Lung nodule could be slow growing carcinoid: Watch and wait is scary

The biopsy on it was completed 2 years ago before my hysterectomy, the Dr. who did my hysterectomy told me she could take it out at same time as hysterectomy but was veto'd by other Dr.'s at that time. Then they required me to do 6 chemo/radiation re: hysterectomy, spoke with a surgeon at that time who retired end of year '23. After asking me a few questions, stated let's wait till you are past the chemo/radiation for us to treat it since so small, when your feeling better. Neither, of these Dr.'s mentioned the complete lower lobe would be taken out. I was just in complete shock when received the follow-up tele-med call being told that my lower lobe was going to be taken out. I have done alot of reading the last few days and watched many of u-tube videos on lung nodules. We do not have any surgeon's close in area, my son does not me contacting anyone far away. He will be going with me to my next appt. 6/14, if I do not get a response back prior, regarding not taking the complete lobe. I am calmer at least and it showed your other lobes fill in the area or should I say increase in size if would be removed. I always knew the carcinoid would be taken out just not the complete lobe.

What is the difference between a benign or a malignant carcinoid. She stated it is malignant we did a biopsy, the biopsy is why they knew it was carcinoid. Does it tell where benign or malignant?

Yes, is how I felt 2.3 is small to remove a complete lobe, no one over last 2 years ever stated removing the complete lower lobe. Just so shocking when she stated it today. Am somewhat calmer than earlier this morning.

I live in Southern Oregon, so not close to Mayo though grew up in S. Dak., however, are Med. Centers are in contact with Mayo. I do have nodules in upper left and in right lungs just mm to small to check on part of reason why not removing a lower left lobe bothers me.

JULY 22 I was diagnosed with uterine cancer adenocarcinoma and had a hysterectomy, no node or tube involvement, did 3 chemo, 5 weeks external rad, 2 brachy, 3 more chemo, have neuropathy feet and hands still, they ran cat scan at that time and found the nodule in my left lung so biopsied it to make sure wasn't adenocarcinoma and came back as carcinoid. 7/7/22 measured 2.3 X 1.9 on that scan, 9/26/22 next scan 2.5 X 1.9 cm, 4/24/23 2.3 X 1.8 cm, 7/24/23 noted as 2.1 cm states unchanged, 4/29/24 states is now 2.4 X 2.2 cm ??? I sometimes feel size changes by who reads or documents it is close to my heart - See the surgeon last wednesday, and he says we want it out. I was setup with a tele-med appt today, A NP called and started with your lower left lobe is going to be removed. I flipped out because never had anyone mentioned before my lower left lobe would be taken out. I stated so you remove for something less that an inch the lower left lobe. I asked how large is your lower left lobe that you lose the complete lobe for something not even an inch diameter, and was told everyone's is different size. So, she is suppose to be contacting the DR. and getting back to me. She told me your able to breath well it shouldn't be a problem. I cannot understand why the total lobe is removed because I can breath ok.

Hi @aclanton @terradean
My largest 2.6 cm tumor was destroyed with microwave ablation. Not a fun 2 hour procedure, but I'd rather have that than open surgery. I did have a partially collapsed lung afterwards, but that healed up. That was 3 years ago and they still believe the tumor was successfully destroyed. It seems the standard is to remove the lung lobe that contains the tumor and the few people I've read about here and one I talked to from another site all seemed to do well and not have any lasting breathing effects. Yes, I find that surprising too.

The reason they didn't remove a lobe with me is because I have over 50 tumors scattered throughout both lungs so they can't remove all the lobes. I have obstructed airways. The tumors are all growing very slowly, mostly a little under and over 1 cm. I was told if any others take off from the pack or reach 2 cm, I will likely have microwave ablation again to destroy them. He expects that will happen. At that size, they are more likely to spread outside the lungs. After all these years, my lung NETs is still considered stage 1 although my DIPNECH is considered advanced. The tumors were first spotted on a CT scan in 2008, but based on respiratory symptoms, I've had them for 30+ years so when you consider that, it's pretty amazing that I'm doing so well. The Ki-67 is only 2% (percentage of cells dividing). That's really low! My breast cancer is Ki-67 50% which is really high. The octreotide injections for the past three years have managed the respiratory symptoms with a huge improvement in quality of life. Before octreotide, it was like having bronchitis for 30 years straight. It annoyed me and everyone else. If you have multiple nodules/tumors then DIPNECH is also a diagnosis to consider. That's very rare, but also underdiagnosed. I have both DIPNECH and lung NETs (typical carcinoids).

I do know a lady who had one typical carcinoid, about 9 cm I believe, and had the lobe removed. She was about 70 at the time and ten years later she was still just having an annual CT scan to monitor with no other treatment and no impact on her breathing. Pretty amazing. I would be nervous about having a lung lobe removed too so I understand your concern, but I'm encouraged by all the success stories! As Theresa suggested, a second opinion is always a good idea. Please keep us posted.

Hi, my nodule is also 2.3 cm but is in the upper left lung. Biopsy is in a few weeks to confirm. However, the thoracic surgeon at Mayo told me that the location and the size of the nodule determines how it is resected and to what degree. Fortunately, the surgeon says 2.3 cm is on the smaller side, but, unfortunately, they still have to take out part of a lung. Hope this helps a little…

Hello @terradean,

I can understand your reluctance to have major surgery. Before surgery, it is always important to get a second opinion. Have you considered this option?

A consultation with a NET specialist would be best. Mayo Clinic has NET specialists at all three of their locations (you will find appointment information at this link http://mayocl.in/1mtmR63). If an appointment at Mayo is not possible, I would seek an opinion from another NET specialist (here is a link to NET specialists throughout the U.S. https://www.carcinoid.org/for-patients/treatment/find-a-doctor/).

Was there a scan which indicated a reason for this surgery?

Hello- I have a carcinoid nodule in my lower left lobe it measures 2.3 cm by less than 2 cm. It has been there for 2 years hasn't changed much in the 2 years. It was biopsied 2 years ago to make sure it wasn't adenocarcinoma and was told it was carcinoid. They decided that I needed to have surgery to remove it because it did change in size some. Today I had a call from a PA who told me the complete lower lobe would be taken. The Dr. never mentioned removing the whole lower lobe when I was there. and, never have I ever been told the complete lobe would be removed by the Dr. who did my hysterectomy who originally mentioned it needed to be removed. I have 1 other nodule in my upper left lung, to small mm mm to small to biopsy and a few other in my right lung mm to small to biopsy, is it common to remove a complete lower lobe for a 2.3 cm by 2 cm nodule. How large is your lower left lobe. I am not very interested in losing my ability to breath as I can now. HELP

Yes, I’m new to this group. No symptoms other than the occasional wheeze. I’d been diagnosed with asthma and thought that was the culprit. In fact, the ct angiogram was to investigate a blood vessel issue, and the nodule was found by accident.