People with rare diseases and cancers like ACC, often find it helpful to hear about the experiences of others with the same disease. In addition, many people find it a rather cathartic or healing experience to write down their experiences of their disease.
Whatever the motivation, we are always happy to receive your story and have developed a Word template below with some prompt questions in case you’re not sure where to start. Please send your story* in to info@accsupport.org.uk.
*stories may be edited to preserve anonymity where required
MY STORIES
Maisy
I am Maisy, I am 26 and I have a rare disease. The chances are, if you are reading this, you might do as well. Although, I am quite a bit rarer even than those who have ACC, that’s about 1 in a million, I also have a rare genetic condition called Neurofibromatosis type 1.
I was diagnosed with ACC on October 10th, 2023, and it feels like my whole life has been turned upside down since. I’ve had to give up work for now, I can’t engage with my hobbies as I used and I generally, feel like a different person to the person I was this time last year. Some of this is temporary, I will go back to work when I am ready and I will start to get back into doing the things I love, but I know now things will never be the same again.
I had an open adrenalectomy at the end of October, and shortly after started on Mitotane. Processing the diagnosis surgery and treatment has been immensely hard both physically and emotionally. I perhaps, quite naively thought I would be back to my usual activities a couple of short weeks after surgery. When I wasn’t, I was being so hard on myself, blaming myself for not healing quickly enough, for not healing well enough. Before starting Mitotane in December I was terrified, my only experience of chemo was two years of IV chemo as a kid and I was so scared of ging through all of that again. I was overwhelmed by the new list of medication that I now had to take, morning noon and night, my day was now punctuated by medication, my week by hospital appointments and my life, and the lives of those around me by this rare disease, because when you have an illness, that is so all consuming it impacts every person and part of your life. My family, friends and partner have been amazing, but have also been put on this rollercoaster with me, and they too have no choice.
There is no quick fix, no one thing will make it all better. The whole thing is unfair, it’s horrible and feeling every feeling, sometimes in the space of an hour is not unexpected. It can however feel like a very lonely place. It’s no quick fix but one thing that’s helped me has been the ACC Support UK Facebook Group, a space where no question is a silly question, and everyone understands the point you are at in your own journey has felt like a weight has been lifted.
For me this was of enormous benefit before starting Mitotane when I had so many questions and worries that I did not want a clinical answer to. The group members were incredible, all offering support, but also first-hand experiences of what life is like day to day on Mitotane. Sometimes, clinical answers are helpful, but sometimes all you need is the true stories of people living this reality day to day. That’s what the group has given me. Each person who has shared insight, answered or asked a question, have in some way impacted my journey in a profound way.
I like to see each step on this journey as a chapter, that I can get to the end of and leave behind, only revisiting the ones I want to. When you are thrown into a situation with such little control, try to take control where you can, do what you need to do, but most of all don’t do it alone.
I’m grateful to AMEND and ACC Support UK for the information, support and resources they have provided since my diagnosis, and I am really looking forward to the face to face meet up, where I won’t be such a rare statistic.
Emma
In May 2010 I started feeling different more stressed than usual. I put it down to work, busy life, raising a family….. I put on weight and did not feel right at all.. I went to my GP and I was referred to a gynaecologist who said I had PCOS (this was without a scan) He said the best thing for me was a hysterectomy, so I was booked in and had this done in around January 2011. They also removed my ovaries. (Looking back this was a mistake and shouldn’t have been done).
But soon after this more symptoms started. I started getting hair on my chest, on my back, the hair on my head started getting very thin.. I went to the doctors probably about 15 times. They took bloods but thought it was hormonal issues…It got so bad that I started wearing wigs…. I started gaining weight, plus I would have these episodes where I would just feel like passing out.
I referred myself privately to a specialist gynaecologist to try and find out what was wrong with me.. She increased my HRT Patches and put me on high doses of Metformin. But still my symptoms were still there.. I was due to get married in October 2012, so really wanted to lose weight, I did everything I could and I just couldn’t lose the weight.. By this time all my hair on my head had gone and I was shaving my face and chest everyday… I felt very ugly and overweight on my wedding day ☹.
In March 2013 I was working on site at Heathrow and I had a funny turn and fainted, it was scary and embarrassing… I wear a hard had to work, when I collapsed my wig and hat came off. I was on site with over 1000 men… After this my GP referred me to have a brain scan as I couldn’t talk properly. (By now I’d had enough and handed my notice in at work and said to my company I can’t face going back to work after what happened).
I got referred for a brain scan quite quickly, after the scan the radiologist sat down with me and my husband and had a long chat with us. He asked about my symptoms, history and really was trying to find out what was going on with me. At the end of the appointment he said that he thinks I should see an Endocrinologist (at the time I’d never heard of one of these or what they did).
So, I referred myself privately to see an Endocrinologist, who very shortly said he was certain I had Cushing’s Syndrome. (Had no idea what this was). But he said they want to do an ultrasound and test my cortisol levels. During the ultra scan I sensed something wasn’t right, the radiographer was asking how long I had my symptoms for etc… Shortly afterwards the Endocrinologist saw me with all my results. He confirmed Cushing’s, my cortisol levels were so high he was amazed I was still standing and coping. He went on to say that they have seen a 10cm tumour on my right adrenal gland.
I remember feeling relieved to begin with that I had not been going crazy and there was a reason why I had been struggling for nearly 3 years.
I was referred to a surgeon quite quickly who at the time said it was probably malignant. At this point I did not know it was ACC, so I had to trust the my surgeon who came highly recommended… I had the tumour removed laparoscopic …The surgery was in April 2013 I believe… On seeing the surgeon afterwards, he advised me that the tumour was ACC Cancer… He had to remove my left adrenal and some of my liver to get clean margins…Then everything hit me. It was such a shock and I was totally not prepared for it, my head was all over the place…The surgeon referred me to a local Oncologist…By this time I’d been on every single group you can think of, I’d researched ACC on the internet, spoke to other sufferers of ACC all over the world.. I remember being told by one person that having laparoscopy surgery had probably given me a life sentence. It was just a terrible time.
When I saw the Oncologist he had little experience with ACC, but gave me three options, 1/ wait and see if it comes back 2/ clinical trial or 3/Mitotane Chemotherapy….I spoke to my family and friends at lengths about this and after some of the horror stories I’d heard I wanted to give my body the best possible chance of survival so I opted for the Mitotane route.
The local Oncologist could not prescribe mitotane, so I was referred to Charing Cross there to see a specialist Oncologist and Endocrinologist…
After a meeting and long chat with the Oncologist I started Mitotane, and my steroids were then managed by the endocrinologist.
To summarise
I went on mitotane for 3 ½ years…I experienced the usual side effects, but I couldn’t get past 9 tablets a day. It made me so ill so the Oncologist reduced my tablets to 6 a day. During this time, I would have regular bloods and appointments with the endocrinologist (its so important to get the steroids right when on mitotane).
Its now May 2019. I’ve been cancer free for over 5 years, I’m still scanned twice yearly… I’m a different person now to what I was 5 years ago. I think its made me realise how important our life is and to appreciate every minute of it. Yes, it was a battle but I’ve got through it, I’ve met some amazing people along this journey…Including the medical team at Charing Cross, and especially my Endocrinologist (his support has just been amazing). Not forgetting my husband for his continuing support and my family.
Good luck to you, keep positive and be kind to yourself…
Words of advice – Stay off google 😊
Ann Gallon (ACC with Li-Fraumeni Syndrome)
My name is Ann Gallon, I’m 52 years old and was working as a Detective Constable at the time of diagnosis. Pre adrenal cancer I ran 6 days a week. Competing in races; 5ks, 10ks, half marathons, and marathons. Compared to now where I am very fatigued, can’t walk far and just have no energy to do anything.
During October 2021 I suffered from irregular bleeding which my daughter advised me to put in an e-consult with my local GP. The GP decided to send me for an ultrasound since I was under the age of 50 and had a history of breast cancer in 2011. During this – a mass was found and further investigations had to be done.
Over the next few weeks and further scans it was found I had a cancerous tumour on my right adrenal gland. I was told it was most likely secondary to the breast cancer as adrenal cancer is so rare. Only one to two people per million per year being diagnosed.
I had to give blood and urine samples and had many more scans. I was told the tumour had to come out and surgery was scheduled for February 2022.
During this time I sadly lost my mum which in itself was very difficult to deal with.
Whilst at work before my operation I received a phone call from my endocrinologist stating it was looking like adrenocortical cancer (ACC) from the results of the tests. However, this would not be confirmed until after the surgery.
I joined ACC Support UK (AMEND) and their private Facebook Group for ACC. Through this Facebook support group I researched and read all the information (there are not many of us). It was a life-saver to have this group of lovely people who understood. I also read so much information on the AMEND / ACC Support UK websites and listened to others’ stories.
To my surprise my surgeon carried out my surgery by keyhole. I had read that all adrenal surgeries should be done open but I trusted my surgeon. Who wouldn’t? I was told surgery was a success and the tumour along with my adrenal gland was removed. I was put on the oral chemotherapy called “mitotane” which shuts down the remaining adrenal gland making me steroid dependant. I have to carry an emergency steroid injection with me at all times as there is a possibility of me having an “adrenal crisis.” I have my cortisol levels checked regularly and also have routine blood tests.
It was confirmed this was a new primary ACC and was not connected to my breast cancer. Because of this, I was then tested for Li-Fraumeni Syndrome, a rare hereditary or genetic disorder that increases the risk of developing certain types of cancer, including breast and adrenal cancer.
Unfortunately, I tested positive for the very rare Li-Fraumeni Syndrome. My daughter and brother were given the option to have the test which they both did, and thankfully both were negative meaning my granddaughter and my brothers family were also free from the disease. This was a major relief to us all. I returned to work and tried to lead a normal life on my medication.
Then, in June 2023 I was booked in for an ultrasound scan (CT scans are no advised in Li-Fraumeni syndrome). I hadn’t had a check-up since an MRI the previous October. It was the day before my daughter, granddaughter, son-in-law and I were to fly to Orlando for a Disney holiday. I asked the person performing the ultrasound not to disclose anything to me if seen as I wanted to go on holiday and forget.
I had a suspicion something wasn’t right as I was losing weight quite quickly. On my return, I was given the news that a shadow had been found on my liver, and I needed further investigations. Many scans later it was discovered I had tumours in my liver, spleen, stomach, and on the adrenal bed. I was devastated. That meant I was a stage 4 cancer patient.
I remember standing in my parents’ kitchen and my dad saying, “I have lost your mam, I can’t lose you too.”
Meetings were had and it was decided surgery was not an option. I also met my oncologist who didn’t fill me with much hope for the future. I had done my research on my Facebook support group and knew what type of IV chemotherapy was needed and I also knew I was entitled to ask for a second opinion on surgery (respectfully).
I was advised to get my affairs in order, and it was suggested my daughter’s wedding be brought forward. We brought it forward to 7th October and had the most wonderful day. I was so proud to give her away. It was the best day ever. She means the world to me. I had received one round (4 days) of chemo two weeks prior to the wedding and all I wished for was to have hair in the photos. I achieved this although it was coming out in clumps on the morning of the big day.
During the gruelling chemotherapy, which was four days every four weeks, I kept being told it didn’t have a good success rate and to prepare myself for the worst. Four days straight was tough.
Friends of Anchor ‘Aberdeen and North Centre for Haematology, Oncology and Radiotherapy, is a charitable organisation who provide funding for in- and outpatient Wellbeing Services, Medical Equipment and Research, going over and above what the NHS alone can provide. Founded in 1997, the charity is focussed on patient needs within the hospital environment, and their Wellbeing team are on hand to offer a time-out service, and complementary treatments as required. I even had reflexology whilst receiving my chemo. Many of FOC are volunteers and they were amazing! They made my days at chemo that little bit easier.
I requested my surgeon get a second opinion which he was more than happy to do, and he approached a surgeon in Sheffield who is an adrenal specialist. Months went by and the chemo was tough, but I held on to hope for surgery. Sheffield responded requesting up-to-date scans which were done and amazingly the chemo was shrinking most of the tumours, although some had slightly grown. I couldn’t believe when I was told they were discussing my case at their local MDT with the chance of operating.
I travelled to Sheffield with my daughter and granddaughter to meet the surgeon and to have a pre-operative assessment, although the final decision had still not been made. The surgeon went through the many risks of surgery, but I was willing to do anything if it gave me a chance to have more time with my family. I was told I would never be cured but I could be given more time; this was enough for me!
I then got the phone call I had been waiting for – they were going ahead with the surgery. In February 2024 I travelled to Sheffield with my family and went through major surgery. The risks were high. Amazingly the surgeon (my hero) removed 8 tumours all with clear margins. I remained in hospital for 2 weeks recovering. I returned home and ended back in hospital with fluid in my lungs. I eventually recovered and went back to taking mitotane and having three-monthly scans.
If I had not been my own advocate and done my research I would have just been left to carry on. It made me think of just how many others this may have happened to, inspiring me to share my story. Be your own voice – do your research. Medical professionals are amazing and do amazing work but sometimes there are other options than those you are being told about. Request an adrenal cancer specialist as this is such a rare cancer.
Unfortunately, my story doesn’t end on a positive. I have only recently found out I have a lesion on my liver. I’m still waiting for the results of my liver MRI and then a plan will be put in place. Nevertheless, I nearly reached the year mark since surgery in Sheffield which I know saved my life.
I’ll keep being my own advocate and doing the research. The group of amazing people on the ACC Support Facebook Group are my go-to and I hope in turn I give advice when needed. If me sharing my story helps just one person, then that makes me happy.
I just take one day at a time. I have an amazing family support network. I’m very lucky with that. I want to see my granddaughter grow up, so I’ll keep up to date with everything related to ACC thanks to the Facebook group and AMEND/ACC Support UK and continue to fight.
