Living with lung cancer - Introduce yourself & come say hi

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?

@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.

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

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

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.

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

I fully agree with the advice to be well informed on all options for a specific issue.
That means understanding that given any nodule under consideration, there are going to be pros and cons to various treatment options.
Surgery option depends on the location of the nodule. It does get rid of the cancer, and it allows tumor analysis. I have multifocal lung cancer and I chose to have surgery twice and do not regret it. I had video assisted thoracic surgery so that is much easier than open chest.
I have also had a round of SBRT (3 sittings) on one nodule. Quick and painless but within 6 weeks I developed radiation induced pneumonitis (one of the risks) and have been on Prednisone for 6+weeks and now tapering off. While my last pulmonary function test was an improvement over the earlier one done at time of full-blown breathing problem - it is not back to where it was 7 months ago.
Always look for experienced specialists, preferably with some kind of "Tumor Board" where different specialists discuss your case and make recommendations, so you are not dependent on one doctor.

Well the last sentence you wrote is just flat wrong, wrong, wrong. Surgeons’ noses should grow when they say that. I will say when I am sitting calmly in a chair, I test almost 😅 Normal on pulmonary function. But I am absolutely short of breath easily - lifting my mattress corner to change sheets, bending over to dust baseboards, walking with virtually any incline, lifting anything, sweeping - all will have me gasping and my heart rate above 120. And I use that little device they gave me to use. Again, sitting calmly I’m golden. And I still have rib and diaphragm pain when I try to take a deep breath.

Now to be fair I am 73 and a tad overweight. But I was old and chubby before the surgery too. 🙂

Not trying to scare you. I’m managing and I’m sure you will too. I’m just trying to share my reality. I don’t think I’m alone in that experience. It shouldn’t prevent you from surgery if that’s the recommendation at some point. But just go in with eyes wide open.

I am finally recognizing that there are indeed pros and cons to any course of action. I am fortunate to be living in Chicago were NW Hospital has opened a Lung Nodule Clinic with a team of specialists: pulmologists, thoracic surgeons, radiologists, oncologist. So they consult with each other before setting out options. In my situation the thinking is that the nodules cannot yet be confirmed as malignant, grow very slowly, are not solid but ground glass, and slow-growing. Surgery or radiation at this point is not advised, the side effects of either/both not being worth it at this point. Of course if I want surgery they will do so. My doctor is fine to refer me to a radiology oncologist to see what they recommend and that may be my next step. Removal of the existing 3 larger nodules would require 2 surgeries as they sit on both the left and right lung and in different lobes. I have wrapped my mind around eventually needing surgery but will wait until the next CT scan results, in five months. .....You have had quite a lengthy process attending to your nodules; like your situation, my doctors are confident the removal will be entirely successful (whether malignant or benign). My doctor had just been informing me about the possible side effects of radiation & apparently you have experienced a major one. It is quite a journey. ...I am sure my age is factoring into the recommendations -currently 77 (high-energy, still working and active in life). If the nodules continue with their slow growth I could be 87-90 by the time surgery would be a necessity. I think they think I might not care at that age but I imagine I might still! and who wants surgery at 87 or 90 (versus in the next few years). Anyway, i am appreciative of your offering your experience as it provides reassurance that one can do all this and helps me feel less alone. It can be so confusing and in some ways is sort of a gamble. But then again, really so is life.
s

You mention multiple nodules needing treatment. That sounds like multifocal adenocarcinoma (multifocal lung cancer). Have they mentioned that to you? The nodules start out as "groundglass" on the CT scan and then eventually change to part solid and solid. They are considered to be primary independent cancers, but some may be metastasis of others - they can't tell on scan. This type of lung cancer is being studied for best way to treat, whether to be aggressive or not, etc. There are a few people on Connect with this cancer (Merry started thread).
I was diagnosed at age 80, and am now 82 and active. More than age, it is your overall health that matters. The idea is not to let the little suckers go outside the lung. And the goal is to preserve lung function, so treatment options are designed to provide you with the highest quality of life for as long as possible.
You don't mention a PET scan. Have you done one? That goes a long way in telling them what is going on with certain nodules. CT scan shows growth in size, but PET shows intensity indicative of cancer.