Anybody Here Have A Lobectomy? - Lung Cancer Support

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Anybody Here Have A Lobectomy?

Kmkat profile image
47 Replies

I am a basket case right now. I went for my surgery consult (after many tests) and it is suggested that my upper left lobe be removed, with a 10% chance that he might have to remove my whole left lung. Has anyone had this done?

A quick background; two years ago I was diagnosed with stage 2 NSCLC on my upper left lobe. It was the size of a golf ball, due to the location they could not operate. I did many rounds of chemo and radiation. I was NED up until 5 months ago. The cancer is back and in the same spot, I can not have anymore radiation to that area and all three of my doctors agree that surgery is my best option.

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Kmkat
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47 Replies
Lynnelw profile image
Lynnelw

Yes, in 2004 I had a lobectomy of my lower and middle right lobes, with just a small stump of the top right lobe remaining. I had the surgery then followed with chemo and radiation. Unsure of my actual staging, they kept changing it but I believe it ended up somewhere in stage 3 due to involvement of lymph nodes in the hilar area. At any rate, to be truthful, it hurt like hell during recovery, after all it's major surgery to your torso, but for me it certainly was worth it, since I'm still around coming up on 13 years later. Best wishes as you go through this, feel free to ask me any other questions you might have.

Crabople profile image
Crabople in reply to Lynnelw

That is fantastic news, congrats! How old were you when you had your lobectomy? I was diagnosed 2 years ago and had a lobectomy about a year and half ago. Hoping to have the same longevity as you've been blessed with.

Lovey1000 profile image
Lovey1000 in reply to Crabople

Me too

Lovey1000 profile image
Lovey1000 in reply to Lynnelw

OMG you just told me story and a survivor you are, I had 3 rounds of Cisplatin and Altima then had my right middle and upper lobes removed to get rid of a 5 cm mass and while my surgeon was removing mass she found enlarged lymph nodes 4 involved total and she removed all of them and I’m NED as well and now I’m doing 3 more rounds and the 6 weeks of radiation. Chemo makes me tired and I had first round on the 9th Jan so today I slept all day but I do know what relieved all this side effects are water and I mean 80 ounces a day

SAdams profile image
SAdams

In February I had my right Lower and middle lobe as well as 18 lymph nodes removed. Diagnosis was Stage 3A. Recovery from surgery went well. I was in ICU for three days but I also had the complication of atrial fibrillation which they said is common when the doctors do thoracic surgery. The worst part was the Drainage tubes and dragging them around when I had to go to the restroom. As far as the surgery they gave me the pain meds in ICU which helped me sleep. Once I was on the regular floor I did not use the pain meds nor did I use them when I went home. I was back to work in two weeks then they started radiation and chemo. Just had my first three month follow up since all treatment ended and there is no sign of cancer.

Biggest suggestion would be to be comfortable and confident in your surgeon. Best wishes.

lakesregion profile image
lakesregion

Had a lobe removed in 2010 right lower icu collapsed lung came home and back to work next day. a recurrence then chemo, radiation. SBRT march this year so far NED. Stopped working last year. take time to smell the roses. Pray like hell. Good luck.

Mcprough profile image
Mcprough

I had a right upper lobe to my 30 years ago. It takes time to heal from a major surgery. But, my cancer stayed away for 30 years! The anticipation and fear far outweighs the surgery. The un known was terrible for me. I had a wedge resection also on my right lower lobe in 2013. Painful. Yes, tolerable...yes..it to me 6 weeks to recuperate. I still have twinges of pain. Not bad. But, hey, I'm alive and breathing....yes, I have SOB but not when I'm sitting, walking.

Unfortunately, I have Stage 4 now...on a trial at DUKE that is working. I'm 71 years old.

lindarahtes profile image
lindarahtes

Hi, on March 15, 2016 I had a tumor the size of a baseball in my lower right lung. Dr. Howe was my surgeon and Presbyterian Hospital in Charlotte, NC was where I was. He removed the entire lower right lung. I'm not going to sugar coat it, it is a hard surgery and a long recovery but it was and still is worth it. I'm 70 so my recovery time is a little longer and harder than say a 50 year old. I hope this helps a little.

Kmkat profile image
Kmkat

Thank you everyone for responding to me this is helping me get my mind straight and not to be so adraid knowing that there is hope for me.

bellaella profile image
bellaella

hi, I had a lobectomy 10 years ago at memorial sloan kettering. they did the removal with a robot. incision was about 4 inches long on my right side. my bra covers the scar which you can barely see. surgery was long but recovery was quick. within 4 weeks I was back to normal.. no pain, I was so surprised. so don't worry. chemo and radiation is much worse.. I have benn cancer free for nine years. had 4 rounds of chemo after the lobectomy. good luck and please don't worry..hopefully you will have the robotic surgery. my sister-in-law had it another way and that was not pleasant.

Ruthie1950 profile image
Ruthie1950

Kmkat,

I'm sorry to hear you're going through this again. I have never had that procedure done but you might seek a second opinion to put your mind at ease.

RickNH profile image
RickNH

Hi, I'm very sorry you are going through this sordid business, but I think you need to get it taken care of. In 2009 I had a Stage 1A lobectomy of my upper right lobe. No, I did not lose the whole lung, but I was given a new lease on life. If you have to lose your left lung with a good chance you can continue on as a survivor, I agree with your doctors. After spending five days in the hospital, I went home for recuperation. After 6-weeks, I was riding my bike again. The surgery was worth it.

You need to know what the chances are that they can get everything and be sure it hasn't spread (metastasized) to other parts of your body. With stage 2, that shouldn't be happening.

Full disclosure here; After 5-years, at my 5-year CT scan, followed by a PET scan, I was diagnosed with Stage 4 NSCLC and have been taking an oral targeted therapy for 2 years now. The good news is that I still have a life that I am able to participate at an acceptable level and I'm happy. You can too!

Have you ever heard of the LiveSTRONG program at the YMCA? I have been involved with the program, established for any and all cancer survivors, first as a participant and now as a mentor. The program provides you with exercise instruction from the bottom up with hope that you will continue on when the 12-week session is completed.

Kmkat profile image
Kmkat in reply to RickNH

So after five years after your upper lobe removed your cancer came back was it in the same lung? I will check my local YMCA and see if they have a program like that here. Thank you for the information

RickNH profile image
RickNH in reply to Kmkat

Yes, it was the same lung and inoperable due to Stage 4, but I don't think of it as a death sentence. I have an opportunity to live. Keep the faith. The LiveStrong program is well worth the time and effort. I am in Nashua, NH.

906-9269 profile image
906-9269

I had my surgery in 2014. It was no picnic, lower left lobe. A year plus later some nodes appeared which led to 35 rounds of radiation and 8 rounds of chemo. After 6 months of clear scans, I'm fighting my way back to some semblance of a normalized existence. In spite of the challenges brought on by medical intervention, I feel it's absence would have found me dead. Accordingly, I am more than just a little grateful. All good thoughts are headed your way. Stay strong and consider your luck in having a viable path to recovery.

Kmkat profile image
Kmkat in reply to 906-9269

Thank you my doctor did tell me he was going to remove some lymph nodes why he was in there.

Steph60 profile image
Steph60

I was 53 years old when I had my upper right lobe removed. It was determined that I was at stage 1B; then had 4 rounds of chemo since the tumor was next to the lining. It is almost been 3 years since my surgery, and so far I continue to be cancer free. My dr's kept tell me I had a positive attitude which is why my recovery went so well. Keep a positive attitude and realize we are all thinking of you and sending you positive thoughts.

Kmkat profile image
Kmkat in reply to Steph60

I will be 53 soon. And I'm hoping to live way into my late 80s LOL. And with all of these positive responses is making me much braver to deal with this so thank you, thank you everyone

Kmkat profile image
Kmkat

Thank you. I have change my diet completely in the past two years. but I will get this book!

Judylmac profile image
Judylmac

About 8 years ago I had to have the lower portion of my left lung removed. I had three chemo treatments to reduce the tumor size, then had the surgery. I had the type of surgery where a small 3-4 inch incision was made under my left arm and a smaller incision done on my left back. I was released from the hospital on the fourth morning. My results were stunning, concerning the small amount of recovery time as opposed to the larger surgery normally required. The surgery was done in late August and by Christmas I was much better and finished with my rehab. Hope this info helps you. Good luck and God bless you!

Kmkat profile image
Kmkat in reply to Judylmac

Yes this helps me very much thank you. He told me he would do about a 4 inch iIncisionunderneath my left armpit. After hearing a lot of positive feedback I think I am going to be OK.

Lovey1000 profile image
Lovey1000 in reply to Judylmac

Did you require chemo after the surgery??

@Kamat yes I had a lobectomy the upper lobe on left side as soon as my side healed from the tubing. I started chemo on my birthday they gave me taxal I had a very bad reaction come to find out I was allergic. had to come back the next day and he gave me taxetere that was ok. But I had a really nice birthday. Try not to be afraid you have seventeen replies eighteen now. So we are all here for you;we know what your going thru and your little guardian angel is there by your side and she will stay beside you,she will always be there. Jo

Kmkat profile image
Kmkat in reply to

Thank you for your response all this positive feedback is making my mind in a better state.

Peyz33 profile image
Peyz33

Don't stress it - are they doing VATS surgery? I'm 10 years cancer free with a full right lung lobectomy. Good luck.

Kmkat profile image
Kmkat in reply to Peyz33

I believe it is VATS. 10 years whoop whoop! your response makes me very very hopeful.

Guy59 profile image
Guy59

HI, my left lung bottom half was removed 6 weeks ago, I had open surgery spent 14 days in hospital, starting 3 months of Chemotherapy in 3 weeks time as a mop up procedure, it has not been easy especially my stay in hospital, I am making good recovery progress at home .

Good luck to you

FtB_Peggy profile image
FtB_Peggy

Kmkat,

Wow, ask for help in this crowd and look what you get!!! Thank you, everyone! I am sending you all my warmest thoughts and hopes for healing and peace of mind. You are such fine souls.

Kmkat profile image
Kmkat in reply to FtB_Peggy

I know everybody's responses is making this so much easier on me

@FtB_Peggy Thank you from all of us. If any one has a warm and caring heart it is you. Jo

Kmkat profile image
Kmkat

Well the surgery did not go well. They were unable to remove upper or lower part of my lung due to the location of the tumor. I am left very sore and in disbelief. I feel they should've known this before they went in but I do understand they were working on a radiated lung and could not really see until they got inside. I go next week to see what Plan B is going to be.

Debby1125 profile image
Debby1125 in reply to Kmkat

Mine was not operable because of position so i had 38 radiation treatments and 8 chemo then went back to surgeon and after scan he decided to do surgery. Took upper and middle right lobes. It will be 1 year ago tomorrow. I hope things work out. Cancer is a nasty thing.

FtB_Peggy profile image
FtB_Peggy

Kmkat, I am so sorry, that would be hard to expect one thing and then wake up to another... When is the appointment next week? (So I know when to send good thoughts your way). Don't give up hope - see what they have to say. Waiting is awful, I know, but maybe this time is a gift in disguise; time in between all the tests and treatments, time to process.

Please let us know what the plan B is when you find out, we'll be waiting to hear.

Kmkat profile image
Kmkat in reply to FtB_Peggy

Thank you for your kind words I am really upset and confused about the surgery. But I go on Monday and I'll find out more what is going on and what Plan B is going to be.

FtB_Peggy profile image
FtB_Peggy

Kmkat,

Of course you are, how could you not be, everything took a turn for you that was unexpected. But you reached out to us, and we will all be holding you close and thank you for letting us know when you will hear the next steps, thank you for sharing that - now we know when to focus on you and what is happening in that room with you and your doctor.

Please know you are not alone. I am glad your appointment is Monday and not next Friday or some time further out. We know this is such a tough time, the waiting, the wondering...please let us know how things go (but if you don't, that is okay too. Whatever feels right to you is, well, right.) Just know we are thinking about you.

You have come this far, with great courage and the human emotion that accompanies that...and you should know that hope is still waiting to walk with you. Hope is a light that carries us from one moment to another even when it seems impossible to look ahead. Grab onto that.

Okay, this is too lengthy, I apologize. I just truly want to say enjoy now, as you wait for then. Now is a gift.

Sincere hugs,

Peggy

Memaw0100 profile image
Memaw0100

I had my upper left lobe removed almost 3 years ago. You have to take it very slow at first. I got out if breath very easy. That quickly got better. I got up walking within couple hours. My biggest issue was with the chest tubes. They took one out the next day, but came home with one. They were very uncomfortable, but got much better as soon as it was removed. Forcing myself to be as active as possible really made a difference

tingle55 profile image
tingle55 in reply to Memaw0100

I had my left upper lobe removed removed November 29, 2017 and still SOB with activity. Do you have any SOB? They told me I would be back to normal with activities but feel this is going to be my new norm. I had my vocal cords checked out and they were ok. Most of my SOB comes from my upper airway. I get some upper airway wheezing also. Thanks

Keneki123 profile image
Keneki123

I know what your saying : Basket case . Im due to have a lobctomy in 6 days and Im terrified . I asked the doctors of a trip I had planned awhile ago with my sister and they all said they think ""THINK"" I will be able to make it for the trip is six weeks following surgery > I have so so many fears

Lovey1000 profile image
Lovey1000 in reply to Keneki123

Read my post, got home 3 days after surgery and I had 2/3 of my right lung removed and I have minimal pain and taking 600 Motrin every 6 hours and a nerve ending pain relief as well non narcotic and I got home Monday and had surgery Friday before and this weekend I'm going to drive 2 hours a ay to visit a friend!!!! You got this😁

Lovey1000 profile image
Lovey1000

I got home yesterday, removed 5cm tumor upper right lobe as well as middle right lobe, I did chemo 3 rounds to shrink from 7cm, I started with vats and ended up with a open surgery and with a 8 inch scar running up my back....drainage tube was in 3 days and once it was removed I was up and moving, so I'm sitting here on Motrin feeling very releived that the cancer is gone. Lymph nodes were removed and pathology tested negative cancer...if any live cells left I guess ill find out on my next appointment then I will have to do 2 more rounds of chemo ughhhhh, good news we all are being treated for the worst nightmare anyone could possible have and we can thank god we all have this fabulous support system, prayers for everyone.

FtB_Peggy profile image
FtB_Peggy in reply to Lovey1000

Hi Lovey1000!

Thank you for sharing part of your story. Amazing that you are getting by with Motrin! So happy that the surgery was a success. Will keep my fingers crossed for your next appointment, please let us know how that goes. Keep healing:)

Lovey1000 profile image
Lovey1000 in reply to FtB_Peggy

Thanks, I'm sitting here with 2/3rds of my right lung gonzo and very minimal paid and I sleep on oxygen.

FtB_Peggy profile image
FtB_Peggy in reply to Lovey1000

Bless your heart! Do you sleep in a recliner? I hear a lot of folks here say that they find that helpful.

Lovey1000 profile image
Lovey1000 in reply to FtB_Peggy

No recliner, I sleep as usual on my tummy or on the side where is opposite from incision

Lovey1000 profile image
Lovey1000

I just got home from bingo, a little sore surrounding incision, took 200mg IBU and had some dinner and I feel fab

FtB_Peggy profile image
FtB_Peggy in reply to Lovey1000

Look at you, you wild woman!! Did you win a prize???

120477 profile image
120477

I had a lower left lobe removed in May of 2014.. Recovery was not bad at all. Cat scan in February of 2017 showed a new tumor in the upper lobe. Surgery in May, this recovery was a little worse, not painful but depressed realizing that it had come back. Feeling great now and last two scans were clear. But I do live in constant fear of another occurrence.Good luck to all fighting this monster .

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