I just had a negative annual CT scan 6-1/2 years post-surgery for a 3 cm right upper lobe adenocarcinoma (slow-growing BCC type, EGFR mutation). I had a lobectomy, negative nodes, and no further treatment. My doctor says the risk of another tumor elsewhere in my lungs continues to add up at 3% per year, in other words, it's now at about 20% after 6+ years. They are watching a few small, so-far completely inactive spots in some of my other lobes. Standard of care is to keep having a CT every year for the rest of my life. Seems like a lot of CTs since my family history points to living into my 90s! And the type of cancer I had was very slow growing. Any thoughts?
Fri, 05/10/2019 - 11:17
Welcome to Grace. Congratulations on your 6 1/2 year mark of negative scans. Typically the longer one goes with negative scans the more likely it is that you will stay negative. Perhaps there is something about BAC that I've not picked up on. Or your onc believes there's always been residual disease that wlll appear at some point. If there is still cancer it's so slow-growing that it could be that it is manageable and won't be the cause your mortality.
Unfortunately, people who have had lung cancer have a higher rate of a new cancer diagnosis than the general public, so CT scans are important to pick up any new or existing disease. Large studies show that yearly low dose CTs improve survival rates of people who have had lung cancer and are under a certain age (70s or 80s) depending on your health and how likely you are to get treatment for a new cancer diagnosis. No matter the radiation received (which is considered very low) you are more likely to survive longer with the yearly CTs than without them.
Having said all this, I want to check in with Dr. West to get his take on the heightened possibility of BAC returning as time passes.
I hope you stay cancer free.
All the best,
In reply to Hi z3k3, Welcome to Grace. by JanineT Forum …
Mon, 05/13/2019 - 13:11
Thank you, Janine, I appreciate the level advice. Looking forward to Dr. West's take as well. There are 5-6 very small "spots" (2-3 mm each) in my other lobes that have been completely unchanged over the 6 1/2 years so I always assumed they were just the kinds of things one sees in everyone's lungs. But this visit the doc said these were what he was paying the most attention to. Whatever caused the original cancer (his guess is 7 years of exposure to diesel smoke in Tokyo where we worked--and I jogged--in the mid-1990s), he said that the damage (plus perhaps a genetic susceptibility) is potentially still there and could give rise to a future new cancer. Sounds like yearly scans forever are not a bad idea!
Sun, 05/12/2019 - 19:49
Dr. West isn't able to access Grace but did respond to an email and asked that I relay his response,
"BAC is an unusual subtype that can occasionally be insolent enough to still eventually grow even after many years. HOWEVER, the key is to consider the pace of growth so even if a nodule grows by a millimeter after 6 or 8 years, this does NOT mean it's an emergency to manage. It just means that it may be a process that will progress at a glacial pace over decades. Even if a biopsy shows something in the spectrum of being called cancer, this does not mean that it requires any intervention. It is not uncommon for BAC to be harmed more than helped by unnecessary treatment (over-treatment) simply due to a reflex that if something grows and/or is biopsied and found to be something called cancer, it must be treated, without considering that the pace of progression may not lead to a problem for decades, if ever."
I hope this is helpful and you do well,