Posted on 14/03/2019

Ovarian cancer: the stories of three brave women

Ovarian cancer: the stories of three brave women

Over 7000 women in the UK are diagnosed with ovarian cancer each year.

Living with ovarian cancer is all encompassing, but what’s it like to hear that dreadful diagnosis? How does it feel to go through ovarian cancer treatment, and what does this involve? Does treatment work, and do women recover? How does it feel to lose a loved one to ovarian cancer, or to know that your diagnosis is terminal?

We reached out to women across our social media channels and asked them to share their experiences of ovarian cancer with us, in order to raise awareness of this devastating disease. Here, we recount the frank and honest stories told to us by three women: Stacey, whose mother Karen died of ovarian cancer in her sixties; Fi, who has terminal ovarian cancer at the age of just 32; and Sam, who survived the disease after being diagnosed at only 27 years old. You may find their stories of pain, loss and strength emotional to read but we believe it’s important to share them, as they highlight the need for more knowledge amongst the general public and medical profession, as well as further research into the disease.

Ovarian cancer symptoms – “she just knew she didn't feel good”

Ovarian cancer symptoms are not widely known by the majority of women. Many are unaware of the signs to look out for, and some believe that there are NO symptoms of the disease at all. Just one in five women are able to name “bloating” as one of the main symptoms of ovarian cancer. Sam told us that her symptoms were fairly severe but, despite knowing something wasn’t right, she still did not think for a moment she had ovarian cancer, and neither did her doctors.

“I had been diagnosed with polycystic ovarian syndrome a year earlier. I developed a huge lump in my tummy… my periods stopped. Originally I thought I was pregnant! The doctors thought I had a dermoid cyst. I was 27 years old - I didn’t even know about ovarian cancer. I was diagnosed as borderline to stage 1.”

Sam’s diagnosis may have taken some time, but it was caught fairly early and, as such, her chances of survival were much more positive. Women diagnosed at this stage are twice as likely to survive for five years or more.

Stacey told us that, similarly, her mum was unaware of ovarian cancer symptoms but despite multiple doctor’s appointments, and showing three of the classic symptoms presented by the condition, she remained undiagnosed for too long.

“My mom started to develop bloating, gas and an enlarged abdomen. She went to her doctor for two months and her doctor found nothing. One time, her regular doctor was ill so she saw an alternative physician, who felt a large growth in her abdomen. Because of the unusual size, they immediately got her into an oncologist where they discovered the growth was feeding off her uterus and was more than likely ovarian cancer.”

Stacey is still angry that her mum had to wait over two months for her diagnosis, but sadly this is very common. In the UK alone, almost half of women wait at least three months from their first GP visit before receiving the correct diagnosis.

After the initial diagnosis of ovarian cancer, the cancer is then graded and given a stage, which defines how far the cancer has spread already and how likely it is to spread further. Stacey’s mum, Karen, needed urgent treatment due to the late stage her cancer was at.

“This was on a Wednesday and she was in surgery to remove the tumour on Friday. My mom knew nothing about ovarian cancer. She didn't know the signs or have any idea what was happening. She just knew she didn't feel good. The response she always got was to take over-the-counter stuff for gas and the bloating would go down. When my mom had surgery, the cancer had moved to her liver, small intestines, and kidneys. She was graded as 4b.”

Fi was in a similar situation when she was diagnosed at just 30 years old with stage four ovarian cancer.

“My cancer is both incurable and terminal. By the time I was diagnosed my cancer had already spread throughout my abdominal cavity and into my chest cavity.”

Contrary to Karen, Fi was very aware of ovarian cancer symptoms because it runs in her family and yet, for many months, she was told by doctors that her fears were unrealistic and not worth pursuing with tests because she was too young to have the disease.

“I was aware of my symptoms and the risk they posed. I visited my GP weekly with abdominal pain and swelling, the need to urinate on a more regular basis, weight loss and extreme fatigue. I was also experiencing shortness of breath and chest pain… I was dismissed by my GP as being ‘too young’.

“Not to be swayed, in November 2015 I demanded a referral for an ultrasound. It was at this appointment that a mass was noted and I was finally referred to a gynaecologist in December 2015. However, my age remained a barrier and despite the ultrasound results, my symptoms, family history and raised ovarian cancer markers, I was still told that I was not at risk of having ovarian cancer. One month later I collapsed at work and an MRI and abdominal fluid biopsy confirmed my worst fears. I had ovarian cancer, it was late stage and aggressive.”

Pain, scars, chemo and fertility

Sam, Karen and Fi all had to endure invasive, life-changing treatments for ovarian cancer. Sam went from thinking her symptoms may mean she was pregnant, to finding out she would have to have surgery that could take away her opportunity to have a family.

“I was devastated as I had to have both my ovaries removed at the age of 27 and it prevented me from having my biological children. I was more upset about not being able to have children at the time, than the threat of the ovarian cancer diagnosis, however, my amazing surgeon did all he could to protect my womb. I suffered from some setbacks with the surgery; I had an infection and that meant my scar didn’t heal well. It is ugly and I still hate showing it. It’s like a zip!

“I had to take HRT, as I was immediately in a surgical menopause. I found that hard. I also had to go on a very emotional journey to have children, through an egg donor. I now have two beautiful children, but it was tough and I was scared to look into options for having a baby for a long time.”

Stacey’s account of mum Karen’s experience shows just how devastating ovarian cancer is when it is detected far too late, and Karen had to endure many medical procedures, chemotherapy rounds and side effects.

“When my Mom had surgery, her cancer had moved to her liver, small intestines, and kidneys. She was graded as 4b – the final stage. They were able to scrape all of the cancer off the kidneys, do a bowel resection, take some of her liver and gave her a full hysterectomy.

“My mom had probably about 5 different rounds of chemo that never worked; she had numerous blood transfusions, magnesium transfusions, iron transfusions and general fluids given to her. She was constantly having to take nausea medication as anytime she saw food, blood, really anything she would throw up. She was constantly tired with the chemo. Also, about 3 days after the chemo, she would get really unsteady on her feet and wasn't able to do much of anything except sleep. She later developed neuropathy and was put on gabapentin to try to help her walk, but it didn't work. My mom was in a lot of pain.”

Chemotherapy was brutal and simply did not work for Karen, but Fi had greater success with the treatment, despite finding it equally as harsh on her body and everyday life.

“Three weeks after my diagnosis I started standard chemotherapy treatment. I was told that, due to the extensive spread of my disease, this was to manage my symptoms, as surgery would not be an option for me. Imagine flu, food poisoning and your worst hangover combined and you are half way there to experiencing what life on chemotherapy is like. However, miraculously, after just four of the six doses prescribed, my chemotherapy treatment had shrunk my cancer enough for me to be approved for major ‘debulking’ surgery. This is where they aim to remove all visible signs of disease.

“I underwent what was recorded at the time as the largest operation on a UK patient with stage four cancer, and included removal of my spleen, cervix, ovaries, fallopian tubes, womb, appendix, omentum, part of my liver, part of my diaphragm, part of my pancreas and part of my bowel, resulting in a permanent colostomy bag. It was just 5 days after my 31st birthday.”

Thankfully, Fi found she was in remission just a few months after her treatment, but just over a year later, the cancer was back with a vengeance.

“It was now more aggressive, causing my right lung to collapse and an extended stay in the Tayside respiratory ward while they drained my chest cavity. Further tests showed I had new disease on my right lung, next to my kidneys and a large mass right across my pelvis.”

Ground-breaking ovarian cancer research and treatment

Fi turned down the option of more chemotherapy, believing that her body was already weak and that this form of treatment was only extending her life by a matter of months, not curing her. Instead, she opted to pay privately for a drug treatment called Avastin, which helps to stop cancer growing new blood vessels and spreading around the body further. She paid almost £3000 every three weeks through fundraising, and was eventually lucky enough to be the first and only Scottish ovarian cancer patient to be approved for an NHS trial that combines immunotherapy, Avastin, and a parp inhibitor.

“After just two months on the trial my tumours had shrunk by 80%. Now, almost 6 months since starting the trial, I have ‘stable disease’ and my cancer markers are the lowest they have been in over two years. In fact, for the past 3 months they have been in healthy range. This is remarkable considering just over a year ago I was told I had only 4-6 months to live.”

Caring, coping and learning to live

It is difficult for most people to imagine having such extensive surgery and treatment as the 3 brave women who spoke to us, and living with the fear of dying. Whilst cancer is extremely common, with 1 in 3 of us likely to be diagnosed with it in our lifetime, unless it affects us (or a family member) directly we have little idea of the physical, mental and daily effects of living with the disease. Stacey explained that despite her mum, Karen, being older, Karen still had plenty of dreams and aspirations that she wanted to fulfil before ovarian cancer took her life.

“She was a go-getter and loved her job. She was forced to stop working when she got ovarian cancer at the age of 62 and she hated it. She had planned to work until she was 70 years old and had what she called the ‘90-year plan’ ... she planned to live her life to the fullest and live her life until she was 90 years old just like every woman before her in her family.”

Karen Boehns passed away from Ovarian Cancer on 20th February 2017

Stacey found caring for her mother really difficult, and had to deal with Karen’s emotions being directed at her, despite her best efforts to provide as much support as she could.

“I just learned she wasn't angry at me but at the cancer and that I needed to love her unconditionally because that's what she needed. I would talk to her 4-5 times a day to make sure she was ok. I would make sure she ate, she was taking naps, getting out etc. I wrote her letters every day to remind her of our childhood and our younger years together. When she lost her hair, I pulled out my kids pictures and told her she rocked the hair style like my oldest son and sent her the picture. I did everything I could to make her feel better and to raise her spirits even though I was in the line of fire for the most part.”

Stacey and her mother, Karen, at a Lionel Richie concert during happier times

Sam told us that whilst she was fairly lucky in that her cancer was managed effectively and led to her being in remission for the last twenty years, the fear of it coming back still haunts her.

“The waiting immediately after surgery and for the first 3 years was tough. Every twinge, lump, bump was scary. I am always nervous. I am more worried now as I have gotten older. When I got through my first 5 years though, I felt optimistic about my future. Now I have children, I worry about it coming back. But I live for every day now.”

Sam sought help in coping with the trauma of ovarian cancer and her infertility, and has since used her experiences to help other people.

“I went to a counsellor and used meditation to help me deal with the anger and hurt and letting go and grieving. I am a very positive person and practical, I seek knowledge to understand what I need to know to help me bounce back. I try to look at situations like these as a learning opportunity.

“I found a group of women of a similar age who had ovarian cancer in Ireland and we started a charity with the Irish Cancer Society. That helped me. To others who are living with cancer, I say, don’t keep things bottled up, build a support system around yourself and remain as positive as you can - even those with a terminal prognosis should try to fill their remaining days with positivity and joy.”

Sam survived her ovarian cancer because of early detection and diagnosis

Fi has also used her experiences in a positive way, completely changing her lifestyle to enhance her wellbeing, and finding ways to help others do the same, as well as raising awareness of the disease that has altered her perspective on life.

“While my diagnosis doesn’t define me, it has undoubtedly had a huge impact on my life, waking me up to the fact I became more alive in the days, months and years after being told I was terminal. Now I use this insight to share the lessons a life changing diagnosis delivers. The past few years have been an incredible journey of love, health, and connection. I gave up my career as a doctoral researcher and retrained as a yoga teacher in a bid to reduce the stress in my life. To help support other women on a similar journey to me, and those who are caring for them, I have now published a book about my journey with cancer, entitled ‘How Long Have I Got?’ and I really hope it will offer support to many, many people.

“Looking ahead, I am hopeful for the future. My cancer may never be cured, but with advances in treatment and through increased awareness of the symptoms I see a future where less women will be diagnosed with late stage disease and where more women will be able to live longer with their ovarian cancer.”

These stories of positivity, courage and strength help us all understand how living with cancer impacts a person’s life. We urge all women to learn the symptoms of ovarian cancer, share these with their friends and family, and see a GP if anything does not feel as it should. Keep going back to your GP if you have any doubts and keep voicing your concerns.

We are extremely honoured to be able to tell the stories of Stacey, Sam and Fi; we thank them for their contributions to this blog, and wish them every happiness.

If you, or someone you know, have been affected by ovarian cancer or any gynaecological cancer, contact the Eve Appeal.

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