Around 1 in 52 women in the UK will be diagnosed with ovarian cancer during their lifetime. But would you recognise the most common symptoms? And what is it like to go through ovarian cancer?
Debbie and Paula both had two very different experiences of ovarian cancer, from symptoms all the way to treatment and recovery. Read their stories below, shared by our friends at Ovarian Cancer Action – a charity fighting to improve research, funding and support for women with ovarian cancer.
What are the symptoms of ovarian cancer?
If you’re experiencing the following symptoms more frequently and severely than normal, it’s a good idea to talk to your GP:
- Persistent stomach pain
- Persistent bloating
- Difficulty eating/feeling full more quickly
- Needing to urinate more frequently
These can also be symptoms of less serious conditions, like polycystic ovary syndrome, or IBS (irritable bowel syndrome). So these symptoms alone don’t mean you definitely have cancer.
To help figure out what’s causing your symptoms, it’s best to give your doctor as much detail as you can – keeping a ‘symptoms diary’ for a few days or weeks could be useful. Try to include all the detail, even if it’s difficult to talk about. Remember, your doctor is used to dealing with intimate and embarrassing problems, and they should know how to make you feel as comfortable as possible. Plus having it written down in a diary could make it easier to discuss!
To find out more, you can download this free leaflet: Ovarian Cancer: what you need to know.
Debbie’s Ovarian Cancer Story – bowel symptoms, chemo, and a stoma called ‘Bart’
Diagnosed at 46, Debbie is always determined to make the best of any situation. She hopes that by sharing her ovarian cancer journey, from diagnosis through to treatment and surgery, she can help other women in similar situations as well as raising awareness of the symptoms.
“My motto is to always take a negative and make it into a positive. I don’t know what the future holds for me, but I do know that I’m going to live my life to the full and enjoy every minute.
I was 46 years old when I went my GP with bowel-related symptoms; I was needing to go to the toilet around three times a day. I’d had Hodgkin’s Lymphoma when I was 28 and 32 years old, so I was always worried if I noticed any unusual changes in my body. My GP did a CA125 blood test and referred me to a gynaecologist. After a few days, my GP rang me at work to tell me that my CA125 level was 127 (a normal value is below 35). She was worried that it could be advanced ovarian cancer. As you can imagine, I was truly shocked and devastated.
I’m lucky enough to have health insurance so I pushed to have a scan and an ultrasound within a week. Strangely, nothing showed up on either scan. I also had a full body MRI scan which again revealed nothing. Based on the higher levels of CA125, I saw a colorectal consultant for a colonoscopy. It was only at this point that an obstruction in the bowel was found. At the time, the consultant thought it looked like scar tissue from when I’d received radiotherapy for Hodgkin’s Lymphoma. Surgery was planned to remove the blockage.
Unfortunately, after surgery the consultant told us that he’d found tumours in my bowel, appendix and peritoneum. He’d had to perform surgery which included a permanent stoma and appendectomy. He also mentioned that there were small spots/tumours within the peritoneal that he hadn’t been able to remove at the time. The pathology report came through with a diagnosis of stage 3c serous adenocarcinoma, which derived from ovarian cancer.
My family and I were so shocked as we originally thought it to be just scar tissue, but I’m a positive person and I soon came around to thinking ‘OK I’ve got cancer again, let’s deal with it and get treatment as soon as possible’. It was harder for my husband and close family – I think it always is. If you’re the one going through cancer you have to deal with it and stay strong, but for those close to you it must be very hard. I’m very lucky to have a fantastic family and a great network of friends. There was never a day that went by without someone visiting me, phoning for a chat or sending me a text or email.
“It was harder for my husband and close family – I think it always is”
I must say that having a stoma was a little strange at first. I named my stoma ‘Bart’ and my husband and I had so many laughs, which helped take my mind off my diagnosis. In terms of losing my hair, well, I’d lost my hair twice before so I knew what to expect; it didn’t bother me at all. Losing my hair is part of the treatment and at least it didn’t take me ages to get ready in the morning!
I was offered advice through the hospital and counselling through my workplace, but I dealt with it together with my family and friends. I just felt that I had to fight this disease – be strong, positive and enjoy every day. On treatment days, I would enjoy chatting with the nurses and think about how the chemo was killing the cancer. I had down days, everyone does, but my ‘good’ days far outweighed the ‘bad’.
Even so, I found the wait time from my first surgery to the start of chemo frustrating. I know I needed to wait around six weeks after surgery before I could start treatment, but I had changed hospitals and I was constantly chasing. It felt like ages before I started treatment. In the meantime, I had ascites which had to be drained twice. Before chemo my CA125 shot up from 127 to 1245, so I was anxious to start treatment as soon as possible.
I nearly didn’t go to the GP. I hate to think how much worse my diagnosis could have been if I’d ignored the symptoms. How many people are out there with similar symptoms to mine thinking ‘I’m ok, it’s just a stomach upset’? Ovarian cancer is so hard to diagnose in the early stages. No matter how mild the symptoms are, it’s always better to get checked out.
Back in January I was in a position where all cancer had been cleared through chemo and surgery. I was feeling well, started back at work and my hair grew into a lovely new cropped style. Unfortunately my CA125 level starting rising again and I am now back on chemotherapy. I am more determined than ever to pass this next hurdle, be strong, brave and positive. Before I was diagnosed with Lymphoma in 1998, my husband and I enjoyed rock climbing and mountaineering; we climbed Kilimanjaro and trekked across the Alps. The last seven years we’ve been renovating a barn, and we enjoy seeing all our hard work pay off as we finish another part of our dream home. Life is so precious and I’m certainly not going to spend it looking backwards. Onwards and upwards, here I come!”
Paula’s story – ‘Hopefully this has just been a blip.’
Paula Cann was experiencing the classic symptoms of ovarian cancer but she was diagnosed with a cyst that was only removed due to its size. Two weeks later she discovered that the cyst was cancerous and that she needed chemotherapy…
“I’d started needing to wee more often and more urgently. Most evenings I walk the same route around my local woods, but I could no longer make it around without desperately needing the loo.
“And then I felt a lump in my stomach when I was lying down. I wasn’t too worried as I felt really well, apart from some tiredness, which I put down to my hectic job as a primary school teacher.
Even though I wasn’t in pain, I thought it best to visit my GP. She wasn’t overly concerned and thought it was an ovarian cyst. I had a CA125 blood test and a scan that showed I had a large cyst— 18cm by 11cm. At this point they thought it was benign but it needed removing due to its size.
I was told there was a very small chance the cyst was cancerous but it would be safer to have a full hysterectomy. I was 46 and although I have two wonderful children, I also felt sadness that having another child would no longer be an option.
Thank goodness my cyst was too big to ignore, as two weeks later I was told that I was stage 2; as cancerous cells were found in my ovary and on my fallopian tubes. Although they were optimistic it was all removed, I was told I would need chemotherapy to make sure. It felt surreal to hear those words and my husband’s grip on my hand tightened.
The hardest part was telling my amazing family. My siblings were in floods of tears — we have a special bond since we lost both our parents to cancer. I got choked up telling our two daughters, 20 and 17, and my husband had to say the words nobody wants to hear. I did manage to add, ‘although it’s not the best news, it’s the second best and it’s all been taken out!’
“I’m so grateful that I went to my GP as soon as I noticed something wasn’t right”
I think it really hit home when I went for my first consultation. I passed people in wheelchairs, who looked very poorly and some who had lost their hair. We were given time to consider our chemotherapy options; Taxol and Carboplatin where you lose your hair but you get a double whammy of treatment — or just Carboplatin, which allows you to keep your hair. I remember feeling vain worrying about my hair but it’s part of me! However, in the end I decided that my hair would grow back and that I needed to go with the combined treatment.
I had six sessions of chemotherapy and I didn’t end up losing all my hair—just patches. I was initially worried that I’d feel awful throughout chemo but I met a lovely lady during my first session who reassured me it wouldn’t be all that bad; I might feel sickly the first week, the second week would be better and by the third I’d be feeling almost normal – and she was right!
The sickness tablets kept the nausea at bay but I didn’t like the ‘foggy’ feeling I had after each chemo session. I kept telling myself ‘this is temporary and you will get through it’.
Not long after I’d begun my chemotherapy I took a test to find out if I carried a BRCA 1 and/or 2 gene mutation because I was relatively young to have ovarian cancer and because my parents both passed away from cancer (Mum died of lung cancer and Dad of gastric cancer). I knew that if it came back that I was a carrier, it would have implications for my daughters, sister and brother. It was a long and worrying wait but I was delighted to find out that I was not a carrier and myself and my family were at no more risk of developing other cancers than anyone else.
Support from my family, friends and the staff at the clinic got me through — they would have me in stitches!
I finished my last session of chemotherapy in November 2016 and returned to work the following April. People keep telling me how well I look and I feel that good, that I sometimes forget that I even had cancer.
I’m so grateful that I went to my GP as soon as I noticed something wasn’t right and in the words of my consultant ‘hopefully this has just been a blip’ and I can put it behind me. There is so much awareness of breast and other cancers but not ovarian. I hope by sharing my story it may help someone else.”