My Lungnoid Story

My story starts sometime in 2007 (probably earlier than that, but once symptoms became a nuisance). I am a 37 yr old mom of two little girls. I began to notice I was wheezing, more and more as seasons went by. At first I thought this was related to my seasonal allergies, but then it wasn’t “seasonal” anymore. Family and friends urged me to consult my GP to see if I was developing into asthma. So in Dec. 2007, I did. She was not too concerned, but sent me for Pulmonary Function testing and allergy testing.

The PFT was slightly abnormal, and allergy tests confirmed Hay Fever, but that’s it. I was still wheezing, and noticing mild shortness of breath after climbing stairs or when doing client presentations at work. I received a call that my GP was referring me to a respirologist due to the abnormal PFT. My appointment was in July 2008.

I met with the respirologist, and he listened to my lungs for at least 5mins (which is really long). He said he could hear that air was being trapped in my right lung, the passage of air was diminished compared to the left side. He sent me for an x-ray immediately, which came back normal. He was not satisfied, yet not too concerned, and said he wanted to get a CT-scan of chest and abdomen to make sure everything was ok. He thought perhaps my lung on the right side was smaller, which could account for the abnormal breathing pattern. So about 5 weeks later I had CT-scan in August 2008. It was on a Friday at 10pm, only took 10mins. The technician came into the room as I was leaving, and put his had on my shoulder and told me I did not have to wait for my doctor to call me with the results, that I could call him and get the results faster that way, within a week. I said ok, but was not concerned. He repeated this to me twice. Little did I know he was trying to tell me something.

Sept. 17th, 2008 I went back to see the respirologist. The waiting room was full and I anticipated waiting over and hour with my mother. I barely sat down and the doctor came out and called me in. Uh oh….something is up. He calmly told me there was an obstruction in my right intermedius bronchus, which appeared to be a typical carcinoid tumour. It was a very rare type of cancer, even rarer in the lung, and I needed a biopsy to confirm this, to be done via bronchoscopy. Regardless if it was carcinoid or not, it needed to come out as it was blocking the tube almost completely. (There I was, not realizing that having difficulty climbing stairs was abnormal! Hello?! Amazing how our brains rationalize something abnormal as “normal” for oneself…)

Two weeks later I had the biopsy/bronchoscopy which was not pleasant as my tumour started to bleed and I was coughing up a lot of blood. The respirologist who performed the biopsy told me right there he was 99% sure this was Carcinoid. I met again with my respirologist the following week, and biopsy results confirmed it. He called a thoracic surgeon at the Montreal General Hospital on the spot, who wanted to see me the following week. My appointment with the surgeon went really well. He spent over an hour with me explaining the surgery and what the risks were. He repeated to me several times that this was to be done soon as it was Cancer. (I think he saw that I was in a wee bit of denial on that front!!) I needed to have a PET scan and Octreotide scan done first to see if there were any metastases. The wait for a PET scan was 2-3months! He was not sure if he wanted to wait for the results as my right lung was about to collapse any day. Luckily working in Disability for a large insurance company I was able to get my employer to pay for the PET scan to be done privately. The Octreo scan was done within two weeks. Both came back clear confirming only the tumour in my bronchial tube.

The surgery was on Nov. 4th, 2008. My surgeon was hoping to be able to do the thoracotomy with sleeve resection, but there was a possibility of lobectomy or bi-lobectomy due to location of the tumour. It was suppose to be a 2-2.5hour surgery. It lasted over 5hours. Due to the position of the tumour, my surgeon had to be creative as he only had one millimetre of margin to play with, otherwise he would had to remove my entire right lung! Fortunately, he was able to do a “flap”, whereby he cut an intercostal muscle and wrapped it around the resection of the bronchial tube to ensure it was secure. I was in the hospital for 9 long days. I had a lot of difficulty with the epidural, and only got the pain under control by Day 3. It was a very surreal experience being in the hospital in the cardio/thoracic wing. Being a 36yr old woman amongst mostly 70+ males with lung cancer, was odd to say the least… I was certainly an anomaly.

Pathology came back that is was Typical Carcinoid, and lymph nodes that were removed were clear. I noticed they did not do Ki67 or proliferation rate (the endocrinologist told me that the pathologist simply did not know about Carcinoid…reassuring isn’t it?!) , which has since been requested, but no results given to me yet. My recovery was long, but went relatively well. It was hard to accept the physical limitations, especially no driving while on the meds. I was able to wean off the pain medications by April 2009. I went for my follow-up appointment With my surgeon and had bronchoscopies every couple of months to see if the tumour had grown back. Both he and my respirologist felt I was most likely “cured”. I was still experiencing odd symptoms, which made me wonder if I had Carcinoid Syndrome or not. For years I was always "hot" and sweating was a problem. It dissipated after the surgery. I did experience flushing once in 2006, after being in a Jacuzzi for a half hour. I was dark red for over an hour. I had repeat urinary tract infections for the past 3 years (they continue), diarrhea at least one episode a week, but no rhyme or reason to it, and intense allergic reactions after consuming alcohol, most notably wine, and occasional fainting episodes. I was also experiencing intense pain in my hips and thighs which often (but not always) was followed by diarrhea. So I did some research and found an endocrinologist in Montreal who treated Carcinoid patients (I actually found him via this website by seeing him in the pictures of one of the conferences in TO).

My surgeon was reluctant to refer me to him as he felt I was not experiencing the syndrome and that it was not fair to backlog the system with an appointment with the very busy endocrinologist. He also thought I would not need scans too often, maybe every 5yrs or so. He did want me to continue see him every 6mths, and have bronchoscopies every few months however. So I was a little sneaky and after having noticed on my CT scan that there was a mention of a nodule on my thyroid, I asked the respirologist to refer me to this endocrinologist. He did, and my appointment was made for April 2009.

I spent over an hour with the endocrinologist and he said my symptoms warranted a full work-up of tests for the syndrome. So off I went for an Octreo scan, Ct-scan, thyroid ultrasound, three separate 24hr urine collections, blood tests. I saw him again in July 2009, feeling somewhat better then as well, some symptoms having diminished, especially the fatigue. The Octreo scan results were normal, ultrasound was normal (cysts on my thyroid), some elevated results in urine, tumour markers (which I have to repeat in Oct.) and my Ct-scan did reveal some new abnormalities. I have two nodules in my left lung (which had not changed since the previous CT) and a new nodule in my right lower lobe. This is not clear if is scar tissue from the surgery, or a new carcinoid nodule and I will have to be followed closely for it.

The endocrinologist did not think I have the syndrome, just a lot of odd symptoms, and told me once again he is 95% sure I am cancer free, that I am practically “cured”, phrase all too familiar to us “noids”. Not sure I am comfortable with that cavalier statement, when I have two children to continue to raise. I will see the endocrinologist again in Nov. and another CT-scan in Jan. 2010. So ok then, what next? What do I do about my symptoms? Guess that’s up to me to figure out…

So now I am about to have my 5th bronchoscopy, and am still unsure of what to do. So I decided to take my health into my own hands instead of waiting for doctors to give me answers. I radically changed my diet (became Vegan), was treated with osteopathy and massage therapy, which helped me get back to doing yoga once again. I started working part-time in April 2009, and will be back full-time in November. I do feel quite good these days, my energy is back, and many of the symptoms have lessened considerably and those that remain are manageable. I do have daily pain in my back related to scar tissue from the surgery, but I am used to it now, and have accepted it as simply what is normal for me.

I know I will have to remain vigilant about my health, and be my own advocate. I continue to research and I still question if I should push for being on Sandostatin or not… I have yet to decide. But that’s ok. I survived a scary and painful year, and wouldn’t change it for anything. This cancer has opened my heart to so many new possibilities, new ways of being, I can only be grateful for the experience. What a ride!!! I continue to look forward to what else it will bring into my life and know I can face whatever challenge comes my way.

Thanks to all the “Noids” out there for the wonderful resource of information they provide and their invaluable continued support.

Taira