Written by Standard Issue

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Targeting Ovarian Cancer

As part of a series during Ovarian Cancer Awareness Month, we talk to two medical professionals who have seen the disease from both sides.

hilaryDr Hilary Morrison took early retirement after 30 years as a GP following her diagnosis with ovarian cancer at the age of 54. She is a member of charity Target Ovarian Cancer’s GP Advisory Board, which is working to increase early diagnosis of the disease. Hilary is married to a doctor and is the mother of two adult children.

I was diagnosed with ovarian cancer in the summer of 2013. I had all the warning symptoms: bloating, lower abdominal pain, passing urine more often, feeling full and change of bowel habit but they weren’t preventing me from doing things. That’s the trouble with ovarian cancer symptoms: they’re there but they’re not devastating. GPs are the worst patients, as doctors are always too busy looking after everyone else to think about themselves. There are always patients to see; the show has to go on.

When I eventually booked an appointment on my next day off the GP found a large ovarian cyst and sent me for a scan. Unfortunately things developed very quickly and I had emergency surgery that weekend.

The diagnosis was such a shock: you just don’t know what to think. You don’t see it coming, you’re just the same as everyone else. I was a completely shocked, horrified patient. I was terrified and didn’t know where to turn.

I’d been sitting on my symptoms for quite a while so when I was diagnosed I was at a late stage (3C) with a poor prognosis, which is why I took early retirement. Things initially looked very grim: I was told I’d be lucky to live a year, so my life and my family just fell apart for a while. I was put on a trial regime of weekly chemo and because they couldn’t remove the entire tumour they gave me a drug called Avastin for a year as well.

The diagnosis was such a shock: you just don’t know what to think. You don’t see it coming, you’re just the same as everyone else. I was a completely shocked, horrified patient. I was terrified and didn’t know where to turn.

My chemotherapy finished in August 2014. Soon after, I tested positive for a mutation in the BRCA gene. About 15 per cent of women who develop high grade serous (one of the more common forms) or endometrioid ovarian cancer have a mutation of either their BRCA1 or BRCA2 gene. The BRCA mutation also puts you at very high risk of developing breast cancer and nine months ago I had preventative bilateral mastectomies.

I have not needed any further treatment for my ovarian cancer yet and have done much better than I expected to. I know I’m not cured though. I’ll be back on treatment at some point so I just take it day by day. I don’t think you ever get your fitness back completely but I was able to keep active during treatment.

I’m fairly pig headed, which is probably why I continued going to work with the tummy pains and other symptoms rather than seeing my GP earlier when I was first diagnosed. I regret this very much as if I had sought help earlier my cancer might have been diagnosed early enough to be curable.

You can feel very lost and alone when you are diagnosed. Target Ovarian Cancer offer a lot of support to  women. Even though I used to be a doctor I’m human like everyone else and have the same needs and fears.

I got to know Target through a really helpful get together day where they arranged for a medical expert to speak about ovarian cancer. That may sound surprising but even though you’re a doctor, you’re not an expert. As a GP you have a good, safe knowledge of everything but you can’t know the ins and outs of all the treatments. That’s not what you do.

I got to know a lot of women through the charity. They really do involve the patients in a really positive way, which I thought was great. They’re also doing a lot to increase awareness among GPs. Before I was diagnosed I completed the GP online learning modules which Target Ovarian Cancer introduced. I think about a third of GPs have done it now, which might not sound like a lot but it adds up to thousands of doctors.

One of the women I met through the charity encouraged me to get involved. It gave me something to focus on and gave me hope that something good might come out of this. There are nine people on the Advisory Board including GPs, doctors, a practice nurse lead and an oncologist. It really just boils down to trying to put our heads together and think what else can be done to make doctors more aware of ovarian cancer so we can get the message out to them.

75% of women with ovarian cancer are diagnosed when they’re incurable but if it’s diagnosed early then 90% of cases are curable. That’s a pretty strong argument for a big effort by everyone.

Ovarian cancer isn’t something GPs diagnose often. In my 30 years as a doctor I think I diagnosed three or four cases. To be fair to GPs you have to deal with everything, which means that your mind becomes a massive radar of diagnoses.

You do hear a lot about people being fobbed off with a diagnosis of Irritable Bowel Syndrome (IBS), which is something you see a lot as a GP, but IBS isn’t something you usually see as something new after 40. If symptoms of ovarian cancer are new and they’ve persisted for more than three weeks then it should be considered.

If you’re worried that you may have ovarian cancer tell your GP when you see them. Sometimes it might not be something they’re thinking of straight away. Only 3% of women are confident in what the symptoms are so you can see how months could pass by before visiting the doctor. There isn’t a screening test as such: you just have to be aware of the symptoms.

Another thing that Target are trying to do is convince the Government to start a high profile campaign about the symptoms of ovarian cancer. Campaigns like that really do make a difference. We’ve seen it with smoking, drink driving and breast cancer. 75% of women with ovarian cancer are diagnosed when they’re incurable but if it’s diagnosed early then 90% of cases are curable. That’s a pretty strong argument for a big effort by everyone.

It’s also really important that women know that a cervical smear isn’t a test for ovarian cancer. You wouldn’t believe the number of women who think if they’ve had a smear that they’ve been checked.

Even my mother said to me, “Why didn’t you go for your smears?” I did!

AlisonDr Alison Farmer, 55, is a practice educator in Psycho-oncology in Southampton. She was diagnosed with ovarian cancer when she was 40. Alison teaches on the psychological aspects of cancer and helps patients deal with the psychological aspects of the disease, and has worked with charity Target Ovarian Cancer to produce helpful and informative guides for patients. Alison is married and has a 11-year-old daughter.

I had very subtle symptoms when I was around 40 and went to my GP. I had a bit of mid-cycle bleeding, which isn’t one of the usual symptoms of ovarian cancer.

My GP told me ‘all women get that’. I think it was only because I was a nurse that I knew that wasn’t true. She reluctantly said I could see a gynaecologist who referred me for a hysteroscopy (that didn’t show anything) and an ultrasound, which showed a 5cm mass. Everyone said it was a benign cyst but the policy was to remove it. I had it removed and was told everything was fine. A week later, the consultant rang to tell me it was cancer.

I was the only one the whole way along who thought it was cancer. The diagnosis didn’t surprise me, it just surprised everyone else. I feel it was only my knowledge of medicine that pushed me to get a diagnosis. I suspect a lot of women would have accepted the first assessment that everything was normal.

I wish we were more like the U.S. where women tend to have a yearly gynae check. Lots of women don’t tend to get round to visiting their GP until the symptoms are really impacting on them. There definitely needs to be more work carried out in that area. I had to have surgery and chemotherapy because the tumour had burst and my cancer was stage 1C. Chemotherapy was recommended and I decided to opt for it as I was keen to go for every option available.

At the time I was diagnosed I’d been studying the psychological aspects of cancer for many years. Tongue in cheek, I referred to my PhD as work experience. Having your ovaries removed has an impact on your femininity in much the same way as having a breast removed. I still have quite nasty scars and would be reluctant to wear a bikini, for example. Also the loss of your ovaries effects your hormones.

I was the only one the whole way along who thought it was cancer. The diagnosis didn’t surprise me, it just surprised everyone else.

I found my knowledge about relationships and how they can change – close friends can disappear – really helpful because that did happen to me. I knew there was an explanation: close friends often can’t handle the distress. Other things did surprise me though. I was offered a clinical trial when I had chemotherapy and even though I had written patient information leaflets myself I couldn’t process the information. I ended up saying “no thank you”, which I find strange in hindsight because I know there are advantages to going in for clinical trials but your anxiety levels are so huge at the time.

I worked all the way through my treatment because I didn’t want to look or feel like a victim, but now I think why didn’t I take the opportunity to watch all of those black and white movies and read magazines? My treatment lasted six months. I had check ups for about seven years afterwards and then they just said to come back if I was worried.

I had my daughter two years after chemo. I didn’t have children before my diagnosis, which is why the impact was so devastating. My surgeon was fantastic and knew I was still hoping to have a child so he let me preserve my uterus, which is unusual. My oncologist in charge of the chemo was fantastic too: she still sends my daughter birthday presents.

After my illness I worked at Southampton University for eight years teaching the psychological aspects of cancer. I recently decided to go back to nursing because I missed patient contact. I had been an A&E nurse but went into cancer nursing as I knew the theoretical background and wanted to use that. I’m now an oncology nurse giving chemo and I’m about to start as a clinical educator. I’m hoping to improve the psychological care of patients, which in general is very poor.

Nursing is an incredibly busy job and sadly even I, with my experience, don’t have time to sit down and have an in depth conversation with a patient about how they’re feeling. I think there’s a lot we could do to improve that. The majority of patients don’t want formal psychological support, they just want someone to listen to them and reassure them that what they’re feeling is normal.

I worked all the way through my treatment because I didn’t want to look or feel like a victim, but now I think why didn’t I take the opportunity to watch all of those black and white movies and read magazines?

I want to give more lectures to nurses about what represents a normal cognitive response to a cancer diagnosis. Most patients will be angry, some will be depressed, some will be in denial and some will be very positive.

I was introduced to Target Ovarian Cancer very early on by my gynae nurse specialist. Because of my background in health psychology and psycho-oncology they asked me to contribute to their guides for women, wearing both the health professional and patient hat. They also get me to do fun things like talk to donors at Coutts private bank.

Breast cancer has had the lion’s share of research money over the years. Because of the significance of the breast and its links to sexuality, motherhood and self esteem, breast cancer has definitely had the most attention. Because of that the breast cancer mortality rate has fallen dramatically over the last 20 years so I don’t think it’s a bad thing – I just wish other cancers got the same attention.

For more information on ovarian cancer and the work of the charity both Hilary and Alison are involved with, visit www.targetovariancancer.org.uk.

Click here to read our interview with Target ambassador Susan Calman.

 

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Written by Standard Issue