GET SUPPORT GET CONNECTED Your Voices Dafina What cancer were you diagnosed with? Womb Cancer What age were you diagnosed? 35 What has helped you to thrive? My passion to help others and save lives. Also after the horrifying experience, I faced the reality and I’m happy and blessed to be alive and I won’t let cancer ruin my future Dafina's Story Everyone has a story, and this is mine. My name is Dafina and I’m 39. Four years ago, I was living a normal life and doing all the normal things that young people do; working on my career, long hours in the office, travelling, making friends and generally enjoying life. But while I was planning my future, I didn’t know that my life was already in danger. I had no idea I was carrying a growing tumour, eventually weighing 500g. In July 2014 I started becoming very bloated, which was unusual for me. I saw my GP almost 4 months in a row, but she didn’t touch or examine my abdomen even once and instead sent me to see a gastroenterologist to have my stomach checked. The gastroenterologist didn’t discover anything either and I tried to continue with my life as normal but with the constant bloating. Not long after I went on a holiday to California. As most of us do, I love taking photos when I travel. But this time I started noticing that I looked very different in the photos, I looked drained and exhausted. I even asked the friend I was traveling with not to take any photos of me because I was so worried about the way I was looking. I even started avoiding the mirrors in bathrooms. I started wondering why. “Am I getting older?”. “What is going on with me?”. While I was still on this holiday I bled between my periods; because this had never happened to me before I put it down to the change of climate and travelling. But the month after my holiday in California I again started bleeding between my periods and then I knew that something was not right. I went to see another GP who referred me to a Gynaecologist. However, in the next few days I had to fly to Macedonia to surprise my sister for her birthday and I was still waiting for the gynaecologist appointment in London. As soon as I arrived in Macedonia, I booked to see a private gynaecologist. The gynaecologist there did a proper check-up including a transvaginal ultrasound (complete pelvic examination) and quickly discovered that I had a huge tumour on my uterus, 14cm long. She advised me to have it removed immediately. I was booked in for an operation in 4 days’ time. I was terrified that I would need to have a big operation and the only thing that gave me the strength to proceed with it was that I wanted to protect my uterus so I could still have children one day. After the operation was done, I woke up in intensive care and immediately had to do an X-Ray on my chest which nobody explained why at the time. After the X-ray I was brought to my recovery room in the hospital where my family was waiting. I was looking forward to seeing them but as soon as I entered the room, I could see they looked so concerned and worried. When I asked them why, my mum told me that they were waiting for the results of the tests which alarmed me. A few minutes later the surgeon entered the room and told me the life changing news. “You have a stage 2 womb cancer and it has spread to your ovaries”. I was devastated and so afraid of what I would hear next... ”Will I survive or do I have just a few days to live?” The surgeon advised me that I must go back into surgery that very evening to remove my uterus and my ovaries, actually to have a total hysterectomy, in order to save my life. WOW! That was the second item of shocking news that day! This sentence meant the plans for my future, of having my own big family one day, had completely disappeared. I discussed all the options with the surgeon and asked if I could freeze my eggs but as I had a very rare type of cancer called Leiomyosarcoma which was oestrogen receptive, this option was out of the question. Since that day I’m not able to have my own children and after the operation I was put into immediate surgical menopause. It’s been 4 years since then and every day I have to deal with the consequences of early menopause, such as: hot flushes, night sweats, mood swings, and osteopenia (lower bone density). I am only 39! But I am happy that I am still alive and I can share my story with you. What happened to me I wouldn’t want to happen to anyone else and especially as this can be prevented simply if detected earlier. Sadly, more and more often we hear that women and girls in the UK are diagnosed too late with some type of Gynaecological cancer. Every year in the UK over 21,000 women are diagnosed with one of the 5 gynaecological cancers such as: Womb (9,300), Ovarian (7,300), Cervical (3,000), Vaginal (240) & Vulval (1,300). At the moment in the UK the only available test for our reproductive health is the Smear test which is very important, but this test detects the likelihood of only 1 type of gynaecological cancer which is cervical cancer. 3,000 women are diagnosed every year with cervical cancer but over 18,000 are diagnosed with the other 4 types of cancers. I wonder how many of these women were diagnosed too late? I had my Smear test which showed that everything was normal a few months before my diagnosis of womb cancer. If I had a chance to see a Gynaecologist at least once in the previous years and had a full check-up such as a transvaginal ultrasound my tumour, which grew to 14cm long and weighed 500g, would have been discovered much earlier and I would have had a chance to remove it before it spread to my other organs. Currently, the UK’s approach to healthcare is reactive, not preventative. The system is symptom-driven, which relies upon us discovering an issue ourselves and then going to our GP. But what if it is already too late by the time the symptoms start to show? In the UK, going to a Gynaecologist is not normal practice and we don’t even talk about it. But yearly gynaecological check-ups are a very normal thing in lots of countries in Europe and worldwide. If this also becomes normal policy in the UK it will save many lives by enabling the early diagnoses of gynaecological cancers that have no screening programmes and also pick up a range of conditions and complications that significantly affect a women’s quality of life (e.g. endometriosis and fibroids). Annual gynaecological check-ups will give every woman a chance to freely discuss with a specialist the issues important to us all; periods, sex, contraception, fertility, pregnancy, menopause, HRT and osteoporosis, which will hopefully break the taboo around these subjects. To make this happen I started a petition for Yearly Gynaecological Check Ups in the UK for all women from adolescence.