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

@jball77
You might consider messaging your surgeon through the patient portal to see if breathing exercises would be helpful prior to surgery.

We have other members with lung NETs like @collielady @tonyhasumners @emilyfaith @pattirushing @diana5 @kristin3 @californiazebra @rogo @melmangen @coco1 and many others. I hope that they will join this discussion to discuss their surgical experiences.

What other questions do you have regarding the upcoming surgery?

Has anyone with Lung NETS suffer from pain through to back under shoulder blades? Can only sit up for short time, causing aching pain. Fatigue not normal tired, exhaustion!!! My lung NET are not large in size, but the base in both lungs have baby nodules, only two lite up in 68 GE,, scan. Pain in the back area, very unpleasant. I do not know if it is part of NET. Syndrome causing the inside lung? Is it causing this pain. I see a NET specialist, Dana Farber , 5/15.

Walking and strength training are 2 great actions before and after surgery. After surgery, it’s important to get up and move and do the breathing exercises. Use a pillow to splint your Chest and deep breathe in the hospital and at home. You got this!!

Yes, it is scary. Waiting, making the decision. I have Nets. in both of my lungs. Very small, but did have small growth. I saw a Thoracic Surgeon who said mine our small, but one looks like it might have growth and he issued blood test. To see if there is any hormonal activity since l was suffering with Nets syndrome intensely. He said 6 month to do the CAT scan, if it shows any growth he would remove the one lobe that has baby nodules too.
Oncologist will follow, chemo. does not work on these nodules, radiation i.e. injection to control the Net. Syndrome and to help get my immune system boosted.
I am comfortable with these three, but will see Surgeon at Dana|Mass. General for his opinion on my nodules. My UMASS. pulmonologist had to get radiologist to correct two elements of a lymph node under my arm was not notes lite uptake, along with another nodule in my right upper lung ,small. I told l was mad l had to have a Fellow Doctor and he discovered it. So, second opinion l will go 5/15 Boston.
I was advised walking great, no lifting weights. Doing Yoga relaxes your breathing.

I had a very scary Saturday night, with the pain under my shoulder blade radiating through to my chest. I decided to go to ER. a spasm around my back to the front under my ribs. It felt like my liver was in a knot.
After a 3 hour wait, l was examined and as the oncologists Fellow examined that shoulder blade and felt a small bump under the scapelar. I was scheduled for X-Ray on Monday and bloodwork. Saturday they did a xray, then did a CAT. Scan, and there is a lump, maybe lipoma, or my friend nodule. I will be seeing a surgeon Monday, just a biopsy. But this aching under both my shoulder blades have been with me over a year, l always blamed it on my fibromyalgia. Heating pad is helping!

i’ve done “watch and wait” for numerous “growth” conditions on internal organs. i’ve been fortunate that my lung nodules have stayed the same ….but not other growths. Was just referred to a neurosurgeon for growing brain meningoma. i believe it’s important to have very good doctors, excellent quality imaging and to follow up with sub specialists when referred /…..and to get second and third opinions if necessary at top institutions. Virtual consults/record reviews have made all of this more cost efficient and doable. All the best

wishing you all the best

Hi. I am in a similar situation but am scheduled for a biopsy in a few weeks. Mine is 2.3 cm and appears to be a carcinoid in both a pet scan and a ct angiogram. The thoracic surgeon clearly thinks it’s carcinoid and is prepared to do surgery pending the biopsy results, but the pulmonologist says multiple types of infections can be mistaken for carcinoid. It’s so hard to wait, for sure!

Hello @aclanton and welcome to the NETs support group on Mayo Connect. It looks like you are new to a possible NET diagnosis.

I'm wondering if you were having symptoms that led to the diagnosis?

Hi @aclanton

Good luck with the waiting game. I waited for 12 years hearing guesses about infections vs cancer in my 50+ nodules. Initially they couldn’t biopsy without cutting my chest wide open so I refused. Eventually the largest one 2.6 cm could be reached with a needle. How long have you had it? I kept telling them remnants from an infection didn’t make sense since all the nodules were slowly growing for years. It was finally biopsied and diagnosed as typical carcinoids and DIPNECH. I’m sure you’ll be happy to be on the other sure of this and you will be.