An interview with an Ovarian Cancer sufferer who is now in remission
This year alone 68001 women in the UK will be diagnosed with ovarian cancer and each day 12 women will lose their life to the disease. Despite this, few women are aware of ovarian cancer and only 4% of women in the general public are confident that they would recognise any symptoms2.
When diagnosed early, women have a great chance of making a full recovery. Unfortunately, many women are not diagnosed until their disease has spread. At this stage ovarian cancer is much more difficult to treat and the outlook for women is often poor.
We interviewed a 50 year lady who works as a salon administrative assistant for a hairdressing academy. She was a sporty, fit and active mum of four when she was first diagnosed with Ovarian Cancer. Please read about her personal experience...
Q. How old were you when you were officially diagnosed with ovarian cancer?
A. I was 47 years old.
Q. How did you first become aware that something was wrong?
A. My first symptoms were quite innocuous and non-specific. About a year before I was actually diagnosed I began feeling inexplicably unwell. Before this time I was a rare visitor to my GP, in fact I had not been for three years. Suddenly I seemed to be at my GP surgery every other week. I was also very active, sporty and healthy. I was doing loads of cycling and running – half-marathon and 5k run. So I could not understand why I was feeling so rough. In fact the day before I went into hospital I did a 5 k run. I knew something was wrong but I just could not specify what it was and, it seemed, neither could my GP.
The first specific symptom that I had was when I started spotting blood. I had had a coil fitted three years earlier without issue. Then suddenly I got bad back pain, lower abdominal pain and cramping. This was the thing that really got me anxious.
To be fair my GP did try very hard to assist me for the year before I was diagnosed. I had multiple blood tests for thyroid, kidney and liver issues. I was also tested for the Menopause and Diabetes.
At first my GP thought it was the Menopause. Despite the fact that I felt so terrible for some reason this idea was just treated as a bit of a joke by the GP that informed me. Like it was something that I should expect at my age and that I should just get on with it. Unfortunately the symptoms of ovarian cancer are very similar to Irritable Bowel Syndrome and so my real diagnosis was missed. This seems to be one of the major issues with ovarian cancer. The early symptoms are so similar to many other conditions that appear a ‘more likely’ diagnosis that the ovarian cancer does not get diagnosed until it is too late.
Throughout all this process I began to get a bit desperate because I began to feel worse and worse. In total it took 12 months and all my determination to get a diagnosis.
My experience was that the male GPs in my surgery lacked awareness of the female experience around this issue and the Menopause and consequently handled it very poorly.
Q. What happened next?
A. I continued feeling rough through November 2007 to February 2008. In this period I had GP visits and a smear that showed up nothing unusual. Then, and I remember the date very well, I was lying in bed on 8 February 2008 in agony. I decided enough was enough and I had a feel around myself to detect exactly where the pain was so I could go in and ask the GP to tell me what this pain location could mean. As I examined my abdomen I was horrified to find a distinct lump. I got up and walked around a bit just to make sure it was really there but when it was still there when I lay down again I made an immediate appointment at my doctor's surgery. My GP then gave me an internal examination and confirmed my findings and got me a referral to the relevant consultant. I was able to elect my own consultant and hospital therefore I took this opportunity to elect to see a female Gynaecologist Dr Tripathy, by this time I had lost confidence in any male doctor to understand my issues. Dr Tripathy was absolutely fantastic with me and turned around my experience. She ordered the CA125 test and the ultrasound scan. By 27 March I was in hospital having a total hysterectomy.
Q. Describe the range of symptoms that you have experienced before diagnosis?
A. The symptoms ranged from:
- Sudden and unexplained tiredness and a general feeling of being jaded or hung over, all the time. Whenever I sat down I fell asleep even though I was fit and active.
- Bloating of my stomach and yet I was exercising more on more.
- Unexplained spotting, in between my periods.
- Lower back pain.
- Lower abdominal pain (like a constant period pain).
Q. What was the symptom that finally got your doctor to take your symptoms more seriously?
A. It was only when I found the lump myself that the GP finally took my symptoms more seriously. It had not occurred to him to consider ovarian cancer before this point.
Q. How long did it take from diagnosis until you were being properly treated for ovarian cancer by a specialist/Oncologist?
A. Three weeks.
Q. What was your individual diagnosis and prognosis?
A. I was told that I had a tumour that was one of the most common types of ovarian cancer called a Borderline tumour. This means that it was slow growing and Borderline tumours as their name suggests are of low malignancy potential. So the tumours had not yet begun to spread or damage the tissue around them. They are usually treatable by surgery alone.
I felt I was very fortunate that I only had to have surgery and I did not have to have Radiotherapy or chemotherapy. The tumours had not spread. However, this may sound strange but I actually did not realise that I had cancer at the time. I took the term Borderline to mean that I did not have cancer. It was such a stressful and traumatic experience that I do not think that I took it all in at the time. It was not until I had left the hospital that I then got letters inviting me to the cancer clinic that I found out that I had actually had Cancer.
Q. What was your experience of medical professional’s attitude towards and knowledge of the condition?
1) The GP
2) The hospital consultant
A. My personal experience with my male GP was poor.
The specialist hospital consultant experience was fantastic and I could not fault it.
All the other clinicians and health professionals I met throughout this process have been amazing.
I have changed my GP and my new male GP has also been amazing. So in retrospect it may just have been that GP rather than his sex or any other factor that affected my experience.
Q. What were the range of symptoms or side effects that you experienced during your treatment?
A. In many ways the worst part of my experience was post-surgery and the consequential impact of my ovarian cancer.
My surgery meant that I had to have a total hysterectomy to save my life and though I was told I would go into the menopause, I did not really understand what this would mean. Therefore I was completely unprepared for what actually happened.
The hospital was fantastic clinically but it had no official systems in place to offer any necessary emotional and psychological support for patients dealing with the sudden experience of the Menopause.
In addition there was absolutely no support for my husband. It turned out that he needed support as much as I did and there was nothing available
The biggest issue was that I was unable to take HRT, the most effective treatment for Menopause symptoms, due to the increased risk of Breast Cancer for Ovarian Cancer patients if they take HRT. We tried every herbal remedy in the book to no avail. I suffered terribly.
Q. How long did the treatment take for you?
A. With regard to the Surgery. I was in hospital for five days plus I had a six weeks recovery period plus a further six months off work – though I only took four months off for financial reasons.
I also have to undertake follow ups every three months at the Menopause and the Cancer clinic (this has been for the last two years).
Q. What were the worst symptoms or incidents that you have experienced during your illness, treatment and recovery?
A. Apart from the delay in my diagnosis it is definitely the Menopause symptoms that were the absolute worst.
Symptoms that I experienced were:
- Severe memory loss – if it was not written down then I forgot everything.
- Unbelievable mood swings, which were extremely difficult to handle.
- Horrendous hot flushes and sweating (mainly day and sometimes night times).
- Weight gain.
With all these symptoms, the more stress I was under the worse they got.
By far the worst outcome or incidents of this whole experience is what it did to my marriage. I had always had a very close and physically intimate relationship with my husband. We did everything together and he was my best friend. However, everything about our relationship gradually deteriorated during my ovarian cancer experience. This started pre-diagnosis, got worse during the surgery and recovery and then completely collapsed during the menopause. He simply could not cope with my symptoms and the impact is had on my behaviour (which was not my fault). He ceased to support me and actually began to make my symptoms worse. So for example he told me I was delusional when I could not recall things. I got very confused and upset as I feel he blamed me for my illness. Ultimately I moved out and now we are getting divorced. It is a source of great sadness for me after so many years of marriage.
Q. After your treatments finished, how were you able to cope, psychologically, with what you had experienced.
A. I have found it extremely difficult.
Q. What or whom do you think was the biggest assistance to help you cope?
A. The standard of medical treatment in the Hospital was fantastic, however there was and still is a complete lack of formal psychological support or counselling of any kind.
I changed my GP after my experience with my old Surgery. My new GP has been totally fantastic. I cannot fault the support and care he has given me. He ultimately got me referred to a Psychotherapist who works with the GP’s. She has been amazing for me.
It took six months after my treatment for the clinical nurses, at the cancer clinic to offer me a place in the COPES support group. This is group where cancer sufferers get an opportunity to talk to women who have had similar experiences. It has been an absolute godsend for me. At this group I also got given loads of therapeutic treatments – such as massages – which assisted with the stress and encouraged the relaxation that I needed.
Q. Are you still having any treatments of any form?
A. With regard to the ovarian cancer. I am now only having six monthly reviews at the Cancer clinic. This will continue for 5 years.
With regard to the Menopause. I am now taking HRT. About nine months after my treatment I broke down at the cancer clinic and they agreed that my quality life was so poor that I needed to do something. I did not care about the risks attached to taking HRT so I did what I needed to do. I am feeling so much better that I have no regrets about my decision regarding HRT. I am now able to begin exercising and, with the support of the rest of my family, my life is finally getting back to relative normality.
Q. Are you officially in remission/ have you been advised of your long term outcome/prognosis or are you totally cured from Ovarian Cancer?
A. I am pretty sure this is what has been said – though it was during the period of memory loss that I experienced that I was told this information. I also had a lower risk cancer and now my visits are only six monthly.
Even so I have had one scare during the last couple of years. I developed new symptoms, after the operations, which were similar to some of the symptoms I experienced when I first went to my GP with the ovarian cancer symptoms.
My new GP reacted really quickly and immediately referred me to the hospital – I actually went by ambulance from the surgery as I was in pain. The kept me in for investigations and I had a sigmoid scope procedure to look at my lower intestine. They also did another Ultrasound.
Ultimately the source of the pain turned out to be Diverticulitis, probably due to the scar tissue or the resettlement of my bowels following the surgery. Nonetheless it was still a scary moment and I do keep paying attention to how I feel and my body.
Q. Is there any history in your family of Ovarian Cancer or any related cancers, such as breast cancer?
A. No I do not think so.
Q. How have your close friends and family been affected by your experience with Ovarian Cancer?
My family and friends were very shocked but have all been fantastic and very, very supportive. When I was immobile they all came round and looked after me or took me out and about. My sister who lives close by made sure I got out. We now have started line dancing together. I am doing a woman versus cancer cycle ride in Kenya next year. My older sister has gone out of her way to drive me around to help me train for this cycle marathon/fundraiser.
I have four sons and they have all been totally lovely and supportive.
Q. How has your conditions affected your work and family life?
A. Initially my work was fine – I was in my probationary period when I was diagnosed and they still honoured my contract. I am very grateful for this.
During the surgery and post-surgery they were also really supportive.
However, once all the surgery and treatment for the ovarian cancer was over I feel that the support and understanding definitely waned. This may well be because they did not appreciate how horrific the menopause symptoms were for me or that I could not access the normal effective treatment. Of course the lack of support at work only increased my stress and then my symptoms. The lack of support has also filtered through to my follow up cancer clinics – which are also essential. My manager has asked me to change the dates or move them. This attitude has persisted even though I work loads of overtime without pay since my symptoms have improved. I feel that my managers resented the time I had had to take, through no fault of my own. I almost feel like they deem that I owe them for supporting me at all. Which is a sad state of affairs?
Q. Do you think there is sufficient awareness of the conditions amongst health professionals and the public? How would you like awareness to be raised?
A. My experience shows that there is not sufficient awareness amongst some GP’s and the public. Target Ovarian Cancer does an amazing job in raising awareness amongst the public. I am one of the many women who have experienced Ovarian Cancer who have joined Target Ovarian Cancer's Let's Talk Programme, to help raise awareness about this disease to the public, and amongst women in particular.
Q. What, if anything, do you think could be done to reduce or prevent the impact of Ovarian Cancer on women’s lives?
A. The biggest lessons I have learnt would be to tell the GP’s and the hospital consultants - “Do not just treat the ovarian cancer”. You must treat the other side effects of this condition as well.
For example – there is a definite need to provide emotional and psychological counselling for the women and their husbands. The men need help as much as the women to understand and survive this very difficult experience in their lives and their marriage.
There is also a need to have robust treatment and counselling services to deal with the Menopause as well. This had a much greater impact on me than the Ovarian Cancer operation itself. I have no idea how the women who have surgery, Chemotherapy and/or Radiotherapy cope with this and the Menopause simultaneously!
Q. What would be your advice to someone who recognises the symptoms and believes that they or someone they know may possibly be a sufferer?
A. If they recognise the symptoms, from reading my story and the Target Ovarian cancer website and their GP has not picked up on it, then do not leave your concerns in abeyance. They should go to their GP and request the CA125 and an ultrasound scan and explain your reasons clearly. Often Ovarian cancer is misdiagnosed as Irritable Bowel Syndrome – this is what delays treatment and survival for many women. So get the tests that can accurately and quickly diagnose the condition to get the relevant treatment. This could be the key to your survival. Remember I was only ok as I had borderline cancer and others have not been so lucky.
I repeat - do not let it go – you know your body best. Keep asking and do not let yourself be dismissed.
Also if you feel that your doctor does not understand what you are experiencing then ask to speak to another GP for a second opinion. Most partnerships will have a mix of male and female GP’s for you to access.
My hope is that talking about my story here will help raise awareness, even if it only helps one women get diagnosed early enough to survive ovarian cancer.
For help and support regarding Ovarian Cancer you could read the Ovarian Cancer article elsewhere in our website, click here, or may find the following links useful:
- Target Ovarian Cancer: http://www.targetovarian.org.uk/
- Cancer Research UK website: http://www.cancerhelp.org.uk/type/ovarian-cancer/
- Macmillan cancer care website: http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Ovary/Ovariancancer.aspx
- Action Ovarian cancer website: http://www.ovarian.org.uk/
References:
1. Cancer Research UK 2004, CancerStats report – Ovarian Cancer - UK, Cancer Research UK
2. The Target Ovarian Cancer Pathfinder Study: First Results 2009
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