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 😊