News & stories Personal stories Tracy My name is Tracy and I was diagnosed with ovarian cancer in October 2018, aged 47. I’m really writing my story because I want to raise awareness to signs and symptoms and to say to women that if we feel that something is not right, please see your GP and please be insistent about getting tests. I really cannot stress this enough. I was going through the menopause and had been for some time, although my GP kept telling me that “I was too young”. My hormonal changes started at age 39; irregular periods, suffering with debilitating migraines, urinary problems and so forth. I had constant bleeding back in 2016 for a period of time and had to have endometrial biopsies taken (which were normal) and ultrasound scans which showed thickening of the lining of the womb. This resulted in me having a hysteroscopy (examining the womb with a telescope, light and camera) and dilation and curettage (removing some womb tissue) to remove a fragmented polyp (a small growth). Things settled down after this. I just knew that I was going through the change (my paternal Grandmother went through early menopause at age 35), but GPs were very dismissive. It was only when blood tests confirmed that I was indeed going through the menopause when I was about 45, that they believed me and started to listen to what I had to say. Up until it was actually confirmed, they just did not take me seriously when I told them that I believed that the changes I was experiencing were due to the menopause. In August of 2018, I started bleeding and as I hadn’t had a period in about a year, I was a little concerned. Initially I wasn’t too worried, although it did bother me that I was bleeding with what seemed and felt like a period after not having had one for so long. I started bleeding the day my family and I moved home, but just thought to myself that it was a nuisance, especially as I thought that I was coming out of menopause, after being period-free for so long. A GP had also told me that the guidance is now two years period-free to signify going through menopause (contrary to other advice and guidance I had received). I had this in my mind and although not convinced by her advice, I thought that maybe it was correct. Having been in our new home for a couple of weeks I took myself off to register with my new GP and took the opportunity of telling her about the bleeding and my history. She was very supportive and understanding and advised me that technically it was classed as post-menopausal bleeding in the absence of a period for a year and that she would refer me urgently to a gynaecologist. In light of my history, she arranged an ultrasound scan for me. While I was waiting for my ultrasound appointment to come through, I was very concerned about how I was feeling. By this time I was finding it very difficult to walk around for any length of time and even cope with normal household chores, as I felt so uncomfortable. After having gone for a walk with my husband and dogs one afternoon and feeling as if I just couldn’t stay on my feet and indeed finish the walk due to the horrible, heavy, uncomfortable feeling in my abdomen, I knew something was very wrong. It was a real effort to even put one foot in front of the other. I had never felt anything like it before. As I was so concerned, I spoke to another GP over the phone to tell her how worried I was and how bad I was feeling. I was already thinking and worrying about ovarian cancer and was very frightened that this is what I had. I told her that I had all the symptoms of ovarian cancer, after she had asked me “what is it you think you’ve got”. She said that she could arrange for a CA125 blood test, if that would “help to reassure me” and went on to ask if I was an anxious person. This attitude upset me very much, as I knew my own body and I knew how I felt and I would have expected some understanding at the very least, about my very serious and understandable concerns. Yes, naturally I was very anxious. After all, who wouldn’t be? By the time my appointment came through for my ultrasound I was still bleeding (about four or five weeks by this time) and knew that something was indeed very wrong. I had started to notice swelling in my abdomen on the right side, which was very obvious when lying down. I was becoming increasingly uncomfortable and very conscious that my abdomen was looking very large. I have four children and I couldn’t even remember feeling that uncomfortable when I was pregnant. I wasn’t able to eat a big meal, as this added to my discomfort and was suffering with intermittent heartburn and nausea. The ultrasound confirmed my fears that something was wrong and revealed a large mass in my abdomen, but the sonographer couldn’t ascertain where it was coming from. This sent me straight into panic. She said that she couldn’t see a blood supply and that it looked cyst-like in nature, but she couldn’t see where it was originating from. I remember lying on the couch for what felt like an eternity, while she scanned my whole abdomen and other organs, watching her face for any tell-tale signs of concern and waiting for her to tell me exactly what was going on. But she couldn’t. I walked out of the consultation room to where my youngest daughter was waiting for me cried, telling her that I have a large mass in my abdomen, my mind reeling from the news and not knowing what I was dealing with. The sonographer recommended to my GP that I have an urgent CT scan with contrast (a dye which helps improve the images) and this took place after about ten days. By this time my appointment with the gynaecologist had come through. The days seemed endless, worrying and waiting to find out exactly what was wrong with me. All sorts of things were running through my mind. The gynaecologist advised me that I had a large ovarian cyst on the right side, which he felt sure was benign. Nothing worrying had flagged up on my CT scan and my CA125 was normal, which was reassuring. He thought that I had a haemorrhagic cyst (a cyst which bleeds and usually resolves as part of the menstrual cycle). However, he said that he wanted to perform a full hysterectomy, because if there was anything sinister going on and I hadn’t had everything removed, then I would have to go in for further surgery to remove everything that was left. My surgeon advised me that I had a low malignancy index (a tool used by clinicians to calculate someone’s risk of ovarian cancer) and that I didn’t fall into the typical categories to have ovarian cancer, but felt that a total hysterectomy was the best way forward. They were to remove the cyst along with both ovaries, both fallopian tubes, the womb and cervix. They would also take biopsies of the omentum (a sheet of fat that lies over the intestines inside the abdomen) and do washings (where salt-water solution is introduced into the abdomen during surgery and then is removed to check for cancer cells) for testing. The news hit me a like a bombshell. I had known that I would need the cyst and the right ovary removing at the very least and the possibility of me needing a total hysterectomy was in my mind, but actually having this confirmed and hearing the news was very scary and made everything feel so real and yet I felt in a complete daze, as though it wasn’t really happening. The thought of major surgery petrified me, let alone the worry of whether I might have cancer. I just wanted to get the cyst out of me and it was horrible feeling knowing that something so large, something that shouldn’t be there, was growing inside of my body. It would cause me pain at times and move about, almost pushing right up under my ribs and all the while I was worried in case it ruptured or I suffered a torsion (where an ovary twists), which would require immediate emergency medical attention. Surgery was booked for nine days after my consultation, on 18 October, the day my husband and I should have been going away for our wedding anniversary on a trip I had booked some months earlier as a surprise for his 50 birthday. This did not give me much time to process everything. I knew that a total hysterectomy was the only way forward, as I did not want to be faced with further surgery if they found cancer and had not taken enough away, but I was still petrified about the surgery and what they would find. I saw the surgeon the day after my operation. He told me that he had also removed my appendix and that the cyst had erupted during surgery. He said that he would write to me with the results if everything was normal, but would call in to the clinic if something was wrong. The telephone call came eleven days after my operation to arrange for me to go in to the clinic. As soon as the voice on the other end of the phone said they were from the hospital, I knew what was coming. This was the news I had been dreading. Obviously they had found cancer, but where exactly and had it spread? Had they removed it all? Would I need further treatment? All these questions were running around my mind and the next week, until my appointment, was spend in an emotional blur. I couldn’t process it. The specialist had told me that they felt sure everything was fine, I was low risk and all the tests indicated that there was nothing sinister going on and yet, here I was, facing the worst news of my life and the news that no one ever wants to hear. In a matter of weeks, I had gone from feeling perfectly fine, to this, a cancer diagnosis. At my appointment they told me that they had found a part borderline, part well-differentiated mucinous tumour in the right ovary. Thankfully everything else removed and tested was normal, but preliminary testing and pathology could not confirm whether the cancer they had found was primary, or whether it had originated from somewhere else, i.e. bowel or breast. I spent the next two weeks following my surgery going back to the hospital for further tests, blood tumour markers and CT scans including my chest and being worried out of my mind about whether I had cancer somewhere else. While all this was going on, my children came home to stay as much as they could and support me. My eldest son would just sit with me and talk to me, to try and keep me distracted and stop my thoughts and fears running away with me. My youngest daughter traveled home regularly from university at the other end of the country to be with me. I tried to keep upbeat and not let me children see how scared I was, but at times it was very challenging. It’s natural for a mother to shield her children from pain and I tried to keep it together for their sakes, but sometimes I just wanted to cry, I didn’t feel strong. I felt weak and battered from surgery, confused, angry, almost defeated at times and I wasn’t sure if or how I would cope. My husband was my rock. He has a different coping mechanism to me and doesn’t always say how he is feeling or show his emotions, but has since said to me that he was very frightened too and of course distraught, but he wouldn’t let that show when I needed him more than ever. These further tests were thankfully and reassuringly normal, but at my next hospital appointment I was dealt with another blow. The specialist gynaecologist oncologist told me that I needed further surgery to remove all my pelvic lymph nodes (small pearl-like glands that are connected to the lymph system and act as filters to bacteria or cancer cells) in case of spread, due to the spillage that had occurred during surgery and that they hadn’t yet determined the type of cancer. I didn’t know how I was going to cope. I couldn’t face more surgery, emotionally or physically. I felt like I was on an emotional rollercoaster and couldn’t think straight. It seemed that every week I was being told more bad news, even with the positivity and some reassurance of other tests being normal, there was still so much unknown about the diagnosis and potential treatment. I anxiously awaited a call from the consultant the next day, who confirmed that I didn’t need further completion surgery (surgery to remove any remaining cancer), as the pathology and further testing had now come back, the type of cancer confirmed and that it was indeed the primary. The cancer had been confirmed as a mucinous adenocarcinoma and apparently it is very rare for this type of cancer to spread to the lymph nodes, so it was decided that I wouldn’t need further surgery. It had been staged 1c1 due to the spillage at the time of surgery and would remain at that stage if all other tests were clear. I cried. I cried with relief that they felt sure that the cancer had all been removed, with relief that I didn’t need more surgery, with relief that it was a the primary and that providing a couple of other tests came back normal, then I would not need any chemotherapy. I was told providing all the tests came back normal, then I would not need any further treatment and will be followed up three monthly for the first year. Hopefully then I can move forward with the knowledge that the cancer has gone and that I don’t need any further treatment. I wanted to tell my story to raise awareness and to urge women to be vigilant with regards to any signs, symptoms or changes that they might be experience. I cannot stress enough how important it is to be aware of any possible signs and symptoms and to not just say “it will go away” or “it’s nothing, it will settle down”. Please be on the safe side and get checked. Above all, be persistent [with doctors]. If my story helps people to be more aware and to seek medical help, then I have achieved something. "One size fits all" does not apply to health. There will always be people outside of the "norm" and their concerns should not be dismissed and should be taken seriously. Luckily for me, my cancer was caught early and I am so thankful for that. Maybe the cyst was a blessing in disguise and had it not been for that, my cancer might not have been detected until much later. Who knows. All I know is that I felt something was wrong, even before the visible signs started to appear. The last four months have been a very difficult time, physically, emotionally, and mentally. Anyone who has had a total abdominal hysterectomy will know full well what the recovery is like, how hard it is and how long it takes to feel anything like "your old self". It is not a quick recovery and the side effects can be difficult in themselves. I was lucky in that I was already going through the menopause prior to surgery, so I haven’t had to deal with a sudden onset of hormonal changes, but I have been suffering with terrible back and hip pain, the usual bowel disturbances associated with this surgery and feeling very low, tired and distraught at times. I am now 4 months post-surgery and only just beginning to feel better in myself and actually starting to feel like I want to do things. These physical symptoms and side effects, coupled with the added emotional and mental effects of dealing with a cancer diagnosis, truly are the hardest thing to endure and my heart goes out to any women having gone through it, is going through it or who will go through it. You don’t realise how strong you are until you have first-hand experience of something like this. Support and guidance, along with information is really needed at this time and it is fantastic that we have support groups and charities such as Ovacome, who work tirelessly to aid women affected by ovarian cancer. When I was diagnosed with ovarian cancer, I wanted to read up about it, find out what I could and read about other women’s experiences and outcomes. Finding something or someone to relate to, who knows what it feels like and who has been through the same or something similar to you, is something you just can’t find any other way and is so important. It make us feel that we are not alone and brings some comfort. Reading others’ stories can be what helps get us through, finding hope and strength and being united in raising awareness. My family have been there for me, have been supportive and helped me through and my husband has been looking after me since my operation (I really don’t know what I would have done without him), but with all the love and support in the world, a cancer diagnosis can leave you in a very lonely place and we need to reach out and support each other and let others know that they are not alone and that together we will get through this.