Living with lung cancer - Introduce yourself & come say hi

Oh, I thank you for you response, it is incredibly helpful to hear others' experiences. My 3 largest nodules doubled in the past 7 years and doctor says they are not solid. but mostly ground glass and very low grade. He is thinking that the worst that could happen would be a doubling again over the next 7 years but they could also slow. Meantime, we will be doing CT scans every 6-12 months. It is the new way of things, I realize, and I am glad surgeons are more hesitant to chop up parts of women's bodies than they had ben in the past but it is weird to 'live with' cancer...please tell me about your surgery, was it minimally invasive, did they need to remove an entire lobe? ..one reason to do an earlier surgery - for me - is surgeon says i would lose just 1% lung function on two lobes and 3% on a third lobe...how has your recovery been? how is your breathing? Are you relieved?

suraleah

Seven months ago, I had a 15mm tumor removed that was found to be malignant
(Adenocarcinoma). The left lower
Lobe was removed as well.
Here’s my feedback…
For a variety of reasons that were unrelated to the tumor, my instinct was get it out, get it out. I didn’t seek a second opinion or a consult with an oncologist. If I was faced with that decision today, I would take the time to do both. 15mm is not large and I had watched it grow from 6mm over 4+ years. So I could have easily taken the time. Based on your surgeon’s feedback it seems you do too. More information is always better than less. There are times to roll the dice and make a call asap. But I encourage you to be deliberate and fully informed.

thank you so much for your response. My call with my doctor was helpful, probably as reassuring as it can get at this point. Because the nodules are
small - well, the larger ones are 9mm, 11mm, 13mm - at least to him, they are small, and especially because that are Not solid but primarily ground glass and also low grade, he does not see the point in surgery now (he did not say all of this my first visit). And because they doubled in size (just these, some disappeared) since the last CT scan 7 years ago, he predicts they may continue on that trajectory or even stay the same; my next CT scan in 5 months should help us see what is happening,,.. I questioned targeted radiation and he is happy to refer me to a radiation oncologist but believes that doctor would not want to do it, considering the side effects of radiation and potential to damage surrounding tissue not worth it....I contacted Mayo for a 2nd opinion but they are not doing a 1st visit or consult via telehealth, only in person. i believe MDAnderson will look at the images and notes and radiology reports and give an opinion, so i will look into that next week. Someone taking a second look would help me....the doctor I am seeing is at NW Memorial hospital in Chicago, is part of a Nodule Clinic with a full team of oncologists, surgeons, radiologist, pulmonologists who meet together to discuss before my first visit. ...I am just wondering if someone else would have a different opinion, not just wait and see. They might all want to wait for this next CT scan.
suraleah

Well I’ve been overconfident it seems that with clear margins and modes and nothing on the 6 month CT, I’m good.

@pb50, Pam, I'm glad that you are asking for an oncology consult. You're right, surgeons are most apt to do surgery. Having someone that can help direct doctors from different specialties and help us better understand the options available can only help all of us. Oncology science is advancing, and it takes an oncologist to keep up on the latest treatments and studies.

Hi @sura, Welcome to Mayo Connect. You are not along in this. There are many people here I know our first instinct with cancer can be, "get it out", but it can help to take a pause and evaluate what options are available. I agree with your first instinct, that surgery is a major decision and can lead to ongoing pain. But it is also sometimes necessary if a cure is possible! I'm glad you are getting a second opinion, that's a great idea in these cases. Some larger intuitions will also have a tumor-board where experts from many fields (surgery, pathology, oncology, radiation oncology) will come together to provide input into treatment recommendations.
How did the call with the surgeon go? Are you comfortable with a 6 month scan schedule? Did you possibly discuss a 3 month scan schedule, just for this first time?

Hi @thieschafer, I have an ALK mutation, and have been taking a first-line targeted therapy for 43 months now, but who's counting. That's longer than the median for this particular drug, so I'm appreciative of the science behind these drugs. Some of us get lucky and go beyond expectations, I'm hoping that you are one of those. Learning to accept that there are things that we just can't control can help, but it's not easy.
I'm hoping that you do well on the Tabrecta, with minimal side-effects. Did your doctors test your tissue from your original surgery for biomarkers, MET?

Good idea.

Mine was staged pT1c pN0

I just messaged my pulmonologist that I want an oncologist consult.

It was an adenocarcinoma stage 1A3.