Joanne Ferguson's Story
(Diagnosed with Lung Carcinoid, Dec, 2002 at age 52, now 57)
I am a Registered Nurse, who worked full time until my diagnosis in 2002. I loved my job at the Hospital running the Home IV Program. I am married with 2 grown sons and one grandson. I was always a very active person; my husband and I loved mountain biking, running, water skiing and kayaking.
In April of 2002, I started to have a strange pain in my left kidney area, just below my ribs. I went to my family Doctor, and told him of this strange pain and that I also had increasing shoulder pain. He ordered x-rays of my shoulders, which I had done in our hospital. The Radiologist who read the x-ray report stopped me in the hallway of the hospital and said "Joanne, your shoulders are very arthritic, this is abnormal for someone your age, you should be investigated for some type of systemic problem", I returned to my family Dr and did the suggested blood test for hemochromotosis, which can cause shoulder arthritis. This test came back negative.
Meanwhile I continued to have the left sided pain, as well as the shoulder pain, went back to see my family Dr several times, and he just kept putting me off saying that it must just be muscle pain from the shoulder arthritis.
It was now October, and the pain continued, I was still working full time, and was just so tired. I ended up going to a walk in clinic and pleading with the Physician (who I knew from the hospital) to "please take me on as a patient". He agreed to take me on after seeing my tears and told me to call his office to book a complete physical.
I saw him towards the end of October; he ordered several tests, one being a CAT scan of my chest. I had the CAT scan, December 4th and on December 20th, 2002, I had a left lower Lobectomy for a 1.8cm, typical carcinoid tumour. (It took 3 very long weeks, to get the pathology results, because it was Christmas.) That was probably the saddest Christmas I’ve ever had, spent in the Kelowna Hospital. I felt that I was automatically assumed to be a smoker with lung cancer; I was constantly telling the staff that I never smoked. I went home the day after Boxing Day to my wonderful supportive family.
The Surgeon finally called me mid January to tell me "not to worry" it was only a Carcinoid tumour, and to just consider myself cured. I was thrilled with this news, I knew nothing of Carcinoid tumours, so of course got on the computer and started doing some research. Some of the information that I read was conflicting with what I had been told, which was "not to worry" but I did eventually, just put it out of my mind and considered myself cured.
But, I continued to have strange inflammatory problems throughout my body, especially in my lower back, hips and shoulders. In the summer of 2006, I had a gastritis attack, and lost 15 lbs very quickly. I had numerous blood tests and a gastroscopy early that fall. My CT of my chest showed small "tumerettes" in my right lung. I had 2 more follow up CT's which showed no change. I had a chest x-ray one month ago that is now showing changes, so I am now booked to have another CT of my chest and abdomen.
Meanwhile, I had a total shoulder replacement of my left shoulder Oct 5th of this year, I am recuperating from that. The inflammation throughout my back and hips is very debilitating; I’ve been to Rheumatologists, Physiotherapists, Acupuncturists, and Massage therapists. I cannot take antinflammatories because of my sensitive stomach, so get by day to day with stretching, icing, and massage therapy.
I have increasing diarrhoea and seem to get these weird hot flushes, especially when my back is really sore. My Oncologist does not seem to think that I am having Carcinoid flushing (could be menopause). I am not on any Sandostatin.
I have attended 2 Conferences now, the one in Toronto and the one in Virginia, and feel that I have the knowledge now to be my own advocate. I feel that it takes so much energy, sometimes energy that we just don’t have, to be constantly advocating for ourselves. I felt very stressed after my last oncology appointment; because there were so many questions I wanted answers to, so many "what ifs".
My story does have a very positive side. I have met some incredible people with Carcinoid/Neuroendocrine Tumours. I really enjoyed going to these conferences and felt so very blessed to be in the company of these wonderful people.
My life is not the same as it was, I can no longer say I’m that athletic person I used to be, but I do dream of one day becoming a pilates instructor and holding free classes for Arthritic patients. I now read constantly and have met more great people through my book clubs. I learned how to play bridge and love meeting with these ladies once a week.
I don't ski anymore, but just being able to go up to the ski hill and meet my husband for lunch is great.
The sun is shining today on the freshly fallen snow from last night and I love it! I pray that the shines down on myself and all those living with this rare, but nasty Cancer, for many, many more years.
November 2007 by Joanne Ferguson
British Columbia
Lung Carcinoid