Kim D. Vancouver
In May 2008, at age 44, I had a 1.8 cm lung carcinoid tumour removed via a RM Lobectomy. Part of my air canal was removed as well. The tumour was rated as a typical carcinoid even though a ki67 was never done. They were not certain until they actually removed it that it was carcinoid because it was growing on veins, hidden underneath the tissue, making it impossible to biopsy because of the danger of bleeding.
The reason they found this cancer was because four months prior I was sick with pneumonia and was not recovering. The tumour did not show up on an x-ray but showed up as a tiny dot on the CT scan that a lung specialist ordered. The original GP kept on telling me I was fine even though I was coughing almost non- stop. So he misdiagnosed me even in this sick state. It was emergency that sent me to a specialist even though they did not believe anything was wrong.
My lung symptoms started two years before. I had a wheezing, funny noise coming from my lung, shortness of breath, panic attacks when I felt like I was having an asthma attack and chest pains. As well, for many years I had had several bouts of bronchitis, which they diagnosed as chronic. At that time, I went to the doctor when my lungs were giving me issue. He diagnosed me with panic attacks even though I mentioned it felt physically based. I did not push for tests, which I should have done.
At the same time in March 2008 before my lung surgery, I began to experience strange debilitating symptoms in my upper right abdominal area. It felt full with lots of pressure. I also had pain in my rib area and upper GI bleeding with black stools. Almost every day I had an incredibly weak feeling, like one bad hangover.
To this day they are searching for the second tumour location(s) and so far tests have not revealed the source even though doctors suspect it is another tumour causing these symptoms. I have told my doctors that when I was in my thirties, approximately 15 years ago, my abdominal issues and flushing attacks started. I was diagnosed with Irritable Bowel syndrome (IBS) even though they mentioned my symptoms were not standard. It seemed to be a diagnosis based on not knowing what else it could be. I woke up one day with terrible diarrhea, sometimes 20 times a day. I thought I was experiencing pre-menopausal symptoms because of flushing attacks which were very quick but which left my face red and blotchy and feeling hot and cold.
I suspected menopausal symptoms because at age 25 I had a partial hysterectomy for Pelvic Inflammatory Disease. Who knew this could be a misdiagnosis too? They had trouble explaining why I was not getting better with the I.V. antibiotics that I took for many weeks. Even though I had my ovaries, the doctors could not give me an answer about the flushing. They kept telling me it couldn’t be menopause but they had no other answer. Of course, I had never heard of carcinoid syndrome and didn’t consider it as an option.
Now, in the last five years, the diarrhea has gradually changed into constipation. Because my flushing attacks are prolonged, I now have permanent blue veins (telangiectasias) above my lips and discoloured red cheeks and nose that look like I was badly sunburned even though I have never had my face in the sun.
All in all, this is still a work in progress for better answers. I have found other foregut patients who have had terrible trouble finding the primary, which I understand can be smaller than the secondary. Also some of these patients have negative CgA and 5HiAA results, which I understand is very common because foregut tumours emit different types of hormones not picked up by these tests. This reality can leave many of us in a difficult position with doctors. It has been a long struggle for me. It has taken me four doctors to find to one who understands carcinoid.
Two major things I have learned from this is:
- we can’t sit back and wait. We have to be as proactive as we can be, bypassing those doctors who are not willing to get to the bottom of things. And
- we need to trust in our instincts. We know our bodies the best. Even though I knew something was terribly wrong for many years, I just never pushed doctors.
I hope that my story can help you in some way. Thank you.
Kim D.
Written July 2009.