My journey to here...

Hi, my name is Anita. I found out I had lung NETs in March this year. I was sent for a CT scan to check out some naughty little kidney stones, and the middle right lobe had a neoplasm that started this path.

I've had a traditional PET, a Dotatate PET, and a dedicated chest only CT. I've had 4 separate biopsies; the first one of upper left lung node, traditional done in a CT tube, the second was thyroid with only local anesthesia, and the last 2 via bronchoscopy. Both lung nodes tested positive for NETs. The rogue lymph node that showed up "suspicious" on the PET scans, as well as the thyroid nodule were both benign. I have no other primary source. I do have 3 more nodes-one on each lobe, that are suspected to be NETs but are too small to worry about right now, they'll just be followed.

I've read through some of the posts and I see some differences. Nobody has told me anything about a K scale of any sort. Instead I have a staging: 2A. cT1a, cN1, cMO. The middle one is wrong, because the lymph node biopsy turned out benign. My nodes/tumors showed up much better on the CT than the PET.

I have no symptoms. I would have never known it was there if I hadn't needed the CT for kidney stones. I'm a little tired, that's it. My lungs ache sometimes but I have no shortness of breath and I'm still doing whatever I feel like doing daily. Vacations, shopping, keeping grandkids, etc. My labwork is all well within normal range.

I went through a fiducial placement for the right middle lobe a few weeks ago. It landed me in the hospital with a pneumothorax. I recovered pretty quick and went in a few days later for the mapping only to discover that the fiducials had both moved. Then I saw the surgeon a week later... it might be useful to say that the tumor board recommended from the start that the left upper (1.1 cm) be removed and the right middle (1 cm) be treated with cyber knife radiation. The surgeon said the opposite of that would be smarter and all the team is now on board. Next Thursday I will have my right middle lobe removed. This will allow them to send the whole thing to pathology so we have answers. (There is some debate between tumor board members about whether it really is NETs or not and I'd like to just find out once and for all.) Also, the right side node is only 8 mm from my heart and would be harder to irradiate without hitting my heart. After I've had time to heal, I will go back for fiducial placement again, but on the left side this time. Wait a week, do the mapping, hope and pray they've stayed put, wait another week and get 5 days of radiation. It's been a really, really slow process.

My oncologist has talked to me about the monthly injection but says it's only necessary if the 3 small nodules we are watching start to grow. I've read all I can find. I have a local friend at church and a teacher from high school's husband, both with NETs. That's helped, people to talk to about what to expect.

In two places in my medical portal notes, my cancer is referred to as non small cell. I asked (twice) and they told me it's a typo. That's a bit disconcerting. Anyway, I'm happy to find you. If you have questions, just ask. If you have opinions, share. I'm hard to offend and I know how to make up my own mind from the facts presented/not easily swayed. But I also love having lots of info to sort through. I'm weird like that. 🙂