We arrived on the ward and checked in, took our seats and waited. While we were waiting we started to come up with some sort of plan, devising a little bit of an action plan, what would we do between now and surgery. Trying to figure out   how much time we had, in our heads there was a good few weeks to prepare.

We certainly didn’t expect anything to happen soon, maybe four or five weeks, surely? It wasn’t going to happen that soon?  the 12^th October, we thought it would be lucky to have the surgery done this side of Christmas.

We then went to see the doctor who had been looking after me. We spoke in quite a bit of detail about the physical symptoms I was presenting with. He explained that there are two types of ACC, the hormone secreting kind, and one that doesn’t secrete hormones. Mine was hormone secreting, causing me to produce too much testosterone and cortisol, so he said he was very confident that with the surgery removing the cancer,  most of my symptoms would entirely resolve themselves. The acne, increased body hair, moon face and adrenal belly would all go, I could barely bring myself to believe it. I’d hated my body because of these things for so long so to hear they were not perminant and were not me, was amazing. It was also so validating, I knew there was something wrong, I knew in a weird way, it was much more than just hormonal changes, and now I was being told in no uncertain terms that yes, it was real, and it was not forever.  That felt good, and I felt a sense of optimism in what life might be post surgery.

It was at this appointment that we further discussed the prognosis regarding my other adrenal gland.

When one adrenal glad is damaged, as mine was, the other goes into what they call hibernation. As mine had it showed up visibly thinner on my scan, we were told that sometimes they can recover after surgery, however mine did look in quite poor condition and therefore he wasn’t sure if it would recover. We were told that wile it wasn’t impossible, it was unlikely that the remaining right adrenal gland would recover. This would mean that it was likely I would be on a hormone replacement steroid called Hydrocortisone  for the rest of my life. This medication would  be given for certain post surgery, when I was in hospital and for the few weeks between surgery and a follow up appointment with an endocrinologist.

We talked a little more about he symptoms I had, that we now knew were as a result of the cancer, and the overproduction  of hormones. I also shared many of the overt characteristics that are seen in those with Cushing’s  Syndrome –  adrenal belly, moon face, easy bruising and delicate skin being the most prevalent  in my mind.  I was reassured though that I would see all of this reduce once surgery happened as it was as a direct result of the cancer that I was having these problems.  We were also  able to ain further reassurance regarding the potential genetic element of the cancer. NF1, of course causes tumours, and does predispose one to developing certain cancers. Although with ACC being so incredibly rare we were told that it was likely not linked in any way, furthermore we gained the reassurance  that a family pattern of ACC was also unlikely.  I was able look back and figure out that the first obvious symptoms started to show themselves around two years ago. The doctor said this was helpful to know, and although the tumour was large at this point wouldn’t want to speculate about how advanced it was and a biopsy wasn’t an option, ACC shouldn’t be biopsied  because there is a greater risk of the cells implanting into nearby organs, its also why keyhole surgery isn’t recommended even for smaller tumours, it was described by my endocrinologist as being “crumbly” and that the risk of the cells falling and attaching was too risky,  but that once the surgery happened they would do a histology report to establish how advanced the cancer was and what, if any further treatment may be required.

Now it was time to meet my surgeon,  he had an authority about him that I cant quite describe, a bit like that teacher who only has to look at a class for them to behave, he owned the space. But he was kind and clearly very knowledgeable.

Once we were invited into his clinic room, he explained again, that there was a large adrenal mass on the left, and this would require an adrenalectomy. He explained that due to its size (they estimated at this point that it measured somewhere between 8-12cm) laparoscopic, or keyhole surgery would be out of the question. this would require full open surgery. I feared that would be the case and was terrified of that.

He explained exactly what would happen, and that here were two kinds of incision  he could use, but that he would likely make that decision on the day. He talked though the recovery explaining it would likely be 6 weeks of quite intense recovery, where I wouldn’t be allowed to do anything, I wasn’t even to lift a kettle during this time as I was at risk of internal damage to the stiches, or a hernia. We again talked over the scan results and the symptoms id been experiencing, although not in as much detail as with the doctor.

 He then did a physical examination of my abdomen. He pushed his fingers pretty much under my rib cage to have a good feel around it was weird, it didn’t hurt but certainly didn’t feel great. A few research associates also had a good feel around so I was thoroughly  poked and prodded.

Once I was done, I sat back down and he took out his diary. I still thought that I would be looking at at least four weeks before surgery, “we are on the 12^th now,”  I thought when he said,

“how about the 23^rd?” that he was talking about December, but no, how wrong I was, two weeks time, that’s all the time I had. He said he was keen to get it done as soon as he could, so that was it, surgery booked, no going back now!