It wasn’t long, and the appointment to meet with the endocrinologist was just days away. I was feeling slightly apprehensive, it  just felt so uncertain, so unknown. It was scary to be honest. Id also begun to recognise since my appointment quite how often my heart would race. This wasn’t even when I exserted myself, sometimes I would just be sat watching telly or even getting off to sleep at night. So following the advise given by my NF1 nurses I had stopped going to the gym. Through everything that had gone on this year, all the stress one of my saving graces had been the gym. I went to one class in particular about 3-4 times a week and had personal training in both cardio and resistance. I had missed it so much. With everything else going on, I felt that one of my outlets had been stolen away from me, and so, despite being advised not to exert myself I did go back to a few classes in the week leading up to the appointment. Taking things slowly and trying not to let my heart go crazy. 

The day finally came, unfortunately, my mum wasn’t able to make this appointment. She had hoped to, but was called into a work thing. But I wasn’t  worried, I thought I had figured it out anyway. I had a Pheo, right? 

The ward was busy, but we were welcomed in quickly enough and I was taken through to a large side room where I was measured and weighed. I was then given a urine sample pot and told to alert a nurse when I had filled it. I silently laughed to myself, id just been to the toilet before entering the ward to get it out of the way before my appointment. Typical.  So there I was downing water hoping that it would work quickly. 

After doing my urine sample, and posting it through a little window to be collected I was then taken to the room I was weighed in, and I had my heart rate taken along with blood pressure and several different blood tests. I was then instructed to go back into the waiting room and I would be called through shortly to meet with the doctor. 

When my name was called I stood and took a deep breath as me and my partner stepped into the doctors room. 

We talked about the incidental finding of a mass  near my kidney, he asked what I understood about it at this point. 

I explained that I knew nothing really. Other than there was a thing there, that shouldn’t be and based on my research, I suspected that it was a Pheochromocytoma.  

The doctor began by congratulating me on my research skills but went on to explain that they were fairly sure it is not a PHEO. Although I will need more tests to confirm his suspicion. 

He told me that yes, there was a mass near my kidney, in fact, just above it, on my adrenal gland. He then talked me through, briefly the workings of the adrenal gland in terms of the body and endocrine system. He said that the mass on my adrenal gland was significant in size. While at this stage would be difficult to say for sure what size it is, it certainly looked to be bigger than my kidney. Therefore, he explained, at a guess he would put it at around 10-12 cm, about the size and shape of a grapefruit to put it into context. 

This shocked me beyond words. I couldn’t quite comprehend that. That seemed huge, how on earth did I not notice that! I was expecting a mass the size of a grape, at the very most, a pea perhaps, not this. This was big. This was already scary. I got to see my scan, I got to see the mass, there it was, right there on my left side above my kidney, it was, in fact squashing my kidney.  I was confused, everything I had read about Pheos suggested they were small, and treated with keyhole surgery. I spoke to the doctor about my concerns, he nodded. He explained that while a Pheo is something that they would need to formally rule out, due to the size and the position it is unlikely to be a Pheo. Regardless they would definitely need to surgically remove whatever it is, and that I was quite right, they aren’t going to remove something of that size with keyhole surgery. 

He then asked me if I had experienced various symptoms. I will go through these in a future post, he then said that there was a few things that this could be, and unfortunately one of them is cancer, he therefore wanted me to have a PET scan, and following that we would meet again. He instructed me, that due to the uncertainty of what it is and my heart rate being so high and  erratic  that I was not to go to the gym or do any exercise whatsoever. As we were about to leave to room I said, joking “oh well I guess I’ll just stick to yoga then!” 

He replied, “I would rather you don’t even do that.”

This took me a little by surprise, but. I didn’t have much time to think before he asked us to please wait in the waiting room an we would be given a date for my PET scan. While we were waiting I said to my partner, how convinced I was that  it was a Pheo. A kind and well meaning woman sat  next to me  smiled , and said “not to worry, that’s what I had and they sorted me right out. I’m right as rain and they have looked after me so well.”

I didn’t bother to tell her that it didn’t seem like I was looking at a Pheo. But thanked her, wished her luck and with my scan date still to be confirmed, the date to then hear back from the endocrinologist to talk about the results was booked to be  October 10^th.. 

So we left. Still not knowing much but knowing whatever it was it wasn’t exactly good.