Dealing with Lobectomy

gelc
gelc Member Posts: 29
edited March 2014 in Lung Cancer #1
Had my lower left lobe removed to cancer 8 weeks ago. I still feel some pain and some breathing difficulties. would llike to hear from others who have gone through this surgery.
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Comments

  • gelc
    gelc Member Posts: 29
    my49er said:

    I had my upper right lobe removed Jan 3 2001. Still have pain but is getting better. Not as tired anymore, still out of shape. My doc said it would probably be a year before I'm back to half way normal, of course being macho I didn't believe him, but I now believe. We had a major trauma to our bodies and to our mental. My biggest problem is for about 4 months I was a couch potato. Have gained 25lbs, but mowing the lawn and doing yard work helps. I forgot what it was like to smell the Roses. Take care it's a good pain.

    Thanks for answering so quickly. I needed to hear from someone who has gone through this. Did you have anything else done besides the surgery? Any other treatment? I have rib pain and sitll have some difficulty getting deep breaths. My internist has prescribed an in haler because I do have times of shortness of breath.
  • grammy
    grammy Member Posts: 20
    I had lower right lobe removed 9 months ago. I no longer have any pain. Do you have NSCLC or SCLC? I have had chemo before and after surgery, then 35 radiation. My biggest problem is cough which seems to be getting better with use of inhaler. Did you have any lymph node involvement? Good luck and keep your chin up.
    Grammy
  • gelc
    gelc Member Posts: 29
    grammy said:

    I had lower right lobe removed 9 months ago. I no longer have any pain. Do you have NSCLC or SCLC? I have had chemo before and after surgery, then 35 radiation. My biggest problem is cough which seems to be getting better with use of inhaler. Did you have any lymph node involvement? Good luck and keep your chin up.
    Grammy

    I had NSCLC with no node involvement. My internist just gave me an inhaler which helps with my small cough. Good luck to you too
  • my49er
    my49er Member Posts: 4
    gelc said:

    Thanks for answering so quickly. I needed to hear from someone who has gone through this. Did you have anything else done besides the surgery? Any other treatment? I have rib pain and sitll have some difficulty getting deep breaths. My internist has prescribed an in haler because I do have times of shortness of breath.

    Nothing else done since surgery. I found out I had cancer Oct 10, 2000. I met with a ogyn & sugeron and listen to what both of them had to say. I initally wanted surgery but went on the internet and search for info. Sloane- Kettering had a little article about chemo first then surgery, survival rates "appeared" to thriple. My ogyn wanted to do chemo so 3 days before surgery I canceled and started chemo for nine weeks. Last chemo Dec 19th, surgery "good way to start the new year" Jan 3 2001 with rescheduled surgery. Reports after surgery said at time of tumor removal it was dead. I feel chance of cancer spreading due to mestortises (spelling) when lung was opened is little to none. That's my story and personnel feeling, I don't know if I made the right decision. If 5 years from now I'm free of cancer then I'll think I'm right but still won't know for sure. How about you. E-mail me at [email protected]
  • janny
    janny Member Posts: 1
    Had upper right lung removed 4-23-2001. What a horrific experience but have had no pain after 9 weeks but breathing is still difficult under various situations; brisk walking, etc. Just started 1/2 hr. strong swimming daily exercise to determine if this will strengthen lungs.

    Indication was that surgery got the cancer as it early detection Stage I non-small cell. I am most interested in how others with this surgery felt about the operation in general and the recovery. I consider myself a person with a high pain tolerance and felt I was in excellent health but this surgery is something no one can fully comprehend in advance.

    Your thoughts?
  • gelc
    gelc Member Posts: 29
    janny said:

    Had upper right lung removed 4-23-2001. What a horrific experience but have had no pain after 9 weeks but breathing is still difficult under various situations; brisk walking, etc. Just started 1/2 hr. strong swimming daily exercise to determine if this will strengthen lungs.

    Indication was that surgery got the cancer as it early detection Stage I non-small cell. I am most interested in how others with this surgery felt about the operation in general and the recovery. I consider myself a person with a high pain tolerance and felt I was in excellent health but this surgery is something no one can fully comprehend in advance.

    Your thoughts?

    I had my surgery 4-24-2001, so we are at exactly the same point. I too had stage 1 non-small cell, with no further treatment warrented. The pain is finally gone, and the breathing is good, except in cases of extreme heat. Then I just go in air conditioning for a while. I do have an inhaler that I use as needed, and that seems to help. I do feel back to my old self, and am trying to exercise also to build my endurance.
    Yes, the pain was interesting, but I feel that it was well managed in the hospital, and I was able to get off the pain pills within 4 weeks of suregery, which surprised the doctor. I am on anti-depressents and seeing a therapist also. Feel free to email me.
  • gram
    gram Member Posts: 2
    I had a left upper lobectomy 18 mos. ago and I feel wonderful today. Give yourself time to heal and be patient. I was a good ten weeks before I felt like a human again.Today I walk 2 miles a day. I guess I was lucky, I never had trouble breathing. I get shortwinded climbing stairs and doing physical work. It was a very painful recovery but I tried to walk in the house a little bit each day. During recovery from surgery, I felt very lonely a lot of times altho I had a wonderful supportive family and friends. I also experienced depression,anxiety and crying jags. My Doctor put me on antidepressant medicine and it has made a big difference. Also , these feelings are normal. Our bodies have gone thru a major trama undergoing major surgery. The biggest thing I found was to listen to my body. Rest when you are tired, cry when you are sad, talk when you need to. One day you will feel like a brand new person. Hope This helped you. If you have any more questions, I will be glad to talk with you. I am a 59 year old female.
  • gram
    gram Member Posts: 2
    janny said:

    Had upper right lung removed 4-23-2001. What a horrific experience but have had no pain after 9 weeks but breathing is still difficult under various situations; brisk walking, etc. Just started 1/2 hr. strong swimming daily exercise to determine if this will strengthen lungs.

    Indication was that surgery got the cancer as it early detection Stage I non-small cell. I am most interested in how others with this surgery felt about the operation in general and the recovery. I consider myself a person with a high pain tolerance and felt I was in excellent health but this surgery is something no one can fully comprehend in advance.

    Your thoughts?

    Janny,I had upper left lobectomy 18 mos. ago. Mine was also early detection.I am non small cell adenocarcinoma. I did not need any treatment, but every 6 months I get a catscan and xrays. I agree with you that I have never experienced pain like that in my life. I still have flashbacks about the pain, altho they are getting farther apart.It's funny cause I can walk and hardly get out of breath but climbing stairs to fast and I have a hard time breathing. Do you have trouble wearing a bra? I cannot wear one cuz it presses on the incision and bothers the nerves from the surgery.
  • leslief
    leslief Member Posts: 6
    I am 6 weeks out and still in a great deal of pain. I had my upper and middle lobes removed from my right lung. I'm also easily made breathless. I hope you are much better by now.
  • sissylu1
    sissylu1 Member Posts: 66
    gram said:

    I had a left upper lobectomy 18 mos. ago and I feel wonderful today. Give yourself time to heal and be patient. I was a good ten weeks before I felt like a human again.Today I walk 2 miles a day. I guess I was lucky, I never had trouble breathing. I get shortwinded climbing stairs and doing physical work. It was a very painful recovery but I tried to walk in the house a little bit each day. During recovery from surgery, I felt very lonely a lot of times altho I had a wonderful supportive family and friends. I also experienced depression,anxiety and crying jags. My Doctor put me on antidepressant medicine and it has made a big difference. Also , these feelings are normal. Our bodies have gone thru a major trama undergoing major surgery. The biggest thing I found was to listen to my body. Rest when you are tired, cry when you are sad, talk when you need to. One day you will feel like a brand new person. Hope This helped you. If you have any more questions, I will be glad to talk with you. I am a 59 year old female.

    how are you?
    Don't know if you are still checking in on this site but am home recovering from having my right middle lobe removed Dec 3rd and still taking pain meds..stage 1a with no further treatment reccomended although I will be following up with an oncologist..has your cancer come back?
  • cabbott
    cabbott Member Posts: 1,039 Member
    sissylu1 said:

    how are you?
    Don't know if you are still checking in on this site but am home recovering from having my right middle lobe removed Dec 3rd and still taking pain meds..stage 1a with no further treatment reccomended although I will be following up with an oncologist..has your cancer come back?

    Check dates!
    You may wish to start a new post instead of replying to ones that are more than a month or two "old". Folks come and go quickly on a board and old posts rarely get checked so you don't get replies to your questions.

    I hope you are doing well with your operation. It is normal to take pain meds for about a month after major surgery. If you had VATS surgery you should soon be ready to take over-the-counter meds instead of the prescription stuff. It may take longer if you had conventional surgery.

    I am at stage 1a too, both for breast cancer and for lung cancer. I met with a pulmonary oncologist once but she said I was too healthy to see her!! I still see my breast oncologist as they have preventitive meds for that I can take. I sure wish there were medical ways to prevent future episodes of lung cancer too. Exercise and good diet is about all I see supported by research as a way to stay out of the operating room.
  • grama17
    grama17 Member Posts: 14
    sissylu1 said:

    how are you?
    Don't know if you are still checking in on this site but am home recovering from having my right middle lobe removed Dec 3rd and still taking pain meds..stage 1a with no further treatment reccomended although I will be following up with an oncologist..has your cancer come back?

    Lobectomy recovery
    I just came to this site to possibly get more info on recovery after a lobectomy. I noticed the dates from the posts so I am not sure I am in the right spot. I also read the other person saying maybe would be better to start a new post. I haven't done this before and haven't been on this site for discussion boards either. So being new to this I will keep checking out what is available.
    I had upper left lobe removed on 2-28-11 and working on the recovery process. No further treatment for the lung cancer is needed. I had a triple bypass late 1998 and lumpectomy for breast cancer, which was in a lymph node also; and breast reduction a year ago. Still taking meds for that after radiation.
    This surgery is more painful and I a guess I am just looking for more info on recovery from the surgery.
    Thank you
    grama17
  • PBJ Austin
    PBJ Austin Member Posts: 347
    grama17 said:

    Lobectomy recovery
    I just came to this site to possibly get more info on recovery after a lobectomy. I noticed the dates from the posts so I am not sure I am in the right spot. I also read the other person saying maybe would be better to start a new post. I haven't done this before and haven't been on this site for discussion boards either. So being new to this I will keep checking out what is available.
    I had upper left lobe removed on 2-28-11 and working on the recovery process. No further treatment for the lung cancer is needed. I had a triple bypass late 1998 and lumpectomy for breast cancer, which was in a lymph node also; and breast reduction a year ago. Still taking meds for that after radiation.
    This surgery is more painful and I a guess I am just looking for more info on recovery from the surgery.
    Thank you
    grama17

    Hi grama17
    I was 45 years old when I had my lobectomy in Sept. 2009. I have always been in good shape and I was quite shocked to learn I had a mass the size of Rhode Island in my right lung. The mass was making me very sick and it had just about destroyed my upper right lung so they did a lobectomy. Long story short it was not cancer but a severe infection. I did not have the VATS so I have a big ugly scar, but I am OK with that.

    The recovery from the surgery took a lot longer than I expected. I was on hydrocodone for about 6 weeks after the surgery and ibuprophen for a few weeks after that. Even now I still have some discomfort here and there but it's not bad.

    Do not be surprised if you gasp from time to time. It took at least 3-4 months for the gasping to stop happening frequently, meaning several times an hour. It still happens once or twice a day but not every day.

    I found it much more comfortable to sleep sitting up. I did this for about 3 months after surgery. If you don't have a bed that raises up like a hospital bed, you might want to invest in a good chair-pillow.

    Today I am 47 years old and I'm working on getting back in shape. I do my stair stepper almost every day and I take the stairs to my 8th floor office. There is healing from this surgery. It might be slower than you hope but it will come.

    If I can answer any more questions I will be happy to do so. All the best to you in your recovery.
  • grama17
    grama17 Member Posts: 14

    Hi grama17
    I was 45 years old when I had my lobectomy in Sept. 2009. I have always been in good shape and I was quite shocked to learn I had a mass the size of Rhode Island in my right lung. The mass was making me very sick and it had just about destroyed my upper right lung so they did a lobectomy. Long story short it was not cancer but a severe infection. I did not have the VATS so I have a big ugly scar, but I am OK with that.

    The recovery from the surgery took a lot longer than I expected. I was on hydrocodone for about 6 weeks after the surgery and ibuprophen for a few weeks after that. Even now I still have some discomfort here and there but it's not bad.

    Do not be surprised if you gasp from time to time. It took at least 3-4 months for the gasping to stop happening frequently, meaning several times an hour. It still happens once or twice a day but not every day.

    I found it much more comfortable to sleep sitting up. I did this for about 3 months after surgery. If you don't have a bed that raises up like a hospital bed, you might want to invest in a good chair-pillow.

    Today I am 47 years old and I'm working on getting back in shape. I do my stair stepper almost every day and I take the stairs to my 8th floor office. There is healing from this surgery. It might be slower than you hope but it will come.

    If I can answer any more questions I will be happy to do so. All the best to you in your recovery.

    Dealing with Lobectomy
    Thank you PBJ Austin for the reply. I don't know the term VATS but I have a big ole scar across the left upper back and some drain tube scars (ouch) under my left arm kind of on top of the incisions from the breast cancer. The doctors and others have told me that this is about the most painful surgery you can have so I thought I was prepared enough, I thought I would be off the RX pain meds after 2 weeks out of the hospital but I have tried the regular over the counter and it doesn't even dull the pain most of the time. I really don't like having to have my husband do the cooking and things I usually do. He is happy to be of some kind of help so I should just relax and let myself heal in the time it takes.
    It does help though to hear from others that have had the same done and how it effected them. I am not in as good of shape or as young as you were when you had your surgery, but I have bounced back after my other surgerys pretty quickly.
    Well, again thank you so much for your reply. I am glad you are doing so well and that you didn't have a hugh mass of cancer. Very fortunate. My lung cancer was caught at a very early stage due to a scheduled CT 6 months after a bad case of pneumonia during last summer, as a f-up scan. At that time they saw a new spot that had not been there during the illness in the summer. I was very lucky, but it was in a bad spot so they had to take the whole upper left lobe. At the time they were not absolutly sure it was cancer, but pretty certain from the Pet Scan. It was but caught very early so I am lung cancer free now.
    Well gees, too many words. whew, wore me out! Thanks Again
  • sissylu1
    sissylu1 Member Posts: 66
    leslief said:

    I am 6 weeks out and still in a great deal of pain. I had my upper and middle lobes removed from my right lung. I'm also easily made breathless. I hope you are much better by now.

    pain
    I had my right middle lobe removed Dec 3rd and NOT by the VATs procedure so it is a completly diferent recovery..I too thought I was ready to deal with the pain but this knocked me off my feet..I returned to work part-time the middle of feb but was still taking vicoden at night and exhausted by the time I would get home from work..I am 51 years old and in good health and my tumor was found on a routine chest x-ray, have been staged 1a but will continue to be followed by an oncologist.
    I spent hours on web sites looking at recovery time frames for this surgery and it takes alot longer than most of us were led to believe by our surgeons..I still take extra strength tylenol 3 times a day and don't even get me started on what its like to wear a bra! I do feel better than you do at 6 weeks out but please be patient with yourself, continue to do your breathing exercises, walk when you can, get as much sleep as you can (I take lunesta at night as I feel better in the day if I get a good nights sleep) and it will get better but it is a slooooooow process.
  • grama17
    grama17 Member Posts: 14
    sissylu1 said:

    pain
    I had my right middle lobe removed Dec 3rd and NOT by the VATs procedure so it is a completly diferent recovery..I too thought I was ready to deal with the pain but this knocked me off my feet..I returned to work part-time the middle of feb but was still taking vicoden at night and exhausted by the time I would get home from work..I am 51 years old and in good health and my tumor was found on a routine chest x-ray, have been staged 1a but will continue to be followed by an oncologist.
    I spent hours on web sites looking at recovery time frames for this surgery and it takes alot longer than most of us were led to believe by our surgeons..I still take extra strength tylenol 3 times a day and don't even get me started on what its like to wear a bra! I do feel better than you do at 6 weeks out but please be patient with yourself, continue to do your breathing exercises, walk when you can, get as much sleep as you can (I take lunesta at night as I feel better in the day if I get a good nights sleep) and it will get better but it is a slooooooow process.

    Pain
    What is the VATS procedure? I haven't read enough apparently and the surgeons office never mentioned it. All I know is I have a large incision on my upper back and holes on the side where the drain tubes. I am sure it is going to take longer than I though for sure. I had a triple bypass when I was 50 and I don't remember it being this bad and was back to work after about 4 weeks. I am 63 now and had surgery for breast cancer early last year with radiation and now this. I think my body is getting a bit tired of being cut on. At least I am now retired and don't have to go back to work like before.
    But summer is just around the corner and there are grandkids (17) I want to see so the recovery will have to speed it up a bit. I am working on it at least.
    Take care Sissylu
  • Kimmiann
    Kimmiann Member Posts: 46
    grama17 said:

    Pain
    What is the VATS procedure? I haven't read enough apparently and the surgeons office never mentioned it. All I know is I have a large incision on my upper back and holes on the side where the drain tubes. I am sure it is going to take longer than I though for sure. I had a triple bypass when I was 50 and I don't remember it being this bad and was back to work after about 4 weeks. I am 63 now and had surgery for breast cancer early last year with radiation and now this. I think my body is getting a bit tired of being cut on. At least I am now retired and don't have to go back to work like before.
    But summer is just around the corner and there are grandkids (17) I want to see so the recovery will have to speed it up a bit. I am working on it at least.
    Take care Sissylu

    VATS
    Sissylu,

    VATS is video assisted thoracic surgery. That is how I had my right lower lobe removed. It is more of a laproscopic surgery. I had 2 small incisions (one on lower back and one of right side) about 1 inch and then a larger 3-4 inch incision (on side and rounding under breast) and a drain tube (under breast). I have a total of 4 scars from the surgery with the largest being the 3-4 inch one.

    I had surgery 8 weeks ago and I still have minor pain in the incision areas an if i move wrong it hurts. However, VATS is a much smaller surgery than an open type like you indicated. I did notice an increase in incision pain since I started chemo.

    Kim
  • lekkerone
    lekkerone Member Posts: 199
    Kimmiann said:

    VATS
    Sissylu,

    VATS is video assisted thoracic surgery. That is how I had my right lower lobe removed. It is more of a laproscopic surgery. I had 2 small incisions (one on lower back and one of right side) about 1 inch and then a larger 3-4 inch incision (on side and rounding under breast) and a drain tube (under breast). I have a total of 4 scars from the surgery with the largest being the 3-4 inch one.

    I had surgery 8 weeks ago and I still have minor pain in the incision areas an if i move wrong it hurts. However, VATS is a much smaller surgery than an open type like you indicated. I did notice an increase in incision pain since I started chemo.

    Kim

    VATS
    Hi Kim
    I had a lobectomy Dec. 01/10.. I had a video conference with my surgeon 10 days ago. He said that the pain from the VATS surgery can last as long as a year for some people. He said it is nerve and rib pain where they did the surgery. In all of the four places you mentioned. This is because those spots were irritated during the surgery and is nothing to worry about. I was happy to hear that because I was a bit concerned.
  • lekkerone
    lekkerone Member Posts: 199
    Kimmiann said:

    VATS
    Sissylu,

    VATS is video assisted thoracic surgery. That is how I had my right lower lobe removed. It is more of a laproscopic surgery. I had 2 small incisions (one on lower back and one of right side) about 1 inch and then a larger 3-4 inch incision (on side and rounding under breast) and a drain tube (under breast). I have a total of 4 scars from the surgery with the largest being the 3-4 inch one.

    I had surgery 8 weeks ago and I still have minor pain in the incision areas an if i move wrong it hurts. However, VATS is a much smaller surgery than an open type like you indicated. I did notice an increase in incision pain since I started chemo.

    Kim

    VATS
    Hi Kim
    I had a lobectomy Dec. 01/10.. I had a video conference with my surgeon 10 days ago. He said that the pain from the VATS surgery can last as long as a year for some people. He said it is nerve and rib pain where they did the surgery. In all of the four places you mentioned. This is because those spots were irritated during the surgery and is nothing to worry about. I was happy to hear that because I was a bit concerned.
  • lekkerone
    lekkerone Member Posts: 199
    Kimmiann said:

    VATS
    Sissylu,

    VATS is video assisted thoracic surgery. That is how I had my right lower lobe removed. It is more of a laproscopic surgery. I had 2 small incisions (one on lower back and one of right side) about 1 inch and then a larger 3-4 inch incision (on side and rounding under breast) and a drain tube (under breast). I have a total of 4 scars from the surgery with the largest being the 3-4 inch one.

    I had surgery 8 weeks ago and I still have minor pain in the incision areas an if i move wrong it hurts. However, VATS is a much smaller surgery than an open type like you indicated. I did notice an increase in incision pain since I started chemo.

    Kim

    VATS
    Hi Kim
    I had a lobectomy Dec. 01/10.. I had a video conference with my surgeon 10 days ago. He said that the pain from the VATS surgery can last as long as a year for some people. He said it is nerve and rib pain where they did the surgery. In all of the four places you mentioned. This is because those spots were irritated during the surgery and is nothing to worry about. I was happy to hear that because I was a bit concerned.