In the beginning of 2015 I noticed I was a little out of breath after small daily activities: walking up the stairs, getting up to use the bathroom at night etc. I went to see my GP who ran a number of blood tests but they didn´t show anything. A test of my lungs for any possible asthma was also negative so we put it aside to a recent case of the flu and I was told to be a little patient. Spring went by without any improvement but as we got closer to summer and a big family vacation my mind was busy with a number of other things. Upon returning from our vacation I went to see my GP again. We reset the clock, did another round of blood tests and when these came back normal, we added a chest X-ray to the work ups.
One afternoon I received a call from my GP, telling me they had found a shadow on the X-ray of my lungs. I wasn´t to worry as it probably was nothing serious, but I was referred to the hospital dealing with lung cancer in our area for a further evaluation. I went for my appointment, was again ensured I had nothing to worry about and had a new set of X-rays. As the doctors were not concerned, I was of relative young age 43 yrs and a non-smoker I gladly went for my appointment for my test results alone. That day in October my whole life was turned around. I was told it looked very serious and that I most probably had lung cancer.
Over the next two and a half months I went through a number of diagnostic procedures without the doctors being able to diagnose my cancer. I kept insisting they removed my tumor and once it was removed they could run all the tests they wanted to in order to help the diagnosis. The doctors were hesitant to perform surgery on me as they did not know what they were dealing with but finally they agreed and I was scheduled for surgery rigth after New Years Eve.
My tumor was quite large (10 x 13 cm) but they managed to remove the majority of it. I went home to slowly recover from the procedure and continue my waiting game. The pathologists were not able to diagnose my tumor and assistance from fellow pathologists in Europe was requested. One and a half month later I finally received a diagnosis of a very rare tumor called an interdigitating dendritic cell sarcoma. The diagnosis came with some relief of finally knowing what I had but also with more worrying as doctors do not have much experience with this type of tumor. Due to a residual tumor in one of the other lung lobes I started on chemotherapy. 4 rounds of chemo were unfortunately of no effect and in May 2016 I had a lobectomy to remove the other tumor. A PET-CT scan did not detect any other malignancy so I spent the summer of 2016 convincing my self I was out of the woods. Unfortunately, I had a set back with fluid in my lungs in August. Upon removal of this I was informed I most probably had active cancer again and would need a very agressive form of treatment. Our whole family was devastated and our 2 sons did not know what to do. Our surprise was therefore enormous when we showed up at the hospital only to be informed that everything was fine and that I wouldn´t need any treatment. A year with regular scans followed and everything seemed to be in good order but in the summer of 2017 I was told that one of the lesions in my lungs had increased in size. As of now, there is no activity on the PET-CT so I am back to the good old waiting game with regular scans, each time hoping for the best.
3 years have passed since I first detected the symptoms and went to see my GP. I hope I will be able to see our two boys grow up, I no longer take anything for granted and I try to spend as much time as I can enjoying myself with my husband, our sons, the rest of my family and friends.
My advice to people is to go see your GP if you feel something is wrong with you. If the symptoms continue, insist to get further tests in order to find the cause of your symptoms. Hopefully, it will turn out not to be serious but better be safe than sorry.