds is constipation and not being able to urinate. I knew more what to expect the second time, so I asked for laxatives early. At the first operation, I had to wear a catheter home. I found out that I had a staph infection in my urinary tract. I went to an urologist and had it cleared up within a week. At the second operation, I had the catheter removed after the epidural was removed, about the third day. I still could not urinate, and I had to have the catheter reinserted (big ouch) to void my bladder. It was just a temporary insertion. After, my bladder was emptied, the catheter came out. Fortunately, after that, I was able to urinate on my own. I was most happy about that. I remember carrying containers full of urine to the bathroom and would brag to the nurses about how much I had peed. So, after my second operation, the only thing I still had attached to me when I went home was oxygen.

I have a little stiffness, but my range of motion is good. I did physical therapy after my lobectomy, but I did not do it this time. I don’t think I need it.

When I got home, I got used to sleeping on my good side. I just used a regular bed. I was able to do light housework in 2 weeks. I went back to work in 4 weeks. I rototilled the garden and mowed the lawn at 3 months. Today, I split a little wood.

It is real important to cough the gunk up from day one and to use the spirometer thingy. I started walking as soon as I could. At first it was hard for me, because I would get out of breath. When I got home, I walked every day, around the block, carrying my oxygen with me. After I got rid of the oxygen, I started walking a half-mile and soon was up to a mile a day. I still walk a mile a day. I can walk a mile comfortably in 17 minutes. I can do it in 15 minutes if I make my little short legs go as fast as they possibly can. I can go up and down a flight of stairs over and over again. I was disappointed a couple of weeks ago, when I went out in the woods and discovered that I could not walk uphill on very steep ground without stopping after 10 feet. I am still on chemo. I have one more round to go, and will finish at the end of June. My oncologist says that I should be able to do better out in the woods after I regain my stamina. He says it takes up to 8 months after chemo before you get all of your stamina back.

I was very grateful that I was able to have the operation. I am cancer free now, and did the chemo just to make sure. I did not do it after my first operation. I was stage 1 both times.

I still have a slight urge to dry cough. It is more pronounced when I bend over. It was really bad about a month ago, but is mostly gone now and manageable.

I have been told that a pneumonectomy is the most major surgery you can have… piece of cake!, Well, doable at least.

Post note: as of 8-10-06 I am treating my 3rd cancer in my remaining lung. Hopefully, I have killed it with Image Guided Radiation Therapy and am currently in alimta treatment to mopup any leftover cancer cells. A pet/ct scan in mid September, after all my treatment is done, will show the status of my cancer (dead I hope).

Post Note: as of 12-31-07, the 3rd cancer did not respond to IGRT treatment and may not have responded to cyberknife treatment. I may start tarceva in March 2008.

Don M

[Maryanne]

Hi Kelly,

I know how scared you are. But this is doable.

My husand had a right lobectomy. He probably would have healed sooner than he did as he was diagnosed with any over active thyroid which made his like a zombie. We thought this was from the cancer but it was not, it was the thyroid.

You are lucky as only 1 out of 4 is able to have an operation.

You can do this. See if it is possible to have the VATS surgery. There is only minimal cutting and a much faster rate of recouperation. Also with the lobectomy they have to spread the ribs and there are times they have to cut one to get to the tumor. With the VATS they do not have to cut or spread a rib. Not all surgeons do this procedure but you can find out if you ask.

I see you got many posts on people who have gone through this. Everyone heals different, but like it said it is doable and you will be fine.

Maryanne

[hope4life]

Hi, my mom had an upper left lobectomy in September 2007 (stage IIB before surgery, restaged IIIA after surgery). The good news is, she is doing well now. She still coughs some and gets short of breath pretty easily. She was in the ICU for 10 days and had 2 chest tubes. She had some difficulty with the lower left lobe sealing correctly and needed a pleurodesis procedure which fixed the problem right away. Mom was totally overmedicated though and constipated for 8 days (please don't let it go that long...the doctors wouldn't listen to us)! She really didn't complain of much pain at all at the surgery site, both following surgery and even when she got home. She did have pain in her left shoulder and pain/swelling of her left breast for a while. She still does have some discomfort in her left shoulder.

Keep in mind, everyone is different! My mom is definitely doing ok!

[jim_wny]

Hi Kelley

I had surgery ( removal of upper left lobe - stage 1A ) on Dec 11th and was released from the hospital on the 16th. I'm still off from work but plan on being back to work by Jan 21st. I found that I was ( and still am )in some pain ( mostly when coughing or laughing )but not as bad as I had anticipated.

Definitely get out of breath fairly easily but working on that. My best advice would be to use your pain meds and do your breathing exercises.

[Andrea]

My mom had a lobectomy via VATS and was home from the hospital in a few days and was pretty mobile. Sure she had some pain, but overall it was an easyish recovery.

My dad had a wedge resection via VATS and was home from the hospital quickly and recovered like nothing happened. He was not supposed to lift anything, yet a 15lb bag of dog food made it into the house (he claims the poodle carried it in). He said it was not bad at all.

I would try to see if VATS is an option b/c the recovery is so much easier.

[Tom K]

Hi Kelly,

I also had and upper right lobectomy. My experiences were very similar to the others that posted here. I had an epidural inserted before surgery and it stayed in for a couple of days which made the pain tolerable. After surgery, the doctors inserted a chest tube to drain fluid. It was very uncomfortable. The chest tube was removed after 3 days and I started feeling much better very quickly. It is important to cough up the mucus in your lungs after surgery. Coughing was painful even with the epidural, but it was doable. Some people found hugging a pillow helped them. I continued taking oral pain meds for about 10 days after surgery then found I no longer needed them. I did all the breathing exercises frequently and I started walking for a ½ hour a day about 2 weeks after surgery. I was able to go back to work about 4 weeks after surgery ( I work in an office). After surgery, I received concurrent chemo-radiation treatments which were a lot more difficult than the surgery. Today, I still have some minor residual nerve pain that runs along a rib from the scar to the front of my chest. It is not so much pain as it is sensitivity to touch. I am told this is very common. For the past 14 months I have been very conscientious about doing aerobic workouts at least 3 times a week (for weight control). The aerobics have had a huge impact on my lung efficiency. A PFT in December indicated my lungs are now at 104% of expected efficiency. So 2 years after surgery my lungs are not causing any limitations to my life. I strongly recommend you agree to the surgery. It is your best chance for a cure and in the long run, it should not greatly impact the quality of your life.

[LovesLife]

Hi, I had a left lower lobectomy by VATS in June of 2006. I did not have to have oxygen at all after the surgery. They took out my chest tubes after about 14 hours and believe me, what a relief that was.

This was the only surgery I have ever had, but I think that my mindset had a lot to do with how I recovered. I kept telling myself how fortunate I was to be able to have the surgery in the first place and that really helped with everything. The pain was there - but certainly nothing intolerable. My surgeon mentioned that VATS was much easier on the body so I was lucky that I was able to have that type of surgery as well ... less invasive.

On day 2 or 3 (they discharged me from the hospital about 32 hours after my surgery) I went out and walked about 1/2 mile and increased it by a little bit each day. I didn't use the pain medication for very long; however, I did have my mom come and stay for a week to help with meals, driving, etc. for my family. I made up meals ahead of time and froze them; however, friends also brought meals which was unexpected, but very welcome. At present I have a little trouble when it is extremely cold, but I don't think my lungs ever liked it when it is extremely cold out. You've gotten great advice on best ways to manage sleeping so I won't go there.

Please, keep us posted.

Linda

[Kelly S]

Well, it has taken a while with a lot of fear and anguish but I have decided on the surgery. Unfortunately, I am not a candidate for VATS which, I understand, is the easiest on the body. I am scheduled for January 22, 2008. My sister and daughter will be in town for the surgery and my daughter for a few days following. My sister, Kim, will stay longer as she has 5 weeks of leave. I don't think I'll need her for that long but it will be a relief to have her here. My husband is a pharmacist who workd 12 hour days when he works. He can certainly help on his days off and he is a good cook. So, I'll be OK. The fear, of course, is that I will receive no benefit from this surgery. But, since it is my only shot as a cure, I have to "take a leap of faith." Our MOther was the luckiest person I ever knew. When she died, the six of us - her children- wondered who would get her luck. So far, none of us has. I am praying that this is the time it will be given to one of her children - me.

It is an emotional rollercoaster and I wonder if I will ever be able to get off!

[Don M]

Good luck Kelly and I hope this is your ticket off the roller coaster.

Don M

[LovesLife]

Kelly:

I will be thinking about you on the 22nd and praying hard!

Sounds like you will be well taken care of (my husband is great, but cooking - not so much). It is good that you will be surrounded by so many and you can just concentrate on recuperating.

I think your mom will be there in spirit to dispense a little of her luck your way. I'll pray right along with you that it is you who will carry her torch of "luck".

Sorry the ride is so horrible - truly wish you weren't on it.

Linda

[blaze100]

Good Luck Kelly.

It sounds like you will have lots of people helping out, and it is important in the hospital to have help. You just never know what kind of situation will come up - when it will help to have family advocate for you....if you need special food or extra pain meds.

My Mom used to say "It will be hard, but you can do it.", maybe your Mom did too.

Prayers,

Barb

[cat127]

hey folks - thanks to one and all for their input. as kelly said, it was a tough decision to come to but now that it has been made, we are ready to tackle it head on. my mother raised no wimps, well, maybe one but it wasn't me or kelly.

she will have plenty of help and trust me, i'm more than capable to be her advocate. i've only pissed off one nurse so far, so i've still got plenty left to annoy. actually, i've found that her two oncologists are very open to listening to me and they seem to be OK with me butting in all the time. i don't think the surgeon knows yet that i work in oncology, but i'm sure i'll bring it up at some point.

i did talk with dr west on his board about this and he was very up front about how he thinks kelly's team sounds like an outstanding group and she's lucky to have them, we agree with that assessment. we lucked into these guys but i highly recommend them. dr west also said that he has no doubt there are 3b patients who benefit from the surgery and kelly meets all the criteria of the people he felt are likely to benefit.

so we take the leap of faith and we count on our mother to be her angel. that woman had some serious pull with more than a few saints.

[slinaresholz]

Hi Kelly!

I had stage 3A and had the bottom half of my right lung removed four years ago. I am doing fine and my cat scans have been normal. The first weeks after surgery were the hardest. I remember getting out of bed was rough at first. After five months I took a trip to Ireland. Had a little trouble walking uphill but otherwise, I enjoyed it. A year after surgery, you will be in great shape. You will feel better and better month after month. Best of luck to you!

Sharon

[cat127]

Hey Sharon, thanks for that info! Especially about going to Ireland, as Kelly and our other sister and I plan to go to Paris and we think that Paris in Springtime sounds wonderful, and perhaps a bit like a song.

[LovesLife]

Ah, Paris in the springtime - sounds lovely and will give Kelly something to look forward to after the surgery. Keeping you all in my prayers for the 22nd.

Blessings,

Linda