Net unknown cause of breathing problems

Hello @peggymariejackson,

I can certainly understand your feeling concerned about your breathing problems. Since you have had a NET previously, it is easy to think that this could be another NET. You mentioned having had a NET in your stomach. How was this treated? For example, did you have surgery?

Regarding the breathing problem, you mentioned having had CT scans. I'm wondering if you have had a 68GA-Dotatate-PET. This is the best way to find NETs. Here is an article about this particular scan, that was written by a radiologist at Mayo Clinic.
--68 GA Dotatate PET
https://connect.mayoclinic.org/discussion/68ga-dotatate-positron-emission-tomography-pet-now-at-mayo-clinic/
Other than the CT scan, what other types of scans, blood work, etc. have been done to look for NETs?

I stated going to a pulmonary dr way before being dx withNET. I begged for a bronchoscopy to no avail. Finally found a mass in my groin lymph nodes. After pet scan and bronchoscopy dx with sclc. Then dx changed to hi grade metastatic Neuro endocrine carcinoma. I suffer with cough and some mucus but the tumors in my groin adrenal gland and tumor in the subcutaneous space between my colon and vaginal wall is much more aggressive and they are treating that first. For the time being those nodules in my lung are slow growing. Hope this helps. I will say the chemo I was on didn’t make the nodules in my lungs any smaller

Hi

I also have a dry cough
Wheezing and shortness of breath
I don't have asthma
I do have suspected carcinoid syndrome with histamine release

I've read that these symptoms can be synonymous with nets and carcinoid syndrome for some
Histamine make sense to me in terms of the symptoms in me ie allergic type symptoms which histamine is linked to

I have lung NETs with tumor on my left lobe and mediastinum. With this I have been diagnosed with GURD and sleep apnea. My symptoms also include shortness of breath, heaviness on chest, as well as a few others. I would suggest that you may not have yet found the full impact of your overall health. My doctors started off treating the cancer before moving on to the less concerning aspects of my health. My blessings to you you and and your family as you make this journey.
Sincerely
CEB

@peggymariejackson @hopeful33250 @sherikayb @debbieguk @ce1b
I see some of you have lung NETs, some GI NETs, but talk about breathing issues and mucus. I have lung NETS -- typical carcinoids. I also have DIPNECH which is really rare and can be a precursor to lung NETs. I have 50+ tumors approx. 1 cm across both lungs. I had tumor microwave ablation at UCLA to destroy the largest one that was 2.6 cm (they were afraid that one might metastasize). We first discovered the tumors in 2008 -- an incidental finding. I wasn't diagnosed until 2020. I had a chronic cough, mucus for 30 years plus shortness of breath and fatigue just with walking. My NETs was diagnosed with a biopsy. I then had the DOTATATE Cu64 PET scan, but it turns out I'm one of the people without somatstatin receptors so that didn't even catch what we already knew. Something like a third of the NETs patients don't have those receptors. However, even though I don't have those, octreotide helps symptoms of DIPNECH.

So I've been taking octreotide injections every 4 weeks for over 2 years. Within about 3 months of taking them, my coughing, mucus cleared up and the shortness of breath improved. They also give octreotide for some GI NETs to control symptoms. I'm wondering if this can work for you? Also, as far as seeing the tumors in your lungs. My interventional radiologist at UCLA told me it's not the 50 tumors we can see that cause my symptoms, but the hundreds or thousands of tiny tumorlets that are too small to see on CT scans, but line my airways. They know they are there based on PFTs, maybe the general structure in scans and from other cases. Octreotide might be something to discuss with your oncologist. Octreotide has been life changing for me. It's also supposed to slow down tumor growth, but mine grow very slowly anyway. It took them a decade to double in size.

I also have GERD, sleep apnea and asthma with allergies or when sick, but it turns out the lung NETs and DIPNECH were to blame for most all of my symptoms. My chemical sensitivity has even improved. Best of luck to all of you.

I have a Lung NET that has spread to one of my lymph nodes. Was told that mine also had poor receptors.
Diagnosis in Aug of 22. I too have shortness of breath, some mucus and now much fatigue.
Completed Radiation/chemotherapy treatments and am now on monthly Lanreotide injections. My next PETscan is scheduled for July.
I was told as this cancer progresses it will more likely than not end in brain tumors. While I’m not looking forward to treatments or disease progression I prefer to focus on my daily health and life. Making as many positive memories as possible just in case the gray matter and neurons get pushed out. 😉
I see this cancer as both a blessing and a curse.. I choose to focus on the blessings. I’ll let my care team take care of the rest.
It’s given me a lot of time for reflection. I have goods and bad days, but take them both in strides. My weekly support group meetings have been a source of inspiration. I hope everyone with this cancer can find the same. I always remind myself it’s a marathon not a sprint.
Next week I have signed up for some physical therapy to help in my fitness goals. So far when I spend one day on fitness it’s a two day recovery period for me. I’ll try to get that done to 1/1.. wish me luck..
Be as happy and healthy as you can and much blessings to all.

@californiazebra

You have shared your experiences most effectively. I appreciate all the information you have provided. It sounds like you have been most proactive in getting to the right diagnosis. It must have been frustrating to have these symptoms for so many years.

I'm glad that you have found a treatment that is obviously working for you. As you do not mention surgery, I'm assuming that it has not been suggested. Is that correct?

@hopeful33250 Hi Teresa,

You are correct that they did not suggest surgery for me. The reason is because I have so many tumors scattered all over both lungs that there is no way to remove all of them and no point in removing lobes. And the symptoms come from the little ones lining my airways that can't be removed either. My interventional radiologist just told me he had never done microwave ablation on a lung tumor as large as mine before so he's so excited that it was successful. It has been two years and that tumor is just scar tissue inside now.

It's the DIPNECH that causes me to have so many tumors. It's rare with only about 200 documented cases. That's why it confused at least 20 doctors (radiologists, pulmonologists, oncologists, etc) for a dozen years. Hardly any doctor has heard of it. They first thought it was mets, but where was the primary cancer? Most thought it must be some bizarre benign condition or leftover from a virus, but they were slowly growing. They could tell it wasn't primary lung cancer. They wanted to biopsy, but would have to filet my chest and lung to get to the largest one. I declined figuring it was too late if mets and overkill if benign. In 2020, the largest tumor was large enough to biopsy with a needle so I agreed. Since I now had breast cancer for the second time and they wanted to see if it was related. It is not in any way related to my breast cancer.

I do know someone who had one very large typical carcinoid in her lung, had that lobe removed 10 years ago, no other treatment and has never had another issue. She wasn't left with any breathing issues either. So without DIPNECH, lung NETs (typical carcinoid) is less complicated.

Hi @ce1b -- I think you have a great attitude. I agree with your thoughts. Is your lung carcinoid typical or atypical? Mine is typical and I was told it's much less likely to metastasize than other lung cancers, but that's why they will destroy any that reach 2 cm. I'm sorry to hear about what they are telling you.

My brother had regular lung cancer even though he never smoked. It was already stage 4 when diagnosed. They discovered he had 24 brain tumors and they destroyed them all with gamma knife radiation. They do it with lasers in something similar to a CT scan machine. It was non-surgical. So if it does spread to your brain, know there is still treatment available. He was laughing and talking to us shortly after the procedure. It didn't impact his cognitive abilities or positive spirit. No one could make me laugh like he could.

Enjoy making all your new memories! Blessings to you as well! 🙂

Hi Californiazebra,

My NETs is a stage 3 atypical large cell considered to be a fast growing type of NETs. So far my treatments have reduced my tumor sizes by half. That was the positive results of the treatments to date. I'm looking forward to another positive result on this next PETscan as well. Hoping the treatments keep the spread of the tumors in check.
I've lead a healthy life up to the cancer diagnosis so my body is in good shape to take what ever is next. However the treatments have been taking its toll on my health. For me one of the impacts have been the change in my daily routines. Appointments and fatigue are some of the biggest impacts to my lifestyle. I've always led a busy life now I'm having to adjust to more downtime as the treatments schedules are reduced.
I see some new hobbies on my horizon as I progress in this NETs journey.

Kindest Regards
Ceb1