Katy Stephenson is 47 years old and lives in Bury St. Edmunds. Katy was diagnosed with stage one ovarian cancer last year and she has given us permission to share her story to raise awareness of the disease. We are grateful to Katy for allowing us to do this.
Before my diagnosis, I hadn't even heard of ovarian cancer. That all changed in 2021 when I was given news I never expected - this is my story.
DECEMBER 2020 – NOT EVERYTHING IS AS IT SEEMS
I initially went into hospital at the beginning of December with appendicitis, but a CT scan showed a fibroid, cyst and cell changes in my left ovary and fallopian tube.
JANUARY 2021 – THE RESULTS ARE IN
When I was called back to get my results, to say I was in shock, was an understatement. I didn’t think there was a serious problem as it had been some time since the tests, so I thought “no news is good news”. But I was asked to go to Ipswich Hospital (and because I didn’t realise it was so serious I didn’t have anyone with me), and was told I had ovarian cancer.
BREAKING THE NEWS TO MY LOVED ONES
The life changing diagnosis made me retreat from my family so that I could initially process and accept what I’d been told. Once I had had my operation and started treatment I found that in order for me to deal with the side effects of the chemotherapy I pretty much stayed in bed for 3-4 days in order to recover after each dose.
This had a profound impact on my family as to all intents and purposes my husband was effectively a single parent for a lot of the time, as well as having to run his own business.
THE IMPACT OF CANCER ON MY FAMILY
As I had been diagnosed during the pandemic, and had to have my operation and treatment during that time too, I had to do all of this on my own and as a result I felt very isolated and lonely. My husband found it hard to know how to support me and be involved in a way that made a difference as he was very much pushed to the side lines.
I know my husband felt very lonely too and he would have hugely benefitted from a place where he could go and expressive how he felt about my diagnosis and the impact it had on him. The focus is very much on the patient after a diagnosis, however the impact is on the whole family and that impact doesn’t finish if the patient is lucky enough to go into remission like myself. It still needs to be worked through and Cancer Campaign in Suffolk is a place where people can go to visit and feel safe to chat through what they are, or have been, through and hopefully find a way to move forward.
Due to Covid-19 restrictions, things weren’t easy and I wasn’t able to be treated quickly at Addenbrookes in Cambridge so I was lucky to be able to have private treatment at the Nuffield Hospital in Cambridge. I had a full hysterectomy after which I was given six doses of chemotherapy and I was given the all clear in July 2021. I am now having three monthly CA-125 blood tests to check everything is still ok.
I DIDN’T FIT THE PROFILE OF HAVING OVARIAN CANCER
I wasn’t given the option of having a CA-125 blood test, which would have shown that something wasn’t right. I was told I didn’t fit the profile for having ovarian cancer - I wasn’t over 55 years old and I didn’t have any of the classic symptoms. If I’d been able to have the blood test, my cancer could have been caught earlier. I was just ‘lucky’ that the appendicitis meant it was picked up while they were already investigating my symptoms.
Having said all this, I am one of the lucky ones. Symptoms tend to show in the later stages when it’s too late for early treatment - and normally in women aged 55 and over. However, I did have symptoms six months before my diagnosis and went to my GP with them. I was very tired, getting up at night to wee three or four times, feeling full very quickly when eating, bloated but I had to go several times before I was sent for blood tests. I was told I was fighting an underlying infection and I was a bit anaemic and given some iron tablets. I was also told it was my age and that I was perimenopausal.
I was determined to draw some good from this life changing experience. Although treatment during the Covid-19 pandemic was far from easy, a successful operation and a continuing course of chemotherapy has meant my prognosis is good.
THE IMPORTANCE OF AN EARLY DIAGNOSIS
I greatly benefitted from an early diagnosis and quick treatment and I strongly feel that I want to give something back to raise awareness of ovarian cancer. One in 50 women will be diagnosed with this particular cancer in their lifetime, while one in five of these will have it diagnosed too late for treatment. More funding is urgently needed and it’s important that symptoms aren’t ignored or passed off as other conditions. We know our bodies better than anyone else and are best placed to say if something isn’t right.
If you’re experiencing regular symptoms that could be ovarian cancer, keep asking questions and if necessary ask your GP for a CA-125 blood test. It’s vital that an early diagnosis is picked up so don’t be put off if you think something isn’t right.
The early symptoms of ovarian cancer are :
• Persistent bloating (not just the feeling you get when you’ve over done it with a big dinner!)
• Feeling full quickly (literally after a couple of mouthfuls)
• Pelvic or abdominal pain
• Urinary symptoms (needing to wee more often)
FRIDAY 30TH SEPTEMBER - MY CANCER IS INCURABLE
Well the latest news isn't what I was expecting. My last CA-125 blood test showed that the cancer has come back. A recent CT scan has shown that it is stage 3 and has returned within my abdominal cavity.
I saw my oncologist on 28th September and she has confirmed that they can operate. My surgery is booked at the Nuffield hospital in Cambridge for 24th October. I’ll be there for 5-7 days then I'll be recovering before starting six doses of chemotherapy - again at the Nuffield. I've been told my cancer is incurable as they can’t guarantee it won’t return. I was initially very shocked and upset that the cancer had returned and I've found it really tough to get my head round it all. It was also really hard when my husband and I told the kids. My son Jack said ‘you’ve beaten it once mum, you can do it again’.
I think it's worth me getting the message out here, that it's critical people with a cancer diagnosis are constantly monitored to spot re-occurring cancer so that it can be treated again as soon as possible.
APRIL 2023 - FEELING GRATEFUL
I am feeling very lucky as I have started the new maintenance drug Olaparib – a targeted drug called a PARP inhibitor. PARP is a protein that helps damaged cells to repair themselves - Olaparib stops PARP working. This targeted treatment aims to stop my cancer from coming back for as long as possible. The reason I can take this drug is due to charities who raise money for research into ovarian cancer, which enables women with this insidious disease to live longer.
To be honest I have been somewhat nervous/anxious about taking more medication, having just finished chemotherapy and how my experience of it, the second time around, having been much worse due to the side effects. I just wanted some breathing space before more chemicals were administered. However, I have been taking it for a few days and I am feeling ok. The side effects they warned me about are fatigue, dizziness, diarrhoea, changes to your taste and loss of appetite amongst others. So far so good.
My scans have come back all clear and I am back at work part time so I am hoping this phase of good health continues for as long as possible.
(Cancer Campaign in Suffolk will continue to follow Katy's story)