Why did you have a lobectomy? Were you told you'd be cured?

Posted by julie67 @julie67, Sep 3 12:45pm

ok all, now that I think on this and see how many of you have had this surgery and then went on to chemo, etc. I am thinking. Were all of you told also that it was only in your lung and you'd be cured?!! They did a biopsy of my lymph nodes the month before and they were clear, then the lung biopsy which showed cancer. I was told I would be cured since it wasn't in my lymph nodes. Otherwise I wouldn't have done this. But then of course the nodes they took out during the lobectomy showed it had spread to them. How common is this that we are told it's only in lung and can be cured? Anyone else have this same scenario w/ biopsy of nodes first thinking you'd be 'cured'??? can't stop thinking now why so many of us had a lobectomey.....thank as usual!! learning and making decisions from you guys! julie

Interested in more discussions like this? Go to the Lung Cancer Support Group.

@julie67

That is great! I had to look up chylothroax. Sounds like pleural effusion which I was just in the hospital for last week where they drew it out with a needle and catheter? What kind of scans? CT or PET. I guess CT. I am still absorbing all this. Counselor this morning said I was about ready for a nursing home!! Since i am not recovering well or functioning and then ordered a palliative care urgent referral. Just had lobectomy aug 6. thaks for the info. My lymphs were canceroous. How could they be sure that there were lymph nodes they didn't get that were cancereous? Like, for me, I forget how many they took out and 2-3 were cancerous--i forget. Just seems like my doctor would have ordered chemo even if i hadn't had those cancerous lymphs found in case they missed some. Just learning and thanks for sharing that with me!! all of this is helping me understand. (doctor gave me 2 side effects of chemo and sent me on my way)

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Yes, I had to have thorocentesis performed about every 7 to 8 days, for about a month and a half while they placed me on a very low fat diet, in an attempt to get the leak to heal on its own. At each session, they removed anywhere from 700 ml to almost 2 liters of chyle! After diet management didn't work, they went back in and performed a thoracic duct ligation to seal the leak. That worked and I've been fine since.

Time line for me last year
Jan. 31st 2023 - robot assisted radical prostatectomy for prostate adenocarcinoma
April 3rd 2023 - VATS right lower lobectomy for lung adenocarcinoma
June 22nd 2024 - thoracic duct ligation

I've had enough of the OR for a while LOL

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@julie67

hmmm. both my pulmonologist and oncologist have used that word. They were educated in foreign countries''maybe they don't understand the meaning completely.......

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Some doctors in the US do use cured. Most surgery in early stage cancer is done with curative intent. And I have met people at various patients conferences who have gone 19, 20 years and more without recurrence. At a Cancer Survivor Day celebration in 2014, I met a man who had been 25 years cancer free after having a lung removed.

One of the most amazing, long term advocates I've met is Dusty Donaldson. Her story is here:
https://lcfamerica.org/story/lung-cancer-patient-advocacy/

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I am no doctor I am just telling how it went with me. Perhaps you start the chemo treatments and if biomarkers in sync with your pathology results maybe you do a targeted therapy....My cancer had not spread so we decided to wait for the pathology report. I started Xalkori 2 months after surgery and tissue sent to Foundation One medicine.
Sleepy is my word. I have had a nodule in my right lung for 8 years that has not changed a bit so we leave it alone. This is what I mean cancer is forever. It could change at any time.

I know how awful it all is and I have read your posts and the only advice I can offer is what I did....I walked and walked and walked and then I started going to my zumba classes (back wall of room) at least 4x a week for a very long time til I got strength back. I use an elliptica (now Trelegy) once a day and albuterol rescue inhalers whenever I feel short of breath.....gives me the needed kick in the a**.

Need to add that I have bad COPD and asthma that don't help....

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@julie67

Thank you. How long was it between o cancer and small mass coming back and will he go through chemo or surgery or radiation, do you know, if the mass is cancerous? Best wishes for him!

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NSCLC lung tumor found November.
LL Lobectomy end of December.
Chemo started beginning of February.
Adrenal metastasis found end of February.
Chemo finished end of April.
Immunotherapy stated end of May.
New mid back left “focus” found beginning of August.

So adrenal metastasis found 2 months after Lobectomy.

This new “focus” found 8 months after Lobectomy, which is 3 months after 4th/final chemo, and 2 months after start of immunology (after 4th treatment).

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@whahoo

I don’t think doctors ever use the “cured” word with a cancer diagnosis. They’re too cautious.

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My thoracic surgeon, who did a lobectomy on my lower left lobe with clear nodes used the phrase " now cancer free".
Holly

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@julie67

Thank you. How long was it between o cancer and small mass coming back and will he go through chemo or surgery or radiation, do you know, if the mass is cancerous? Best wishes for him!

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Part 2. Don’t know what this new “focus area” is yet - jut tgat it lit up on PetCT. Testing to follow. If nec, oncologist thinks targeted radiation.

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@julie67

So I should not agree to any of the chemo and then KEytruda yet---they wanted to start chemo this week, lobectomy done Aug 6---until I get biomarkers back?

hmmm...that is what I was thinking: how do they know how to treat until tests are back. Guess to keep it from spreading since it's in my lymph nodes and does seem to be spreading fast ---according to scans--until they get biomarkers and then they could adjust the followup after chemo, ie. Keytruda?

What does sleepy mean? That it's not growing and stable? I had one like that for years and then in from October 23 (stable) to April 2024 it went crazy growing!

So glad you are doing well!!

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Julie, I think I answered this in one of your previous thread posts.....sleepy is my term and my nodule is still there 8 years later but hasn't changed so I get scanned every 4 months.

If mets to lymph nodes and spread and elsewhere confirmed yes, doctors want to start you on some sort of treatment now....so go with it. Keep it from spreading. If the biomarkers show your mets would be receptive to a targeted therapy then go with it. It is a long shot but worth the test.
I wish I could help you more. I did answer one of your posts that getting out and exercising, be it walks or group class helps a lot. I did spend much time right after surgery walking malls (credit cards stayed home)

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I’m curious about something that I would like to hear feedback about. I also had a lobectomy in June 2020, early detection stage 1A2, no chemo or radiation. I had another small noninvasive nodule removed seventeen months later with no follow up chemo or radiation. I’ve been going every six months for ct scans and after 2 years of no changes I was told that my next scan would be in one year. I should be happy but perhaps I’m too much of a worrier and I feel that it’s a bit long to wait, I wanted to say something but he’s not a very nice doctor to talk to and he has scared me a few times over the years about my health. I realize that I’d be wise to find a new doctor but it’s a bit complicated in Canada and I’m also in a very reputable hospital. I sincerely hope it’s just me being overly cautious but I’m kind of in a rut as to what to do.

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@frouke

I’m curious about something that I would like to hear feedback about. I also had a lobectomy in June 2020, early detection stage 1A2, no chemo or radiation. I had another small noninvasive nodule removed seventeen months later with no follow up chemo or radiation. I’ve been going every six months for ct scans and after 2 years of no changes I was told that my next scan would be in one year. I should be happy but perhaps I’m too much of a worrier and I feel that it’s a bit long to wait, I wanted to say something but he’s not a very nice doctor to talk to and he has scared me a few times over the years about my health. I realize that I’d be wise to find a new doctor but it’s a bit complicated in Canada and I’m also in a very reputable hospital. I sincerely hope it’s just me being overly cautious but I’m kind of in a rut as to what to do.

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I had a LU lobectomy in November 2022, stage 1A. After my CT scan in November, I will go to annual screening. I’m looking at this as progress. Sure, something could pop up but we watched my original lesion for about a year before doing a biopsy. I believe they are pretty slow growing and a year doesn’t worry me.

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Thank you for responding, I must confess that I have serious trust issues that get in the way but I also had problems with the doctor who did my surgery, he made my test results sound so bad when in fact they weren’t. He may be a good surgeon but that’s all he is.

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