Since 1984 I have had difficulty breathing when exerting; walking, exercising, etc. For years I was misdiagnosed as having some sort of asthma but none of the asthma medications helped. Finally in 2004 a bronchoscopy was performed and a tissue sample sent to the Mayo Clinic the diagnosis came back as Carcinoid Tumorlets. Then 3 years ago with another scan the diagnosis was more specifically called DIPNECH with carcinoid tumorlets. Carcinoids can be found in several organs but mine are in the lungs. Even though I had been told by many physicians oxygen wouldn't help, my current physician prescribed oxygen and my life has improved considerably. I am trying to get the message out about this disease, although rare, I believe there are many other people out there with this disease but it just isn't being recognized. There are a few websites out there to help educate.
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Hello, we are so happy you shared your story here. Were you having symptoms other than the shortness of breath? And are there other treatments in addition to the oxygen? Thanks again!October 27, 2011 - 4:31pm
Sorry it took so long to get back to you. I didn't see your response until I was cleaning out my e:mails. No, I have no other symptoms. I am hoping to go to Colorado to try cannabis oil. It is known to be effective in shrinking tumors.January 24, 2014 - 1:37am
This is what is considered an orphan disease. It took me over 20 years before someone had a diagnosis. So, I am writing this because I think there are others out there like me but just not diagnosed correctly. Sadly, this is a form of lung cancer but the good news that this version is indolent. Some of the medical literature says this isn't cancer but my pulmonologist said that in the broad definition of cancer, it is. There are too many abnormal cells where they shouldn't be. In my case I have innumerable tumorlets (less the 2 mm in size) in both lungs. Normal air we all breath is loaded with other gases like nitrogen and carbon dioxide besides oxygen. The reason adding pure oxygen helps is that in a purer form it is easier to cross over from the lungs to the heart. Another symptom I experienced was morning migraines. I would awaken around 2 or 3 in the morning with excruciating headaches. I went to migraine doctors and my gynecologist (hormones?) looking for answers but nothing helped. I had been doing some research online and learned that oxygen deprivation can sometimes cause headaches. I went to my pulmonolgist and asked for a sleep study. At first he said I didn't need one, but I persisted. After the sleep study it was revealed I had Hypopnea which is the lack of oxygen when one sleeps. Once I got a Epap machine and bled in oxygen at night, guess what? Migraines gone. So, whenever someone says they have morning migraines to me I always suggest they have a sleep study done. There is no other medication besides oxygen for me but some of my co-sufferers do take a few drugs to help with the cough and phlegm. I am currently corresponding with a doctor at Vanderbilt and may go there for a workup. There are a few cutting edge treatments but every case is different. There is also a lot of confusion about this disease even in the medical field. Carcinoids can show up in the lungs, stomach and other organs. Research says many carcinoids are found incidentally on autopsy or when other procedures are performed. So there is a part of the population that have carcinoids with no symptoms. Mine, and a few others like me, have so many tumorlets/tumors that it interferes with our day-to-day lives.October 27, 2011 - 7:48pm
Fatigue is another symptom. Rapid heart palpitations is another. I always know when I am over doing because my heart will start to beat too rapidly. I have a pulse oximeter to help me check my oxygen and heart levels. I have had this disease since 1984 so I have learned ways to cope. In fact, one pulmonolgist told me I knew more than he on my disease and to just continue as I have been. My hope is to be able to hang on long enough so science may come up with a viable solution, much like what has happened with breast cancer.