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

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What stage are you? And are they saying local or regional spread?

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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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They've been watching mine for 2 years---well, they WERE--and was told if this last CT was fine then we would go to yearly CTs, so that seems normal. In my case of course, it went crazy after tthe 18 month CT. Hope yours continue to stay stable!

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@ponytail

I was diagnosed with NSCLC back in February, stage II. Treatment plan was neoadjuvant chemo & immunotherapy, then a lobectomy. As mentioned, the surgery was unsuccessful due to scarring, but the Dr did take 4 lymph nodes as well as a wedge of the tumor. All came back from pathology negative for cancer. But still they're proposing radiation along with chemo again, which is how they would treat inoperable cancer...even though labs were all negative now.

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@ponytail, Cancer can certainly be sneaky, and tests and scans aren't perfect, but pathology generally doesn't lie. Are they thinking that the neoadjuvant treatments cleared up the cancer, and that's why it's not showing in the tissue and nodes that were removed? If yes, that's a good thing. The treatments did their job and did it so well that they can't find any cancer cells. That MAY not mean that there are no cancer cells somewhere else in your body. I wonder if that's why they want to stay with the plan and continue on with radiation and more chemo. I'm not saying that this is wrong for a stage II patient (I'm not a clinician, just a patient like you). Ultimately your treatment is your choice, and it's difficult to make these decisions without good information. I feel for you, as these decisions can be so complicated, and we don't have medical degrees. Relying on our doctors to guide us, includes explaining why they recommend certain treatments and procedures. Are you in a position to seek a second opinion at all?

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@julie67

They've been watching mine for 2 years---well, they WERE--and was told if this last CT was fine then we would go to yearly CTs, so that seems normal. In my case of course, it went crazy after tthe 18 month CT. Hope yours continue to stay stable!

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@julie67, thank you for sharing your experience, I feel greatly relieved to hear that if all is stable for 2 years it’s normal to wait a year for the next scan. I’m truly sorry that it didn’t go well for you, I’m such a pessimist about these things and sadly I cause myself so much undo misery, my mother always said to me that I don’t need any enemies because I’m my own worst enemy, sad but true. We just don’t get any guarantees in life and that’s the way it works, I try my hardest to live life one day at a time but sometimes it’s hard to do. I wish all the best in your journey back to good health and stability and hope to hear how you’re doing.

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@jewels85

They never did a biopsy on me straight to surgery and staged me at 3b. Now I'm told it's rare to have surgery at 3b and there's no info bc no trials have been done on this.. so I get absolutely no info from any doctors and I had surgery last October.

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Hello @jewels85, Different doctors will certainly have different plans. and sometimes plans change. I wonder if they went into surgery thinking that you would be one stage but found that you were actually 3B. Did you have other treatment after the surgery; chemo or radiation? It's been almost a year now, how well did you heal from the surgery?

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@lls8000

@ponytail, Cancer can certainly be sneaky, and tests and scans aren't perfect, but pathology generally doesn't lie. Are they thinking that the neoadjuvant treatments cleared up the cancer, and that's why it's not showing in the tissue and nodes that were removed? If yes, that's a good thing. The treatments did their job and did it so well that they can't find any cancer cells. That MAY not mean that there are no cancer cells somewhere else in your body. I wonder if that's why they want to stay with the plan and continue on with radiation and more chemo. I'm not saying that this is wrong for a stage II patient (I'm not a clinician, just a patient like you). Ultimately your treatment is your choice, and it's difficult to make these decisions without good information. I feel for you, as these decisions can be so complicated, and we don't have medical degrees. Relying on our doctors to guide us, includes explaining why they recommend certain treatments and procedures. Are you in a position to seek a second opinion at all?

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Lisa...that is exactly why the Dr's (both oncologist & radiologist)want me to accept this chemo/radiation treatment. There may be cancer cells lurking even though these biopsies didn't show any malignancy. Apparently chemo makes cancer cells more sensitive to radiation and so the combined therapy. Dr wants me to look at this as "insurance". Trusting my Dr team.

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@lls8000

Hello @jewels85, Different doctors will certainly have different plans. and sometimes plans change. I wonder if they went into surgery thinking that you would be one stage but found that you were actually 3B. Did you have other treatment after the surgery; chemo or radiation? It's been almost a year now, how well did you heal from the surgery?

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yes, they had done a lymph node biopsy the month before. Negative. So they thought Stage 1 but then showed in nodes when they took them out during lobectomy. It was done 6 weeks ago. I am not healed. Have stitches coming out of my back again today!! Told my PMP to just leave them. I have asked for pallaitive care. I can't get chemo which was the plan. I don't like the doctor because he gave me 2 side effects of chemo and that was it. I asked to switch doctors. They won't let me so nobody called back so i can't get chemo. So pallaitive care came last week and said i needed assisted living and then said she might call adult protective services on me. Wild. I give up. I must've pissed someone powerful off is all i can say. so wondering how long i live and how i die and what to do now. spinning. Nothing was done right in my case

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