Did anyone ever get a surprise primary lung cancer finding?

@phylrose1taubezin, I have heard several stories about lung cancer being found on an imaging study when looking for something else, like a shoulder injury. I can imagine that your world is upended with this news even though you were prepared for difficult news. But not this news.

I think @elizabethboie might have similar experiences to share with you.

Phylrose, if I'm understanding correctly, it has not been confirmed that the findings are primary lung cancer, right? Further investigation is necessary first. A biopsy?

Did they also find breast cancer metastasis that would explain the elevated CA 27-29? Or was that an anomoly?

The report says it may reflect a primary lung neoplasm rather than metastatic disease. They advise tissue diagnosis. Ei

Hi @phylrose1taubezin

I have primary neuroendocrine lung cancer and unrelated stage 4 breast cancer. It's sooo hard when you hear maybe, possibly, etc. We hear "IT IS!" and then wait for confirmation of our worst fear. In 2008, I had a chest CT because of chronic bronchitis and it unexpectedly revealed 50 lung tumors scattered across both my lungs. Say what??? I was told the pattern was suggestive of metastatic cancer, but they said, "where is the primary cancer?" With no primary, they also guessed TB, residual nodules from some viral illness like valley fever or maybe some rare benign situation. This went on for a dozen years with 20 different specialists in different fields baffled and guessing, tumors very slowly growing, lots of respiratory symptoms of coughing, shortness of breath, etc.

They couldn't reach the largest tumor for a needle biopsy so they recommended an open chest/lung biopsy. My answer, "No, thank you. I'll take my chances. I'm putting all my chips on benign because I don't do well with surgery and can't take pain meds."

In 2013, I was diagnosed with stage 1 breast cancer, but the slowly growing lung tumors were still too small and buried for a needle biopsy. In 2020, I was diagnosed with recurrent stage 4 breast cancer and now the largest lung tumor was 2.6 cm, large enough to reach and biopsy with a needle. Turns out it is uncommon neuroendocrine (lung NETS) stage 1 cancer (1% of lung cancers) in the setting of advanced DIPNECH (extremely rare and causes the massive amount of tumors and respiratory symptoms - only a couple hundred documented cases). That's why doctors were baffled. None of them had heard of DIPNECH. Lung NETS is typically one or two tumors.

The bottom line is stage 1 lung NETS/DIPNECH is better than metastatic breast cancer in my lungs. By the way, both my cancers are considered incurable, but treatable. I'm on 2 BC meds and 1 lung NETS med indefinitely. I have plenty of side effects, but I also have a decent quality of life. I'm still enjoying life and appreciate my days more than ever. I have tons of other medical disorders as well. My body likes to dabble. It's not game over for you or me. Hang in there.

First, wait for all the test results to come in because the doctors could be off base with all their speculating.

Second, you'd have to ask your doctor to compare, but I think I'd rather have stage 1 lung cancer than metastatic breast cancer in my lung. Maybe it will even turn out to be a benign lung neoplasm.

I know waiting is sooo very stressful, but I'm glad they are considering all possibilities and not just assuming it's metastatic breast cancer in your lung. You want to be sure you receive the right treatment plan. Does that make sense? I hope they give you some concrete answers soon. Blessings and hugs, Zebra

Thank you so much for sharing your story. Your words were comforting and I wish you well. So glad I am on this support group.💕💕💕

@phylrose1taubezin, reading the radiologist reports can be alarming. They want to make sure the doctors take note of what they are seeing, but here they are also recommending additional testing. During the early stages of my diagnosis I would try to ask myself what do I really KNOW today; they see something that doesn’t look quite right, but we don’t know it’s cancer. And I would ask myself, what can I DO about it today; make an appointment, call my doc, etc. Usually there was nothing that I could act on, other than wait for appointments or biopsy results. This helped to calm my racing mind.
When was your previous chest CT? When do you speak with your oncologist next?

Yes, I had elevated C27-29, and it turned out the primary was lung cancer. I had a CT scan looking for a cause for stomach issues I was experiencing (nausea, indigestion), and there were "incidental findings" of bone lesions and lung nodules. Bone scan confirmed widespread metastatic disease, which was quite a shock, and a bone biopsy determined lung cancer was the primary. Stage IV, but I'm EGFR positive and being treated with Tagrisso, which seems to be working with few side effects.

Oncologist sending me to a thoracic surgeon, next week. The findings were on my first ct scan. Appreciate hearing from you and wish you well.💕💕

@phylrose1taubezin, I’m glad that they are getting you into your next appointment next week already. Keep us posted on what the surgeon has to say. Depending on the nodule size they may want to watch it, with another scan in a few months. Also, depending on the exact location, a biopsy may be easy or difficult.
I’m assuming that you aren’t experiencing symptoms; no lingering cough, or pressure in your chest or throat?

No symptoms. They refer to it as a mass not a nodule. Under 3 cm in size. Think that biopsy is needed
Somehow expecting the worse. Thank you for reaching out to me. 💕💕

Yes. CT scan of head/neck turned up a malignant nodule in my upper right lung. Primary site. No mets.