In May 2009 I was diagnosed with stage 3c ovarian cancer. I was 43. Stage 3c is advanced; I had secondary tumours throughout the abdomen and on the surface of the liver. There is a 20% survival rate for women who present with advanced ovarian cancer but I was too young to die so I had to find a way to fight it.
I’d suffered from pain during intercourse for many years but had put this down to a position that didn’t agree with me. Looking back, I also remember it being painful if I pressed my belly-button. The first real symptom was a very mild and intermittent pain on the lower right-hand-side of the abdomen, just inside the pelvis. As it was so mild and there was so much going on in my life at the time: separation, moving house, selling the family home and finally divorce, the pain went on the back burner. Indeed, I thought it was most likely to be grumbling appendicitis. Perhaps, as a woman, I didn’t want to imagine there could be anything wrong with my reproductive organs. However, as time went on the pain was becoming more intense and more frequent. After 12 months, it finally became unbearable during menstruation so I went to the doctor.
The company I worked for had arranged for private medical insurance for all its employees so I was referred immediately to a consultant gynaecologist at the local private hospital. She performed an internal ultra-sound examination but had trouble finding my ovaries. I remember her saying that I seemed ‘to have a lot of gut’ which was making things awkward for her. This was a strange thing to say as I was very slim. Eventually she gave up; telling me that she was satisfied there was nothing wrong as any problem with the ovaries is normally very obvious.
Over the next few months I felt more and more unwell and yet I convinced myself there was nothing wrong as I had just seen a consultant. I began to put on weight around the lower abdomen; well I was 43 and had to expect some ‘middle-aged spread’. I was feeling a little tired and despite training for a skiing holiday did not seem to be getting any fitter; well it was winter and I was under pressure from work. An odd feeling in my stomach I put down to indigestion and went out to buy some Gaviscon. During the skiing holiday I fell badly on my right shoulder so the pain below my right diaphragm was blamed on this.
I began to start needing the toilet in the night; not something I was used to, and yet I didn’t pass much urine. When getting out of bed it felt like my guts were heavy and getting left behind as I stood up, almost as if there was water surrounding them. My whole belly was looking very swollen. I went back to the GP who suspected a urinary tract infection combined with Irritable Bowel Syndrome. Despite being unconvinced I began taking the tablets, but a few days later diarrhoea started and it wouldn’t stop. A different GP then told me I had gastro-enteritis and that my gut was full of gas and not, as I thought, fluid: I would be fine in a couple of days.
A couple of days came and went and I was getting worse. My mother had died of an unknown cancer in 1994 at the age of 62. Her initial symptoms were a pain in the lower abdomen, a swollen belly and constipation. It did cross my mind that perhaps I had cancer but I had diarrhoea not constipation so perhaps it was just some sort of infection. Back at the GP, I asked for a second referral to the private hospital but this time to see a consultant specialising in gastric problems. The GP said I could have the referral but in his opinion I would be better by the time the appointment came through!
By now, I was getting desperate. The pressure from the swelling in my stomach was making it very difficult to eat or drink. I rang the hospital to ask if they’d received my referral. No, they said. Next call, the GP to ask what the delay was. He was very sorry but he’d been too busy to write out my referral but he would now do it straight away! A few days later I was sitting in front of a very confused consultant. He thought it maybe something like an infected appendix but recommended a colonoscopy as a first investigation. I asked him if he thought it might be cancer but he assured me that was most unlikely as I was not high risk, i.e. young, fit, ate a healthy diet and didn’t smoke.
The colonoscopy proved negative so a blood test was carried out and a CT scan was arranged for me a few days later. At the follow up with the consultant, I was told the bad news. The best approach now was to go back to the NHS so he had organised an appointment with the appropriate gynaecology consultant. It was then that I realised that there are different specialities within gynaecology and only a fraction of consultants do private work. The gynaecology consultant I had seen several months earlier was not the best person to deal with an ovarian complaint. Therefore despite being seen faster through private channels I would have been better staying within the NHS to see the most appropriate consultant.
The first thing that had to be done was to remove the fluid, or ascites, from within my abdomen. A drain was inserted under local anaesthetic through the abdomen wall, or peritoneum. Twenty-four hours later three litres of fluid had been collected and a sample was sent off to the lab with a view to doing a biopsy on any cancer cells found. I was then sent for a chest CT scan which was negative and finally for a needle biopsy to obtain cells from one of the tumours as no cancer cells had been found in the ascites. All this was necessary to ensure the cancer was definitely ovarian and to determine the stage of the disease. The treatment regime can then be decided upon; surgery or chemotherapy. The problem for me was that the tests weren’t happening particularly quickly. I had watched my mother deteriorate very quickly whilst in hospital undergoing tests and ultimately she died without any treatment. I didn’t want the same thing to happen to me so I asked for tests to be brought forward and where possible, they were.
At the time, despite being scientifically trained with a PhD in molecular biology and six years cancer research experience, I just wanted to switch off from my illness. I had been very active and fit just a few months previously and now suddenly I had a life threatening disease. I didn’t want to think about it. I just wanted to be told what was happening and to get on with treatment as quickly as possible. One of my friends who still worked in science, printed out all the information she could find about ovarian cancer from the Cancer Research UK web site. To begin with, I couldn’t face reading it but eventually, I found it within me to do so. My friend then told me that I had to take control of my own treatment. I had to find the best place to get the treatment and the best person to administer it.
Whilst waiting for the test results my gynaecologist explained that treatment for ovarian cancer is the same throughout the UK with one exception: at the Marsden in London aggressive surgery is performed in an attempt to make the patient disease free. The recovery time is so great that she felt this was the wrong approach to take as it ‘eats into quality time’. Was she telling me that I was terminal? I wasn’t going to accept that. I wanted to get better. However, in her opinion, everyone has access to all chemotherapy clinical trials within the UK so it really didn’t matter where I chose to have my treatment. This, I discovered later, was not true.
The tests were finally completed and it was decided that I should start chemotherapy as my disease was too advanced for surgery. I had to wait a few more days for an appointment to meet my oncologist. At this meeting I was told that I already had stage 4 disease, as I had tumour in my liver. Stage 4 is the most advanced stage of ovarian cancer. I couldn’t believe it; in fact, I wasn’t going to believe it. It was then explained to me that there was a waiting list for chemotherapy and I needed one more test; a GFR test to determine how efficiently the kidneys work, and hence what dose of chemotherapy can be prescribed. I felt shattered: more delays.
Two days later the oncologist was on the phone. An expert had looked at the films taken during my CT scan and had decided that the disease was on the surface of the liver and not in it. This made a huge difference as the stage of my disease could now be downgraded to 3c; still advance cancer but not in its final stages. She also explained that the histology suggested that the cancer was endothelial in origin and of an undifferentiated cell type. Until then it hadn’t even occurred to me that there were different cell types within an ovary and that each one has the potential to become cancerous. The endothelium is the lining of the ovary rather than the actual cells that produce eggs. Despite this oestrogen receptors were found on my tumours suggesting that oestrogen may be responsible for driving the cancer. That the cancer was undifferentiated meant it was the most aggressive type of cancer with the worst prognosis.
Satisfied that treatment would be the same anywhere within the UK I attended my first chemotherapy session at my local hospital. I had become really very unwell but two weeks after starting chemotherapy my health improved significantly. I was, once again, able to go for walks, go out for meals, enjoy the company of friends and play with the dogs. Yes, there were side effects; I lost my hair, occasionally had a sore mouth, suffered from tingling in my fingers and toes and felt tired but I was never sick and I didn’t lose my appetite. The benefits of chemotherapy far outweighed the problems encountered with the side effects. The reason I was tired is that the drugs attack the bone marrow; the blood cells that fight disease and those that carry oxygen to your organs are destroyed. It takes about three weeks for these to recover and hence there are normally three weeks between each chemotherapy session. If the cells don’t recover in time chemotherapy may be delayed. However, it is fairly normal to get a red blood cell transfusion from time to time to prevent the onset of anaemia.
The blood marker CA125 is used to assess how an individual with ovarian cancer responds to the chemotherapy. Immediately before starting chemotherapy my levels of CA125 were 1700. Anything greater than 1000 is said to be a good indication that a patient has ovarian cancer. However, this is not a measure specifically for ovarian cancer but of general inflammation within the abdomen. Therefore, levels can be raised after surgery or if there is a problems with your liver, etc. Normal levels are very individual but usually no greater than 35.
Finally, I started reading books. Real life stories about how people overcame cancer.... ‘Your life in your hands’ by Jane Plant was lent to me by another friend still working in science. She describes how she had breast cancer that reoccurred five times. A scientist herself, she sat down and tried to answer why she was suffering with the disease and why it wouldn’t go away. Having realised that the Chinese and Japanese do not suffer such a high incidence of the disease as we in the western world do, she compared their diet with ours and realised that dairy products are the big difference. She immediately cut out all dairy from her diet and never suffered another bout of breast cancer. What’s more, of all the women with breast cancer she subsequently recommended her diet to, only those that went back to eating dairy, suffered a reoccurrence of their disease. The big thing about dairy is that it’s packed full of oestrogen. As oestrogen is also a driver for ovarian cancer I decided I had nothing to lose and stopped eating dairy myself. My friend, who was brought up in Australia, told me that her father was a GP and believed strongly that a dairy-rich diet was a factor in many diseases, not just cancer. Most of his patients who he recommended to cut dairy from their diet overcame their illness. He came under attack from the local milkman who went as far as trying to run him over in the street! It was interesting to read a recent article in a British newspaper which stated that the Australian government is now recommending that all ovarian cancer sufferers cut dairy products from their diet.
In the meantime another friend told me about his wife who had had a low grade lymphoma for many years. She has never been cured but the disease has never advanced and she believes it is due to her regular visits to a local kinesiologist. This is someone who specialises in a type of complementary medicine that uses the body’s energy to determine which herbal remedies to prescribe for any given ailment. Its roots are in ancient China and whilst the methodology is difficult for me, as a scientist to come to terms with, herbs do have proven medical benefits. Indeed, the chemotherapy drug paclotaxol is derived from the Yew tree. At the end of my session, which lasted an hour and a half, I was told that my disease arose due to an imbalance in the female hormones; oestrogen and progesterone. In particular, my body had never produced enough progesterone. I was recommended to take wild yam cream; a natural way of providing the body with more progesterone, Agnus castus; a herb which balances the female hormones and vitamin E. This combination should stop my cancer from progressing.
Having read a book about a breast cancer survivor, I went in search of a book about an ovarian cancer survivor. ‘Beating ovarian cancer – how to overcome the odds and reclaim your life’ by Chris Bledy is packed full of useful information and advice. She begins by listing the symptoms: Increased abdominal size, Bloating or discomfort, Changes in bladder function, Constipation or diarrhoea, Shortness of breath, Fatigue, Unusual weight gain or loss, Vaginal bleeding, Pain with intercourse and Pelvic pain. Not all these symptoms occur together. Different people experience different combinations of symptoms. The big problem is that many of these symptoms relate to other problems and your average GP will confuse them most commonly with IBS (irritable bowel syndrome). With the increasing obesity issue it is now much harder to asses unusual weight gain or bloating. Bear in mind that if you have these symptoms it doesn’t mean that you have ovarian cancer but if you are worried ask for a CA125 blood test or better still a CT scan and if your GP refuses go private, they cost in the region of £500.
The most important piece of advice Chris Bledy could give anyone was to make sure, that once diagnosed, you are seen by a consultant Gynaecological Oncologist. A gynaecologist may be very good at their particular speciality but they are not trained specifically to deal with cancer. To give yourself the best possible chance of survival you will need an operation to remove as much cancer as possible. Chemotherapy alone will not cure you.
My gynaecologist had intimated that I may qualify for an operation post-chemotherapy depending on how much tumour shrinkage occurred. This would be assessed by a repeat CT scan. Despite having more experience with ovarian cancer than any other gynaecologist in the local area, she was not a gynaecological oncologist. I suspect she only ever intended to give me a hysterectomy, leaving the rest of my tumours in place. I knew I had to find a good gynaecological oncology surgeon; but how? I asked a friend who had recently travelled for a private hip operation how she had found her surgeon. She explained it had been through a medical friend of hers who she put me in touch with. As a coincidence, he is an ovarian cancer oncologist working in the Midlands. We chatted on the phone; I explained my background and everything that had happened to me. He was shocked to hear that I was not diagnosed during my internal ultra-sound investigation, explaining that when the ovaries are not visible it is a sure sign of ovarian cancer. Upon his recommendation I found myself travelling to Birmingham for a consultation with a gynaecological oncology surgeon. I did decide to use the private medical insurance provided by my employer but it is possible to be referred within the NHS to any consultant in the UK by a letter from either a GP or hospital consultant.
By now I had had four cycles of chemotherapy. A CT scan was performed and the results showed that whilst the chemotherapy had worked well (my CA125 levels were down to normal) there was still significant disease around the reproductive organs, on the surface of the liver and on the diaphragm. Indeed, there was also a question mark about whether or not the bowel was involved and this would not be resolved until surgery was underway. Despite the amount of disease still present the surgeon was happy to arrange a date for the operation and explained he would have colleagues with him: a bowel surgeon and a liver surgeon, with the aim of making me disease-free. The size of the tumours still present was quite alarming and a good demonstration that the CA125 level cannot be correlated with the amount of disease. Chemotherapy alone was never going to cure me. Without the operation, how much time would I have before I, once again, became quite unwell?
I was to have only one more cycle of chemotherapy prior to the operation, allowing me to have a further three post-op. Further chemotherapy is necessary to kill the disease that is not visible to the surgeon. Back home, my consultant oncologist was shocked to hear that the team in Birmingham considered my disease to be operable. She went on to tell me that one lady she had sent to the Marsden in London had been under the knife for so long that the surgeons decided to leave the tumours on her diaphragm in place, so as not to place her under any more stress from the general anaesthetic. This is indeed the most difficult part of the whole procedure but not what I wanted to hear!
The next book I read was Lance Armstrong’s ‘It’s not about the bike’. A fabulous read and a book I would recommend to anyone who needs support with getting through a difficult medical problem, especially cancer.
Five weeks following my fifth cycle of chemotherapy, my blood counts were good enough for surgery. The evening before the operation I was visited first by my anaesthetist and then by my bowel surgeon who explained about colostomy bags. Naturally, he hoped this wouldn’t be necessary but if one should be required, he would try to ensure it was reversible. In this scenario, the bag is in place for between three and six months at which point a second round of surgery is required to remove the bag and reconnect the bowel. A specialist nurse then appeared to put a pen mark on my tummy for the best position for the colostomy bag. Finally, my gynaecologist paid me a visit in order to go through the details of the operation and to ask for my signature. After all this I very much doubted if I would get any sleep that night but somehow I managed to sleep well and the following morning walked willingly down to theatre the where I had a joke with the anaesthetist before he knocked me out.
I woke five and a half hours later in intensive care with tubes everywhere, feeling very tired but otherwise OK. The operation had been a success and no bowel surgery had been required. My scar ran from my breast bone down to my pelvic bone with about fifty staples holding the skin together. The next morning I was transferred back to my room and the day after that I was up walking about. Recovery was fast and in just six weeks, part of the scar was almost invisible, I had very little pain and I was able to walk several miles.
All visible disease had been removed, raising my five year survival chances from 20% to 70%, but I needed three more cycles of chemotherapy to destroy any microscopic areas of cancer. My surgeon had recommended that chemotherapy resume three weeks after surgery so once back home, I visited the oncology day area in the hospital with a view to arranging a date for my first session. My oncologist was on holiday so I had to see her registrar who told me that normal practise was to start chemotherapy between four and six weeks post-surgery. Besides, my consultant would not be available for two weeks. I was shocked; they knew I needed more treatment why hadn’t arrangements been made? The registrar, however, was quite concerned about my blood tests and that I was still complaining of a urine infection which had developed due to being catheterised post-surgery. She had quickly made arrangements for a hospital bed for intravenous antibiotic treatment. Again I was shocked; two days previously in Birmingham I was told my blood tests were fine. After a slightly heated discussion with the registrar, she looked at the computer screen again and realised the blood tests she was looking at were from the previous month! She backed down, gave me oral antibiotics and sent me home.
My liver, which was still recovering from the general anaesthetic and the surgery, was made even worse with the antibiotics. When I realised what was happening I stopped taking them immediately but it took two weeks to recover. As liver function needs to be normal before paclotaxol can be administered, this delayed the start of my chemotherapy. I was furious and the thought of going back see my negative oncologist filled me with dread.
I once again contacted the medic who had introduced me to my surgeon in Birmingham. We discussed the idea of me going to him for treatment but this seemed a little impractical due to the fact I would have to travel hundreds of miles for each session or live locally for nine weeks. Therefore, I asked if he could recommend a consultant near to where I lived. Upon his suggestion, and a referral letter from my GP, I attended a clinic at a hospital about fifty miles from home. The consultant oncologist was quite positive due to the fact my surgery had been a success. He assured me he would treat me in exactly the same way as my current oncologist so suggested it would be wise to continue my treatment close to home. However, we discussed the possibility of attending his clinic for follow up over the next five years. He explained I would attend every three months for the first two years and then every six months for the following three years. My local NHS trust would have to pay for the scans and assessments I would get with him but this could be arranged quite easily by the finance department at his NHS trust.
My last chemotherapy session will soon be administered so at this point in time I don’t know the outcome to my story. I don’t know if changing my diet or seeing a kinesiologist has helped me at all and I probably never will know. However, I am certain that the operation will at the very least give me more disease-free time and at best cure me. I also know that had I stayed with my local consultants I would not have been able to have the operation.
I have learnt many things from this experience and I hope my knowledge can help others in a similar situation. Take control of your illness. Be happy with your consultant; if not, go elsewhere. If you want a second opinion and don’t know where to go, ask friends and ask them to ask their friends; someone will have a contact. Speak to your consultant; make sure tests are being done as fast as they can be, make sure you are getting the best treatment available. It’s your life!
Unlike breast cancer, ovarian cancer has very little publicity; the signs and symptoms are not discussed. Indeed, there is no dedicated list of symptoms; all can be associated with other illnesses but be aware of them and be aware of the fact that very few GPs know the signs of ovarian cancer. If caught early, ovarian cancer has an 80% survival rate so get yourself checked out if you’re experiencing any of those early symptoms that I described.
Further information can be found on the webs site: www.cancerhelp.org.uk