Janis, adrenocortical carcinoma
What were you diagnosed with, and when?
At the end of May 2016, I was told that I had a six inch tumour which was pushing onto my liver causing internal haemorrhaging. It wasn’t until after surgery weeks later it was confirmed as a high grade, stage 3 adrenocortical carcinoma (ACC).
How did you find out you had cancer?
The weeks prior to being admitted to hospital, I was diagnosed with a urinary tract infection (UTI) as I was waking up in pain every night feeling the urge to go to the toilet. I was prescribed different antibiotics and pain relief after a trip to A&E. At this point it was still assumed the pain was due to inflammation from a UTI.
During the spring bank holiday, I went to the gym, returned home and collapsed with acute abdominal pain on my right side. After a 999 call, trip to A&E and being pumped with morphine, I was sent home! I was referred for an ultrasound the next morning. Following the ultrasound, I was immediately given a CT scan. The A&E surgeon who had referred me was then summoned to break the news and admit me. I don’t remember the rest of that day as I was given a cocktail of pain medication.
What did you think and feel when you were diagnosed?
At the time I wanted anything to make the pain stop which translated to an excessive amount of opium based meds! I was monitored for emergency surgery as the medical team battled to get the pain under control. I had three weeks in hospital for pain management before undergoing surgery, it wasn’t until a week before surgery that the lead surgeon confirmed it was a malignant tumour.
It was a shock and somewhat inconvenient as I was going through a lot of other life changing events at the time. Thankfully, I was probably at peak condition both physically and mentally so I was probably better equipped to deal with such trauma.
How did the people around you react?
Family and friends have been incredible. People from every aspect of my life; from those I have known for decades to those who I had known a matter of weeks came to visit and generally kept me going. I could never put into words how grateful and lucky I am to have such great people in my life, especially those who continue to be present, invite me out and understand that ongoing uncertainty around scans and tests. However, I don’t dwell on or judge those people who distance themselves as I don’t know of everyone’s experience of cancer. Having had personal experience through friends and my own family, I understand we all deal with things differently.
What treatment did you have?
ACC is best treated with resection. I underwent major surgery to remove, what was by then a 19cm tumour (right adrenal gland), right liver lobe and reconstruction of the inferior vena cava with a PTFE graft. The inferior vena cava is the large vein running through the liver which carries blood from the lower half of your body back to the heart. The graft has meant I am on blood thinners for life which comes with some limitations. Following surgery, I was scheduled to undergo adjuvant (preventative) chemo in pill form for two years, however, after nine days of being on the drugs I had a major allergic reaction. I opted not to have further preventative IV chemo as there isn’t enough research on ACC to show it adds any value and I wanted to focus on regaining fitness.
How did you feel through treatment?
Immediate effects of the drugs post-surgery was a mental battle. I suffered from anxiety attacks, paranoia and there were some wild hallucinations.
Once out of hospital, I suffered from ascites, where there is a build-up of fluid between the peritoneum layers. This was more a physically uncomfortable situation. Mentally, I was feeling better to be out of hospital. I did suffer with steroid insomnia, however, it was summer time and I had about a month of sport to watch whilst I was pretty inactive.
The first few weeks out of hospital was possibly the most humbling experience when I realised who I could rely on in my life. It’s a challenge when you’re used to being independent.
What happened after treatment finished?
It’s early days and I still have many appointments to stabilise drugs and for monitoring. Treatment is ongoing in terms of monitoring as the first few years carry the highest chance of recurrence. I’m just grateful for six month all clear.
How did you get involved with Shine?
I came across a leaflet at the Maggie’s centre and Shine sounded like exactly what I needed so I visited the website and emailed to get onto the London mailing list.
What difference has Shine made to you?
As much as I want to get back to my new normal and start building my life, I knew that life would go back to normal for my friends quickly too. I wanted to meet new people who understood what it was like to join the unenviable cancer club and talk about practical elements without it being awkward. It has normalised cancer which we should not be so scared in saying out loud.
How do you feel now about your experiences? What‘s been the biggest change you’ve faced?
Apart from the frustration of not being physically where I want to be, I have made a conscious decision to focus on attitude and hope. I do believe that gets you through everything. I had already made changes in my life at that point and was quite happy so cancer just reaffirmed the direction I was heading in and to ensure I surround myself with the right kind of people. I’m kinder to myself and mindful; being grateful for the present and hope for the future.
Being diagnosed with cancer is not unique, it’s how you decide to respond that counts. We are all resilient, it’s just that some of us are presented different opportunities to show it.
If you could give one piece of advice to yourself before your diagnosis and treatment what would it be?
All the clichés! Not to sweat the small stuff, although sometimes I question if it’s the lack of an adrenal gland which has manifested in my general apathy!