Where did you do the trial at in Florida? Currently I am with Moffitt Cancer Center, just had a thoracotomy, right upper lobe lobectomy in May 2022. It was a 3.5cm typical carcinoid with metastasis to hilar lymphnodes angiolymphvascular invasion. It was located in the lobe and bronchial tube by the pulmonary vein or artery and they didn’t know if they were going to take the entire lung or just the top lobe until actually being inside my body during surgery. Thankfully they only took the top lobe, but now August 3, 2022 I had a PET copper dotonate scan and they found a new growth in my right lower lobe, the same side as the upper lobe lobectomy.

PET copper dotonate scan August 3rd they also found:
-spine tumor with SUV 2.7 at 5th vertebrae
-fractured 5th rib with SUV 5.7 near spine tumor
-actelasis right (middle lobe collapse)
-neck lymphnodes with mild uptake
-left subclavicle lymphnode with uptake but was interpreted as reactive, which I don’t understand
-new nodule in right lower lobe with no SUV uptake, however I am concerned lung carcinoid tumors do not always show SUV uptake and why was this not found prior to the open thoracotomy right upper lobe lobectomy in May and even post surgery scans and thoracic surgeon and oncologist follow up appointments at the end of May. Was it not there and now has grown?

Post RUL lobectomy in May I have a worsening cough, that nothing helps with and the doctors just say some people get it. I shortness of breath and just had right middle lobe collapse in July 2022. I had sharp chest pains, difficulting getting a full breath which even after surgery I could breathe better, but why two months later post surgery was I going backwards and in more thoracic pain wit every breath, coughing, fatigue, heart palpitations, ripping and crackling lung. It didn’t make sense.

Why is there conflicting results between scans? I know they are different imagining techniques and purposes, but I am concerned the scans are not being reviewed by a lung NET expert and extra concerned why my lung is not healing, but instead going backwards.

August 16, 2022- X-ray only showed chronic fibrosis in the right lung (even as a teenager when I had a fractured leg it did not show up on an X-ray)

August 25, 2022-pulmonary function test results indicated obstructed airway disease

Then last week September 2022 I had a CT scan with contrast and they found:
-no growth in my lower right lobe (the first cardioid I had did not show up on a CT scan either)
-now this CT scan shows a rib fracture in my 7th rib starting to heal with calleous formation and an infection in my 6th rib. This is very concerning because the PET dotonate scan showed I had a 5th rib fracture by the spin and that did not even show up on the CT scan. All I know is that I am in a lot of pain, my lung/ribs burn even while resting, my heart beats funny when I lay down, I gasp for air while resting and when eating, I have deep dinosaur coughs and am fatigued more than post surgery. My right rib cage is swollen, my lung crackles and rips. Something is not right, I shouldn’t be going backwards when my lung was healing for the first two months post surgery. Now three to four months later I am in more pain and have difficulty breathing. I can tell my brain is not getting oxygen too, I am dizzy, headaches, my brain freezes and I go blank and I yawn all the time too.

So how do I find one Lung NET doctor or a lung cancer specialist to review all the scans because the interpretations by radiology and non lung NET specialists need to be pieced together because something is not right. I should not be in this much pain, coughing, fatigue.

Thank you

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